Expert Q&A

Search our library of questions and answers below, or submit your own question to our panel of experts.

Most Recent

November 2017
Q: The medical field is growing and advancing rapidly through the years, how come the colonoscopy procedure is so invasive as well as the small bowel follow through? Are there diagnostic tests that are much easier on the patients and less invasive? What would be the worst case scenario if a patient were to refuse those types of procedures when suffering from Crohn's Disease?
A: Colonoscopy provides actual visualization of the inner lining of the colon (large intestine) and the end part of the small intestine and allows for biopsies to be obtained at the time of visualization. Reasons for assessing the lining of the colon and the end part of the small intestine in a Crohn’s patient include screening for colon cancer, assessing for Crohn’s healing, assessing severity and extent of Crohn’s, and at times endoscopic treatment of strictures. Small bowel follow through is an oral barium contrast x-ray test, the barium contrast ingested outlines the inner surface of the small intestine. Other similar tests that evaluate the small intestine include CT enterography and MRI enterography. In order to adequately visualize the gastrointestinal tract in radiologic imaging studies oral contrast is needed. Another method to evaluate the small intestine is by capsule endoscopy, a pill with a camera that takes pictures of inner lining of the small intestine. There are specific reasons to use one test over another and the test chosen is usually influenced by why testing is ordered. In a patient that has Crohn’s involving the colon and is due for colon cancer screening, colonoscopy is the only way to screen adequately for colon cancer. When evaluating for partial small obstruction due to Crohn’s, then radiologic imaging is needed rather than capsule endoscopy since a capsule would get stuck in the intestine. The worst case scenario if someone were to refuse testing depends on the reason for ordering the test.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
November 2017
Q: Before I was diagnosed with Crohn’s I already had a weak immune system. I’m about to start a biologic IV infusions. Should I be wearing a mask after my treatments to avoid getting sick or picking up germs?
A: “Biologic” medications used to treat Crohn’s disease are antibody’s to specific molecules in the immune system that are activated in Crohn’s. Although biologics are down regulating the immune system they are not as potent as chemotherapy used to treat cancers. There is no need to wear a mask when receiving these treatments. Standard precautions should be taken though, such as hand washing and minimizing direct contact with those that are sick. The Centers for Disease Control and Prevention (CDC) has tips on hand washing at: https://www.cdc.gov/handwashing/when-how-handwashing. I would also recommend making sure vaccines for the flu and Streptococcus pneumoniae are updated. Your gastroenterologist can help you determine which additional vaccines you need.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
November 2017
Q: I was diagnosed in 2013 (UC) and currently take Apriso. I was in remission for about 2 1/2 years. I had short-lived flares in 2015 and 2016 that responded to Canasa. Both flares happened around the same time (fall). I think that I might be at the beginning of another flare, and I noticed that it's the same time of year as the other flares. Is there any research to suggest a connection to flares and their recurrence at certain times of year (i.e. seasonal issues)?
A: A very interesting question, and yes investigators have evaluated whether there is a trend with flares occurring during certain times of the year and fluctuating by season. Studies have also looked to see if flares are occurring in a specific seasonal pattern for individual patients (i.e. one patient flares every fall, another patient flares every spring). So far there has not been a consistent finding in studies published on this topic.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
November 2017
Q: I've been taking 6MP for 10+ years, and it's been doing a good job of keeping my Crohn's in check. I recently started seeing a new GI who wants me to switch from 6MP to Remicade or Humira. He said tests are showing my inactive metabolic levels to be in the liver toxic range. I really don't want to do a Remicade or Humira-type drug at this time. Is 6MP truly toxic, and if so, is there another alternative drug besides Remicade or Humira?
A: 6-mercaptopurine (6MP) monitoring includes evaluating a complete blood cell count (CBC) and liver enzymes on a routine basis. If the liver enzymes are elevated from 6MP then usually a change is made such as a reduction in dose or stopping the medication. Sometimes the liver enzymes are elevated and may not be related to 6MP. High levels of the inactive metabolite, 6-MMP, of 6MP in the setting of elevated liver enzymes suggest 6MP is the reason. If the liver enzymes are not elevated and your Crohn’s is in remission then 6MP may not need to be discontinued. All immunosuppressants used to treat Crohn’s have potential benefits and also potential low risks. In addition to infliximab (Remicade ®, Inflectra® ) and adalimumab (Humira®) other medications for Crohn’s include certolizumab (Cimzia®), ustekinumab (Stelara®), vedolizumab (Entyvio®), and methotrexate.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
November 2017
Q: I was diagnosed in May 2016 with Crohn's and take Imuran and Remicade. I am having a hard time sorting out if my meds are causing side effects. I got my maintenance infusion one day and the next day developed a severe headache, flushing, nausea. The acute headache has subsided but I still do not know if this is coincidence or am I not tolerating my meds. Can the medication be causing these symptoms?
A: Occasionally Remicade® can cause an infusion reaction at the time of the infusion or a delayed reaction. More typical symptoms of a delayed reaction include joint pain, abdominal pain and nausea. Other symptoms certainly may occur. Some symptoms may be prevented by giving medications such as acetaminophen (Tylenol ®), diphenhydramine (Benadryl ®), and corticosteroids (methylprednisolone, prednisone, or hydrocortisone) prior to the infusion of Remicade ®. I recommend discussing the symptoms with your treating physician.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
November 2017
Q: My husband takes Remicade Infusions every 8 weeks for his UC. He has been complaining of sore muscles, achy joints and tired all the time. He has no sex drive. Is there something we can do for these side effects?
A: Occasionally Remicade can cause delayed reactions that can include symptoms of sore muscles, achy joints and fatigue. Delayed reactions can occur up to 2 weeks after an infusion. Sometimes steroids given prior to an infusion and for several days after an infusion may prevent a delayed reaction. If symptoms are occurring all the time, evaluation for drug induced Lupus is also recommended. Generally the treatment of drug induced Lupus is stopping the offending medication. I recommend discussing the symptoms with your husband’s treating physician.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
November 2017
Q: I am 35 and had Crohn’s since age 20. After 12 yrs on Pentasa I was switched to Humira 3 yrs ago. It worked great with no side effects and I thought the CD was in remission until being hospitalized with an abdomen abscess infection. I’m on strong antibiotics with 3 weeks to go. After the antibiotics the doctors will figure out what treatment to use going forward. GI says there's indications of fistula. I want to avoid resection surgery. Are there treatment options other than surgery?
A: If there is concern that the abscess will not completely resolve and the area of Crohn’s is short segment of intestine, then surgery generally is preferred since it minimizes significant complications down the road. If the abscess resolves, then medications that can potentially treat your Crohn’s and fistula can be tried. These medications include Remicade ® and 6-mercaptopurine (or azathioprine). In addition to medical therapy sometimes, bowel rest and total parenteral nutrition are also recommended to help heal fistula and Crohn’s.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
November 2017
Q: How common are emotional problems while on biologic medication? I’ve been on a biologic for 3 years and I've experienced severe mood swings and deep depression and feel like I'm not myself. I get angry for no reason and am very irritable and I cry all the time. I need to take this medicine because I have severe Crohn’s but I can't take the emotional side effects anymore.
A: Emotional problems related to being on a biologic are not commonly reported in the literature. However, there are many other factors to consider in terms of mood and the complexities of having IBD. If you are feeling significant changes in your mood (i.e. depression, anger, anxiety, etc), you should address this quickly with your primary care provider or your gastroenterologist. Working with your providers to assess mood, the factors that may contribute and how to stabilize your emotions is important! They may recommend a review of your medications, a consultation with a mental health provider and/or an assessment with a psychiatrist. You must be your own best advocate. It is necessary to speak regularly with your providers about not only changes in your physical health, but changes in your emotional and mental health. This ensures that you are receiving the right care from a variety of specialties to address all aspects of your health.
ANSWERED BY:
Expert Image
Megan E. Riehl, PsyD
Clinical Health Psychologist, University of Michigan Health System
October 2017
Q: I have Crohns with strictures all over small and large bowel. I have been taking Mesalamine and Imuran. I will be having an MRI soon to check if there is improvement. Is there anything I can do in terms of Diet and Lifestyle to help heal the strictures?
A: This is a great question – the answer will really depend on where the stricture is located, how many, how tight they are and if there is an active inflammatory component to them or are they the result of chronic changes from disease activity. The recommendations we make for people with Crohn’s disease strictures is to make sure that they are careful about fiber intake and higher-residue food intake. Working with a registered dietitian can help identify a dietary strategy that factors in personal preferences but also safe foods. We recommend small frequent meals, chewing food well, eating slowly, and monitoring for vitamin and mineral deficiencies that can occur due to a restricted diet.
ANSWERED BY:
Expert Image
Christina Ha, MD
IBD Center Cedars-Sinai Medical Center
October 2017
Q: Does Crohn's Disease affect your menstrual cycle? I used to have regular cycles but for the past two years I have had about 4 cycles. Could the change be caused by the Remicade or steroids I'm on?
A: Crohn’s disease – particularly when it is active with associated weight loss, anemia, and decreased nutrition can result in abnormal menstrual cycles or missed cycles. When the anemia, inflammation and weight are corrected, the cycles do tend to return. The medications used to treat Crohn’s disease don’t typically have a direct effect on the period. However, I would definitely discuss this with your gynecologist to make certain there aren’t other additional issues such as endometriosis or fibroids or hormonal changes that can result in abnormal periods.
ANSWERED BY:
Expert Image
Christina Ha, MD
IBD Center Cedars-Sinai Medical Center
October 2017
Q: If a patient has been on Azathioprine and balsalazide for 15+ years. What blood tests should be performed for routine monitoring? My husband's GI has been just doing a CBC, but as a result of his yearly physical lab report (with family practice dr.), we learned he has liver impairment. Are regular liver tests standard if you take Azathioprine? Should I be concerned about the level of care he's receiving from his current GI doctor?
A: Thanks for the question – monitoring while on medications is important as we can sometimes pick up on subtle changes and act on them before they become a problem. Balsalazide is generally a very safe and well tolerated medication and doesn’t require strict monitoring like some of the other medications. We do recommend checking kidney function through bloodwork at least every year with something called a metabolic panel or profile. This is because there is a rare condition called acute interstitial nephritis associated with this class of medications – I have to emphasize that this is really uncommon, but it’s simple enough to check kidney function annually with blood work, especially if you are taking other medications that can affect the kidneys or have conditions affecting the kidneys (but you are probably already being monitored for that already. With respect to azathioprine, we do recommend getting routine bloodwork – depending on how long and how stable the dosing regimen has been, it can be every 3-6 months. In my practice, I check a CBC (complete blood count) to monitor the White blood cell count number, which can occasionally be low while on the medicine; the Hemoglobin/Hematocrit (which helps us look for anemia), and the platelets which are a subtle and non-specific marker of inflammation. I also check what’s called a complete metabolic profile to check kidney and liver tests, azathioprine can sometimes increase the liver numbers, so we monitor that as well. Also, we recommend at least annual skin exams while on azathioprine, sun protection and to reapply given the association with an increased risk of skin cancer.
ANSWERED BY:
Expert Image
Christina Ha, MD
IBD Center Cedars-Sinai Medical Center
October 2017
Q: I'm 25, have Crohn's Disease, and am currently regulating it with diet as I didn't respond well with the different medications. I get sores in my mouth during flare ups, but this time is the worst I have ever experienced. I have sores all along my jaw and cheek inside mouth causing a pretty swollen cheek. It's been like that for almost 2 weeks now. Any suggestions on what to put on the sores or how to get inflammation in cheek to go down?
A: My first thought when reading this is that you may have active Crohn’s disease as oral aphthous ulcers tend to be present during active disease. The first thing I would recommend is to get an evaluation of your disease activity. In terms of addressing the symptoms, mouthwashes or rinses that contain steroids and analgesics such as viscous lidocaine are temporizing measures but treatment of the underlying issue is the key. If there isn’t active Crohn’s disease, other causes can be vitamin/mineral deficiencies – zinc, iron, b12, etc, or viral infections or other autoimmune conditions such as Behcet’s disease. However – I suspect that your Crohn’s disease isn’t as well controlled as it should be and would recommend an evaluation, particularly if you are this symptomatic.
ANSWERED BY:
Expert Image
Christina Ha, MD
IBD Center Cedars-Sinai Medical Center
October 2017
Q: My son has Crohn's and was on Remicade+MTX from past 5 years. He started with flare-up recently but his Remicade blood levels were normal with no antibodies detected? What does this mean? His blood tests and endoscope showed elevated Eosinophils. Colonoscopy showed inflammation in colon. Does it mean the Remicade became ineffective even with no antibodies? Or could it be due to any other infections or food allergies?
A: It depends on how “normal” the levels are – during active disease, sometime patients require higher dosing and adjustments to still keep them therapeutic. For example, therapeutic is a value > 5, but if someone is symptomatic with a level of 6, they may do better with higher dosing or shortened intervals. If the levels are an acceptable level and there is active disease, then this means that he likely lost response to Remicade/MTX combination – meaning, in simple terms, that his Crohn’s disease outsmarted the medications and he would potentially be better with a medication that works in a different mechanism of action such as vedolizumab (Entyvio) or ustekinumab (Stelara). However, discuss this with your gastroenterologist first.
ANSWERED BY:
Expert Image
Christina Ha, MD
IBD Center Cedars-Sinai Medical Center
September 2017
Q: I have Crohn’s Disease and was told I was non active. Is this different from remission? If so, how?
A: Hard to Say. Today the goal is to treat to target. Target is defined as clinically inactive (clinical remission) as well as endoscopically normal. Clinical inactivity is measured by 1) absence of symptoms, 2) normal biomarkers (CRP and fecal calprotectin) or 3) CDAI score of 150 or less. Clinical inactivity, does not correlate with endoscopic activity. Remission implies clinically inactivity and endoscopically inactive.
ANSWERED BY:
Expert Image
Eugene Greenberg, MD, F.A.C.P., F.A.C.G.
Carle Physician Group Urbana, IL
September 2017
Q: I was recently diagnosed with Crohns Disease. My symptoms right now are very mild. Does the disease always at some point get worse? Will surgeries at some point always be needed? Also with my symptoms being so mild now would a stronger drug like Humira be best suited for me to start taking now?
A: Good Question. Prior to the use of biologic agents, studies have shown that in spite of treatment, 80-90% of patients with Crohn’s Disease, will have had surgery over a period of 30 years and many would have had several operations. Since the use of biologic agents (Remicade and Humira) we feel that the natural history of Crohn’s Disease can be changed and surgery averted. The earlier these biologic agents are used, the more likely to prevent complications (stricture and fistulae) which require surgery. Today when patients are first seen, we evaluate activity of flares, as well as the severity of the disease (its longitudinal course of the disease) and if the disease is deemed to be severe, biologics started early may prevent complication that lead to surgery.
ANSWERED BY:
Expert Image
Eugene Greenberg, MD, F.A.C.P., F.A.C.G.
Carle Physician Group Urbana, IL
September 2017
Q: I cannot tolerate sulfur medications so I was on 6-MP from 1973 until May 2017. I switched to Humira because the number of Squamous cell cancers I had increased to over 10 per year. I was just diagnosed with Melanoma which the oncologist believes it started before the Humira. I am looking for alternatives to both 6 MP and Humira. What are treatment options for CD following a Melanoma diagnosis? Are they any clinical trials or new medicines that may be appropriate?
A: The use of immune modulators, such as 6mp and azathioprine have been associated with up to a tenfold increase in non-melanoma skin cancers. The anti TNF biologics (Humira and Remicade) may be associated with a very slight increase in melanoma skin cancers. Use of other agents will depend on the stage of melanoma and the surgery that was done. Generally, methotrexate has not been associated with lymphoma or solid cancers and the newer drugs such as Vedolizumab (Entyvio) and Ustekinumab (Stelara) have not been associated with increase in melanomas. Entyvio is gut specific and probably the safest alternative.
ANSWERED BY:
Expert Image
Eugene Greenberg, MD, F.A.C.P., F.A.C.G.
Carle Physician Group Urbana, IL
September 2017
Q: I have had Crohn’s since 2009 and have an anal fistula. I have been on Imuran, Pentasa and had an allergic reaction to Humira injections. I had an allergic reaction at the injections site but the injection did work. Would this response make me allergic to all TNF Blockers? What would be the next course of action besides surgery?
A: Local reactions to Humira injections would not prevent you from using Infliximab (Remicade) which is given by I.V. Remicade is the only drug shown in double blind studies to be effective in healing fistulae. In addition, use of antibiotics (cipro or flagyl) and Methotrexate can be used in combination, and insertion of setons and drainage of abscess is important. Most important is cooperative treatment with colon and rectal surgeons to be successful in treating fistulae.
ANSWERED BY:
Expert Image
Eugene Greenberg, MD, F.A.C.P., F.A.C.G.
Carle Physician Group Urbana, IL
September 2017
Q: Can using Remicade or other biologic contribute to developing warts on hands and feet?
A: Use of Remicade and other biologic agents have not been associated with developing warts on hands and feet.
ANSWERED BY:
Expert Image
Eugene Greenberg, MD, F.A.C.P., F.A.C.G.
Carle Physician Group Urbana, IL
August 2017
Q: I was diagnosed with ulcerative colitis in 2013 and then indeterminate colitis in 2015. I was put on prednisone and azathioprine. My doctor left and I was sent to a new doctor. They ordered colonoscopy and CT which came back showing no IBD. Can this happen because of the medication? All previous scopes, biopsies, and scans since 2013 have come back positive for IBD. I am very confused. Is it possible to get different diagnosis over time?
A: This is a very interesting thing that we have been seeing in some patients. We call it histologic normalization. We recently published something from the University of Chicago with our findings in many patients. See link below. Overall conclusions here: https://www.ncbi.nlm.nih.gov/pubmed/28238954. Histologic normalization of colonic mucosa can be used as a clinical endpoint for patients with UC. We associated histologic normalization with increased odds of relapse-free survival compared with endoscopic healing or histologic quiescence. Further studies are needed to determine whether histologic normalization should be a goal of treatment for patients with UC.
ANSWERED BY:
Expert Image
Jami Ann Rothe Kinnucan, MD
Clinical Lecturer
August 2017
Q: I was recently prescribed 1g Asacol foam enema. I was on the Salafolk ones for about a week but I was told it was the same stuff so didn’t really worry. I’ve been having a tougher time with these Asacol ones. I just can’t seem to hold them in as long, some nights they seem to come out right away. My usual time of holding them in at the moment is about an hour before I need to go. Is this enough time for the medicine to work?
A: Typically the foam based formulation is easier to hold than the liquid formulation. It should get better the longer you are on therapy. If it is not improving, I would discuss with your physician about a change of the formulation back to the liquid if that was easier to hold.
ANSWERED BY:
Expert Image
Jami Ann Rothe Kinnucan, MD
Clinical Lecturer
August 2017
Q: I’ve looked at the drug profile for ulinastatin and it seems as though it would be a good fit to treat severe, refractory Crohn's disease. It may also stave off fibro stenosis for those with a stricturing phenotype administered post-op following resection. I wonder why more studies haven't been conducted? What are your thoughts on this as a treatment option?
A: This is not a therapy I had heard of until this question. I was able to find a few in vitro studies, but no clinical trials are currently being conducted. I have passed this along to our clinical trial team as they may have more information. I am sorry I don't have more information for you. http://onlinelibrary.wiley.com/doi/10.1111/j.1744-9987.2011.00967.x/full#references
ANSWERED BY:
Expert Image
Jami Ann Rothe Kinnucan, MD
Clinical Lecturer
August 2017
Q: I was diagnosed with Colitis last year. I was first prescribed Pentasa and now Mezavant both started to work for 3 months but not anymore. While on both medications I found sex painful. I went to see a Gynecologist who told me that there was a lump on the left side where I felt the most discomfort. Could my colon be inflamed? I'm lost as to what doctor to see and what my options might be.
A: If your gynecologist felt a lump they should have followed this up with an ultrasound. It is possible that your colon is inflamed making intercourse painful. I would follow-up with your gynecologist and your gastroenterologist to ensure that you have healing on these medications.
ANSWERED BY:
Expert Image
Jami Ann Rothe Kinnucan, MD
Clinical Lecturer
August 2017
Q: I was diagnosed with CD 10 years ago at age 26. The disease is classified as mild to moderate to date. I have managed it with only two antibiotic courses as treatment. My doctor wants me to treat the disease when most days I don’t think my symptoms warrant treatment. In addition the treatments risks don't seem to outweigh the benefits for me. How do you make the decision what treatments are better than the disease itself and which treatments are best for mild to moderate case of Crohns?
A: Mild to moderate Crohn's disease should be treated. As even when you don't have symptoms you likely have ongoing inflammation what we call "subclinical" inflammation. If your disease mild to moderate depending on the location of the disease and whether you have any stricturing or abscess/fistula there are multiple medications that can be recommended. You should follow-up with your gastroenterologist to discuss treatment options. Untreated disease overtime can require surgery, medications prevent surgery and progression of disease including colon cancer related to Crohn's disease in the colon.
ANSWERED BY:
Expert Image
Jami Ann Rothe Kinnucan, MD
Clinical Lecturer
August 2017
Q: I have not had a bowl movement in almost a week. Can this be a problem associated with Crohn’s Disease? What should I do?
A: Constipation can be associated with Crohn's disease. However this type of problem should be evaluated with your provider.
ANSWERED BY:
Expert Image
Jami Ann Rothe Kinnucan, MD
Clinical Lecturer
August 2017
Q: I've been on sulfasalazine for 22 years with no problems. My uc has never been severe as far as my symptoms. At 62 years old, I'd like to stay on sulfasalazine. After my recent colonoscopy my GI wants to try Entyvio. I'm very reluctant and can't figure out why. My former GI retired and this is a young new GI. Not doubting his experience but I'm leaning toward staying with sulfasalazine. Are there any long term side effects of sulfasalazine that would justify my GI changing to Entyvio.
A: Since your diagnosis we have changed the way we manage disease. While sulfasalazine is a very effective therapy to manage ulcerative colitis, I assume that your new provider found active inflammation on your colonoscopy (despite you feeling well), we call this subclinical disease. Currently our goals are to treat to mucosal healing which means you feel well and your colon looks healthy. Entyvio is a safe therapy that only impacts the immune system in the gut. If your provider is recommending escalation of therapy it is likely due to the fact you have ongoing inflammation in your colon. I would address your concerns about the new therapy with your new provider or seek a 2nd opinion.
ANSWERED BY:
Expert Image
Jami Ann Rothe Kinnucan, MD
Clinical Lecturer
July 2017
Q: Can Crohn's Disease or Humira or both be linked to gum disease and skin abscesses?
A: Good question. Crohn’s disease can be associated with gum disease. Gum disease would not be a common association with Humira. With regards to skin abscesses, if you’re referring to abscesses around the anal region, then Crohn’s disease (but not Humira) can definitely be associated with this. As far as skin abscesses on other parts of the body, this can occur with immune suppression of any kind including Humira. If your gastroenterologist has not evaluated the skin sores already, it would be a good idea to speak to him/her.
ANSWERED BY:
Expert Image
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
July 2017
Q: I have Crohn's Disease and sometimes develop canker sores that form on the tongue, lips, and gums. Can you explain what they are and how they are treated?
A: Crohn’s disease, either directly or indirectly can cause oral sores. Oral sores are rather common, present in 20-50% of Crohn’s disease patients. The sores are generally just breaks in the lining of the mouth that result in an ulcer. Since Crohn’s disease can affect any part of the gastrointestinal tract from your mouth to the anus, these sores may be a result of the disease. Crohn’s disease can also result in nutritional deficiencies (i.e., folic acid and other B vitamins) that can make a patient more prone to mouth sores. Additionally, methotrexate, a medication used in Crohn’s disease, is a common culprit for mouth sores. Generally, if the sores are from Crohn’s, treatment of the Crohn’s itself can causing healing of the ulcers. If you’re taking methotrexate, you can increase the amount of folic acid taken on the day of the methotrexate itself (to say 5 pills that day). If neither of these are the issue, your doctor can evaluate for nutritional deficiencies that may be playing a role.
ANSWERED BY:
Expert Image
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
July 2017
Q: I was told one year ago that I had ulcerative colitis. Is constant pain, cramps and an extended abdomen common symptoms of the disease?
A: Ulcerative colitis can present with a variety of symptoms including abdominal pain and bloody diarrhea. However, symptoms don’t always indicate that the ulcerative colitis is active. The reason is that several other disorders can also cause the symptoms your describe. Your doctor through various objective tests (i.e., imaging, endoscopy, and labs) can determine if it is your ulcerative colitis or another disorder that is contributing to your symptoms.
ANSWERED BY:
Expert Image
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
July 2017
Q: How definitive is a diagnosis of Ulcerative Colitis? I have been in remission for 11 years, and have not taken any medication for 5 years. Does it make sense to get reevaluated to see if this diagnosis can be removed from my medical history?
A: Thanks for your question. Without seeing the records, your first question is a difficult one to answer. Occasionally, the diagnosis of ulcerative colitis may be more difficult to make. Having the diagnosis of ulcerative colitis in your records can be challenging for several reasons. If you have no symptoms and your colonoscopy continues to show no active colon inflammation, then your disease may be in remission. I would discuss the validity of the ulcerative colitis diagnosis with your gastroenterologist who has access to your previous records.
ANSWERED BY:
Expert Image
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
July 2017
Q: I am 40 years old and have had ulcerative colitis for 30 yrs. I've been on 5ASAs most of the time with Prednisone to help on the occasional flare-up (once every few years). Recently flare ups have been coming back more often (2 flare ups in the last 9 months) and my doctor wants me to change to a stronger medication. He has suggested either 6MP or Humira. Does one work better in terms of response, safety and side effect? How do I choose one over the other?
A: Great question. The side effect profile and safety issues for 6-MP and Humira are actually very similar. 6-MP is typically started with prednisone because it takes 2-3 months to work. Humira usually starts working in 4-6 weeks and may require a shorter course of prednisone before it kicks in. As far as which agent is more effective, this may vary from patient to patient. In general, Humira appears to be more effective. The choice of one over the other really depends on multiple factors including choosing between injections vs. pills, the labs sent prior to starting these therapies, and insurance coverage.
ANSWERED BY:
Expert Image
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
July 2017
Q: I have had a rash around my mouth and now has moved around my eyes for about 9 months now. The doctors thinks it is perioral dermatitis, but they aren't sure? I have been on remicade for about two years and currently on prednisone to reduce lip swelling and the rash goes away. The rash comes right back after I’m off the prednisone. How can this condition best be treated?
A: Thanks for your question. I would see your primary care doctor and perhaps a dermatologist as the rash could represent other diseases apart from inflammatory bowel disease. After you obtain a more formal diagnosis of the rash, a better treatment regimen may be recommended. Staying on prednisone for the rash is not the ideal treatment strategy.
ANSWERED BY:
Expert Image
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
June 2017
Q: My son has Crohn's and IBS. We have started really focusing on his diet, more veggies less meat and clean, no preservatives. Is there a certain diet that is better than others?
A: Diet and nutrition definitely are important in IBD management. However, more research is needed to better understand the impact of specific foods and diets. One interesting study that recently came out (though looking more at UC patients) showed that patients who ate more dairy based fats or coconut oil were more likely to have a flare. There is also some basic science data to suggest that red meats are more pro-inflammatory and foods with emulsifiers (found in certain processed foods) can breakdown the mucous layer that protects the gut. There is also great interest in the Specific Carbohydrate Diet (SCD) which is about to be formally studied in a trial sponsored by the Crohn’s and Colitis Foundation. Ultimately, each person’s case is different and one food or diet that may improve or worsen symptoms for one patient may not work for another patient. I frequently recommend consultation with an experienced nutritionist to my patients.
ANSWERED BY:
Expert Image
Ryan C Ungaro, MD
Gastroenterologist, Assistant Professor, Gastroenterology The Mount Sinai Hospital
June 2017
Q: Is there any treatments for healing fistulas besides Remicade?
A: Yes, other anti-TNF agents such as adalimumab can help treat perianal fistulas. There is some data from the recent national gastroenterology meeting that ustekinumab can help heal fistulas as well and some data on vedolizumab. Recently, studies on stem cells that are directly injected into fistulas show a lot of promise. In severe cases, surgery can be needed.
ANSWERED BY:
Expert Image
Ryan C Ungaro, MD
Gastroenterologist, Assistant Professor, Gastroenterology The Mount Sinai Hospital
June 2017
Q: Are there any drugs besides Biologics that are being investigated?
A: Yes there are new oral drugs that are in late stage trials or likely soon to be approved. For ulcerative colitis, tofacitinib is a small molecule that blocks inflammation through the JAK pathway and may be approved by the FDA soon. For Crohn’s disease, mongersen is an oral agent that works locally in the intestine to alter inflammation through a novel target in the TGF beta pathway. This drug is in phase 3 trials currently.
ANSWERED BY:
Expert Image
Ryan C Ungaro, MD
Gastroenterologist, Assistant Professor, Gastroenterology The Mount Sinai Hospital
June 2017
Q: I'm 15 and in high school. I wanted to know if I can get some advice on how to handle my Crohn’s symptoms in school. How to deal with embarrassing situations of needing to go to the bathroom in school and in public.
A: Proper preparation can help with the stress or anxiety of a potentially embarrassing situation. Make sure you have an “emergency kit” in your locker or school office. Tell a trusted friend or teacher where you keep it, in case you need someone to bring it to you in the bathroom. Common items for the kit include: wet wipes, underwear, pants or leggings, large size freezer bag to transport soiled clothes, hand sanitizer and perhaps some Poo-Pourri or air freshener. It is important to remember, you may NEVER need these items, but it can feel reassuring to know they are available. In terms of frequent or urgent bathroom use, speak to your teachers about your IBD and let them know you may need to leave the classroom without permission or a pass. If they know ahead of time, this can take away the focus of your bathroom use and normalize the experience. It is important to de-stigmatize your IBD and therefore, talking with friends and teachers can help them to understand your needs and provide you with support when needed. There are also options for accommodations through the 504 Plan that you, your medical provider, teachers, parents can develop if your IBD and treatments are affecting your school performance or experience. For example, you may be able to “stop the clock” during exams if you needed to use the bathroom. There can even be ways to keep an emergency kit in or very close to the school bathroom you use. It's important to remember that stress doesn’t help anything. Therefore, if you are feeling embarrassed, reach out for support. Often times we experience more anxiety related to the possibility of a situation happening, and forget that whatever you are faced with…you will be able to cope. Having a good support network can make coping much easier. For additional information about being a teenager with IBD, check out: http://www.crohnscolitisfoundation.org/assets/pdfs/teenguide.pdf
ANSWERED BY:
Expert Image
Megan E. Riehl, PsyD
Clinical Health Psychologist, University of Michigan Health System
June 2017
Q: My Daughter is 13 and was diagnosed in March 2017 with very aggressive CD. She is on Remicade, Metronidazole, steroids and an antibiotic. She has a persistent cough that usually makes her throw up. What are some treatment options to get rid of the cough?
A: There seem to be 2 questions here, first, why does your daughter have a persistent cough, and second, how can it be treated. I would suggest that the first is the more critical question to address as the second will almost certainly depend on it. A cough is quite non-specific as it may reflect active infection, non-infectious inflammation or injury, hypersensitivity following acute illness, or tic-like behavior among others. The association with the vomiting is not too helpful in differentiating as while some coughs are classically associated with vomiting, some individuals simply vomit due to stimulation of the gag reflex while coughing. Important questions to consider would be duration of the cough, presence of cough while asleep or not, associated features of illness such as fever, fatigue, or weight loss, and travel or sick contacts leading up onset of the cough. As you mention both metronidazole and an antibiotic, I’m curious whether you meant to write methotrexate- the reason I point that out is that methotrexate has rarely been associated with inflammation in the lungs. Inflammatory bowel disease on its own may also lead to inflammation in the lungs as well, and being on multiple medications that suppress the immune system such as steroids and Remicade further increase the risk of infection. All that said I would say the most important thing would be to make sure you communicate the presence of the protracted cough to your daughter’s physician. If ultimately it is simply a cough without associated inflammation or infection there is unlikely to be any particular medication to prescribe, but breathing exercises and other relaxation techniques may be helpful in enabling a degree of suppression.
ANSWERED BY:
Expert Image
Oren Koslowe, MD
Pediatric Gastroenterology, Atlantic Health System, Goryeb Children's Hospital
June 2017
Q: My 15 year old son was diagnosed with Crohn's in early May. The doctor started him on Pentasa but he developed hives all over body. They took him off Pentasa and started him on Prednisone. He is taking Benadryl for the hives but they have not stopped. He is also on VSL3. I'm wondering if VSL3 could cause the hives or do we just need more time for the Pentasa to get out of his system.
A: Significant skin reactions, while relatively common with sulfasalazine, are uncommon with mesalamine (Pentasa). When skin eruptions are related to a particular medication, discontinuation of that medication is the most effective therapy. It can be very difficult to determine the specific cause of hives, but I would not expect persistent hives, especially after receiving steroids and Benadryl, if Pentasa were the sole cause. There are a number of skin conditions associated with Crohn disease and it would be important to follow-up with your son’s gastroenterologist or dermatologist to ensure that what is thought to be hives is not actually something else. With respect to the VSL#3, it’s difficult to say; if it was started around the same time as Pentasa and around the same time as the eruption of the hives it would seem reasonable to trial off it as well.
ANSWERED BY:
Expert Image
Oren Koslowe, MD
Pediatric Gastroenterology, Atlantic Health System, Goryeb Children's Hospital
June 2017
Q: My 13 year old daughter has crohn's disease, she was diagnosed 2 years ago after we noticed she wasn't growing. She in basically in remission with the help of her Remicade infusions every 6 weeks. She has been getting these infusions from an outpatient hospital setting and now our insurance notified us that we now have to do at home infusions for her. Is there a risk in doing infusions at home instead of outpatient? How do we find a home infusion service in WI?
A: It’s a bit difficult to answer this question as I am in different region of the country. That said I have many patients receiving home infusions of Remicade who are doing very well and love the convenience of it. There do not have to be any inherent risks in having home infusions versus outpatient infusions assuming you have experienced professionals administering the medication who are prepared to deal with the possibility of allergic/infusion reactions; however, that is quite an assumption. I would suggest touching base with your insurer to see which home infusion companies are available, and then reach out to your physician to see if they have any experience working with any of those companies. Be aware that some insurers may “require” home infusions in theory, while in practice the local infusion companies may not provide services for children- if that is the case some “education” of the insurer may be necessary.
ANSWERED BY:
Expert Image
Oren Koslowe, MD
Pediatric Gastroenterology, Atlantic Health System, Goryeb Children's Hospital
June 2017
Q: I'm 16 years old and I was recently diagnosed with Crohn’s Disease in early May. I have been experiencing what they call "moon face" due to the prednisone I've been taking. Is there any way to reduce the swelling? I will start my Remicade infusions soon and I was wondering about the side effects of the medication.
A: You raise an excellent question and one that is bothersome for many. As you seem to be aware, what is described as a “moon face” is a recognized side effect of prednisone. Unfortunately, I am not aware of any way of addressing this aside from coming off prednisone. It sounds like a plan is already in place to start treatment with Remicade which should allow for relatively rapid tapering of the prednisone.
ANSWERED BY:
Expert Image
Oren Koslowe, MD
Pediatric Gastroenterology, Atlantic Health System, Goryeb Children's Hospital
May 2017
Q: Are FMT clinical trials only available for people with c-diff and uc? How can I find a clinical trial for FMT for UC?
A: Currently Fecal Microbiota Transplants (FMTs) are only allowed for treatment of certain C. difficile infections. However, there are ongoing studies of FMT for Crohn's disease and ulcerative colitis, as well as other conditions. Those registered in the United States are listed on www.clinicaltrials.gov. Some studies which are taking place abroad are also listed on this website.
ANSWERED BY:
Expert Image
Lea Ann Chen, MD
Assistant Professor, Department of Medicine, NYU Langone Medical Center
May 2017
Q: What are the research finding for probiotic VSL#3 for Crohn’s and Colitis. Has this been successful for patients?
A: On the whole, studies of probiotics for IBD have been disappointing. This may partially be attributed to the small sizes of the studies, and the varied doses and types of probiotics studies which makes it hard to aggregate studies for comparison. With that being said, almost universally, studies have shown there are no to minimal adverse effects from taking probiotics, so I don't discourage my patients from trying them as long as (1) they can afford them and (2) find them helpful. Of the studies that have been done, some of the most promising are those for VSL#3 for use in IBD patients with pouchitis. Even then, the studies were small and results were varied.
ANSWERED BY:
Expert Image
Lea Ann Chen, MD
Assistant Professor, Department of Medicine, NYU Langone Medical Center
May 2017
Q: Is skin cancer a risk with Remicade too or just the 6M?
A: There are some studies that have suggested that TNF-inhibitors (such as Remicade), can increase the risk for skin cancers – in particular non-melanoma skin cancers. However, some of the studies are conflicting, in part because patients on anti-TNF inhibitors are often other medications such as thiopurines (e.g. 6-mercaptopurine and azathioprine) which can also increase the risk of skin cancers. Further some studies have shown that having IBD (in and of itself) may increase the risk of skin cancers. While we await further studies to clarify this topic, I that IBD patients protect their skin by avoiding excessive sun exposure and wearing daily sunscreen, and for my patients on TNF-inhibitors and thiopurines I also recommend annual skin cancer screening exams.
ANSWERED BY:
Expert Image
Lea Ann Chen, MD
Assistant Professor, Department of Medicine, NYU Langone Medical Center
May 2017
Q: LDN (Low dose Naltrexone) has been a game changer for my 14 year old daughter with Crohn's. Is LDN considered a promising treatment options for Crohn’s & Colitis patients?
A: Early studies for the use of low dose naltrexone in Crohn’s disease have been promising. However, these studies have either been very small in size or designed with a comparison arm. Before it can be considered as a more mainstream treatment, more studies need to be done.
ANSWERED BY:
Expert Image
Lea Ann Chen, MD
Assistant Professor, Department of Medicine, NYU Langone Medical Center
April 2017
Q: I have Crohn's Disease and I’m having a hard time coping with this disease. My furry friends are the only ones that are interested in hanging with me in the bathroom and stay with me while I am in flare up mode. Is it possible to get a service dog with a condition like CD? How do I go about getting a “service animal”?
A: There are many ways to gain emotional support when coping with a chronic illness and an emotional support animal may be one avenue. It would likely be easiest for you to get approval for an emotional support animal if you are working with a mental health professional who can write a letter of support. Typically, symptoms of a chronic illness and the impact on one’s emotional functioning would need to be documented by a licensed professional. The health care provider, in their professional capacity, should have the ability to document your disability and the need for a reasonable accommodation of an emotional support animal. This provider could speak to the manner in which an emotional support animal will aid with alleviating some of the challenges associated with your disease and enhance your day to day functioning. If depression and anxiety are present, the provider may also highlight the ways in which an animal companion can help you manage mood symptoms which can improve your overall quality of life on a daily basis.
ANSWERED BY:
Expert Image
Megan E. Riehl, PsyD
Clinical Health Psychologist, University of Michigan Health System
April 2017
Q: Our 14 yr old son was diagnosed with CD in 7/2016. He was having back pain and had an X-ray. In Jan 2017 had another X-ray and compared to the July one, he had major deterioration even though he hasn't had IBD issues in months. He has compression fractures in his spine. He was on steroids for 2 months but has been doing well on Remicade. He has gained 22 lbs but no growth in height. The dr wants to put him on bisphosphonates. Is this a standard treatment in CD patients with a fracture?
A: Vertebral compression fractures can be caused by osteoporosis, trauma, or diseases affecting bone (pathologic fracture). The trauma/injury to the area would likely need to be substantial and you did not mention any major accident or injury to the area so low density most likely the issue. Other bone diseases could play a role especially given the short time since diagnosis and should be excluded. Young patients should get a bone age and a bone density shortly after diagnosis to see if there is delay in bone growth and to see what the baseline bone density is. There could have been IBD going on that affected the bone that was not severe enough to cause obvious gastrointestinal symptoms prior to diagnosis. If there was a fracture but bone density was not low, bisphosphonates would not be indicated. IBD can affect bone density for multiple different reasons with about half of patients showing a significant reduction in their bone mass. Bisphosphonates would not treat his current fracture but would try to address the low bone density so a future fracture is less likely. This class of medication is not commonly used in pediatrics especially while bone is still gaining in height and mass. Its use is more often reserved for patients with specific bone diseases. It is thought to be reasonable for use in chronic illness if there is history of multiple low trauma fractures or a vertebral fracture history combined with a very low bone density. I would say the next appropriate step is an appointment with a pediatric endocrinologist. Their role is to help advise use of these medications and help weigh risk and benefits and provide other options as well as rule out other issues that could be playing a role. One can also try to improving bone density with increasing weight bearing exercise. This could be done with a physical therapist to make sure this is done safely in someone with a fracture history. Having optimal control of the IBD.
ANSWERED BY:
Expert Image
Philip Stein, MD
Attending Gastroenterologist, St. Christopher's Hospital for Children
March 2017
Q: I understand that patients can lose response to biologics after a few years? Is it worth the risk of taking a biologic given the potential side effects like cancer or PML?
A: All medication is judge by risk versus benefit. Risk of cancer with biologic medications is no longer considered significant. The risk of PML was seen with only one biologic - natalizumab (Tysabri) - which has since been replaced in treatment protocols by vedolizumab (Entyvio) and that drug has not been associated with PML.
ANSWERED BY:
Expert Image
Eugene Greenberg, MD, F.A.C.P., F.A.C.G.
Carle Physician Group Urbana, IL
March 2017
Q: I have IBD and I’m looking for good breakfast ideas. It seems no matter what I eat in the morning it goes right through me.
A: I would recommend first discussing with your physician whether your disease is well controlled and in remission or whether you have active disease. Ideally if your disease is well controlled you should be able to tolerate any type of breakfast. You are not alone. Many patients with active disease tend to have most bowel movements first thing in the morning or after breakfast. I would recommend minimizing caffeine and hot fluids which both can accelerate intestinal transit. Fatty foods may also result in bowel movements soon after eating. Many of my patients anecdotally tolerate oatmeal or cream of rice the best. Bananas and peanut butter also seem to be well tolerated. For patients who have narrowing in the bowel, smoothies are also great breakfast options.
ANSWERED BY:
Expert Image
Emmanuelle D. Williams, MD
Associate Professor Penn State Hershey
March 2017
Q: In ulcerative colitis patients, do most cases of colorectal cancer start as polyps or dysplasia? How fast does dysplasia develop and grow to cancer?
A: In patients with IBD the sequence of polyp to cancer, if related to IBD, may not follow the same sequence as regular polyps. Colorectal cancer in IBD starts with some type of lesion, but these may be very difficult to see. The timing of dysplasia going to cancer may also be accelerated. For this reason, we recommend frequent screening – every 2 years in all patients after 10 years of disease with Ulcerative Colitis, and in Crohn’s Colitis if more than one third of the colon is involved. Patients with Primary Sclerosing Cholangitis (PSC) need yearly colonoscopies as their risk for colon cancer is particularly high. As lesions predisposing to cancer in IBD may be flat rather than look like polyps, it is also particularly important to have the best preparation possible, and to have a colonoscopy performed by a physician experienced in the care of IBD patients.
ANSWERED BY:
Expert Image
Emmanuelle D. Williams, MD
Associate Professor Penn State Hershey
March 2017
Q: I have CD for many years. I recently had colonscopy #5. Since then (3 weeks) I'm feeling like I'm still doing the prep!! Urgent rush to the toilet at all hours day and night for a big rush of blood or brown water! How do I make this symptom quit?
A: I recommend calling your provider to discuss whether you are having a flare of your disease or if you may have concurrent c.difficile infection. Colonoscopy preparations should not cause your IBD to flare, but may alter your gut flora. I would recommend discussing your symptoms with your provider.
ANSWERED BY:
Expert Image
Emmanuelle D. Williams, MD
Associate Professor Penn State Hershey
March 2017
Q: I am scheduled for a colonoscopy. What test result information is important to know? What questions should I ask the doctor following the procedure?
A: Colonoscopies are done for two reasons: a. Screening & Surveillance for colon polyps and cancer. In CD and UC, after having the disease for 8-10 years, screening colonoscopy is recommended every 1-2 years. b. Determining extent and severity of disease and response to treatment. In regards to all colonoscopies, patients should ask the physician performing colonoscopy: a. Was my prep adequate for full evaluation? b. Was colonoscopy performed all the way to the cecum with evaluation of the terminal ileum? c. Were any biopsies done?
ANSWERED BY:
Expert Image
Eugene Greenberg, MD, F.A.C.P., F.A.C.G.
Carle Physician Group Urbana, IL
March 2017
Q: I have CD and will be taking antibiotic for a non-GI issue. Is it appropriate to take a large dose of probiotics prior, during or after treatment with antibiotics? Can the use of antibiotics potentially cause a flare up?
A: Use of antibiotics can potentially cause a flare of CD if it triggers a c-difficile infection/colitis. Antibiotics by themselves do not cause CD flares. Florastor® has been approved by the FDA to use with antibiotics to prevent antibiotic induced diarrhea at a dose of 250 mg twice daily for the length of antibiotic use.
ANSWERED BY:
Expert Image
Eugene Greenberg, MD, F.A.C.P., F.A.C.G.
Carle Physician Group Urbana, IL
March 2017
Q: I have chronic UC which is in approximately 85% remission. Would it be safe to have a total hip replacement and take Coumadin for 6 weeks? Could Coumadin trigger a flare up in some uc patients?
A: There is no contraindication to using Coumadin in patients with chronic UC. Coumadin is safe if anticoagulation is kept within therapeutic range for the condition it is being used to treat. Coumadin does not cause chronic UC flares.
ANSWERED BY:
Expert Image
Eugene Greenberg, MD, F.A.C.P., F.A.C.G.
Carle Physician Group Urbana, IL
March 2017
Q: I have severe ulcerative colitis of the entire large colon. Is it safe to use prednisone 20 mg daily, lialda (mesalamine) 2.4 gm 2x daily and sulfasalazine 1,000 mg 3x daily together? I'm worried about taking so much medication.
A: The goal in the treatment of patients with IBD is to use steroid sparing medications as much as possible. If you have been on steroids long term, escalation of your therapy should be considered. It is not unusual for patients to be on both steroids and mesalamines while trying to get in control and this is safe. I typically do not have patients both on lialda and sulfasalazine but your provider may have reason for this – perhaps joint pain. Currently there should be no safety issue in the combination that you are currently presently taking.
ANSWERED BY:
Expert Image
Emmanuelle D. Williams, MD
Associate Professor Penn State Hershey
March 2017
Q: I am 28 years old and was diagnosed with UC in May 2016 (first flare). I had a second flare in Sept 2016. I was hospitalized both times. I am now on 5 mg of prednisone (every 3 days) and salazopyrin (3mg pd). I feel that a flare might come again. I feel tired and have gas. This potential 3rd one comes 4 months after the last one. Which is exactly the same amount of time between the first two. How can I manage my disease proactively?
A: Given two hospitalizations in a year, I think you should discuss with your provider considering escalation of therapy – proactively your provider can check blood and stool tests to see if there is any active inflammation, a repeat endoscopic evaluation could be in order as well. The goal is that you get off steroids to avoid long term complications of these medications and that your disease be more deeply controlled. Many patients also monitor their symptoms closely by journaling or using apps such as GI Buddy – and this can give helpful information to your provider.
ANSWERED BY:
Expert Image
Emmanuelle D. Williams, MD
Associate Professor Penn State Hershey
March 2017
Q: What percentage of IBD patients have both Crohn's and colitis? Are they both diagnosed the same way?
A: 1a. Patients with IBD cannot have both Crohn’s and Ulcerative Colitis. The diseases are diagnosed/differentiated by history, physical exam, blood tests and most importantly colonoscopy. 1b. Crohn’s disease and spastic colitis (IBS) is seen in 15-20% of the general population and IBD does not exclude IBS from occurring. In other words, you can have IBD and also IBS. IBS is diagnosed by history and using the “Rome Criteria”. 1c. Statics for the occurrence of Crohn’s colitis in patients with Crohn’s disease are: Crohn’s Ileitis - 30% Crohn’s colitis - 25-30% Crohn’s Ileocolitis - 40% Therefore, Crohn’s colitis is seen in 70% of patients and diagnosed by colonoscopy/biopsy.
ANSWERED BY:
Expert Image
Eugene Greenberg, MD, F.A.C.P., F.A.C.G.
Carle Physician Group Urbana, IL
February 2017
Q: I have Crohn's Disease and I’m having a hard time coping with this disease. My furry friends are the only ones that are interested in hanging with me in the bathroom and stay with me while I am in flare up mode. Is it possible to get a service dog with a condition like CD? How do I go about getting a “service animal”?
A: There are many ways to gain emotional support when coping with a chronic illness and an emotional support animal may be one avenue. It would likely be easiest for you to get approval for an emotional support animal if you are working with a mental health professional who can write a letter of support. Typically, symptoms of a chronic illness and the impact on one’s emotional functioning would need to be documented by a licensed professional. The health care provider, in their professional capacity, should have the ability to document your disability and the need for a reasonable accommodation of an emotional support animal. This provider could speak to the manner in which an emotional support animal will aid with alleviating some of the challenges associated with your disease and enhance your day to day functioning. If depression and anxiety are present, the provider may also highlight the ways in which an animal companion can help you manage mood symptoms which can improve your overall quality of life on a daily basis.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
February 2017
Q: Do patients have better control of their disease when they communicate with other patients? (through support groups, camps. Online forums, etc)
A: This is an important arena of study, in that support groups can be very helpful at reducing anxiety and depression, factors we know are associated with disease course. Prior literature has shown that summer camps and mentorship programs in pediatric IBD have been effective for parents and children alike. Social interaction has also been associated with improved quality of life in IBD. Patients' experience of helplessness has been shown to reduce their ability to benefit from social support. Better studies are needed in order for us to design the best resources for patients. Studies of social support, outcomes and preferences for support could be designed in CCFA Partners.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
February 2017
Q: Is there an association between comorbidities of neurological conditions and IBD? Dysbiosis is also linked to recovery from neurologic conditions, could this be a link?
A: Neurologic disorders associated with IBD are thankfully relatively rare. It is estimated that 3% of patients with IBD have associated neurological complications. Neurological complications appear to be more common in men, and occur after IBD diagnosis. Some of the therapies used for the treatment of IBD can be associated with increased risk of neurological complications (such as infections or rarely multiple sclerosis-like effects). Some therapies (including long-term use of some antibiotics) can be associated with peripheral neuropathy, which is a burning pain in extremities. Additionally, increased inflammation from IBD does put patients at risk for blood clots, which can also affect the brain. The most common neurologic complaint of patients with IBD is headache (>50% of patients) and migraines are reported as well. Another neurological complication that has been associated with IBD is restless legs syndrome (in up to 30% of patients with IBD). We have not previously collected information on neurological conditions in CCFA Partners www.ccfapartners.org . These can be difficult diagnoses to make and often require the assistance of a neurologist. A better understanding of neurological complications in IBD is an important arena of study.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
February 2017
Q: Are there any IBD patients on the paleo or specific carbohydrate diet? Has this diet positively affected your symptoms?
A: The question of dietary management of IBD is of utmost importance to patients and providers alike. In response to a prior question posed on this portal on the specific carbohydrate diet (SCD), CCFA Partners, the CCFA and the Patient Centered Outcomes Research Institute have funded an important study to better understand the clinical benefits of SCD. This study, led by Dr. James Lewis from University of Pennsylvania, will randomize patients to either the SCD or a Mediterranean diet. Over the course of the study, all food will be provided through a caterer to help with adherence to the diet. Important outcomes on symptoms and on markers of inflammation (in the blood and stool) will be used to measure response to the diet. This study will be launching this year. Citizen scientists from the CCFA Partners community posed the original question, and are now on the research team for this important study. Stay tuned as we learn more about the topics that you are most interested in!
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
February 2017
Q: What is the long term effectiveness of a bowel resection as a treatment? What factors lead to longer period of remission?
A: Surgical treatments for CD include bypass, resection, and strictureplasty. The aim of surgery for CD has shifted away from radical operation (used in the 20th century), to minimal surgery, intended to remove the least amount of bowel possible. The surgeon must assess which procedure is most suitable at each area of the disease (this may include a combination of areas of resection and separate areas of strictureplasty). The recurrence rate of Crohn’s disease (CD) post-operatively is unaffected by the width of the margin of resection (meaning if you remove more bowel, this does not reduce the rate of recurrence). The reoperation rates for recurrence of CD have been reported to be 10%-30% at 5 years, 20%-40% at 10 years and 40%-60% at 20 years after surgery. More recently, there have been 3 factors that have been shown to reduce the rate of recurrence of Crohn’s disease after surgery. These factors include 1) using medications post-operatively to prevent recurrence (medications such as immunomodulators and biologic agents have been shown to be effective at reducing recurrence on colonoscopy), 2) performing a colonoscopy within 6 months of a surgery and adjusting medications based on the results and 3) avoiding smoking. A large study called the POCER study was able to show improved outcomes in CD (less recurrence) when colonoscopy was performed at 6 months and adjustments made.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
February 2017
Q: Our 14 yr old son was dx with CD in 7/2016. Also having back pain and had an X-ray. In 1/2017 had another X-ray that showed major deterioration even though he had no IBD issues in months. He has compression fractures in his spine. He was on steroids for 2 months but has been doing well since starting Remicade. He’s gained 22 lbs but no height growth. The dr. want to put him on bisphosphonates. Is this a standard treatment in CD patients with a fracture? What else should we look into?
A: Vertebral compression fractures can be caused by osteoporosis, trauma, or diseases affecting bone. Other bone diseases could play a role especially given the short time since diagnosis and should be excluded. Young patients should get a bone age and a DEXA scan shortly after diagnosis to see if there is delay in bone growth and to see what the baseline bone density is. IBD that was not causing obvious gastrointestinal symptoms prior to diagnosis is possible. If there was a fracture after an accident but bone density was not low, bisphosphonates would not be indicated IBD can affect bone density for multiple different reasons with about half of patients showing a significant reduction in their bone mass. Bisphosphonates would not treat his current fracture but would try to address the low bone density so a future fracture is less likely. This class of medication is not commonly used in pediatrics especially while bone is still gaining in height and mass. Its use is more often reserved for adults or patients with specific bone diseases. It is thought to be reasonable for use in chronic illness if there is history of multiple low trauma fractures or a vertebral fracture history combined with a very low bone density. I would say the next appropriate step is an appointment with a pediatric endocrinologist. Their role is to help advise use of these medications and help weigh risk and benefits and provide other options as well as rule out other issues that could be playing a role. One can also try to improving bone density with increasing weight bearing exercise. This could be done with a physical therapist to make sure this is done safely in someone with a fracture history. Having optimal control of the inflammatory bowel disease itself will decrease cytokines which are bad for bones as well as helping avoid steroid use. Good nutrition with vitamin d and calcium with additional vit d as needed and avoidance of smoking and alcohol are also helpful
ANSWERED BY:
Expert Image
Philip Stein, MD
Attending Gastroenterologist, St. Christopher's Hospital for Children
January 2017
Q: I have Crohn's and had a ileo-colic resection of about 17 cm two years ago. I am in remission and eat a healthy diet but my Vitamin D and B-12 are borderline low. (B-12 209 pg/ml, D 23 ng/ML) Do I need B-12 shots, or how much oral supplements do I need?
A: Vitamin B12 is an important vitamin needed for red blood cell production, proper functioning of nerves, and even making DNA in new cells. The human body cannot make its own vitamin B12, and in the diet vitamin B12 comes in the form of animal based foods. Most B12 is absorbed in the distal terminal ileum of the small intestine, an area often affected by Crohn’s disease. Lab measurement of B12 levels is not exact, and we usually aim for levels >300 pg/mL in order to be on the safe side because B12 is so important. The most reliable method of supplementing vitamin B12 is through shots, but it is also possible to take high dose pills (1000-2000mcg a day), pills that go under the tongue and are directly absorbed into the blood, or by nasal spray. No good studies have been done comparing the efficacy of these methods in Crohn’s disease patients, so it is important to have the B12 level re-checked after you and your doctor have selected a way to supplement your levels. Vitamin D is important for bone health, and may be involved in the immune response as well. We generally aim for vitamin D levels above 30ng/ML, which can likely be achieved by taking a daily oral supplement of Vitamin D3 600-1000 IU daily if you level is between 20-30.
ANSWERED BY:
Expert Image
Sushila Dalal, MD
The University of Chicago Medicine
January 2017
Q: My 62 year old mother was diagnosed with UC a year and a half ago and has developed pyoderma gangrenosum on her leg. She has four lesions ranging from the size of a nickel to the size of tennis balls. She recently started Humira. How long on average does it take for the lesions to heal? Are there cases where the skin condition does not heal?
A: Pyoderma gangrenosum is a rare skin condition that can be associated with UC. Because it is rare, there is not much data available. We do know that the rates of response to Infliximab (Remicade) and Adalimumab (Humira) have been high, though unfortunately, nothing is 100%. The information we have is limited to a few people, but it suggests that patients often saw some improvement with a few weeks of starting an anti-TNF medication like infliximab or adalimumab. However, complete healing often takes several months.
ANSWERED BY:
Expert Image
Sushila Dalal, MD
The University of Chicago Medicine
January 2017
Q: My daughter has hidradenitis suppurativa which the doctors think is associated with the Crohn's Disease. She has flare ups in her vaginal area as well as her armpits. Can this be a symptom of Crohn’s disease and if so, how is it treated?
A: HIdradenitis suppurativa(HS) is not a symptom of Crohn’s disease, but there does seem to be some relationship between the two disease—people who have one of the two conditions are more likely to also have the other. HS is often treated by dermatologists, as it is a condition of the skin. Some possible treatments include antibiotic creams, steroid injections, or oral antibiotics. For more severe disease, treatment with medications that are also used for Crohn’s disease, such as infliximab (Remicade) and adalimumab (Humira) have also been used.
ANSWERED BY:
Expert Image
Sushila Dalal, MD
The University of Chicago Medicine
January 2017
Q: I'm female with acute CD in the terminal ileum. I was on Remicade for 8 years with great success, but am now in the midst of my first flare-up. The doctors tell me that I have an abscess, a developing fistula, and a pretty severe stricture in the ileum (which is my big problem area). I'm currently on antibiotics for the abscess, TPN, and a clear liquid diet. My doctor wants me to have surgery, but I want other options to consider first. What are some other possible treatment options?
A: When an abscess develops, this indicates that the Crohn’s inflammation has burrowed all the way through the intestine wall, and has actually made a hole in the intestine wall. The little hole in the intestine allows the contents of the intestine to leak out into your abdomen, and you body defends itself by walling off the area and creating an abscess. Surgery is required to fix that hole in the intestine wall, because medicines are not able to do that.
ANSWERED BY:
Expert Image
Sushila Dalal, MD
The University of Chicago Medicine
December 2016
Q: How can I help my 14 year old daughter manage side effects of Entyvio? She had her first infusion last week and today is having back pain so much that her bra hurts. She is in tears once she came home from a long day of school and rehearsal. She is also having the feeling of nausea. Would ibuprofen help?
A: I would recommend contacting your pediatric gastroenterologist as soon as possible to address this complaint which may be a non-specific side effect, but possible underlying causes (arthritis, bone infection) should be ruled out.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
December 2016
Q: My 12 year old son was just diagnosed with cd. I am having a hard time having him change his diet and understanding that he has to adjust his lifestyle. He is 12 years old, weighs 60 lbs has lost 25 lbs this year. Should I get him a dietician to help come up with a diet to help him gain weight? Is there a preferred diet for children?
A: Yes, your pediatric gastroenterologist should be able to direct or refer you for a dietician consult. There are several strict diets, such as gluten free diet, specific carbohydrate diet, or exclusive enteral nutrition (exclusive formula diet) that have been shown to provide therapeutic benefits in children with Crohn’s disease. It is very important to work with your gastroenterologist in respect to this question.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
December 2016
Q: My 12 year old son was diagnosed with moderate to severe Crohn’s this past summer. He has been taken off prednisone, but remains on methotrexate and remicade infusions. He has his fourth infusion in a few days. He doesn't have "bathroom issues" but has severe pain in his upper abdomen and body pain. Is it "normal” not have problems bowel movements but have ongoing pain?
A: No, at this stage most patients would be symptom free. Actually, rebound constipation may be a common cause for the complaints, but it is very important to notify your pediatric gastroenterologist as soon as possible for her/him to address the complaints.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
December 2016
Q: I had a right hemicolectomy in June 2015 with removal of the ileocecal valve. I have had constant severe diarrhea since that time. I have tried many medications with no success. Any suggestions?
A: The ileocecal valve is an anatomic landmark that connects the ileum (small intestine) and colon (large intestine). Unfortunately, many questions concerning its function and structure remain unanswered. We do know that the intestinal contents pass from the ileum and into colon through this valve, and the passage is controlled by chemicals in the blood stream and nerves supplying the intestine. Furthermore, the valve may help maintain a difference in the bacteria found in the colon compared to the ileum. Most patients who have their ileocecal valve removed do not experience any long-term change in their bowel habits. The frequent or loose stools (diarrhea) that do occur in others can result from multiple causes that must be sorted to determine the best treatment. If a large amount of the ileum has been removed with the ileocecal valve, the body is unable to manage fat in the diet, and the resultant diarrhea (steatorrhea) tends to be associated with oily stools that may float and are particularly foul-smelling. In this instance, a medication (cholestyramine) taken at mealtime can improve the diarrhea. In other patients, the diarrhea occurs because of colon bacteria now residing in the ileum (small intestine bacterial overgrowth). This overgrowth can also cause bloating and pain, and is usually managed with antibiotics taken for 1-2 weeks, but repeated courses may be required. Lastly, the diarrhea can result from the intestinal contents passing too quickly along the length of the bowel. Anti-diarrheal agents (diphenoxylate plus atropine, loperamide) can slow this passage to decrease the frequency of the stool. Moreover, over-the-counter fiber products may help increase the stool’s consistency.
ANSWERED BY:
Expert Image
Scott A. Strong, MD
Northwestern Medicine, Chief, Division of Surgery-Gastrointestinal and Endocrine
December 2016
Q: I had surgery in 2000. I had my colon removed and had a "j" pouch to avoid an ileostomy. I have developed a skin irritation that will not heal because of the frequency of bathroom use. It is extremely painful and I am requiring prescription pain killers. Is there any information on ways to help the skin heal?
A: Irritation of the skin around the anal area (perineum) caused by frequent stools (diarrhea) or poor control (incontinence) is caused by many factors working together. Frequent cleansing causes damage from abrasions and alters the skin’s protective acid content (pH). Excessive moisture further alters the skin’s pH, which increases its porousness (permeability). In addition to the local inflammation caused by cleansing and moisture, infection may develop as germs contained in the stool can penetrate the traumatized and porous skin. Management of the perineal skin damage requires local measures as well as identification and treatment of the underlying cause. Perineal skin cleansing should be performed after each stool or incontinent episode. Specific cleansers are available in many forms (emulsion, foam, liquid, towelette). Bar soaps, skin cleansing agents, and antibacterial hand-washing products can worsen the problem. The affected skin needs to be moisturized to reinstate the depleted factors. Humectants (glycerin, lanolin, methyl glucose esters, mineral oil) contained in perineal cleansers replace the skin’s natural oils. No-rinse perineal cleansers with humectants minimize drying because they remain on the skin rather than being rinsed away. Moisture barriers (protectants) contain active ingredients (dimethicone, lanolin, petroleum jelly, zinc oxide) to shield the skin from exposure to irritants and moisture. A moisture barrier may be incorporated into skin cleansers or separately applied as a cream, ointment, or paste. Ointments and pastes are longer lasting and more occlusive. Liquid barrier films or skin sealants combine a solvent that evaporates and a polymer that dries to form a barrier when applied. Some solvents may irritate the damaged skin, and any product should be accordingly used only if not associated with stinging during application. A liquid film barrier should not be combined with a moisture barrier because these agents are typically incompatib
ANSWERED BY:
Expert Image
Scott A. Strong, MD
Northwestern Medicine, Chief, Division of Surgery-Gastrointestinal and Endocrine
November 2016
Q: I have severe stomach bloating. I look like I’m pregnant. Can IBD cause severe bloating? What can be done to reduce the bloating?
A: Bloating may a symptom of active IBD. Bloating can also occur due to other conditions that may be present in patients with IBD. These conditions include: small bowel bacterial overgrowth, celiac disease, irritable bowel syndrome, lactose intolerance, among others. Your symptoms should be discussed further with your doctor, to better understand the cause. A diet low in fermentable oligo-, di-, and monosaccharides and polyols, called a “low FODMAP” diet, may be helpful. Your doctor can provide you will further details about this diet, or other treatments for your symptoms.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
November 2016
Q: I need help finding travel health insurance for my 19 year old daughter who will need 2 infusions of Remicade while she is studying abroad this spring. Every single travel health insurance company I spoke to does not cover infusions for pre-existing conditions. What alternatives do people use for long term travel abroad?
A: I contacted Janssen, the pharmaceutical company that makes Remicade, to discuss this issue further. The representative recommended visiting the international Janssen website at www.janssen.com/emea. Scroll down to “contact us” and submit an email inquiry, including the country where your daughter will be studying. You will contacted by a Janssen representative to discuss options for receiving Remicade during her study abroad.
ANSWERED BY:
Expert Image
Ann Flynn, MD
University of Utah Health Care
November 2016
Q: I have had Crohn’s for over 25 years and have been on 6-MP. I currently have low iron and hemoglobin. Can these issues be caused by the medication? What are some long term side effects of 6-MP?
A: 6-MP can suppress the bone marrow production of all cells, leading to anemia (low hemoglobin) or low platelet count (cells that clump and clot to stop bleeding). 6-MP does not typically cause iron deficiency. Iron deficiency anemia may occur due to active Crohn’s disease, causing slow loss of blood in the stools. Iron deficiency anemia may also occur due to celiac disease, ulcers in the stomach or small intestine, other problems in the GI tract causing slow blood loss in the stools, or heavy menstrual periods. Long term risks on 6-MP include increased risk of infection, particularly viral infections, elevated liver tests, non-melanoma skin cancer (basal cell or squamous cell skin cancers), and a very small increased risk of lymphoma (a cancer that develops in the lymphatic system from cells called lymphocytes, a type of white blood cell that helps the body fight infections).
ANSWERED BY:
Expert Image
Ann Flynn, MD
University of Utah Health Care
November 2016
Q: I am a long time Crohn’s patients and have problems with my teeth. Can Crohn’s Disease cause problems with teeth?
A: Some studies have shown a higher prevalence of dental caries (cavities) and periodontitis (gum disease) in Crohn’s disease patients when compared to patients without Crohn’s disease. The reasons for this increased prevalence, such as differences in diet, disease activity, or medication use, are not clearly understood. Crohn’s disease may involve the mouth or facial skin, causing inflammation of the gums or ulcers in the lining of the mouth. Crohn’s disease may also cause ulcers, swelling, or nodules in the facial skin.
ANSWERED BY:
Expert Image
Ann Flynn, MD
University of Utah Health Care
November 2016
Q: I started my HUMIRA 5 months ago and I see a pattern of extreme nausea and fatigue for the 4 days after the injection. Is this common and what can I do to help this? I take ginger root capsule and drink ginger tea and wear seabands. Nothing seems to help.
A: Some people do experience fatigue and nausea following their Humira injections. I recommend discussing these symptoms further with your doctor. It may be helpful to check a Humira trough level, to be sure that you have good drug levels in your blood when your Humira shot is due, and to confirm that you have not developed antibodies to the medication. It may be helpful to take a prescription nausea medication as needed, when these symptoms are most significant.
ANSWERED BY:
Expert Image
Ann Flynn, MD
University of Utah Health Care
November 2016
Q: I have UC proctitis and take Lialda. I'm concerned about long term effects of lifetime medication. Is it possible to go off Lialda for periods of time and remain in remission?
A: Ulcerative proctitis is a chronic disease, and your inflammation is likely to recur with stopping the mesalamine (Lialda) therapy. When the inflammation recurs, it may be more severe than what you have experienced previously, and it may be difficult to regain control of inflammation. Staying on an effective therapy will offer you a more stable and predictable course. Overall, mesalamines are well tolerated and safe. Very rarely, mesalamines may cause kidney injury, and your kidney function should be monitored on the medication. But, there are very few risks associated with long term mesalamine use. If you would like to minimize systemic (body wide) exposure to the medication, many patients with ulcerative proctitis can control inflammation with a mesalamine suppository (Canasa). The suppository delivers the medication directly to the rectum, and may offer you good control of your proctitis with minimal body wide exposure, and even less risk than an oral mesalamine therapy. Some patients with ulcerative proctitis are able to remain in remission, while using the mesalamine suppository a few times per week.
ANSWERED BY:
Expert Image
Ann Flynn, MD
University of Utah Health Care
November 2016
Q: My 27 year old Son has been on Humira for a little over a year and has experienced remission of the GI symptoms. However, he is now experiencing extraintestinal complications. After a year, can Humira cause tingling of arms and legs (nervous system complications) and iron deficiency anemia? What would you like to know in order to make the decision regarding whether to continue with the Humira, or to make a switch to another medication?
A: The sensation of tingling in the arms and legs is often referred to as “peripheral neuropathy.” This sensation can develop due to many causes, including diabetes, hypothyroidism, vitamin B12 deficiency, celiac disease, other autoimmune diseases, HIV infection, alcohol use, as well as medications. It would helpful to discuss these symptoms further with his doctor, who will perform an examination, and likely order additional laboratory testing. If he is having pain in his neck or back, radiology imaging may also be helpful. It will be important to understand whether these symptoms are truly a side effect of Humira therapy, or due to another cause. An evaluation with a Neurologist can sometimes help to clarify this. Iron deficiency anemia is not an expected side effect of Humira therapy. Often iron deficiency anemia will improve as bowel inflammation improves. If his GI symptoms are in remission but he continues to be anemic, it may be helpful to reevaluate with endoscopy to ensure that inflammation has healed. An upper endoscopy could also be helpful to exclude upper GI tract inflammation, ulcers, or celiac disease contributing to his ongoing anemia.
ANSWERED BY:
Expert Image
Ann Flynn, MD
University of Utah Health Care
November 2016
Q: When would you consider removing anal skin tags in a Crohn's patient? When would the benefits outweigh the risks?
A: Skin tags may develop around the anus in patients with Crohn’s disease. When inflammation improves, the skin heals in thickened flaps around the anus. It is typically best to avoid surgical removal of skin tags, because removal may causing scarring (stricture) at the anus, damage to the anal sphincter, and there may be issues with poor healing in this area. Surgical removal of skin tags may be considered on a case-by-case basis in patients with well-controlled Crohn’s disease, but those risks will still be present, even when inflammation is controlled.
ANSWERED BY:
Expert Image
Ann Flynn, MD
University of Utah Health Care
November 2016
Q: What would cause a lower than normal Remicade level, discovered during routine pre-infusion Bloodwork. Have been receiving Remicade every 8 weeks for past 4 yrs. My doctor now wants it every 6 weeks. Does this indicate a flare?
A: Remicade trough levels are influenced by blood albumin levels, use of other immunosuppressive therapies in combination with Remicade (such as azathioprine, mercaptopurine, or methotrexate), development of antibodies to the medication, and severity of your disease. A low Remicade drug level does not indicate a flare of IBD. But, patients with an initial response to Remicade can lose response over time. Loss of response to the medication can be due to increased clearance of the drug from the blood, resulting in a low drug trough level. The level of Remicade in the blood has been associated with ongoing response to the medication, ongoing control of IBD symptoms, and healing of the bowel lining at endoscopy. Your doctor is likely optimizing your dose of the medication to ensure that you remain well on Remicade therapy over time.
ANSWERED BY:
Expert Image
Ann Flynn, MD
University of Utah Health Care
November 2016
Q: I was just recently diagnosed with ulcerative colitis. I'm currently on prednisone, Apriso, and dicyclomine and feel completely wiped out. I have no more rectal bleeding and my stools are returning to normal, and I have little abdominal discomfort, but feel very weak and fatigued. Is this caused by the disease or the medications?
A: Active ulcerative colitis is very often associated with fatigue and weakness, in addition to diarrhea and rectal bleeding. Active inflammation is a strain on the body. Frequent bowel movements overnight will disrupt your sleep cycle. Ongoing rectal bleeding can cause iron deficiency anemia, which may contribute to your feelings of fatigue. Although the diarrhea and bleeding is improving, it often takes additional time for these other symptoms to improve. Your fatigue and weakness are likely symptoms of your overall illness, which should gradually improve over time as inflammation is controlled. These symptoms are unlikely to be side effects of your prednisone, mesalamine (Apriso), and dicyclomine therapies.
ANSWERED BY:
Expert Image
Ann Flynn, MD
University of Utah Health Care
October 2016
Q: My 14 year old daughter has Crohn's and takes methotrexate injections. She struggles to eat the most basic foods without feeling unwell. Is there any meal replacement shakes that is suitable for have age?
A: There are definitely several options of nutritional shakes available for her age. Any nutritional supplementation or especially "meal replacement" should be done with the supervision and consultation of a registered dietitian. I would recommend asking your daughter's gastroenterologist for a referral to meet with one to discuss further.
ANSWERED BY:
Expert Image
Eva M. Szigethy, MD, PhD
Associate Professor, Psychiatry, Medicine and Pediatrics
University of Pittsburgh School of Medicine
October 2016
Q: I have tried all the meds, biologics included and after many years of little relief, I searched for natural alternatives. My UC maintained remission for 4 yrs and I have been able to control my pain and inflammation with Matcha green tea. I drink 2 cups a day but this isn't your typical over the counter tea. I buy it in powder form. Is this something you have heard of before?
A: I know patient who have received relief with homeopathic options like green tea or peppermint tea or oil. These options have not been well studies and it is worth checking with your gastroenterologist to make sure they are safe and will not cause any inadvertent harm.
ANSWERED BY:
Expert Image
Eva M. Szigethy, MD, PhD
Associate Professor, Psychiatry, Medicine and Pediatrics
University of Pittsburgh School of Medicine
October 2016
Q: With the combo of medication + having a chronic illness, what is a good way to cope with anxiety and depressed feeling?
A: The best ways to cope with anxiety and depressed feelings are to work with a counselor or therapist to figure out what aspects of what is causing those feeling are controllable and which are not. For things in your control to change, finding distracting activities (things you have a passion for), exercise, and good social support is best. For things you cannot control, like having IBD, finding the best coping techniques to not get as stressed out about it. These techniques I describe are called cognitive behavioral therapy. These techniques are available through counselors or through self-help educational tools like golantern.com.
ANSWERED BY:
Expert Image
Eva M. Szigethy, MD, PhD
Associate Professor, Psychiatry, Medicine and Pediatrics
University of Pittsburgh School of Medicine
October 2016
Q: Please discuss medical cannabis vs opiates for pain management. I have RA as well and the NSAIDs are a nightmare for my Crohn’s.
A: While some patients report relief of their abdominal pain and nausea with medical cannabis, there is growing evidence that there may be negative effects on the brain - especially with long term use. These can be memory and attention problems, slowed reflexes (when driving) and for some patient development of anxiety, depression, and feeling paranoid. At the moment there is not enough evidence for the medical community to say how safe medical cannabis is but it is being studied.
ANSWERED BY:
Expert Image
Eva M. Szigethy, MD, PhD
Associate Professor, Psychiatry, Medicine and Pediatrics
University of Pittsburgh School of Medicine
October 2016
Q: I have Crohn's and have joint pain that is constant, despite my guts being in remission from Humira. I am interested in finding non-drug ways to cope with the pain. I've had some success with acupuncture. What alternative approaches have been shown to help with IBD related joint pain?
A: There is some evidence that acupuncture can help patients with irritable bowel syndrome. For IBD, there are small studies showing benefit of yoga and mindfulness meditation.
ANSWERED BY:
Expert Image
Eva M. Szigethy, MD, PhD
Associate Professor, Psychiatry, Medicine and Pediatrics
University of Pittsburgh School of Medicine
October 2016
Q: How do you deal with chronic mouth ulcers
A: There are numbing agents that you can swish in your mouth that your gastroenterologist can tell you about. Hypnosis can also be very useful for helping ulcers.
ANSWERED BY:
Expert Image
Eva M. Szigethy, MD, PhD
Associate Professor, Psychiatry, Medicine and Pediatrics
University of Pittsburgh School of Medicine
October 2016
Q: Can you talk about the impact of disrupted sleep on Crohn's disease and what is being done to help patients who have these issues (who aren't on steroids)?
A: Disrupted sleep can make IBD worse- worse inflammation, more pain, and also predisposes people to more anxiety and depressed mood. Disrupted sleep can be having trouble falling asleep, multiple awakenings or not getting enough sleep. Many medical sleep societies recommend all adults need 7-9 hours per sleep a night. Most important things to do to help sleep disruption is doing enough physical activity during the day to be tired by night, good sleep hygeine (so no bright lights including computers or cell-phone screens in bed) and going to bed and getting up at the same time each night. Sleep can now be monitored on gadgets like fitbits or also apps like sleepcycle.
ANSWERED BY:
Expert Image
Eva M. Szigethy, MD, PhD
Associate Professor, Psychiatry, Medicine and Pediatrics
University of Pittsburgh School of Medicine
October 2016
Q: For pain management does an IBD patient need to go to a pain management specialist or solely to the gastroenterologist or both?
A: Different GI clinics or practices have different ways they handle pain management. Some gastroenterologists have algorithms that they try first. Many have psychosocial resources available who specialize in pain. Pain experts can be counselors or pain anesthesiologists who can sometimes have success with nerve blocks, TENS units, or vagal nerve stimulators- though these latter techniques have not been well studied.
ANSWERED BY:
Expert Image
Eva M. Szigethy, MD, PhD
Associate Professor, Psychiatry, Medicine and Pediatrics
University of Pittsburgh School of Medicine
October 2016
Q: Part of the discomfort I feel is caused by a feeling of moving around in the intestine - it gurgles and can be quite loud. Doctors seem to dismiss this symptom but it is actually one of the worst parts of the illness (at least for me). It makes it hard to concentrate on much of anything when your insides are rolling. Is there anything you might suggest for easing the discomfort?
A: To ease the discomfort you describe, you might consider distraction techniques. These are either activities you can do to forget about the gurgling or mind techniques such as meditation or hypnosis. To learn about certified medical hypnotists in your area, you can go to the website of the American Society of Clinical Hypnosis. There are also some good apps available to help teach meditation like headspace.com. Finally, there are educational stress management websites such as www.gameplan.com that can give you ideas too.
ANSWERED BY:
Expert Image
Eva M. Szigethy, MD, PhD
Associate Professor, Psychiatry, Medicine and Pediatrics
University of Pittsburgh School of Medicine
October 2016
Q: What are the pain management options? NSAIDs are out for obvious reasons. Tylenol only takes edge off. Narcotics have their own list of problems including but not limited to addiction. I've asked for an antispasmodic to hopefully reduce spasms/pain. But this is a last ditch effort on my behalf to control my chronic pain. I'd love to hear any other suggestions.
A: The more chronic the pain, the more it involves the brain. What I mean is that the brain re-organizes if constantly bombarded by pain signals and neighboring brain regions that process emotions (anxiety, depression) and thoughts can also be affected. Most research supports learning coping skills to reduce these negative emotions or negative or pessimistic thinking as the best way to reduce pain perception. You are correct narcotics have many side effects and have been associated with greater risk of infections and death in patients with Crohn’s disease. There are non-opioid pain medications that have evidence in helping pain – working both on the nerves and in the brain. Finding a pain doctor or psychiatrist who specialized in chronic pain can help you find specific options.
ANSWERED BY:
Expert Image
Eva M. Szigethy, MD, PhD
Associate Professor, Psychiatry, Medicine and Pediatrics
University of Pittsburgh School of Medicine
October 2016
Q: I would like to know more about extraintestinal / non-gut pain relief. Joint pain seems to be a big problem for me, even when the Crohn's is mostly in remission. Tylenol has been the only thing I can take without unpleasant side effects. What natural pain relief options are out there? Also, where is the research on this today? Has there been any progress?
A: First for any type of pain, you want to check with your gastroenterologist to make sure that it is not due to inflammation and other medical causes. The most natural pain relief options are those that do not use medications- brain techniques such as relaxation, meditation and increasing enjoyable activity. For natural pain options, omega 3 fatty acids have been studied but best to check with your doctor.
ANSWERED BY:
Expert Image
Eva M. Szigethy, MD, PhD
Associate Professor, Psychiatry, Medicine and Pediatrics
University of Pittsburgh School of Medicine
October 2016
Q: I understand the myriad of reasons that doctors are opposed to narcotics to treat pain related to IBD. What are we to do when, more often than not, they're the only thing that bring relief?
A: You are correct- there is a growing list of serious problems caused by opioids including tolerance (needing higher and higher dose to treat the pain), brain effects, increased risk of infection and increased risk of death. In vulnerable patients, they can lead to addiction. With chronic use, they can lead to gastrointestinal problems such as constipation and obstruction. There are patients who do well with low dose opioids and careful monitoring but given the risks, it is important to be followed by a pain specialist and to consider other non-opioid options when possible.
ANSWERED BY:
Expert Image
Eva M. Szigethy, MD, PhD
Associate Professor, Psychiatry, Medicine and Pediatrics
University of Pittsburgh School of Medicine
October 2016
Q: My daughter is 16 and has CD. Her doctor has recommended Remicade. He also indicated that they can now “push the dosing”. He said the infusion can done in a shorter period of time than two hours. I can’t find any information on Remicade infusion being completed in less than two hours. Do you have information on faster infusion times?
A: There are scientific studies showing safety and tolerability of rapid infusions of Remicade. I am not aware of any patient-focused literature discussing this topic. I would recommend bringing your questions to your daughter's physician to discuss further with him or her. This is not yet typically standard of care at most hospitals, but is being offered at more and more infusion clinics.
ANSWERED BY:
Expert Image
Eva M. Szigethy, MD, PhD
Associate Professor, Psychiatry, Medicine and Pediatrics
University of Pittsburgh School of Medicine
September 2016
Q: I recently had a small bowel series, it showed that I had focal narrowing in small intestine with possible structure findings concerning for underlying IBD. They did an MRI a week later, nothing showed up on MRI. I'm so frustrated. I have been struggling with trying to find out what's going on with my stomach for years now. After small bowel series I thought I finally had an answer. Now I'm back to square one. Is it still possible I had inflammation and then it wasn't present at time MRI?
A: I can understand your frustration. Typically, an MRI is a better test for a stricture than a small bowel series. It may be that the small bowel series findings were falsely positive. If there is ongoing concern for IBD, there are potential lab tests that may be helpful as well.
ANSWERED BY:
Expert Image
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
September 2016
Q: I was wondering if an appendectomy can improve UC. I am a 32-year-old woman who has had UC since 2003 (when I was 19). I had very active disease from 2003-2006, and then, with the help of 6mp, had occasionally active disease from 2007-2013 (maybe 2 mild flares per year). In early 2013, I got appendicitis and had an appendectomy. Since the appendectomy, my UC has been much better -- I've had only 1 mild flare in the 3.5 years since. Is it coincidence? I'm still on 6mp and Colazal.
A: It may not be a coincidence that you have felt better but it’s difficult to say for certain. To date, the studies on appendectomy and the course of ulcerative colitis have been conflicting. While some studies have shown an improvement in UC, others have not. Currently, there is a large study out of the UK looking at this very issue. We should have some preliminary results within the next 1-2 years so keep a lookout for this.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
September 2016
Q: I have UC diagnosed in 2008. It got very bad, 30 plus episodes of diarrhea a day and heavy bleeding. Now I'm struggling with constipation and a hard distended stomach as well as 10 plus episodes per day of passing just blood and tissue. I take stool softeners to keep things normal and reduce pain and bleeding. I am concerned about a blockage or maybe Crohn's in addition to UC, but my imaging doesn't seem to support either of those things. Is what I am experiencing normal?
A: Thanks for your question. It’s difficult to say exactly what may be going on without having more information. If you’ve had a colonoscopy and your UC is controlled (i.e., there is no active inflammation), there may be other causes for your altered bowel movements. The constipation may be caused by medications, irritable bowel syndrome, small bowel bacterial overgrowth, etc.
ANSWERED BY:
Expert Image
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
September 2016
Q: Would any of the experts recommend a Paleo diet, probiotics (if so what brand or specifics to look for), or the use concentrated cherry juice for ulcerative colitis flares?
A: This is a very common question. Currently, there is no data to suggest that the Paleo diet or concentrated juices are effective for ulcerative colitis flares. As far as probiotics, not all of them are considered the same. In mildly active ulcerative colitis, 2 specific probiotics may be useful. One probiotic, E. coli Nissle (aka Mutaflor, Ardeypharm) may be effective in putting you in and keeping you in remission for up to one year. The other probiotic called VSL#3, a combination of 8 probiotics, is effective in putting you in remission and possibly keeping you in remission for up to 6 months.
ANSWERED BY:
Expert Image
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
September 2016
Q: I have been diagnosed with microscopic colitis. My symptoms are weight loss from 128 to 108 pounds; gas and bloating; mild diarrhea. Could there be particular nutrients that I am not absorbing that explain the weight loss? Are there particular foods I should eat more of in order to gain weight? I have been following the Specific Carbohydrate Diet for two months and believe it helps reduce gas and bloating but I have not been able to regain lost weight.
A: That’s interesting. Weight loss is uncommon in microscopic colitis. There may be several reasons for the weight loss. If the weight loss has occurred since you started the Specific Carb Diet (SCD), it may be due to the food restrictions from the SCD itself. In addition, it may be a good idea to get tested for celiac disease, which is more common in microscopic colitis, and pancreas problems. Both these disease processes are more likely to cause weight loss.
ANSWERED BY:
Expert Image
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
September 2016
Q: My GI doctor has recently suggested a new treatment for my Crohn's disease. He has suggested the medication Entyvio. I haven't heard much about the medication, and before committing I'm trying to gather information about medication.
A: It’s always a good idea to gather information on a new medication that is being recommended. Entyvio is a biologic medication that binds a gut-specific protein that is important in causing inflammation. It is given as an intravenously (IV) infusion, a little more initially to induce remission, and then usually every 8 weeks for maintenance. Its safety profile so far seems to be better than the anti-TNF agents like Remicade and Humira. However, it looks like it can take longer to start working than those medications. I would speak to your provider for further details. You can also obtain more information on Entyvio from http://www.ccfa.org/resources/biologic-therapies.html.
ANSWERED BY:
Expert Image
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
September 2016
Q: I’ve been taking Pentasa since being diagnosed with CD in 2003. I initially started out at 4 pills 4 times a day at 500mg a pill. My symptoms have been well controlled since. The past 2 years I w/Dr have changed my dosage to 4 pills once a day still 500mg. In the past 2 years my big toe nails have both become discolored and infected. Just recently I have noted getting the tingles/numbness in my arms and legs at times. Could I be having medication withdraw? Or is it just a coincidence?
A: Peripheral neuropathy has been rarely associated with mesalamine products like Pentasa. I don’t know if the discoloration and infection of your toe is related to the Pentasa though. I would check with your provider and ensure that other causes of tingling/numbness in your extremities, especially if these are a persistent symptom, are ruled out.
ANSWERED BY:
Expert Image
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
September 2016
Q: I've been taking Pentasa for 23 years. First, 4 pills @ 250 mg twice a day and the last couple of months 2 pills @ 250 3 times a day. In both situations I feel the medicine after 23 years has been the cause of my sinus/nasal issues and makes it hard to breathe. I also have a general unwell feeling. Is it possible to build an intolerance to this medicine after 23 years? Prior to Pentasa I took Azulfadine for many years and could no longer take it. What are some other treatment options?
A: Sinus/nasal problems would be an unusual effect of a medication like Pentasa. Things like sinusitis (inflammation of sinus tracts) has been reported with medications like Pentasa in large studies but it is uncommon. If you have generally been feeling unwell, from an IBD standpoint, it may be important to ensure that your disease is controlled. Often your symptoms don’t correlate with active intestinal inflammation so it is important that labs, imaging, and/or colonoscopy are performed to obtain an objective assessment of the disease. If you do have active intestinal inflammation, there are several treatment options based on the degree of disease severity that you can discuss with your provider.
ANSWERED BY:
Expert Image
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
September 2016
Q: How often should a 70 year-old male with Crohns disease have a colonoscopy?
A: This is a very good question. Unfortunately, the answer is more complicated. It’s important to realize that the goals of Crohn’s disease treatment may be different based on a patient’s overall health. Advanced age can occasionally be associated with declining health but not always. Generally, in older age, we treat Crohn’s disease to control symptoms. In younger age (i.e., age <40) , we treat Crohn’s disease to heal the intestinal inflammation and control symptoms. In general, patients who are diagnosed with Crohn’s at age ≥60 have the same risk of developing colorectal cancer as patients diagnosed with Crohn’s at an earlier age. Colonoscopy in Crohn’s disease may be performed to evaluate intestinal disease activity or evaluate for colorectal cancer from long-standing Crohn’s disease and patient age. There is no consensus on this approach but in my older patients regardless of whether they have IBD or not, I do colon cancer screening colonoscopies if the patient can safely undergo surgery in case we discover malignancy. In older patients in whom I am considering a colonoscopy to evaluate for active inflammation, I take into account the patient’s other illnesses before proceeding. I would speak to your provider about the risks and benefits of performing a colonoscopy.
ANSWERED BY:
Expert Image
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
August 2016
Q: I often hear of ulcerative colitis, but what are microscopic colitis and lymphocytic colitis? Are these types of IBD? Can a patient have both UC and another type of colitis?
A: Lymphocytic and collagenous colitis are the two types of microscopic colitis. They fall within the spectrum of inflammatory bowel disease but behave very differently than Crohn's or ulcerative colitis. A patient generally has either Crohn's or ulcerative colitis or they can have microscopic colitis but not both.
ANSWERED BY:
Expert Image
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
August 2016
Q: What is gastroparesis? Can you have IBD and that at the same time? Can it be confused with IBS?
A: When there is a delay in emptying of the stomach contents into the small bowel, this is termed gastroparesis. Patient may have a sensation of fullness, nausea, and vomiting. Gastroparesis and IBD can be going on concurrently. It is possible that gastroparesis and IBS may be mistaken for one another.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
August 2016
Q: My Iron levels are low and my GI recommended an iron supplement. Can an iron supplement cause flares or worsen a current flare?
A: This is a controversial topic. There are studies that show that iron can worsen inflammation and those that do not. I tend to avoid oral iron in my patients with more severe disease or who are having flares but I do use it in those patients who need iron and have more mild disease.
ANSWERED BY:
Expert Image
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
August 2016
Q: Can microscopic colitis change to ulcerative colitis? Or just misdiagnosed? And any relationship between UC and rheumatoid arthritis?
A: And any relationship between UC and rheumatoid arthritis? Microscopic colitis is made up of collagenous and lymphocytic colitis. I have seen microscopic colitis patients who then go on to develop Crohn's or UC but this is uncommon. Microscopic colitis and IBD are diagnosed and behave differently though and the diagnosis should be more clear after an evaluation. UC and rheumatoid arthritis can be found together as they are both autoimmune disorders. You can learn more about microscopic colitis here: http://www.ccfa.org/resources/microscopic-colitis.html.
ANSWERED BY:
Expert Image
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
August 2016
Q: Does IBS cause IBD? Can patients with IBD have IBS concurrently?
A: IBS and IBD are completely different processes with different causes and complications. A patient can definitely have both processes and sometimes it can be difficult to differentiate between the two when symptoms arise.
ANSWERED BY:
Expert Image
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
August 2016
Q: Do you use the fecal calprotectin test to monitor your patients GI inflammation? If so, at what intervals?
A: 90 days? I do use fecal calprotectin as a marker for inflammation. There's data that shows it can help predict a flare. I know GIs who use it every three months. In my practice, my use is based on the individual patient.
ANSWERED BY:
Expert Image
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
August 2016
Q: How often should a patient have scopes after Pancolitis?
A: It depends on how long a patient has had pan colitis. If it's been 8-10 years, then generally the recommendation is 1-3 years depending on other risk factors (i.e., family history of colon cancer).
ANSWERED BY:
Expert Image
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
August 2016
Q: Are there any issues with birth control pills exacerbating UC or Crohn's symptoms in women?
A: Estrogen-containing birth control pills have been associated with development of Crohn's in the past and recently there was a study suggesting that it is associated with a worse course of Crohn's. I would discuss this with your GI.
ANSWERED BY:
Expert Image
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
August 2016
Q: What type of diet do you recommend for people suffering Crohn’s and colitis? Is there anything particularly harmful that worsens symptoms or the disease?
A: This is a very popular question. There is increasing interest in this topic and more and more information is coming out. There is some preliminary studies showing that dairy products, red meat, and coconut oil may worse IBD. When a patient is undergoing a flare, I do suggest going on a low fiber diet. Because of the individualized nature of IBD, what works for one patient may not work for another when it comes to diet. Check out CCFA's diet and nutrition brochure to learn about the role of diet in IBD. http://www.ccfa.org/assets/pdfs/diet-nutrition-2013- 1.pdf.
ANSWERED BY:
Expert Image
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
July 2016
Q: I was diagnosed with UC about 4 years ago. I'm currently on Remicade, 6MP, and Asacol. I'm an avid cyclist and over the past year have started to experience bouts of muscle fatigue and severe muscle cramping. This NEVER happened prior to my life w/UC. It's as if my muscles rebel against me without warning, even when I'm in remission and feeling quite well; it's like I unexpectedly get pushed off a cliff. Could this fatigue be due to the UC, the meds, or a combination?
A: It is difficult to know. If you are having diarrhea, you could be having electrolyte abnormalities and could be more prone to dehydration, which can affect cramping. The medications that you are taking seldom cause muscle aches, so I don't think that the meds are causing the issue, unless you recall getting cramps from one of the above meds. Finally, if you had a prolonged flare, you could have some muscle deconditioning and perhaps need to regain your strength and rebuild your muscle.
ANSWERED BY:
Expert Image
Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
July 2016
Q: I have UC which has not bothered me much. I take Sulfasalazine, Folic acid and a Probiotic. In the last 2 weeks, I’ve been having a flare up. I have very loud gurgling in my stomach area, with mucus/bloody discharge. I have not changed my diet at all. Is the gurgling a UC symptom and what causes it? How do I get it to stop?
A: This may not be a UC flare at all. I usually tell my patients that symptoms of a flare are most likely similar to how you felt when you were diagnosed. A lot of my patients have irritable bowel (IBS), which often leads to gurgling and mucous. Stress can make this worse. At this point, if you feel that this is a flare, I'd consider repeating some lab work and perhaps doing a stool study to evaluate for infection. I'd communicate this with your GI doctor/nurse.
ANSWERED BY:
Expert Image
Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
July 2016
Q: I’m a 27 year old female diagnosed with Crohn's May, 2015. I also have Multiple Sclerosis diagnosed in 2006. I am currently receiving IV rituxan infusions for the MS. My neurologist urges against additional immunosuppressants (prednisone, remicade, etc) and states that rituxan is also used for CD. I have not found literature on rituxan use in CD. I’m not on any treatment for the CD yet except dietary changes. Do you have information on rituxan and suggestions on treatment options?
A: Rituxan has been studied in Crohn's disease and has not been effective, so we do not give this for Crohn's patients alone. Regardless, if you were doing well on rituxan from a Crohn's standpoint, I too would avoid other treatments. However, if you are not doing well, I disagree that we can't give you anything. If you have MS, you should not get anti-TNF agents (infliximab, adalimumab, certolizumab). However, there are other choices out there, depending on the severity of your Crohn's. Certainly, if you are doing poorly, I would not avoid treating your Crohn's because you have MS. The most important aspect of your Crohn's care is that your neurologist and GI doc are communicating what plans that they have for you.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
July 2016
Q: I have UC and have been on Remicade for 1 ½ years. A recent colonoscopy shows that all my ulcers are healed. All my blood work is normal. Should Remicade be stopped and my medication options go back down the treatment pyramid to an immunosuppressant or 5ASA as a maintenance drug?
A: This has been studied by several centers, mostly in Crohn's disease. You mention a lot of good things: you have been doing well symptomatically, you have "mucosal healing" on a colonoscopy, lab work looks good. Because of this, I personally would have a conversation with you about de-escalating therapy, likely to another immunosuppressant. However, the rates of flare are about 50% in the first year, so other doctors may have the "don't fix what is not broken" philosophy and tell you to continue these medications. The good news is that if you go down on therapy and have a flare, most patients can regain their remisison if they restart remicade and nowadays, we do have more options for therapy. So I personally don't have a problem if people want to try and de-escalate, provided that they are in a deep remission (symptoms and colonoscopy looking good).
ANSWERED BY:
Expert Image
Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
July 2016
Q: My 25 year old son with CD has been on Asacol HD for the past 7 years. He recently had a major flare up and has been sick for the past month. His doctor said that his condition has significantly worsened and has recommended humira. Is that a medicine he can be on long term? Is there a better alternative? With limited prescription coverage how can he afford this medication?
A: Asacol is often not enough to manage sick patients with Crohn's, so yes, I agree that he should be escalated to something more effective. There are alternatives, but I agree that he most likely needs a biologic like Humira. The other alternatives (immunomodulators like azathioprine or methotrexate) are another choice, but I believe that they have comparable risks. I usually tell patients that it's a "forever for now" medication. He has a long term condition that needs long term maintenance, and it's much safer to be on a drug for Crohn's than to be sick with Crohn's. I try to emphasize this with my patients who are reasonably concerned about the long term effects of drugs. We have made huge improvements in the care of patients with IBD and that's due to both our understanding of Crohn's, but also the medications currently available. The drug companies have patient assistance programs, so if your docs are wanting to start Humira, for example, the companies will work with you to get the medications.
ANSWERED BY:
Expert Image
Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
July 2016
Q: I have CD and have been on TPN (for five years), pantoprazole b.i.d. and Entocort EC and eat only a small amount of highly blended one ingredient food. I will have cataract surgery soon and Nsaid eye drops are recommended after the surgery. Is there stomach or bowel bleeding/irritation risk with this treatment?
A: NSAIDs can potentially cause ulceration in the bowel, but this requires more frequent oral therapy, so I suspect that drops are low risk. It really depends on how bad your Crohn's disease is currently. If you are doing well, I think it's ok to start this and follow your symptoms.
ANSWERED BY:
Expert Image
Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
July 2016
Q: I have had Crohn's for nine years now and have been on biologics for 6 years. About a year after I started Remicade I noticed I started getting scalp psoriasis. Since then it has gotten worse. I’ve tried about every medication on the market. Is it possible that Crohn's can cause other inflammatory illnesses like psoriasis or can biologics cause it?
A: Yes, you can sometimes develop psoriasis and other skin problems from the biologics like remicade. However, remicade is also used to treat psoriasis. I'd recommend seeing your dermatologist. The reality is that Crohn's disease usually has other autoimmune skin disorders that go along with it, like psoriasis, so this may not be because of your drugs but rather related to having Cron's disease.
ANSWERED BY:
Expert Image
Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
July 2016
Q: I was diagnosed with Crohn's/Colitis in late 2015. After years of suffering from IBS/Diverticulosis, I tried Lialda; Cort Enema and Uceris with no success. Currently I’m on 6MP 100 mg. for 8 weeks and 30 mg of prednisone for 3 mos. Every time I try to taper prednisone down to 25 mg, symptoms return. I can't handle prednisone side effects much longer. How long should I continue 6MP before switching to something like Humira and why can't I seem to get off the prednisone?
A: Usually, people who can't come off prednisone are called "steroid-dependent" and that's usually a sign that you need to be on more effective therapies. 6MP is a reasonable thing to try, and I usually give 8-12 weeks to see if this will work, in that you should feel better and not need steroids. If this is not the case, then going to a biologic medication like Humira is reasonable. Your GI doctor should be making sure that all of your bad symptoms are related to having Crohn's, as opposed to IBS or C diff, etc.
ANSWERED BY:
Expert Image
Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
June 2016
Q: My son (14) was recently diagnosed with ulcerative colitis. His only symptoms were gas, and fatigue and shortness of breath with exhaustion from anemia. Never any pain and only infrequent diarrhea. He was on prednisone for 7 weeks and is now on 6 MP and Apriso. I am worried about 6 MP from all I've read, especially in adolescent males. Can he be treated with Apriso alone since he's really never had typical symptoms of UC?
A: Not everyone with ulcerative colitis has diarrhea or blood in their stool. Some have pain or urgency with bowel movements. Fatigue is also a very common symptom with IBD. For many children poor weight gain or growth may be their only symptom. While it is good that your son doesn’t have many symptoms, that doesn’t necessarily mean that his disease is fully under control. It is important to ask your doctor how well his colitis is controlled because inflammation can cause problems, even if he doesn’t feel it. Chronic, ongoing inflammation of the colon can increase the risk of a flare of colitis, interfere with growth, increase his risk for certain infections, and also increases the risk of colon cancer too. For all these reasons, it’s best to have his colitis under control. Fatigue is an important symptom that can happen for many reasons. For some, it’s the main symptom of their colitis. Anemia can also cause fatigue, and often is a sign of active disease. Also thyroid conditions can develop in people with IBD. Some people with IBD also have sleep disorders, which make them fatigued. And, of course, teenagers often stay up late at night and are fatigued simply from lack of sleep. It is important to discuss his fatigue with your doctor to help sort out what the cause of the fatigue is. Now regarding medications. Most of the time, 6-MP is used either because someone has moderate to severe colitis or because mesalamine medicines (like Apriso) didn’t work. In these situations, the mesalamine family of medicines are generally not effective, and occasionally can make colitis worse. All medicines have risks. The risk of 6-MP is low, but it does have risks. There may be other alternatives to 6-MP. But each has its own risk. And it’s also important to remember that there is risk to colitis that is not well controlled (even without dramatic symptoms). So I encourage you to talk with your doctor about risks of his medicines and what the alternatives may be.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
June 2016
Q: My dad was diagnosed with ulcerative colitis in 1982 and was recently diagnosed with prostate cancer. Treatment for his cancer involves radiation therapy. The doc said the radiation treatment might impact his uc and cause more inflammation or interfere with his uc treatment. What research or information do you have on how radiation treatment might affect uc?
A: Currently we don't have much information about the impact of radiation therapy to ulcerative colitis. We do know that radiation can cause injury and inflammation to adjacent rectum and you can get radiation induced proctitis. Your cancer Doctor may want to adjust the dose and intensity of brachytherapy accordingly. Active cancer may prohibit the use of certain immunosupressive drugs and close monitoring and ensuring colitis is under control is extremely important.
ANSWERED BY:
Expert Image
Tauseff Ali, MD
University of Oklahoma, Saint Anthony Hospital
June 2016
Q: I was diagnosed with UC in 2007. I am taking Rowasa sachet and have been in remission for last 2 years. Since I am in remission do I still have to go for a regular c olonoscopy? If I am in remission is there still there a danger of colon cancer? remission is there still there a danger of colon cancer?
A: There are 2 main reasons to perform colonoscopy in ulcerative colitis: (1) to assess disease activity and monitor response to therapy and (2) to screen for precancerous and cancerous lesions. Long standing inflammation of the colon is a risk factor for colon cancer. Other risk factors for colon cancers include family history and long duration of the disease. Depending on the disease location, many gastroenterologists will start screeningfor colon cancer after 8-10 years of diagnosis of ulcerative colitis. Screening for colon cancer via colonoscopy is usually planned at a regular interval of 1-2 years. Clinical remission is different from histological remission. If you are not having symptoms, this is called clinical remission. Histological remission would be when there is no active inflammation on the biopsy. Once you achieve histological remission, you may discuss with your physician to extend the interval of colonoscopy for colon cancer screening but you would still need colonoscopy for colon cancer screening. We hope that in future we develop other non-invasive methods to screen for colon cancer.
ANSWERED BY:
Expert Image
Tauseff Ali, MD
University of Oklahoma, Saint Anthony Hospital
June 2016
Q: I have Crohn’s Disease and have used steroids over the years. What is the best way to manage severe knee pain from steroid use?
A: The best way to manage any joint pain in patients with Crohn’s disease or ulcerative colitis is to first explore the cause of the pain. Joint pains can happen due to active disease (inflammation) or other general causes such as osteoarthritis. While bone loss (osteoporosis) is common with steroids, isolated knee pains from steroids are uncommon. You may want to disc uss with your physician if it’s really the steroids or if there are other causes for knee pains. Sometimes you can get muscle weakness from steroids that can cause difficulty walking and sitting up from chair. It should get better after stopping the steroids. You should discuss with your physician if further tests are required to evaluate the knee pain.
ANSWERED BY:
Expert Image
Tauseff Ali, MD
University of Oklahoma, Saint Anthony Hospital
June 2016
Q: I am on Lialda and my GI said I should let surgeons, dentist and other doctors know that I am on this med. Why is it important for other health care providers to know about this medication?
A: It is important that your treating physicians are aware of your medical condition and the drugs you are being prescribed. You should ask your physician if there is a particular concern with this medication that he or she is worried about. In general, mesalamine therapies such as Lialda are safe drugs and don’t require any particular precautions except routine blood tests at regular intervals and monitoring for side effects.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
June 2016
Q: I am 32 years old and diagnosed with indeterminate colitis in 2006. I’ve been on Remicade for 3-4 years. I am in a flare now but feel ok. The doctor wants to add 6mp. I'm scared of side effects and would like to get pregnant soon. He says 6mp is OK in pregnancy. I would like more info on this medication and if I feel ok should I be taking something that strong?
A: The goal of therapy in inflammatory bowel disease is to not only control symptoms but also to ensure that inflammation is also improving. If you have active inflammation based on symptoms, laboratory tests or recent endoscopy, it is very important that before conception, diseasesymptoms and inflammation gets under control. Active inflammation at the time of conception or during pregnancy can bring bad outcomes to both mother and baby. The benefit of medical therapy during pregnancy to control inflammation outweighs the risk of side effects in most cases. You should have discussion with your physician regarding the choice of therapy, rationale for the therapy and side effects and then decide if this is right for you.
ANSWERED BY:
Expert Image
Tauseff Ali, MD
University of Oklahoma, Saint Anthony Hospital
June 2016
Q: I am a 47-year-old male with CD. I have a lot of commitments at work, home, and in the community. I am suffering from bouts of extreme exhaustion, weakness in my legs and a stiff, sometimes numbing sensation in my ankles. I had a resection I'm 2004 and my doctor considers me to be in remission. But I have daily problems with diarrhea and discomfort. I take Entocort and 6mp, along with two tablets of Lomodil to control diarrhea. How can the exhaustion, diarrhea and discomfort be manage
A: There are many reasons for fatigue and exhaustion in Crohn’s disease. Anemia, such as iron deficiency anemia, nutrient deficiencies such as vitamin B12 deficiency and poor sleep c an contribute to the symptoms of fatigue and tiredness. Sometimes, it could be the drugs contributing to fatigue as well. Ensure you discuss these issues with your physician. There are also multiple causes of diarrhea after surgery such as recurrence of Crohn’s disease, short gut syndrome and bile acid diarrhea as some of the most common causes. You may want to discuss with your physician about these causes and other reasons for diarrhea.
ANSWERED BY:
Expert Image
Tauseff Ali, MD
University of Oklahoma, Saint Anthony Hospital
June 2016
Q: I'm a female in my 20s and diagnosed with severe UC April 2015. I've had several courses of Lialda, prednisone, Asacol, delzicol, and so far nothing has really worked that well for me. My doctor wants me to either start Humira or possibly Remicade within the next month. My concern is that I also was diagnosed with peptic ulcers in 2008. Will either Humira or Remicade affect my ulcers in any way?
A: Anti TNF drugs such as you mentioned are not known to cause stomach ulcers.
ANSWERED BY:
Expert Image
Tauseff Ali, MD
University of Oklahoma, Saint Anthony Hospital
June 2016
Q: I was diagnosed with UC 12 yrs. ago. I take 3 1.2 mg Lialda tabs/day and that works pretty well. I haven't had flare up in a while but recent colonoscopy showed inflammation in multiple areas: transverse, ascending, etc. The dr. has prescribed 50 mg 6MP per day but I don't like the side effects (funny feeling in mouth, drinking lots of water=have to pee constantly, achy, tired). I Do NOT want to take this but doctor warns of cancer risk. Any advice or alternative treatment recommendations
A: The goals of ulcerative colitis treatment include symptom relief, healing of mucosa and minimize the risk of hospitalization and surgery. Persistent inflammation not only increases the risk of colon cancer but also increases the risk of future flare. Discuss with your physician about alternative choices if you are not comfortable with the choice of drug therapy. Different strategies can be applied when one sees active inflammation on the endoscopy in ulcerative colitis, including optimizing the current therapy (such as increasing the dose), adding immunosuppressive drugs such as 6 MP or even consideration to add biologic therapy. It will be a discussion between you and your physician regarding the risk with therapy escalation vs. risk of untreated inflamed colon.
ANSWERED BY:
Expert Image
Tauseff Ali, MD
University of Oklahoma, Saint Anthony Hospital
June 2016
Q: I have UC and I read that fecal microbiotic transplantation (FMT) might be a cure for UC. How can I get a FMT for UC treatment? Is the treatment only for active UC?
A: One study conducted by Dr. Moayyedi and colleagues assessed patients with active UC and administered them 50 mL enemas once a week for 6 weeks. They compared these patients to those receiving water enemas. 9 of 38 patients receiving FMT achieved remission with improved clinical scores and endoscopic scores (camera assessing the lining of your intestine for healing). Only 2 of 37 patients receiving placebo improved. Notably, 7 of the 9 patients who were in remission received stool from the same donor. It may be that some donors have possess specific types of therapeutic microbes but we have yet to determine what these specific collections of strains may be.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
June 2016
Q: What exactly is fecal microbial transplantation?
A: Fecal microbiota transplantation (FMT) is a procedure where stool is taken from a healthy donor and placed inside the intestine of a patient who may be suffering from a number of symptoms. It is hoped that the patient’s intestinal microbiome will be re-colonized similarly to the donor’s intestinal microbiome. This re-colonization may help some patients recover from their symptoms. Presently, FMT is considered investigational but has demonstrated particularly good efficacy in managing patients suffering from recurrent or refractory Clostridium difficile infection (CDI).
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2016
Q: I’ve had proctitis for many years and my condition recently progressed into ulcerative colitis where I go to the bathroom over 20 times per day. I have tried Budesonide, other steroids, canasa, lialda and apriso yet my condition has worsened. My doctor has recommended Humira. What is the response rate for uc patients on this medication? Is there any hope that this will help put me back in remission or should I ask my doctor about another course of treatment?
A: Humira (adalimumab) is FDA-approved for the treatment of ulcerative colitis. It does induce remission and also maintains remission in those who are responding. Just as with the other medications that you have tried, Humira (adalimumab) does not work for everyone but would be an appropriate treatment for your condition. In the randomized controlled trials that led to FDA approval of Humira (adalimumab), the remission rate was around 20%. It is difficult to translate that number to your likelihood of responding because patients in trials often have lesser response rate than we see in real life use. In that study, it appeared that extensive colitis (having more colon involved) and very high CRP (an inflammatory marker) were predictors of a non-response.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2016
Q: My daughter was diagnosed with cd Sept. 2015 and has been on Remicade but a new symptom we notice sometimes she small leaks from her rectum. Is this a normal side effect?
A: I would recommend that your daughter’s gastroenterologist examine her perianal area at their next visit. Crohn’s disease can cause fistulas (connections from the rectum to the skin), and a physical exam could check for any sign of fistula. Crohn’s disease can also cause skin tags in the anal canal that may contribute to leakage symptoms. This would also be seen on physical exam. I would recommend watching for fever, pain, or redness in this area as a sign of a developing infection. If that occurs, call your gastroenterologist to be evaluated.
ANSWERED BY:
Expert Image
Karlee Ausk, MD
Swedish Medical Group
May 2016
Q: What foods should NOT BE eaten to avoid flare-ups? Is there a diet for UC that I can live with and reduce or not have flare ups?
A: There has never yet been a diet proven to help avoid flare-ups in adult patients with ulcerative colitis or Crohn’s disease. When in remission (symptom free), many people can eat a regular diet. However, there is not one diet that will suit everyone with ulcerative colitis or Crohn’s disease. I would recommend listening to your body and eliminating any foods you find trigger unwanted symptoms. During a flare, however, I will typically recommend a low dairy, low fiber/residue diet. This diet can help minimize symptoms that accompany a flare of inflammatory bowel disease. There are small studies in children suggesting that the Specific Carbohydrate Diet may be able to help control inflammatory bowel disease in some patients. More trials are being done and this is a potentially exciting new development in the treatment of inflammatory bowel disease. This diet is restrictive, however, so I would recommend that you discuss this further with your gastroenterologist and with registered dietician guidance.
ANSWERED BY:
Expert Image
Karlee Ausk, MD
Swedish Medical Group
May 2016
Q: I will be starting the drug 6MP 50mg soon for my Ulcerative Colitis. What can I expect in starting this new medication? My doctor is currently weaning me of Prednisone. Will my appetite decrease during treatment? Any tips would help greatly?
A: 6MP is one of the common medications used for ulcerative colitis and may allow you to successfully stop prednisone. You should notice that your appetite returns to normal as you taper off prednisone. In addition, stopping prednisone can minimize any other long-term side effects of prednisone. After starting 6MP, you may notice some nausea or decreased appetite. I would recommend taking the dose at bedtime or with a meal to minimize this. This nausea often improves as your body adjusts to the new medication. 6MP can affect your white blood cell counts and your liver tests. This will not cause you any symptoms, but it is important to follow your doctor’s guidelines on lab testing to check for this side effect. About 1-2% of people can develop pancreatitis (inflammation of your pancreas) related to 6MP. Pancreatitis can cause pain above your belly button with nausea and vomiting. If this occurs, you should call your doctor because it reflects an allergy to 6MP, and the medication should not be continued.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2016
Q: What is the benefit of infusion as opposed to injections of medication?
A: When considering the benefit of different medications (whether injection or infusion), the more important factors are which medications that you are considering and your personal inflammatory bowel disease story. I consider choosing injection or infusion as a very individualized decision, and I would recommend discussing your expected disease response with your gastroenterologist. I also consider your lifestyle when making this decision. With injection therapy, you have freedom to self-administer the medication without spending time at an infusion center. You also have more freedom to travel by taking the medication along with you on trips. Some people have difficulty imagining giving themselves a shot. However, with training, this often becomes an easy task. With infusion therapy, you need to have a set appointment to get your medication. This is often every 8 weeks, so between doses you have the freedom to forget about the medication. It is more difficult to get infusions while traveling, but you travel without medication for those 8 weeks.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2016
Q: My 13 yr. old son was diagnosed with Crohn's in 3/2016. His dr. tried weaning him off the prednisone 30mg twice and it’s not working {having stomach pains/vomiting}. So this last time the dr gave him 6-MP 50 mg 1 a day,Flagyl , Pentasa & Lansoprazole but he is getting sick with stomach pain and vomiting. He is afraid to eat solid foods. He only eats applesauce, popsicles, chicken noodle soup and one carnation breakfast drink a day. Any suggestions with getting him to eat solid foods?
A: It is important to collaborate with your son’s physician and dietitian to create a feasible, realistic plan to advance solid food into his diet. Importantly, it is essential to work with the physician to make sure that his Crohn’s disease is under control and in remission and address the cause of his stomach pain and vomiting to minimize issues associated with eating. Also, the physician can advise the dietitian, you and your son of any specific foods that should be avoided given his Crohn’s disease characteristics. The presence of strictures or narrowings of the intestine may impact one’s ability to tolerate certain types of solid foods. (Narrowings can be identified by upper endoscopy/colonoscopy or by MRI imaging of regions of small bowel inaccessible by upper endoscopy/colonoscopy). Patients with strictures may be advised to avoid high fiber foods such as nuts, hard raw vegetables and fruits. If lactose intolerance is identified, lactose-free options or lactase supplements with lactose-containing foods may be advised to address associated symptoms. For some patients, certain foods may trigger or worsen symptoms. This varies between individuals. Identification and removal of specific ‘trigger’ foods may help to minimize your son’s fear of eating ‘all’ solids. The dietitian can work with you and your son to help address any nutritional deficiencies identified and maintain a well-balanced diet to make sure he meets his nutritional needs as best as possible given his specific circumstances. This is done by integrating his food preferences with physician recommendations to create a working plan. If the team decides to eliminate any foods, the dietitian can advise how to substitute other foods that will provide the same nutrients. CCFA brochure: ‘Diet, Nutrition, and Inflammatory Bowel disease’ may be a helpful resource. Link: http://www.ccfa.org/resources/diet-nutrition-ibd-2013.pdf.
ANSWERED BY:
Expert Image
Sandra C. Kim, MD
Associate Professor of Clinical Pediatrics
The Ohio State University College of Medicine
Pediatric Gastroenterology, Hepatology, and Nutrition
Nationwide Children’s Hospital
May 2016
Q: My 13 year old son diagnosed with Crohn's disease at age 6 has had an allergy to Remicade, and just recently Cimzia after two years of use. He also takes 6MP. Next choice for treatment is supposed to be Humira, but we are wondering what the possibility of another allergic reaction?
A: Although Remicade (infliximab) and Cimzia (certolizumab) are both anti- TNF agents, they are designed quite differently. You mentioned that your son experienced allergies to both of these medications. Adverse reactions to these medications are not always allergies. Typically, having a reaction to an anti-TNF agent would not deter a change to another anti-TNF agent. In fact, if a patient experiences a type of adverse reaction that requires a change in medication (decided by the physician) and the current anti-TNF agent has been effective in treating the Crohn’s disease, often the physician will switch the patient to another anti-TNF agent. Humira (adalimumab) is another anti-TNF agent. One of the most common adverse reactions of adalimumab is an injection site reaction. Clinical studies have reported injection site reactions in 12 to 38 % of adult patients treated with adalimumab. Most injection site reactions are mild and do not require stopping the medication. One cannot predict whether or not your son will develop a true ‘allergic reaction’ to adalimumab. Your son’s pediatric gastroenterologist knows the details of his Crohn’s disease and the types of reactions he has experienced. He/she will be the best resource to discuss his treatment plan and your concerns.
ANSWERED BY:
Expert Image
Sandra C. Kim, MD
Associate Professor of Clinical Pediatrics
The Ohio State University College of Medicine
Pediatric Gastroenterology, Hepatology, and Nutrition
Nationwide Children’s Hospital
April 2016
Q: I've had UC for 30 plus years and have recently been diagnosed with a rectovaginal fistula at the dentate line. It has been recommended that an abdominal proctocolectomy with an end ileostomy be performed due to the fact that the fistula will be at the level of the cuff if any pouch is made. Does this require an open surgery and is there any way that a pouch or IPAA can be successful?
A: A rectovaginal fistula is a communication between the rectum and the vagina. Most are due to obstetric injuries. Other causes include irradiation, malignancy, congenital malformations, and inflammatory bowel disease. Rectovaginal fistulas are uncommon complications of chronic ulcerative colitis, and are more often associated with Crohn’s Disease. Many are asymptomatic and found incidentally. If the fistula is symptomatic, methods of treatment such as excision and primary layered repair, fistula plug placement, endorectal mucosal advancement flap can be performed. Success rates range from 50-95%. Rectovaginal fistulas associated with Inflammatory Bowel Disease have lower success rates. Having UC for 30+ years places a person at risk for the development of dysplasia and malignancy. Surveillance colonoscopies are done annually to identify these changes. If high grade dysplasia or malignancy is found, a total procto-colectomy with either end ileostomy or construction of an ileal pouch-anal anastomosis is performed. These procedures are also done for medically refractory cases of ulcerative colitis. Removal of the entire colon and rectum with creation of an end ileostomy is usually performed if the patient has poor anal sphincter function and incontinence is an issue. The total procto-colectomy with ileal pouch-anal anastomosis or “J-pouch” procedure restores near-normal bowel function by creating a neorectum from the terminal ileum. A mucosectomy (stripping the mucosa of the anal canal to the dentate line) with a hand-sewn pouch-anal anastomosis can be performed. Mucosectomy is often associated with injury to the anal sphincters, and impaired fecal continence may be a problem post-operatively. A diverting loop ileostomy is usually performed to allow the anastomosis to heal, and the ileostomy reversed 8-12 weeks later. The operation can be done via an open or a laparoscopic approach. A pouch procedure may be an option for you.
ANSWERED BY:
Expert Image
Scott A. Strong, MD
Northwestern Medicine, Chief, Division of Surgery-Gastrointestinal and Endocrine
April 2016
Q: What is CCFA stance on MAP Vaccine for treatment of Crohns?
A: A bacteria, Mycobacterium avium paratuberculosis (MAP), has generated interest as a potential trigger for Crohn’s disease (CD). This bacterium causes an intestinal illness, Johne’s disease, in many species of animals. Johne’s disease in animals is not identical to CD in humans, but the two illnesses share similarities. The illnesses tend to begin in childhood or early adulthood; they largely affect the ileum (the lower part of the small intestine); they demonstrate similar intestinal injury, and they cause persistent diarrhea, malabsorption, & weight loss. MAP is more frequently recovered from the intestines of patients with CD compared to people with ulcerative colitis and individuals without either disease. However, several findings have caused many researchers to discount a causative role for MAP in CD. First, MAP cannot be detected in many patients with CD and has been frequently found growing in people without the disease. Second, medical therapy specifically targeted against MAP does not consistently alleviate the symptoms or eradicate the inflammation associated with CD. Third, other medical therapies that suppress the immune system (e.g., immunosuppressants) or target specific inflammatory proteins (e.g., biologic agents) are effective in CD, but would likely be associated with no improvement or worsening of disease caused by MAP. Most clinicians believe that MAP may be a part of the normal intestinal bacterial flora of many people exposed to this organism through common food sources, but is present in greater quantities in patients with CD because of the underlying immune dysfunction. Clinical trials studying MAP and CD are ongoing. MAP may play a role in the development of CD. This may be one of many different microbes that might act as a trigger for an abnormal inflammatory response in a genetically susceptible individuals. But until more convincing scientific proof emerges, it cannot be described as a primary or the sole cause of CD.
ANSWERED BY:
Expert Image
Ann Flynn, MD
University of Utah Health Care
April 2016
Q: I was diagnosed with UC in 2014 . My dr. prescribed me Lialda but I still bleed with every trip to the bathroom . My flare ups have progressed and he only prescribed a steroid . While on medication is it common to still be bleeding every time I use the bathroom?
A: If you are experiencing ongoing bleeding and flare ups despite Lialda therapy, it is important to be sure that you do not have an infection, Clostridium difficile, which may cause diarrhea and bleeding. If there is no evidence of infection, it is possible that your dose of Lialda is not high enough. Your doctor may consider increasing your Lialda to a dose of 4.8 g (4 tablets) daily. Addition of a mesalamine suppository or enema may help to increase the dose of mesalamine in your rectum and sigmoid colon, to improve disease control. Lialda begins to be released in the end of the small intestine. By the time the medication reaches the rectum, the concentration of the medication is lower and some patients need additional mesalamine delivered directly to the rectum by suppository or enema to control disease. If this does not improve your disease control and you continue to have diarrhea and bleeding, you should be evaluated with a colonoscopy to reevaluate colon inflammation. If there is ongoing active inflammation despite your therapy, you may need to consider an immunosuppressive therapy such as azathioprine, mercaptopurine, infliximab, adalimumab, golimumab, or vedolizumab to gain control of your disease, and to avoid recurrent steroid use, which is the most dangerous therapy in the long term.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
April 2016
Q: I am struggling understanding this: Despite the absence of inflammation (blood test, ultrasound, no fever, no blood), I have abdominal cramps & feel sick. I have Crohns for 25 yrs, and I have an ileostomy (just a few feet of my small bowel is left).
A: Abdominal pain and sick feeling can occur for many reasons. In the setting of Crohn’s disease, we always begin by evaluating for inflammation, with labs, as you mentioned, imaging studies such as CT enterography or MR enterography, and endoscopy evaluation. If there is no evidence of active Crohn’s disease, abdominal pain may occur due to small bowel bacterial overgrowth, an imbalance of bacteria in the gut, which can cause pain, increased bowel movements, gas, or bloating. Bacterial overgrowth is a risk when you have undergone previous bowel surgeries. Pain may also occur due to visceral hypersensitivity or irritable bowel syndrome, in which the gut pain receptors are very sensitive to stretching of the gut wall. This can be managed with dietary changes or medications to treat nerve pain in the bowel. Abdominal pain and cramping may occur due to celiac disease, a reaction to gluten. This is often diagnosed by blood testing and upper endoscopy with biopsies of the small intestine. Pain may occur due to adhesions, or scar tissue that develops due to previous surgical procedures. This is often seen on CT scanning. Infection with Clostridium difficile is less common with an ileostomy, but can still occur, causing increased ostomy output and abdominal cramping. This is diagnosed by stool testing. Gastroesophageal reflux (GERD) may cause nausea and abdominal discomfort. I recommend discussing your symptoms further with your doctor.
ANSWERED BY:
Expert Image
Ann Flynn, MD
University of Utah Health Care
April 2016
Q: I’ve had crohn's disease 35 years including 2 bowel resections. - I have been on Cimzia for 2 years and happy to be symptom free. I had a flare up after beginning a new exercise group a few years ago. I think the flare might be have been caused by a Yoga class I started. I know I have scar tissue and wonder if the scar tissue can be irritated through exercise and cause pain?
A: I would not expect exercise to cause increased inflammation from Crohn’s disease, or to cause injury or irritation to your bowel. Exercise is good for your general health, and Yoga can be an excellent way to manage stress and stay healthy.
ANSWERED BY:
Expert Image
Ann Flynn, MD
University of Utah Health Care
April 2016
Q: I am 27 and was diagnosed with Crohn’s in 2013. In late 2015 I underwent 3 surgeries for perirectal abscesses and doctor started me on Remicade. But as April 2016 my surgery wound seams fresh and has pus and blood discharge 2 or 3 times a week with pain. My dr. says continue Remicade till we see no discharge at all. Now Remicade only works for 10 days on me during which there's no discharge of pus or blood but after the 10 days the discharge starts again. What are other treatment options?
A: You and your doctor may consider reimaging your pelvis with a study such as an MRI of the pelvis to look for undrained collections of fluid in this area. You may consider follow up with your colorectal surgeon, as well, to ensure that areas of infection (abscess) in the perianal area are adequately drained. You may need an additional exam under anesthesia with your colorectal surgeon, possibly with placement of a seton (a drain in the rectal and anal area) to allow your fistula sites to adequately drain. You will need adequate drainage at these sites for the fistulas to heal. Remicade is a good choice of therapy with perianal fistulizing disease. To be sure that your Remicade dose is optimized, your doctor may consider checking a Remicade trough level prior to your next dose (a blood test). If your drug level is not adequate, an increased dose of Remicade may improve your response. This drug level also permits your doctor to ensure that you have not developed an antibody to the Remicade therapy, which would impair your response to the drug. If this was the case, you could change to another drug in the class, such as Humira (adalimumab). Your medical therapy could be further optimized by adding a second immunosuppressive agent such as Azathioprine, mercaptopurine, or Methotrexate.
ANSWERED BY:
Expert Image
Ann Flynn, MD
University of Utah Health Care
April 2016
Q: I am on maintenance for UC and have a herniated disc that causes me a lot of pain. I know NSAIDS are not allowed, but what about Celebrex? I hear that it can be tolerated and not throw you into relapse.
A: Small studies have suggested that non-selective non-steroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen, are more likely to cause inflammatory bowel disease flares than COX-2 selective therapies, such as Celebrex. In two small studies, patients who received Celebrex (celecoxib) for short periods of time remained in remission. These studies have some limitations. The length of treatment was short (12 weeks or less), and all patients in the study were in remission on medical therapy. So, if you need an NSAID medication for management of your back pain, Celebrex may be preferred, and will likely be best tolerated if you are in remission before starting. It’s best to discuss your disease activity, risks and benefits with your doctor before considering starting Celebrex therapy.
ANSWERED BY:
Expert Image
Ann Flynn, MD
University of Utah Health Care
April 2016
Q: My son was diagnosed with Crohn's at 10 years of age and is now 24. An ileostomy was performed when he was 21. About eight months after surgery the Crohn's flared and was severe. At that time he applied for a bone marrow transplant clinical study that was being done Seattle Washington. The study was closed before he received his transplant. Are there any similar studies being done anywhere at this time? He is currently extremely ill and needs help
A: Stem cell transplantation is an area of ongoing research in IBD. Further data is needed before this can be integrated into conventional clinical practice. Carefully monitored, long-term clinical studies on stem cell transplant for Crohn’s disease are being conducted in clinical trials. I recommend going to https://clinicaltrials.gov for a list of currently recruiting clinical trials. Enter “stem cell” and “Crohn’s disease” into the search engine on the main page and you will receive a list of currently active clinical trials, details about each trial, patient inclusion criteria, and contact information for the study coordinators if you are interested in participating in a particular study.
ANSWERED BY:
Expert Image
Ann Flynn, MD
University of Utah Health Care
April 2016
Q: My Daughter is in her 50's and has had Crohn's most of her life, losing many feet of intestine due to surgeries. Many body parts are able to be replaced...heart, liver, lungs, skin, etc...why can't the intestine be replaced?
A: Despite advances in medical therapy for Crohn’s disease, a large proportion of patients with Crohn’s disease will require surgery within 10 years following diagnosis. Repeat surgical resections may result in short bowel syndrome, or an inability to absorb adequate fluids and nutrients. These individuals may require ongoing use of intravenous total parenteral nutrition (TPN) for nutrition. In patients beginning to fail TPN, small bowel transplantation may be considered. However, experience in small bowel transplantation for inflammatory bowel disease is very limited. Outcomes are generally poor, with low rates of survival at 5 years. Complications of the procedure include organ rejection and recurrent infections due to immunosuppression. Small bowel transplantation for Crohn’s disease may be life-saving in a small number of patients, and this procedure may become more common as surgical and postoperative care improve over time. However, further research is needed to better understand bowel immunology, the role of the gut organisms (microbiota) both in Crohn’s disease and in rejection, immune pathways involved in Crohn’s disease and intestinal transplantation, to improve outcomes with small bowel transplantation for Crohn’s disease.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
March 2016
Q: I have been diagnosed with Crohn's. I frequently get blisters on the roof of my mouth. Is it normal to get these blisters in my mouth? I am being treated with Imuran.
A: Crohn’s Disease can involve any part of the GI tract from “mouth to anus”. The mouth blisters may very well be due to Crohn’s Disease and may respond to a change in therapy, including use of a topical steroid medication. However, you would also want to exclude a drug side effect or certain viral infections that could cause similar findings.
ANSWERED BY:
Expert Image
John S. Hanson, MD
Gastroenterologist, Carolinas HealthCare System
March 2016
Q: I am a 30 year old female, and I want to get pregnant. I have been following up with my GI, and haven't had any flare-ups in over 2 years. She just did a sigmoidoscopy and wants me to wait due to some inflammation in the rectum. The doctor has informed me that everything needs to be clear/in remission. What are the risks of getting pregnant with inflammation in the rectum and if it is necessary to wait as I have been feeling great with no symptoms?
A: In general, pregnancy outcomes are better if underlying inflammatory bowel disease is in remission. Your question reflects the distinction between “clinical” remission (the absence of symptoms) and “deep” remission (the absence of symptoms and signs of inflammation). The latter usually implies a normal endoscopic appearance of the bowel. Most of the data regarding pregnancy and disease activity has relied on clinical remission. It would be helpful to know exactly how much inflammation was seen. If the inflammation is minimal (based on accepted systems such as the Mayo Clinic score ) and you have no symptoms, it would be safe for you to proceed with pregnancy. If the inflammation is more significant than suggested by symptoms, a change in treatment may be indicated before proceeding with pregnancy.
ANSWERED BY:
Expert Image
John S. Hanson, MD
Gastroenterologist, Carolinas HealthCare System
March 2016
Q: I am going to be having my 5th Remicade treatment mid- March. I feel well. Is it ok for IBD patients to exercise? How long after infusion should I wait before exercising?
A: It is safe for patients with IBD to exercise if symptoms are controlled and they are not anemic. It is safe to exercise after receiving Remicade but probably best not to do so on the day of the infusion.
ANSWERED BY:
Expert Image
John S. Hanson, MD
Gastroenterologist, Carolinas HealthCare System
March 2016
Q: I have UC and after long term steroid use I’ve gone from a normal bone density reading of 1.2 (2 yrs. ago) to a 10. PC wants me to start on BONIVA 1 pill per month. I am currently on Entyvio. Can Boniva cause side effect or trigger UC symptoms?
A: Bone density loss is a common side effect of steroids and requires aggressive treatment. Drugs like Boniva can be used in patients with ulcerative colitis and usually do not cause a flare in symptoms. However, GI side effects such as abdominal pain, constipation, or diarrhea can occur. There are no reported interactions between Boniva and vedolizumab (Entyvio).
ANSWERED BY:
Expert Image
John S. Hanson, MD
Gastroenterologist, Carolinas HealthCare System
March 2016
Q: I have had Crohn's disease for 25 years. I am on Remicade and Pentasa. I have recently been diagnosed with Peripheral Arthritis. The rheumatologist recommended methotrexate. Are there other medications that can help with the symptoms besides going on Methotrexate?
A: One option is an older drug, sulfasalazine, which can reduce joint inflammation. It could be substituted for Pentasa since it is a combination of a sulfa antibiotic and 5- ASA (the active drug in Pentasa). However, it can also be associated with side effects such as headache, nausea, and abdominal pain. It cannot be used if you have a sulfa allergy. Low dose Prednisone can also be used but side effects make long term use difficult. A third option would be celecoxib, a non-steroidal anti-inflammatory drug which may cause less intestinal irritation. While this may be effective for the arthritis, it can be associated with a flare of your Crohn’s Disease.
ANSWERED BY:
Expert Image
John S. Hanson, MD
Gastroenterologist, Carolinas HealthCare System
March 2016
Q: My 22 year old son has had Crohn's for 14 years. He has been on Remicade for the past 9 years. He recently relocated and his new doctor immediately suggests a colonoscopy then switching to Entyvio because possible side effects are less. He has been symptom free while on Remicade so I'm questioning why switching since it currently works and he has had no adverse reactions. Should he make the switch or stay with the current course until it stops working or a flare up?
A: If he has had disease that was visualized by colonoscopy in the past and he has not had a recent exam (in last 2-3 years), it might be reasonable to do a colonoscopy to confirm that he is in full or “deep” remission. If remission is confirmed, there is no current data to suggest that switching to vedolizumab (Entyvio) is any safer. If he has significant inflammation noted, a change in treatment may be warranted. An observational study called TREAT does confirm the relative long term safety of infliximab (Remicade).
ANSWERED BY:
Expert Image
John S. Hanson, MD
Gastroenterologist, Carolinas HealthCare System
March 2016
Q: I was diagnosed with UC in 2012. I am in remission with lialda. My AST and ALT liver enzymes have gone from just slightly elevated (a couple points above normal range) to 152 and 214 respectively in three months. I am a non-drinker, not overweight, do not have diabetes. Can this be a medication side effect? Should I be concerned?
A: Though any drug can cause elevated liver enzymes, this is not a common side effect from mesalamine (Lialda). Drug withdrawal may be the only way to prove or disprove this, short of a liver biopsy. There are a number of other causes that need to be excluded, including viral, autoimmune, and metabolic diseases. There are blood tests that can screen for these. An inflammatory condition of the bile ducts called Primary Sclerosing Cholangitis (PSC) can be seen in patients with ulcerative colitis. This is usually associated with elevations in your serum alkaline phosphatase in addition to the AST and ALT. If further blood tests do not reveal an answer, an MRI exam of the liver and bile ducts may be warranted.
ANSWERED BY:
Expert Image
John S. Hanson, MD
Gastroenterologist, Carolinas HealthCare System
March 2016
Q: Our 13-year-old son was diagnosed with CD in 2014. He has been responding well to treatment with Apriso and Mercaptopurine (6mp). However, he has developed severe acne, molluscum contagiosum, and recently, a mild case of shingles. He also has hyperpigmentation across his upper chest. We test the symptoms accordingly, but is there anything complimentary treatment to help protect and soothe his skin, such as coconut oil or other treatments or remedy?
A: The skin issues were not caused by IBD so it is hard to say if any specific medications could have prevented them. Molloscum contagiosum is caused by a pox virus. When taking immunosupression such as the 6mp, molloscum may have more lesions and may last longer. Shingles is also caused by a virus and caused by prior exposure to the varicella zoster which causes chicken pox and gets reactivated. The immunosuppression may have increased the chance of this occurring. Acne is common in a 13 yo. Use of prednisone may increase the chance or worsen acne. Use of Isotretinoin is controversial in IBD patients as there are some case reports of symptoms of IBD starting after this medication. There is not current evidence to confirm or refute this. Most other acne especially topical ones should be ok One definite association is that use of 6MP/imuran increases the risk of skin cancer over a patient’s lifetime. In patients that use or have used 6mp, it is recommended that they use sunblock, wear protective clothing to reduce sunlight exposure and have yearly visits with a dermatologist. Alternative therapy which may have benefit, one could consider would be manuka honey, aloe vera and tumeric and water. There is not much data to recommend but there is likely not much side effects. There are some skin manifestations that have known associations with IBD. The first is called erythema nodosum which tends to be tender red nodules on the shins. It occurs in about 15% of IBD. It is usually self-limiting meaning it goes away with out any treatment. Pyoderma gangrenosum is more rare at 0.4 to 2%. It generally looks like ulcers and the most common place is on the leg. Psoriasis causes red and scaly patches that may be itchy and shares some genetics with Crohn’s disease so it can be more common in patients that have Crohn’s compared to the rest of the population. It has also reported to be a side effect of anti-TNF medications.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
March 2016
Q: My son is 17 and diagnosed with uc at age 15. He is suffering from severe insomnia and has missed a lot of school this year due to his sleep issues. What is the best treatment for insomnia? Can his UC medication cause insomnia?
A: Sleep is important in IBD. It is both important in that fatigue is a common complaint in IBD as getting quality sleep may help with. There is also thought that getting insufficient amount of sleep is pro-inflammatory. It has been shown that sleep disturbances is common in IBD with both patients with active and inactive disease. Sleep disturbances are worse If disease is active, patients may have stooling overnight which may cause them to get out of bed often and make it difficult to sleep. Prednisone may cause patients difficulty trying to sleep. This often improves on lower doses and further after stopping the medication. There is less insomnia if all of the medication is taken in the morning. Some patients with inflammatory bowel disease may have depression or anxiety which may affect sleep. Some patients may also have increased fatigue, which may cause them to be in bed during the day. This poor sleep hygiene may affect the ability to fall asleep during an appropriate time. Daytime sleeping should be avoided. Trying to exercise in the morning and not at night might be helpful. If the above does not work, consider discussing trying melatonin with you son’s physician.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
March 2016
Q: My daughter is 12 years old and was diagnosed with severe Ulcerative Colitis 5 1/2 months ago. She started on Remicade in December and her ESR and CRP are in normal ranges and her iron is back up. About 48 hours after her 3rd infusion, she experienced severe stomach pains that were intermittent for 2 days. She has also continued to have some mild bleeding (not with every stool) and days of discomfort and stomach aches. Is this reaction typical with Remicade use?
A: The common symptoms for Ulcerative Colitis include diarrhea, abdominal pain and blood in stool. The improvement in the inflammatory markers is a good sign and likely the Remicade is causing an improvement in the colon. It is unclear just because the inflammatory markers improved that there was a full healing. There is a chance that abdominal pain and bleeding may due to the underlying disease. These symptoms are not likely due to the Remicade itself and are not usually a side effect of the medication. One should consider another cause such as constipation as you did not mention stool consistency. As the inflammation improves, the diarrhea may resolve and hard stool moving through the colon may cause abdominal pain and blood in the stool. If there is hard stool, trial of a stool softner may resolve the symptoms and would suggest the likely cause. Another thing to consider is sending a stool culture and c diff as these infections can also cause abdominal pain and blood in the stool. If symptoms have not resolved, it can be investigated if disease is in remission. Mucosal healing is the goal so if there is not full treated disease then it must looked at how to maximize medical management. If disease in remission then non-IBD causes must be investigated.
ANSWERED BY:
Expert Image
Sandra C. Kim, MD
Associate Professor of Clinical Pediatrics
The Ohio State University College of Medicine
Pediatric Gastroenterology, Hepatology, and Nutrition
Nationwide Children’s Hospital
February 2016
Q: Can low dose naloxone be successfully used in treating IBD?
A: Low dose naltrexone represents a potentially attractive therapeutic option in IBD given the safety profile. There have been two small studies to date, one in adults and the other in the pediatric population. Unfortunately for the primary outcome of clinical remission in adults, naltrexone did not demonstrate a statistically significant benefit. They did meet their secondary endpoint of modest clinical improvement by one cut-off used, but did not for the other. Similarly, they did not demonstrate a statistically significantly higher rate of endoscopic remission in those receiving naltrexone compared to placebo, though endoscopic improvement, which can be more subjective, did demonstrate a significant benefit. The drug was tolerated well in both patient populations. Given the mixed data on benefit and lack of longer follow-up, I do think larger confirmatory studies are going to be required before this agent becomes a regular component of IBD therapy.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
February 2016
Q: What research is being conducted on intestinal transplants? Is this a viable option for treating IBD?
A: Intestinal transplantation is most often considered in the setting of Crohn’s with multiple resections or those with ischemic bowel injury requiring a significant amount of small bowel be resected. Specifically in IBD, they are considered only in cases where intestinal failure and TPN dependence due to the significant complication rate and risks, as with any organ transplantation. This surgery is not performed as a primary treatment for CD, and is really reserved only for those with short gut syndrome.
ANSWERED BY:
Expert Image
Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
February 2016
Q: What progress is being made with Helminth (worms) therapy
A: It has long been hypothesized that Trichuris suis (the whipworm) and other helminths may play an immunomodulatory role. Mouse models have demonstrated that mice infected with these worms have less robust immune responses when exposed to harmful bacterial components that would normally stimulate the immune system, and that this effect may persist for some time after helminth infection. These findings, replicated in vitro using human cells, have prompted several researchers to pursue them in clinical trials (quite appropriately!) In addition to several case reports and case series demonstrating a possible benefit in IBD, there have subsequently been two multicenter placebo controlled trials, one in UC by Sommers and colleagues, and the other by Sandborn and colleagues in CD. In the UC study, there was no significantly increased rate of clinical response or remission, though symptom scores were modestly improved in those receiving the helminths compared to controls at 12 weeks. The CD study was performed only to assess the safety of the therapy, with complication rates similar to placebo. Based on these two studies, I do not recommend the use of helminth therapy in IBD at this time, as further research is required.
ANSWERED BY:
Expert Image
Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
February 2016
Q: Is the drug in clinical trials called Mongersen effective for IBD?
A: Mongersen is a new type of immunosuppressive medication targeting a molecule called SMAD7. Phase 2 studies demonstrated very promising results at 2 weeks, with remission rates of up to 65% and response rates up to 72% depending on the dose. The medication was well tolerated. These results are incredibly promising. However, the data are from a Phase 2 study, which are typically smaller and best designed to determine the optimal dosing for new therapies being assessed, while also measuring initial safety. Larger phase 3 trials are currently being conducted to assess the efficacy and safety of this new drug in a much larger patient population with IBD. We are eagerly awaiting the results of this study, which have not yet been published.
ANSWERED BY:
Expert Image
Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
January 2016
Q: I have UC and my OB-GYN knows little about pregnancy and IBD. When I’m ready to get pregnant will I need to switch to a new OB-GYN. How can I find an OB who knows how to treat pregnant women with IBD?
A: Your local gastroenterologist is likely the best resource for an OB that is familiar with IBD. I recommend all my pregnant IBD patients are followed as high risk, so by a maternal fetal medicine specialist. They may not deliver the baby, but they monitor for growth (very important since IBD patients can be too small) and for complications in the mother. There is an article to help OB’s take care of pregnant women with IBD. The reference if you would like to share with your OB is Care of the Pregnant Patient with Inflammatory Bowel Disease. Mahadevan, Uma and Matro, Rebecca. Obstetrics and Gynecology. 126 (2): 401-412, August 2015.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2016
Q: I would love to know what medications are "safe" and which ones aren't during pregnancy.
A: The unsafe medications are methotrexate and thalidomide which should be stopped at least 3 months, ideally 6 months, before getting pregnant. They are both associated with severe birth defects. I will also often take patients of mesalamine as it has dibutyl phthalate in the coating which in animals is associated with birth defects. An increase in birth defects has not been shown in humans with mesalamine, but as none of the other mesalamine drugs have DBP, I switch. The other IBD medications are generally low risk but discuss further in detail with your GI doctor as every patient is different.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2016
Q: Is there any research on taking birth control pills with IBD? Can birth control pills trigger a flare up?
A: You can take birth control pills with IBD. There is no data associating it with an increase in flares. However, birth control pills and IBD are associated with an increase in blood clots. If you smoke it is even worse (so don’t smoke and if you do, don’t take birth control pills!!!). I recommend an IUD for my patients as it is only progesterone so there is no increase in blood clots. If you do use OCP then use the lowest hormone amount possible.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2016
Q: I have been experiencing a lot of bleeding and blood clots. I often have the urge to go to the bathroom but I am unable to pass anything but blood. I’ve been on prednisone since Dec 1, 2015 with no relief. My doctor has stopped my Asacol and Humira in preparation for me starting Entyivo in the next week. Is it normal not to be able to pass stool when in a flare up?
A: An exacerbation of ulcerative colitis or Crohn’s can sometimes present with difficulty passing bowel movements (rather than diarrhea) due to significant inflammation in the rectum (UC or CD) or due to a stricture from CD. It is important to inform your physician of these changes, so your medical treatment can be modified.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2016
Q: I have CD. I also have achalasia, treated with Heller Myotomy surgery. Difficulty swallowing is now under control but still have regurgitation, nausea and discomfort in upper torso. I also belch excessively (300 +/day). I’m having a hard time finding information for this atypical CD symptom. I would like to learn more about this topic what can you tell me about this condition and are there any research articles on this issue?
A: The lower esophageal sphincter (LES) fails to completely relax in achalasia leading to difficulty swallowing food. The most effective treatment for this is a Heller myotomy, the cutting of the LES resulting is a constantly relaxed LES. This allows food not to get stuck and accumulate in the esophagus. Relaxing the LES, though, increases the risk for gastroesopheal reflux. An intact LES prevents gastric fluid and debris from refluxing backwards into the esophagus. It is important to follow gastroesophageal reflux precautions such as keeping the head of the bed elevated when sleeping and avoid eating 2-3 hours prior to sleeping. Acid suppressive therapy will likely be needed as well. Your physician can further counsel you on your symptoms and treatment.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2016
Q: I have lymphocytic colitis and would like to know if there is a special diet for the condition?
A: Lymphocytic colitis is a type of microscopic colitis. The inflammation is only visualized under the microscopic and the inflammation has a specific pattern. There are two forms of microscopic colitis, collagenous colitis and lymphocytic colitis. As far we know, there is no specific diet that can treat microscopic colitis, nor a diet that makes the condition worse.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2016
Q: I have Crohn's Disease and have read that I should avoid leafy greens, including kale, spinach, salads and bread high in fiber. If I remove these foods from my diet, what are the best alternative sources of fiber?
A: Insoluble found, found in many vegetables and fruit, is not recommended with active Crohn’s disease or in Crohn’s stricturing (areas of narrowing in the intestine) disease. Insoluble fiber may cause increased discomfort (abdominal pain and/or diarrhea) in the setting of active Crohn’s disease and not recommended. In the setting of Crohn’s disease stricturing disease, since insoluble fiber is not completely digested there is a risk of insoluble fiber getting stuck in a stricture and causing blockage. Many fruits and vegetable may be still ingested if cooked. Lists of foods with insoluble fiber are included in the Diet, Nutrition, and Inflammatory Bowel Disease brochure at the CCFA website. Once Crohn’s disease is in remission and there are no strictures, a regular diet may be resumed.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2016
Q: I had a resection in April 2015 and I’ve had a lot of problems since. I am now battling indigestion and heart burn. I take famotidine twice daily but it does not help. What are some other treatment options?
A: Symptoms of indigestion and heartburn suggest gastroesophageal reflux. Treatment for gastroesophageal reflux includes dietary and lifestyle modification and acid suppressive medical therapy. Your physician can review your symptoms in more detail to see if there is a trigger and if/how it may related to your surgery. Medication options aside from histamine receptor antagonists (such as famotidine) include proton pump inhibitors.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2016
Q: I have ulcerative colitis and chronic Epstein Barr infection. I’ve had both conditions since 2008. I have recently started Entyvio with a rise in my EB levels, but I am continuing with treatment as no one seems to know the significance of a rising level (lymphoma was ruled out). Is there any research or articles on uc and Epstein Barr infection?
A: Epstein-Barr Virus (EBV) is a ubiquitous, with most of the adult human population exposed over the age of 25. The concern in patients with inflammatory bowel disease (IBD:ulcerative colitis or Crohns’ disease) is related to EBV exposure and immunosuppressant therapy. In patients that have not yet been exposed to EBV, there is concern that a new exposure to EBV may induce a lymphoproliferative disorder when a patient is taking an immunosuppressant. There is also concern for reactivation of the virus leading to a lymphoproliferative disorder when taking immunosuppressants. Both scenerios are rare. In a study by Linton et al published in Alimentary Pharmacology and Therapeutics journal in 2013, IBD patients were more likely to reactivate EBV (serum viral EBV DNA detected) and immunosuppressants further increased the risk of reactivation of EBV. Being exposed to EBV is not the same as having active virus. If you have active virus, your medical team will need to weigh the risks of continued medical treatment and evaluate other potential treatment options such as other medical therapies and surgery.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2016
Q: I am newly diagnosed with Crohn's. I had no obvious symptoms, other than iron deficiency anemia. I am 68 years old, and the doc said I've probably had the condition for decades. Results from a PillCam test showed ulcers in the small intestines, and blood work showed 2 markers suggesting Crohn's. The doctor put me on Pentasa. I never had any symptoms before, but with the medication I now get mild pain and gas. Can this be a medication side effect?
A: Gastrointestinal symptoms (abdominal cramping and diarrhea) can occasionally occur with Pentasa and cease immediately after discontinuing Pentasa, a type of 5-aminosalicylate (5ASA). This is not an uncommon side effect of a 5-ASA. I recommend notifying your prescribing physician so alterative therapies can be considered.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
December 2015
Q: I had a 2-step jpouch surgery in 1996. For the last two years I’ve had significant problems with bleeding ulcers in the pouch. I also had 3 APC (argon plasma coagulation) procedures to try to stop bleeding in last 3 months and 8 iron infusions in last year. I’m still bleeding. Would these types of problems indicate that its time to go with perm ileostomy? How extensive is this procedure?
A: While undergoing a pouch procedure can improve overall quality of life, many complications such as stricture, stenosis or pouch dysfunction often occur. Pouchitis is the most common complication following pouch surgery, and is a common cause of bleeding and anemia. Inspection of the pouch by endoscopy may show diffuse inflammation which bleeds easily when touched. Less common are discrete ulcers which bleed. Although pouchitis may be the cause of these ulcers, it is important to note that sometimes the original diagnosis of ulcerative colitis may have been incorrect, and that Crohn’s disease may actually be the underlying disease. This is best diagnosed by biopsies of the ulcers. If the biopsies show chronic inflammation consistent with pouchitis, treatment with steroid enemas or oral antibiotics such as Ciprofloxacin or Metronidazole may be of benefit. If biopsies suggest Crohn’s disease, medical management with TNF-alpha blockers or 5-ASA enemas may be helpful. If medical therapy fails to improve your symptoms, surgical treatment including removal of the pouch and conversion to an end ileostomy may improve the overall quality of life. This type of surgery can be very difficult due to extensive scarring, and should be performed only by surgeons comfortable with re-operative pelvic surgery.
ANSWERED BY:
Expert Image
Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
December 2015
Q: My 15 year old daughter was diagnosed with UC about a year and a half ago. She has been on Remicade & Pentasa for the last 6 months. She tried a 6mp over the summer and developed pancreatitis. Her doctor would like to try methotrexate now. Can you tell me more about this treatment and if a patient can experience symptoms similar to 6mp side effects?
A: It's not clear from the question whether your daughter is currently symptomatic, but I'm taking from the question that she is not. I suspect the situation is that your provider is interested in combination therapy which does seem to increase the likelihood of response, as well as prolong the benefit, of anti-TNF therapy (Remicade). The specific risk:benefit assessment should be discussed with your gastroenterologist, but under the right circumstances- such as trying to prevent or decrease the production of antibodies against Remicade- there may be a role for methotrexate. This would not be the right forum to discuss the side effect profile of a drug, but methotrexate does not have the same association with pancreatitis as 6-MP. If the decision is made to proceed with methotrexate it may administered orally or as in injection once weekly. Some laboratory monitoring is typically utilized at the outset, but it is generally well tolerated. While not generally utilized independent of other drugs in ulcerative colitis, it can be quite effective used as described above to aid in efficacy and in prolonging the benefit of Remicade.
ANSWERED BY:
Expert Image
Sandra C. Kim, MD
Associate Professor of Clinical Pediatrics
The Ohio State University College of Medicine
Pediatric Gastroenterology, Hepatology, and Nutrition
Nationwide Children’s Hospital
December 2015
Q: My 6 yr old was diagnosed with uc 6 months ago. Shortly after his diagnosis and a couple MRIs, his doctors diagnosed him with Chronic Recurrent Multifocal Osteomyelitis (CRMO). CRMO has caused constant leg pain. His CRMO symptoms appear to worsen whenever he is having a UC flare. He currently takes methotrexate injections. There is not much literature about this dual-diagnosis. How successful are the two diseases are managed. What is the prognosis for patients with these conditions?
A: CRMO is quite a rare condition and the reports of its association with IBD are rarer still, but there has been some literature accumulated over the past 15 years or so mostly through small case series. There are no specific guidelines regarding management of CRMO and IBD, but general consensus at this time seems to be that for most patients controlling the bowel disease leads to control of the CRMO. Many of the drugs that have been discussed for management of CRMO are also used to manage IBD with the possible exception of pamidronate. Over time CRMO seems to follow a course of waxing and waning symptoms, but when associated with colitis, while there is limited literature, a reasonable target would seem to be control of the bowel disease first with specific and independent therapeutic consideration of CRMO only if symptoms linger once the bowel disease is quiescent.
ANSWERED BY:
Expert Image
Sandra C. Kim, MD
Associate Professor of Clinical Pediatrics
The Ohio State University College of Medicine
Pediatric Gastroenterology, Hepatology, and Nutrition
Nationwide Children’s Hospital
November 2015
Q: My medication, Asacol HD, has become so expensive. Do you know of any way to save on this medication? I have Insurance, but will soon be on Medicare.
A: If you have commercial insurance the company that makes Asacol offers discount cards that may help. These are not able to be used however once you have Medicare or Medicaid. In general Lialda and Apriso tend to be cheaper and insurance companies prefer these. They are an even substitution for Asacol as they are all mesalamine products.
ANSWERED BY:
Expert Image
Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
November 2015
Q: What is the efficiency of Mangosteen (pill or juice) in Crohn's patients? Is there a forum where Crohn's patients rate or comment on their experience with Mangosteen ? What is the risk of allergy since Crohn's disease patients have often food allergies?
A: Mangostene is the latest in food fads claiming to cure just about anything. The truth is that mangostene although a delicious fruit is not any more nutritious than any other less exotic fruit like strawberries, pomegranate, oranges etc. Food allergies are always something to take into consideration whether you have IBD or not so if you are going to try some just proceed with caution if you have multiple food allergies to fresh fruits.
ANSWERED BY:
Expert Image
Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
November 2015
Q: I was diagnosed with Crohn's in 2006 and had a bowel resection 2008. I never show signs of inflammation on any of the blood or stool samples. Is this uncommon?
A: No this is not uncommon. Depending on the extent of your disease prior to surgery it could take a while to come back or if you are one of the lucky few there is a very small chance that it may not. Again that depends on the extent and location of the disease prior to surgery. There is no way to know for sure. It is certainly encouraging though but should be followed closely. The current recommendation would be to jump back in with a biologic medication at the first sign of inflammation.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
November 2015
Q: I've been experiencing an UC flare up since August 2013. I took lialda and asacol without any major improvements. In September 2014 my doctor put me on 40 mgs of prednisone and 200 mgs of 6mp. This medication regimen initially helped but by Aug 2015 I was back into a severe flare-up. In Aug 2015 I had my first Remicade infusion and responded very well. After 2nd infusion my symptoms came back. Now my doctor wants to try me on Humira. What are the chances humira can get me into remission?
A: Tough to say. It might be that initially you got the best response from the prednisone and the 6MP may not have helped. The Remicade sounds like it may have helped so unless you have developed antibodies to it (which can be checked with a test) you may just need to have your dose increased if this has not been done. The other option is to consider an adjunct medication like methotrexate which can help on its own and boost the efficacy of the Remicade. 6MP works like this as well. We call it dual therapy because you would take both Remicade and methotrexate or Remicade and 6MP at the same time. It would be good to exhaust the Remicade option before moving to Humira which is very similar to Remicade. Lastly they could switch you out of class to Entyvio which works a bit different than Remicade and Humira if these other things don’t work.
ANSWERED BY:
Expert Image
Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
November 2015
Q: I have Crohns disease, and pain is a major factor in my daily life. Where can I go to have a doctor evaluate me and get me on a long term pain medicine? I would like to know if going to a pain management center is a good option?
A: Pain management is a good option so that you can have a good pain regimen that does not lead to addiction. The ultimate strategy however is to deal with any underlying reason for the pain ( ie inflammation, stricture, obstruction, adhesions, abscess etc.). By dealing with these underlying causes of pain, it should eliminate or lessen the need for pain medications.
ANSWERED BY:
Expert Image
Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
November 2015
Q: I’m on pain meds for Crohn’s. I went from oxycodone to fentanyl patches. While reading the side effects it says constipation is a side effects, which I don't have and diarrhea which do have. What is the best pain medicine to take with Crohns?
A: You will need to work with your provider to figure out where the pain is coming from as each type of pain is addressed differently. The ultimate pain medication is NO pain medication. Pain medication is a band aid. It is best to identify and treat the underlying cause of the pain so that no pain medication is needed.
ANSWERED BY:
Expert Image
Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
November 2015
Q: I am thinking of switching from Remicade to Entivyo due to skin rashes. Remicade has kept me in remission for 10 years. What is the likelyhood that I develop rashes with Entivyo?
A: It is very unlikely that you will develop skin rashes with Entyvio. We often switch people from Remicade to Entyvio if they are getting rashes. The only thing that is not known is if the Entyvio will work for you as well as Remicade. So if the rashes are only minor, you may want to consider staying with Remicade and treating the rashes topically with a cream. But if they are severe or debilitating then switching to Entyvio might be a better option.
ANSWERED BY:
Expert Image
Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
November 2015
Q: I had an ileo-colic re-section in May 2014 after structuring Crohn's in my ileum. I had a follow-up colonoscopy at 6 months that was clear with no disease. I am currently on no meds. What interval and testing do you suggest for surveillance going forward? At what point would most doctors initiate medical treatment ? I am in a low risk category, age 56, disease onset age 47 and non-smoker.
A: Some providers would start you back on a biologic within a few months post surgery to be safe and avoid the constant monitoring. Others would just closely monitor your progress and at the first sign of inflammation, start you back on a biologic medication. Either way, you are correct that close surveillance will be warranted. The best tools we have for monitoring this is a CRP and fecal calprotectin. CRP is a blood test that will let us know if there is any inflammation in your system but this is not a reliable marker for everyone. Fecal calprotectin is a stool test that is much more specific and reliable as a marker of gut inflammation itself. If any of these were elevated or if there was any question about the test results vs your symptoms then a colonoscopy would be the next step to evaluate how you are doing. We try to avoid serial colonoscopies however by using either or both the CRP and fecal calprotectin as a more regular form of surveillance.
ANSWERED BY:
Expert Image
Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
November 2015
Q: My daughter was diagnosed at 13 and since that time has had terrible anxiety. Is anxiety brought on by ulcerative colitis? is this common in teenagers
A: Anxiety and psychological distress is common in patients suffering from inflammatory bowel diseases, including ulcerative colitis. Psychological evaluation and support by trained experts is highly recommended. It is frequently difficult to discern whether the disease and flares bring about the psychological distress, or if periods of emotional stress can induce disease flares. There is intense communication between our brain and our intestines, frequently related to as the gut-brain axis. Therefore, it is possible for gut inflammation/stress to induce anxiety, and vice-versa.
ANSWERED BY:
Expert Image
Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
November 2015
Q: Is it ok to drink coffee if you have ulcerative colitis?
A: The short answer is yes. Keep in mind that coffee does act to move the bowels for many people. That is, it causes the large intestine (colon) to contract and to move stool along. This effect seems to be caused by ingredients other than caffeine so switching to coffee with lower caffeine content may not change the effect. If you are already symptomatic with cramps and diarrhea, this effect from coffee consumption may increase these symptoms. Therefore, the best way to answer this question is to see how the coffee affects you individually.
ANSWERED BY:
Expert Image
Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
November 2015
Q: My results for the IBD differentiation blood test showed a high proteinase 3 (PR3) autoantibody levels, of 3.4 ai, with a note attached from the lab about a high result indicating an active disease state of a syndrome called wegener's, or GPA. My GI doc just said it supported his observations and diagnosis of UC. Are there other tests that can be done to confirm a diagnosis of UC?
A: You had a test that is in a category called “serology”. This looks for antibodies that your body is making. Antibodies are made by cells of your immune system in response to proteins found on foreign invaders such as viruses and bacteria and such antibodies are an important part of our body’s defense. In individuals who have a disease or illness that involves their immune system, it is common for them to also make a antibodies against proteins found in their own bodies. These “self-directed” antibodies are what were measured by the test you had and the result is consistent with you having a condition that involves your own immune system. The best way to know if you have ulcerative colitis is the entire clinical picture including your history, physical exam findings, negative stool cultures and findings on your colonoscopy.
ANSWERED BY:
Expert Image
Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
November 2015
Q: Colonoscopy vs MRI? If one has already had one or more colonoscopies, and the GI is asking for a follow-up test, is an MRI a good alternative? Is it easier for a patient to do an MRI? Anything unpleasant to expect? Colonoscopies are quite an ordeal!
A: I am sorry to hear that you had such difficulty with your colonoscopy. An MRI and colonoscopy look at different aspects of your gastrointestinal tract. Keep in mind that your intestine is a tube. The colonoscope looks at the inner lining of that tube. The MRI looks across the wall as well as the rest of your belly (abdomen). So, if the question is whether your IBD is actively causing inflammation of the lining of your intestine, the best test is a colonoscopy. If the question is whether there is damage occurring across or outside the wall of the intestine, an MRI is a better test.
ANSWERED BY:
Expert Image
Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
November 2015
Q: I was diagnosed with Crohn's 3 years ago. Since then, I have had hemorrhoids with a lot of bleeding, ulcers, inflammation and started Humira because of a burning sensation in my upper-center stomach. I've been on the Humira for 3 months and the burning sensation is back. I've told my doctor and no action has been taken. The pain almost leaves me crippled and unable to walk around to accomplish daily activities. Is there anything I can do for this pain or something I should be telling my doctor?
A: I am sorry to hear of this pain. The question is why are you having this pain? Keeping in mind that Humira (generic adalimumab) is not a treatment for hemorrhoids, is it possible that you have Crohn’s disease and the “hemorrhoids” are actually swelling in the area from active Crohn’s disease? If so, this is likely the reason why your doctor started you on Humira. The discussion now needs to center on finding the cause for your pain—is your Crohn’s active elsewhere in your gastrointestinal tract? To answer this question may take more testing to look for such IBD related inflammation.
ANSWERED BY:
Expert Image
Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
November 2015
Q: My 30 year old daughter with cd has had shingles 2 times in the last 5 years. Her GI has recommended that she take Humira. He wants her to get a shingles vaccine prior to starting treatment. How effective is the shingles vaccine in patients on a biologic therapy?
A: This is a great question for your daughter to also discuss with her primary care physician. If it is decided to take the shingles vaccine, bear in mind that this is a live viral vaccine and must be given at least 6-8 weeks before any immune modifying therapy such as Humira is started.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
November 2015
Q: I was diagnosed with UC in 2014. This past spring my UC flared up and I began to bleed when I took Zyrtec for my seasonal allergy problem. I am having problems again with my allergies for fall. I am unsure which allergy medicine to take. I am almost in remission with my UC and I don't want any more flare-ups. I am presently taking Lialda, Rowasa and Anusol Supplement. I only take Tylenol for pain when needed. Is there an OTC allergy medicine that will not trigger a flare up?
A: It is a general rule in medicine that any given person can have any given side effect on any given day. That being said, it is not generally reported that well controlled UC will become active from taking Zyrtec. Therefore, it seems fine to try it again keeping in mind that a second such experience should prompt you to take a different allergy medicine.
ANSWERED BY:
Expert Image
Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
November 2015
Q: My son is 24 yrs. old and has had Crohns for 12 yrs. I have been doing a lot of research on the use of medicinal cannabis oil and the relief of Crohns symptoms. Any research on medical cannabis oil and if it is used does it show up in your urine?
A: My understanding is that depending on the dose, this can change a urine drug test positive. Regarding its use for Crohn’s disease, marijuana is used recreationally because of its mood altering affect. Recognizing this, it can affect how one feels. Whether it actually has a biologic effect on the disease process of Crohn’s is currently under investigation.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
November 2015
Q: My daughter has Crohn’s and is away at college. She thinks that the change in her diet and eating white rice is causing greater discomfort. Many things I read show white rice can be good to eat during flare-up. Is it possible that the rice is causing symptoms and that she should avoid eating rice?
A: There are several different issues. The most important is what does one we mean when they say a “flare up”? Does this mean that one is experiencing gastrointestinal (GI) symptoms or that the disease is progressing and so that there is more inflammation that is leading to the symptoms? Whether one has IBD or not, they may experience any one of the common GI symptoms: abdominal pain, nausea, vomiting, diarrhea or constipation. There are biological, psychological and social factors that can all lead to GI symptoms. We even talk this way in common parlance—“gut wrenching experience”, “butterflies in the stomach”, etc. Certainly changes in diet can affect us and lead to GI symptoms. When one has IBD, it is easy to make the assumption that a change in GI symptoms means a change in the disease or “flare up”. Actually, it is more common that with a change in environment and diet, your daughter is experiencing these symptoms somewhat independently of her Crohn’s. This is especially true if she was in a durable remission before going away to school and continues to adhere with her treatment plan while at school. In addition to diet, there are other factors to consider here as potentially playing a role in her symptoms. How well is she dealing with the change and adapting to leaving home? College is notorious for a change in sleep habits and such changes have been shown to adversely affect our GI tracts and lead to symptoms. There may be dietary factors even beyond rice and her knowing her own body and what is agreeing with her is the best way to figure this out. During times when your daughter is experiencing GI symptoms it may be necessary for your daughter to eliminate rice for a few days and reintroduce it to see if it is truly a problem. Finally, this indeed could be from an increase in her disease activity and if her symptoms persist or advance, it would be wise for her to contact her IBD team to make a plan on how to evaluate for this and treat accordingly
ANSWERED BY:
Expert Image
Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
November 2015
Q: I have had Crohn's Disease for five years and been on Remicade for 4 years. My treatment is going well. However I have gurgle sounds from my stomach after eating meals. Sometimes the sounds are quiet other times very loud. My MRI showed that everything looked normal and there were no narrow areas. Can this be related to CD? What can cause this gurgling sound and how can it be stopped?
A: It is very good that you already had the MRI. This test is recommended for IBD patients over CT scans to decide if there are strictures as there is no radiation involved. Sometimes you need a dedicated MR Enterography rather than a regular MRI to answer this question. Provided that there is really no stricture, you could have small bowel bacterial overgrowth, which is an imbalance in the bacterial flora of your small bowel, typically related to surgery but also possibly caused by diabetes, thyroid problems, or aging. There is a simple breath test you could do to decide if you have this condition and the treatment is 2 week course of antibiotics. Other possibilities for gurgling could be malabsorption of a specific component of your diet, such as dairy or fiber. You can consider limiting these two components from your diet and see if the gurgling improves.
ANSWERED BY:
Expert Image
Joshua R. Korzenik, MD
Brigham and Women’s Hospital, Director of Crohn's and Colitis Center, Division of Gastroenterology, Hepatology and Endoscopy
October 2015
Q: I have both Crohns and Candidiasis. The diets for each seem to be mutually exclusive. I've been eating the same few foods for two years and am going nuts. What can I eat?
A: I find that diet is such an individual topic that can not be generalized to groups of people. There is no diet identified that clearly causes or treats Crohn’s disease when studied in groups of patients. I would recommend that you avoid foods that give you symptoms. It sounds easy, but can be challenging to try to identify trigger foods. Adding foods back one at a time is the best strategy. A food diary can often be helpful as well. The CCFA has published a patient handout to help give advice (http://www.ccfa.org/resources/diet-nutrition-ibd-2013.pdf) and you may find it beneficial to meet with a registered dietician to help customize your diet.
ANSWERED BY:
Expert Image
Karlee Ausk, MD
Swedish Medical Group
October 2015
Q: I am taking humira but my insurance will stop in Oct what can I do?
A: Talk with your doctor! It will also be helpful to talk with your contact at the drug company. Some people are connected with a Humira Nurse that assists them. There are programs available through the drug company to help people with low cost or no cost medications based on need. There may also be other programs in your area that your care provider is aware of to help during this time.
ANSWERED BY:
Expert Image
Karlee Ausk, MD
Swedish Medical Group
October 2015
Q: I have been having unbearable right side pain the past few months. My doctor did an MRE and said there was scar tissue in the Ileum. I also had another colonoscopy and then the next day was my remicade infusion. For 10 days since then I have been running a temp between 99 & 101, a severe headache & side pain. They did a ct scan and ruled ruptures and infection. Are these typical symptoms following a colonoscopy? What is the treatment?
A: These are not common symptoms after a colonoscopy. Because you are on Remicade, I would recommend being evaluated for sources of infection if you are having a fever. The treatment would become more clear once your care provider finds the source for the problem.
ANSWERED BY:
Expert Image
Karlee Ausk, MD
Swedish Medical Group
October 2015
Q: Are there specific tests that identify TNF as the source of active ulcerative colitis inflammation, or are biologics just automatically tried if immunomodulator doesn't induce remission? I have mild to moderate kidney dysfunction and a family history of lupus. The prospect of starting Humira scares me, especially since I work in a public setting where exposure to infection is constant.
A: In clinical practice, there are not TNF tests available. Because of studies showing that a significant percent of people with ulcerative colitis have a good response (and a higher percent than respond to immunomodulators), they are frequently used when immunomodulators are not helping. All of these medications do carry risks that should be considered, but often the benefit of controlling difficult to manage ulcerative colitis outweighs those benefits.
ANSWERED BY:
Expert Image
Karlee Ausk, MD
Swedish Medical Group
October 2015
Q: My son with Crohn's is on Remicade. He is in college and trying to arrange a semester abroad in Tokyo, Japan. How can we find out if Remicade is even available in Japan? We have tried speaking to pharmaceutical company that makes the medication but to no avail.
A: Remicade is available in Japan. It would require careful planning, but travel abroad can be accomplished successfully. Your son would need to quickly establish care with a GI provider in Japan who would be able to provide the Remicade while he is abroad. His care provider here may be able to help find a hospital or provider that would be appropriate.
ANSWERED BY:
Expert Image
Karlee Ausk, MD
Swedish Medical Group
October 2015
Q: I have Crohn’s. I am also taking chemotherapy for uterine cancer and it causes severe diarrhea. I plan to take a combination of Questran (cholestrymine ) and Imodium during the next round of chemo. Lomotil no longer works for me. What other diarrhea control products are available?
A: Diarrhea due to chemotherapy can be challenging to manage, especially when you also have Crohn’s disease. Your plan of Immodium and cholestyramine sounds like a good next step. There is a stronger medication that can help to slow diarrhea, but it is a narcotic medication. If the maximum doses of Immodium and cholestyramine are not effective, you would need to talk to your care providers about the downsides of other options and whether it would be appropriate to try a stronger medication during this time.
ANSWERED BY:
Expert Image
Karlee Ausk, MD
Swedish Medical Group
October 2015
Q: I have severe Crohn's. I am on Pentasa 4,000mg/day, Purinethol 50mg/day, Prednisone 20mg/day and just had my 3rd Remicade infusion and I am seeing no relief. I am very concerned about the Remicade and Purinethol treatments as I am seeing no benefits. I am also experiencing side effects from the Remicade that concern me. After each treatment I experience confusion, a drastic drop in blood pressure, trouble focusing the eyes and flushing in the face, should this treatment be discontinued?
A: It sounds like you are really struggling to get your Crohn’s disease under control. I would recommend that you meet with your doctor to review your response to the medications and any side effects that you are having. I can not say whether the treatments should be stopped without seeing you, but your care provider should be able to provide that guidance. I try to give Remicade around 12 weeks to see if it is effective. I then use symptoms and other tests (sometimes labs, imaging, or endoscopy depending on the patient) to help make this decision.
ANSWERED BY:
Expert Image
Karlee Ausk, MD
Swedish Medical Group
October 2015
Q: I have CD for 21 years. I am currently on 6mp 50 daily (I cannot tolerate higher dose, it affects my liver) and 1.2 Lialda 4 daily and once again in a flare up. I have tried Humira and Remicade. I have been on prednisone many times in the past and will not go back on. I've also taken Entocort and meslamine. What are your thoughts on Ustekinumab?
A: Ustekinumab is a medication currently used for psoriasis that works by blocking inflammatory proteins called interleukins. There are early studies showing promise in the treatment of Crohn’s disease. Because it does not block TNF, it offers a new mechanism for treating Crohn’s and may be a good option for patients in whom Remicade and Humira have had no effect. It is not yet FDA approved for Crohn’s disease. On an individual basis, it might be the best next treatment for certain patients. Your care provider would need to help you make this decision and see whether insurance coverage would be possible for your individual case.
ANSWERED BY:
Expert Image
Karlee Ausk, MD
Swedish Medical Group
October 2015
Q: I just read that Humira has a success rate being 50-60% in mild to moderate cases of Colitis & Crohn's. What is the success rate of Remicade for severe cases of Crohn's? Given the side effects I am having I am considering going off treatment, but I am concerned as I am told that if I need to go back on it, it may not work because the body builds up antibodies against the drug.
A: In patients newly diagnosed with moderate to severe Crohn’s disease, combination therapy with Remicade plus immunomodulator has about 56% chance of steroid free remission at 26 weeks and Remicade alone has about 45% likelihood of steroid-free remission at 26 weeks. This study is not looking at patients who stopped therapy. Stopping therapy does increase the chance of anti-drug antibodies and loss of effectiveness in the future. I would recommend an honest discussion with your care provider before stopping any therapy.
ANSWERED BY:
Expert Image
Karlee Ausk, MD
Swedish Medical Group
October 2015
Q: I am currently on Lialda, Canasa, 6-MP, Simponi, levsinex, VSL#3 and miralax. I’m allergic to Remicade and after a year humira didn't help anymore. My stool is mostly formed but the issue is mucous and blood leakage especially when passing gas and before each BM. I’m trying non RX such as l-glutamine and amp floracel. Are there other treatment alternative options?
A: Curcumin has had some evidence showing benefit for mild symptoms. There are other alternative therapies that you will read about on the internet, but they do not have traditional evidence showing benefit in inflammatory bowel disease. That does not mean that they don’t work, but we just do not know enough about them to be able to recommend them at this point. I always recommend keeping your provider involved so that they are aware of everything that you are taking (even supplements). In addition, it is possible that your symptoms are mostly rectal and a topical mesalamine suppository or enema could be helpful.
ANSWERED BY:
Expert Image
Karlee Ausk, MD
Swedish Medical Group
September 2015
Q: What can be done for chronic pain caused by abdominal adhesions brought on from many surgeries for Crohn's Disease
A: Every surgery creates new scar tissue, or “adhesions”. In general, surgeons try not to operate to relieve abdominal pain thought to be caused by adhesions unless there are associated symptoms such as intestinal blockage or obstruction. A thorough evaluation should be performed prior to any planned surgery to rule out causes of pain due to other factors. An Upper GI/ Small Bowel Follow Through study is a radiographic study where one drinks contrast and then multiple X-rays of the abdomen are taken to evaluate kinks or twists in the bowel. If these are found, a patient may benefit from surgery and lysis of adhesions. If contrast flows through the intestines without delay, surgery will not likely help the patient. An interventional procedure called a splanchnicectomy can be performed to deaden the intra-abdominal nerves by injecting the nerves with alcohol. This procedure can be done operatively or by interventional radiology, but is used rarely. Medical management of pain might best be treated by a Pain Specialist who can combine medical and complimentary alternative medical strategies to relieve pain.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
September 2015
Q: What are good ways to handle the mental aspects of the disease? How to reduce worry, which cause flares for me?
A: The first way to handle anxiety and worry about IBD is to get educated about your disease. Knowledge is power. A good source of education is the CCFA which has a number of books concerning medications and natural history of IBD. Dr. Sunanda Kane has published an excellent book thru the AGA on “Living with IBD.” This is available at www.amazon.com . Finally, recent articles have emphasized that stress and anxiety as well as sleep deprivation can cause flare of IBD. Recently we have started referring patients to psychologists for Cognitive Behavior Training (CBT) and instruction with coping skills and stress management. Most important is having a doctor whom you trust and who you can share decision making with.
ANSWERED BY:
Expert Image
Eugene Greenberg, MD, F.A.C.P., F.A.C.G.
Carle Physician Group Urbana, IL
September 2015
Q: I was recently diagnosed with UC after an emergency room visit. I feel like the hospital just told me the diagnosis and sent me away. I have so many questions! Will I have to have regular colonoscopies? Will I need to change my diet? What are my next steps?
A: I suggest that you join the CCFA and go online to review two sections on the “Newly Diagnosed” website: About IBD and Monitoring Your Disease: http://www.ccfa.org/what-are-crohns-and-colitis/newly-diagnosed.
ANSWERED BY:
Expert Image
Eugene Greenberg, MD, F.A.C.P., F.A.C.G.
Carle Physician Group Urbana, IL
September 2015
Q: I am newly diagnosed with Crohn's after 20 years of symptoms. I also had diabetes for 20 years now I am experiencing a major Crohn's flare. I am insulin dependent (I have been able to limit/control both in the past). What can be done to manage sugar levels with my Crohn's meds? Can Crohn’s and diabetes be related?
A: Crohn’s and diabetes are not related, but both are common conditions, so there are many patients who will have both conditions. Good control of Crohn’s disease and in particular avoiding frequently or long term treatment with steroids is important. Aim of treatment for Crohn’s disease is “steroid free remission.” Good control of blood sugars will require a strict, healthy low glycemic diet and regular exercise. If blood sugars become suddenly difficult to control, suspect a complication of the Crohn’s disease (i.e.: infection, fistulae, or flare).
ANSWERED BY:
Expert Image
Eugene Greenberg, MD, F.A.C.P., F.A.C.G.
Carle Physician Group Urbana, IL
September 2015
Q: I am a 35 year old male and my doctor is suggesting that I begin 6MP and Remicade treatment for Crohn’s. My wife and I are trying to start a family and I am concerned about the side effects of the medicine as it relates to infertility and birth defects. What medications should be avoided?
A: The only medications to be avoided are Methotrexate in young female patients of childbearing age and Flagyl. Many studies have shown that 6MP and anti-TNF agents do not lead to birth defects or infertility and are safe before and through pregnancy. There is an incidence of pre-term birth and low birth weight associated with Crohn’s disease itself. Best time to conceive is when disease is in remission. The biggest mistake is stopping medication which results in a flare of IBD and impaired health of the mother. Remember, healthy moms have healthy babies; and sick moms have sick babies. Men can use Methotrexate before conception with no problem of fetal abnormality or infertility.
ANSWERED BY:
Expert Image
Eugene Greenberg, MD, F.A.C.P., F.A.C.G.
Carle Physician Group Urbana, IL
September 2015
Q: My GI is trying me on Lialda. I took it for a month no real problems. I woke up with severe back pain 5 days ago, also bloated, and sick. I stopped the Lialda and back pain subsided. Started taking again to control bloating and the back is in pain started again. Could these symptoms be side effects of the medication?
A: Lialda is a safe medication. It is unlikely a cause of back pain and bloating. Lialda is not indicated for bloating, but for the treatment of IBD. I would suggest checking biomarkers (CRP and fecal calprotectin) to see if your symptoms are due to a flare of IBD. Rarely, 5-ASA drugs (such as Lialda) can cause a worsening of IBD symptoms because of an “allergy.”
ANSWERED BY:
Expert Image
Eugene Greenberg, MD, F.A.C.P., F.A.C.G.
Carle Physician Group Urbana, IL
September 2015
Q: I am 63 and have Crohn’s Disease. I had one blockage about three years ago and I have a bladder infection almost monthly. I am on Lialda and have also been on Entocort. Now my doctor wants to try me on Humira. With so many bladder infections, would taking Humira make it worse?
A: First need to determine the cause of frequent infections. Is it related to a complication of IBD? If so, then Humira is probably indicated to control IBD. Humira can cause reactivation of disease (TBC, Histoplasmosis, CMV, etc.) but does not cause serious infections. Humira should not make it worse, and in fact, may make it better.
ANSWERED BY:
Expert Image
Eugene Greenberg, MD, F.A.C.P., F.A.C.G.
Carle Physician Group Urbana, IL
September 2015
Q: I was diagnosed with Crohn’s approximately ten years ago. Pentasa worked very well for me for nine years. The past six months I have been on Lialda without success. My doctor is suggesting Humira or Remicade infusions. I am very concerned about the side effects of both meds. How do I decide which drug to try first?
A: Both medications are anti-TNF biologicals with similar mode of action. Both have the same effect in producing response and remission (60% for both, 30% long-term remission for both). Infliximab (Remicade) is given IV at 0, 2, and 6 weeks, then every 8 weeks. Humira is given at 0, 2, and 4 weeks and self-administered subcutaneously with a shot every 2 weeks. Some physicians feel that Infliximab works better for Ulcerative Colitis than Humira. In final analysis, the choice is up to what the insurance company or HMO will allow. Both drugs have the same adverse events.
ANSWERED BY:
Expert Image
Eugene Greenberg, MD, F.A.C.P., F.A.C.G.
Carle Physician Group Urbana, IL
September 2015
Q: My state has not approved medical marijuana. Would Marinol (Dronabinol) be a good alternative to help with increasing the appetite of cd patients? What are the risks and benefits of this medication?
A: There are more risks than benefits. Marinol has been used to stimulate appetite and prophylactically to prevent nausea and vomiting in cancer patients on chemotherapy. There are multiple psychiatric and gastrointestinal adverse events as well as cardiac side effects secondary to sympathetic stimulation. It is not FDA-approved for IBD.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
September 2015
Q: I recently started taking Uceris for lymphocytic colitis. I am frequently nauseous and can’t eat. Could this be a medication side effect?
A: While possible, this is not a frequent adverse event with Uceris and is probably an unlikely cause of your problems.
ANSWERED BY:
Expert Image
Eugene Greenberg, MD, F.A.C.P., F.A.C.G.
Carle Physician Group Urbana, IL
September 2015
Q: It is difficult to pass gas and hard to move my bowels. Is Benefiber good to take for constipation?
A: Fiber is good for constipation, if the cause of constipation is insufficient fiber in the diet (the dietary requirement for men is 35 grams daily and for ladies is 25 grams daily). Other choices may be stool softeners or stimulants. It is worth trying Benefiber with increased fluids with or without stool softeners.
ANSWERED BY:
Expert Image
Eugene Greenberg, MD, F.A.C.P., F.A.C.G.
Carle Physician Group Urbana, IL
August 2015
Q: Sometimes I have stomach aches when I eat gluten and sometimes I don't. So, is it a good idea to go gluten free if you have Crohn's disease?
A: This is a very good question. While there are people in the general population that might have a gluten intolerance and not a true gluten-sensitive enteropathy which represents a condition called Celiac disease and can lead to small bowel inflammation and malabsorption. Gluten is a protein that is found in wheat, barley and rye. People have reported increased symptoms with gluten intake including gas/bloating/diarrhea/nausea, but that doesn’t mean their Crohn’s disease activity is affected by gluten intake. There are no studies to date that show that a low gluten/gluten-free diet leads to improvement in inflammation or healing of Crohn’s disease, even if it does make some patients feel better. Celiac disease (gluten-sensitive enteropathy) is more common in patients with Crohn’s disease than the general population and can be evaluated by your provider if appropriate. The CCFA has some information about diet and nutrition on their website that you can find here: http://www.ccfa.org/resources/diet-and-nutrition.html
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
August 2015
Q: Is there much literature regarding Crohn's and chronic Lyme disease (also known as MSIDS)?
A: To my knowledge there is nothing in the literature linking Crohn’s disease to chronic Lyme disease or Multi-system Infectious Disease Syndrome (MSIDS). There is a great website to search the medical literature using key terms if you had further questions about what has been published on either condition, it is PubMed www.pubmed.com and is available to everyone.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
August 2015
Q: Is it possible to have Crohn's when literally every test has been negative including multiple biopsies? I have all the symptoms of Crohn's
A: It is hard to say without knowing that evaluation you have had and what has come up negative. But if you have had a thorough evaluation including assessment of your small bowel and there have not been any changes to suggest Crohn’s disease then it is unlikely that active Crohn’s disease is causing some of your symptoms. We often think that if Crohn’s disease is causing significant abdominal symptoms that we shouldn’t have to look that hard to find the disease, severe symptoms. If you have any questions about your symptoms or your diagnosis, it might be helpful to seek a second opinion with any of the IBD providers listed on www.ccfa.org
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
August 2015
Q: My knees have started with tightness in the back and then swell up all around knee caps to the point of no weight barring. Back and forth and sometimes both. Doc said it may all be tied in to my CD. I am about to start Remicade hoping it will calm things down. Are problems with the knees a common CD symptom?
A: Extra-intestinal manifestations of Crohn’s disease are actually quite common. One of the most common manifestations is related to joint pain and/or swelling called peripheral arthritis. In some patients their joint symptoms parrellel their bowel symptoms (when their bowel disease is active they notice that their joint symptoms are most active) and this can often improve with treatment of underlying bowel inflammation. Less common is a type of inflammation of the joints that happens independently of bowel inflammation (no bowel symptoms but have joint symptoms) but is less likely to involve larger joints like the knees. It is also possible that people can have joint symptoms are not related to their Crohn’s disease and could represent a primary rheumatologic condition. If your physician has decided to start Remicade and you have improvement in your joint symptoms that would be great.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
August 2015
Q: Given the national shortage of methylene blue and indigo carmine what are your centers using for chromoendoscopy?
A: While there have been several reports of a national shortage of indigo carmine, I have not heard of a shortage of methylene blue. I have asked around at several IBD centers in the area and have not heard of anyone being impacted by the shortage and not being able to obtain either product.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
August 2015
Q: What is ischemic colitis?
A: Ischemic colitis refers to inflammation of the colon (colitis) due to low blood supply to the colon. Although the disease is not common, it is more likely to be seen in older individuals and can manifest as symptoms of abdominal pain, diarrhea, rectal bleeding. There are a variety of conditions that can result in ischemic colitis, the most common being low blood flow due to low systemic blood pressure or local factors effecting blood flow like constriction of blood vessels or blood clot, but often a cause can’t be identified.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
August 2015
Q: I have had active moderate UC for three years, in constant flare with only one remission period when I took a very intensive dose of prednisone for several months, but once I began tapering off of it the remission ended and the side effects were terrible. My doctor said that if the current course of medications doesn't work, I should either go back on prednisone or to Humira or Remiicade. What are the risks and potential rewards of going on prednisone versus a biologic?
A: This is a very good question and without fully understanding the medications you are currently on I will do my best to answer your question. We define remission as a steroid-free remission, meaning that you feel well for at least 3 months off steroids. While steroids have a role in helping us get some patient’s into remission (also known as induction), we also have other medications that are safer than using chronic steroids that have been approved and are effective in inducing remission, some that you mentioned being adalimumab (Humira) and infliximab (Remicade). In fact, these agents are ideal in someone that has required multiple courses of steroids as you are less likely to be able to maintain a steroid free remission without escalation of your therapy. Additionally, while steroids can help people get into remission, they should not be used long term due to side effects, some of which I am sure you have experienced, but others include risk for bone loss, vision changes and most importantly the highest risk for infection complications with long-term use. The anti-TNF based therapies (as you had mentioned) have been approved for both induction of remission and maintenance of remission, which means we can get people feeling well without steroids and keep them off steroids as we “maintain remission”. Biologic based therapies are safe and effective in the management of ulcerative colitis and this has been shown in several studies. We know that chronic exposure to steroids can be associated with worse outcomes for our patients, which of course we would like to avoid.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
August 2015
Q: I have active Crohns and being treated with Humira. I had gallbladder surgery 4 years ago. Since the gallbladder surgery diarrhea worsened and finally bile salt found to be culprit. I'm controlling it with Welchol with meals and Caltrate at night. Is this a common problem for Crohns patients with gallbladder surgery? It took 4 years to get to the bile salt diarrhea because of the active Crohns, previous intestine surgery, etc.
A: Bile acid malabsorption which can present as diarrhea is due to the presence of excess bile acids (or bile salts) in the colon, which leads to stimulation of electrolyte/water secretion, decreased colon transit time and patients will experience diarrhea. There are several conditions that can lead to bile acid malabsorption, one like you mentioned is Crohn’s disease. Patients with Crohn’s disease involving the last part of their small bowel (terminal ileum) are at risk because bile acids are typically absorbed in terminal ileum. This includes patients with active disease, chronic disease and those who have had surgery of this area. In addition patients who have undergone cholecystectomy can also develop bile acid malabsorption that can lead to this same phenomenon. The treatment for patients is to use bile acid binding agents, like cholesevelam HCL (Welchol), which you are on.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
August 2015
Q: My 16 yr old daughter has IBS. But I think its Crohn's. She had one hospitalization (they could find nothing). She has been off and on "better", but randomly for the last couple of weeks very sick. She has lost weight and is so thin that I'm worried about that as another issue. (5'6" and maybe 100lbs). She is so tired and is getting depressed because it really seems as if our health plan has decided there's nothing wrong. We have a peds GI. What else should we do to find out what is wrong?
A: I am sorry to hear your daughter is having these problems. It is great that you already have a pediatric gastroenterologist your daughter is seeing. I would continue to discuss with your physician your daughter’s specific symptoms and ask for their recommendations. If you are not comfortable with your current physician, seeking a second opinion is also always an option. You mentioned your daughter is becoming depressed, so please seek treatment for her with your primary care physician or a psychologist, as it could also be impacting her symptoms. If she has any thoughts of self-harm then that is a medical emergency and would need to be seen in an emergency room.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
August 2015
Q: I am 16 years old and have had Crohn's disease for 3 years. I lost some weight but gained it all back. I’m on a low residue diet. It is hard to stay healthy and keep my weight the same. I can't have fruits or vegetables. The vegetables have to be cooked but I don't like vegetables anyways. But I do like fruit. Not being able to eat healthy things has made me gain so much weight and I'm starting to feel insecure. I don't know what to do to get my weight down. Do you have any suggestions?
A: First, I commend you for your desire to be healthy and maintain a healthy weight. I would recommend speaking with your gastroenterologist about your concerns and ask if you can be referred to a Registered Dietitian. A dietitian can help you develop a plan for a healthy diet within your specific dietary requirements.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
August 2015
Q: It's been five weeks since my resection and I'm still so very tired. Is this normal? Also I am depressed and it seems to be getting worse every day. Finding this out at age 59 that I have Crohn’s is just so hard to accept.
A: a. You should be feeling more energy by this time after a resection, especially if the resection removed active Crohn’s disease. You should let your GI doctor know how your are doing, perhaps you should be checked for anemia. Did you taper off steroids recently (such as prednisone)?. Sometimes the body becomes dependent on steroids. If you are not having abdominal pain, fevers or vomiting it is unlikely there is a complication from the surgery. You should also see your primary care doctor about the depression. Major surgery and a new diagnosis of Crohn’s must be quite overwhelming. That may be a major factor here. Your primary doctor can also check for other problems such as thyroid disorders. Bottom line – connect with your GI doctor and primary doctor about your symptoms.
ANSWERED BY:
Expert Image
Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
August 2015
Q: I have ulcerative colitis. Is it safe to take food grade diatomaceous earth? And if it is safe, can it be ingested it when actively bleeding?
A: There is no substantiated benefit from ingesting diatomaceous earth. Silica can be toxic. Its use is not recommended.
ANSWERED BY:
Expert Image
Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
August 2015
Q: I have traveled to 15 countries in the last five years and the only two times I have had a flare up is when I've visited countries where I have to drink bottled water. Could changing your diet for ten days to an acid diet cause a flare up? I normally drink tap water at home which is ph7, most bottle waters are acid.
A: The stomach is normally very acidic (less than pH 3.5) so subtle differences in drinking water pH should be of no consequence.
ANSWERED BY:
Expert Image
Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
August 2015
Q: I was recently diagnosed with mild distal ulcerative proctitis. I'm 44 years old and I am concerned about the risk of it spreading to other parts of my GI. I can't seem to find any consistent stats on that risk of it spreading. What does the latest research show? And, is it possible for it to go away completely?
A: a. There is a chance that the colitis could spread higher up in the colon. The chance of that over the next several years is probably between 10 and 30%. The inflammation will not spread to other parts of the GI tract. If inflammation does turn up in the small intestine or stomach then a diagnosis of Crohn’s disease needs to be considered. b. The proctitis is unlikely to go way completely, but proctitis sometimes seems to have longer periods of inactivity, without need for medicine, than more extensive colitis
ANSWERED BY:
Expert Image
Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
August 2015
Q: I was diagnosed with CD 28 yrs. ago. Nine years ago I had a resection of my small intestine at the illiim w/ a dx of cancer followed by chemo treatments. Six years ago, I had colon cancer followed by chemo treatments. Both cancers were found by colonoscopies. I understand the 10 year colonoscopy rule for colon cancer, but my concern is w/ my crohn's which is in my illium (came back) & in my duodenum. How often should I be screened for both these sections & what is the preferred screening
A: There is no absolute guideline for this situation. It is almost certain your doctor will not allow you to go 10 years between colonoscopies. Exactly how often colonoscopy should be done will depend on details such as the activity of your Crohn’s. b. As you know, colonoscopy can only see a very small part of the small intestine. Surveillance to prevent small intestine cancer is typically not done because small intestine cancer is much, much less common than colon cancer Your case is difference, however. Discuss this with your doctor. There are different ways to monitor the small intestine including a video capsule device, MR scan or CT scan.
ANSWERED BY:
Expert Image
Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
August 2015
Q: Would you say that you are in actual remission when you are still having a lot of bleeding every time you go to the bathroom and/or still having horrible joint pain?
A: These symptoms sound like your inflammatory bowel disease may not be in remission. There could be other causes of the bleeding and joint pains, such as hemorrhoids and primary joint disease, but this needs to be discussed with your GI doctor and/or primary doctor.
ANSWERED BY:
Expert Image
Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
August 2015
Q: I am 52 years old and was recently diagnosed with mild Crohn's Disease. I have had little to no symptoms up to this point. My GI is recommending no treatment or dietary changes, and follow up in one year (from my original colonoscopy). Is this the standard protocol for someone newly diagnosed with mild disease?
A: a. With very mild disease this may be acceptable, but generally only with very mild disease because Crohn’s treatment works best when started early. It sounds like your doctor is, appropriately , planning to keep a close eye on your Crohn’s and will start treatment if any worsening. b. There are no established specific dietary treatments for Crohn’s disease. Dietary recommendations may vary depending on the nature/behavior of an individual’s Crohn’s.
ANSWERED BY:
Expert Image
Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
July 2015
Q: Can a colectomy be performed without ever having to have a bag? I read online and my GI doctor told me that if my intestine is healthy, they can connect the small intestine and anus in one surgery without having to wear temporary colostomy bag?
A: Whether or not to create a temporary ostomy depends on many factors- the type of surgery to be performed, the nutritional status of the patient, whether or not the patient smokes, and whether or not the patient's immune system is compromised due to steroids or other medications. For surgery where the anastomosis (where the bowel is reconnected) is very low in the pelvis, the risk of leak is much higher and most surgeons will perform a temporary ostomy to allow the anastomosis to heal. After 8-12 weeks, after the patient has been allowed to heal, weaned off steroids or become nutritionally better, the ostomy is usually reversed at a second operation. For patients who smoke, are anemic, obese, malnourished or are on steroids, most surgeons would perform a temporary ostomy as these factors all increase the risk of leak. The reason a leak is bad is that stool will leak into the abdominal cavity from inside the intestines. That is a potentially life-threatening condition and usually emergency surgery is performed to wash out the infection and create an ostomy. The bottom line is that the surgeon takes into account all of these factors to decide whether an ostomy will be necessary.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
July 2015
Q: I have moderate pericardial effusion after using Delzicol for two months. Is this a common side effect?
A: The mesalamine products like Delzicol, are used to treat inflammation. Ironically, some of the side effects are inflammation in other organs. For example, we monitor kidney function regularly for something called “interstitial nephritis,” inflammation of the kidneys. There are rare occurrences of other side effects with these medications like pancreatitis and pericarditis. This inflammation around the heart can be seen in about 0.5% of individuals on these medications and can rarely cause an effusion from the leaking of fluids across this inflamed heart tissue. I have never seen this and it is rare. I recommend seeing Cardiologist, trying to stop the Delzicol and see if the pericardial effusion improves.
ANSWERED BY:
Expert Image
Tauseff Ali, MD
University of Oklahoma, Saint Anthony Hospital
July 2015
Q: I recently started Humira. I am now reading that weight gain might be a side effect and I am very concerned. What is the success rate with this drug? What percentages of patients gain excess weight? I expect some change, but will not continue the drug if I gain a significant amount of weight - It seems like I'd be trading one health risk for others.
A: Weight gain is more of a concern with steroids like prednisone. Humira and medications like this can cause swelling in the legs, but this is a rare occurrence. Usually patients are taking Humira along with steroids initially. The success rate of this drug is about 50-60% in mild to moderate ulcerative colitis and Crohn’s, increased when adding an immunomodulator like 6-MP, azathioprine or methotrexate. We define “success” differently depending on the study but these numbers reflect how likely you will feel better and clinically do better. Less than 5% of the patients gain weight on this product alone. I recommend trying the Humira if recommended then seeing if you gain wait.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
July 2015
Q: My doctor recently put me on Humira. I’ve had three injections so far. I have been on 6MP for about 4 months. My doctor assures me it is safe to take both, but everything I have read says otherwise. What are the risks of taking both medications together?
A: The main risks of taking two immunosuppressants together like Humira and 6MP are infection and cancer. Please make sure you are up to date with vaccinations including flu, pneumonia and hepatitis B. Live vaccines are not recommended while on both these medications. In terms of cancer, the main one we are concerned about is lymphoma. There is also risk of skin cancers so please make sure you see dermatologist annually. In terms of lymphoma, the risk for lymphoma in the general population is 2:10,000. When someone takes 6MP, it increases to 4:10,000. Combination therapy increases this risk to 6-8:10,000. If you are a young male, you have a slightly higher risk of another form of lymphoma called “hepatosplenic T cell lymphoma.” More recent studies looking at over 6,000 patients on these medications reveal that most of the risk for lymphoma comes from the 6MP and not as much from the Humira. New studies also reveal that patients usually need to be on these medications for at least 2 years to have this risk of lymphoma. In my practice and in some others, we use combination therapy then consider stopping the 6MP in 6-12 months for this reason. Another option for young males is to use Humira with low dose methotrexate. Methotrexate cannot be used safely in young females considering pregnancy.
ANSWERED BY:
Expert Image
Tauseff Ali, MD
University of Oklahoma, Saint Anthony Hospital
July 2015
Q: I have left sided ulcerative colitis. Many times I feel tired and rundown if I do anything physical. I am not sure how long I can keep working. I am 35 years old. Would it be a good idea to get the diseased part of my colon removed now? Will removing the disease part reduce the chances of it spreading? Will having this procedure sooner rather than later lead to a better quality of life?
A: Make sure you have your vitamin D and iron levels checked regularly because this can cause fatigue. I would also make sure you are on the appropriate medications to cause healing on colonoscopy. With the proper medications you should be able to live a relatively normal life. Some patients do still have the fatigue you mention, even when they have no vitamin deficiencies and have well-controlled colitis. If fatigue is the only symptom, having a surgery will likely not help with this. I would recommend also seeing a nutritionist to modify the diet if necessary.
ANSWERED BY:
Expert Image
Tauseff Ali, MD
University of Oklahoma, Saint Anthony Hospital
July 2015
Q: Is there is any new research into the use of suboxone in the treatment of Crohn’s?
A: I am not familiar with any substantial study looking at this product for Crohn’s. If you are interested in participating in clinical trials for new therapies, please go to www.clinicaltrials.gov for ongoing trials. I could not find any ongoing trials for this at this time.
ANSWERED BY:
Expert Image
Tauseff Ali, MD
University of Oklahoma, Saint Anthony Hospital
July 2015
Q: My 15 year old daughter is about to start 6mp for Crohn’s disease. I want to know if it is ok for her to take it at night before bed. This is when her stomach is most empty and I understand it is supposed to be given on an empty stomach. Are there side effects that I might miss if she is sleeping after she takes it?
A: 6MP does not need to be taking on an empty stomach but doing so may reduce the risk of nausea and vomiting – however, this side effect is very uncommon in the doses used for Crohn’s disease. It can be taken any time during the day. Many patients take it in the morning because they are less likely to forget to take it but if your daughter has a routine to take medications at bedtime it is also acceptable to take it then. It is unlikely that there would be side effects that would be missed while sleeping.
ANSWERED BY:
Expert Image
Sandra C. Kim, MD
Associate Professor of Clinical Pediatrics
The Ohio State University College of Medicine
Pediatric Gastroenterology, Hepatology, and Nutrition
Nationwide Children’s Hospital
July 2015
Q: I am 15 years post IPAA surgery and have developed iritis. I am told that it is an extra intestinal manifestation of UC. Is there any information available about these or other symptoms developing after colectomy? Also what type of specialist should I consult to deal with the systemic part of UC, as my GI feels only qualified to treat the digestive system? I of course also have an eye specialist, but it seems like there should be someone coordinating the treatment of the overall disease
A: There are reports of iritis occurring after IPAA surgery for UC but this not commonly. Iritis can occur with other medical conditions than UC so the eye doctor in collaboration with the primary care provider can decide on any further appropriate evaluation. If you are not having any gastrointestinal symptoms with the iritis, then the eye specialist (such as an ophthalmologist) is an appropriate person to address this issue. Otherwise, unless there are other symptoms after the IPAA for UC, you do not necessarily need another provider to manage your case.
ANSWERED BY:
Expert Image
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
June 2015
Q: My significant other has Crohn's. I believe his Crohn's has seriously affected our sex life, but I cannot be sure because he won’t talk about it. During what he calls "a flare-up," we cease all intimacy and most affectionate contact. He gets so cranky and critical of me, I lose interest in sex. He will only occasionally mention symptoms when they become too obvious to ignore. Is it typical for Crohn’s Disease to interfere with intimacy and sex?
A: I’m glad you asked this question. This is an important subject and probably does not get the attention it deserves. It’s not unusual for persistently active Crohn’s disease to have affects on intimacy and sex. Mood, self-consciousness, and illness perception are important determinants of sexual health and can also be adversely affected by Crohn’s disease. I would suggest a few different options. First, it’s important that your husband’s Crohn’s disease is evaluated and appropriately treated for any evidence of ongoing active disease by his gastroenterologist. If active Crohn’s is not causing his “flare-ups,” then his symptoms will need to be evaluated for other potential underlying causes. Second, it may be helpful to attend a support group (either an IBD or better yet, an ostomy support group) as this may be a common topic among other patients. Third, I believe it’s important to communicate your feelings and express your concerns to your husband. You may find that your relationship improves as a result.
ANSWERED BY:
Expert Image
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
June 2015
Q: I had a colonoscopy today my doctor said my Crohn's is in remission. However 3 weeks ago I had imaging test and it showed active disease. I'm confused . I had Crohn’s for 30 years and never been in remission and I don't feel any different. What are the definitions for remission and active disease?
A: Thank you for your question. This is a question that comes up often in different forms. Active disease refers to ongoing active inflammation of the intestinal lining, which can be detected by labs, imaging, and/or colonoscopic evaluation. These diagnostic tools often agree with one another but not always, and if the location of active disease is accessible by colonoscopy (i.e., in the colon or terminal ileum), this tool remains the gold standard for evaluation. Ideally, the definition of remission in Crohn’s disease is the combination of no active intestinal inflammation and an absence of disease-related symptoms. However, because symptoms associated with Crohn’s are also present in other
ANSWERED BY:
Expert Image
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
June 2015
Q: Is the IgA and IGa test a good way to diagnosis Crohn’s disease, when all other tests were negative for IBD?
A: Immunoglobulins or Ig are not typically used in the diagnosis of Crohn’s disease. The three scenarios that this test may come up in the evaluation for IBD are: 1) Evaluation for celiac disease, which is associated with IBD, as celiac disease and IBD can have overlapping symptoms 2) Evaluation for common variable immune deficiency (CVID) which can have overlapping symptoms with IBD 3) As part of an antibody panel used by many providers (aka as the IBD-7 panel). These panels can include antibodies like ASCA, ANCA, Anti-ompC, etc, and are often associated with IgA or IgG. This antibody panel is rarely helpful for a diagnosis of IBD, especially when used alone. IBD is typically diagnosed based on a combination of clinical symptoms and history, endoscopic evaluation (with biopsies if needed), imaging, and labs.
ANSWERED BY:
Expert Image
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
June 2015
Q: Crohn's Disease has been a part of my life since 1977. I have had a total colectomy with rectum removal and of course ileostomy. I am currently on no meds except b12 every other month. What is the likely hood that the disease will return? Is there any research on this?
A: Great question. There is some research on this topic but it depends on a couple different things. If before your total colectomy and end-ileostomy your disease was isolated to your colon, then the risk of recurrence with an end-ileostomy is low, about 10-20% over 5 years. If before surgery, the colon inflammation was associated with small bowel inflammation or inflammation around the anal area (i.e., abscesses or fistulas), the risk of Crohn’s disease recurrence would be higher.
ANSWERED BY:
Expert Image
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
June 2015
Q: My 18 year old daughter just had a third major flare and is on prednisone again. We are now facing a decision about maintenance with either Humira or Remicade. Both have some serious warnings, but both seem to be discussed as being quite effective. What advantage is there one over the other for a young adult who is college bound? Would it be impractical to schedule infusions when at college or are they available at most hospitals? What are the pro/cons for either?
A: This is a common scenario. Humira and Remicade both have the same mechanism of action and in most people will have similar effects with little difference between the two. The major difference is that Humira is given as a shot (by injection or prefilled syringe) every 2 weeks while Remicade is given like an IV every 8 weeks. Remicade will require that a patient go to an infusion center for each dose. There are infusion centers in most mid-sized to large cities so it may be prudent to determine if there is one near her college. I would suggest that she establish with a gastroenterologist near her college as well
ANSWERED BY:
Expert Image
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
June 2015
Q: I was diagnosed with Crohn’s disease about 8 months ago and have been on Lialda but recently have not been doing well. I have lot medication side effects. Is there another drug that is similar that may provide me with less side effects? I am still trying to understand how to control flare ups and wonder if there are any specific tips to help control the symptoms. I am working to limit my drinking and have actually just begun a gluten free diet to try to help.
A: Thank you for the questions. First, I would speak to your gastroenterologist regarding your symptoms and determine if they are due to the Crohn’s or something else. At this point, the two of you can also discuss potential adverse effects from the Lialda. There are other medications in the same family as Lialda and you and your gastroenterologist can discuss the most appropriate treatment plan. By “drinking,” I imagine you are referring to drinking alcohol. Limiting alcohol and a gluten free diet may help but no diet has yet been proven to decrease inflammation from Crohn’s disease that is causing symptoms. When patients have active intestinal inflammation, it may be helpful to decrease high fiber foods and perhaps dairy products and caffeine. I suggest using a food journal to recording food intake and symptoms to determine if certain foods trigger symptoms.
ANSWERED BY:
Expert Image
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
June 2015
Q: I was diagnosed with Crohn’s in Nov 2014. I am on 200mg of 6mp per day. The doctor says I am in remission but I am having strong to almost severe muscle pain, weakness and fatigue. Can these symptoms be related to Crohn’s Disease?
A: Thank you for your question. The symptoms that you describe are not specific to Crohn’s disease and can be seen with many other disease processes and medications. If a thorough evaluation that may include some combination of endoscopic evaluation (i.e., colonoscopy), imaging, and labs has been done to confirm Crohn’s disease remission, then it may be reasonable to evaluate if the dose of the 6-MP is appropriate. This can be done through lab work.
ANSWERED BY:
Expert Image
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
June 2015
Q: I have Crohn’s and currently on Entocort. Is Entocort a good option for lifetime care for Crohn’s?
A: Good question. Entocort has been studied in Crohn’s disease for up to one year but not beyond. According to these studies, it appears to be most effective within the first 3 months and less effective afterwards. However, some patients may do well on entocort beyond 3 months. The key is regular follow-up with a gastroenterologist with routine labs, colonoscopy, and perhaps imaging evaluating for active intestinal inflammation. During these evaluations, if there is any evidence of nonresponse to entocort or progression of inflammation, an adjustment to your therapy can be made early.
ANSWERED BY:
Expert Image
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
June 2015
Q: My rheumatologist's office nutritionist has put me on a 3 week course of rifaximin to treat SIBO (small intestine bacterial overgrowth) which she says is the source of my Crohn's and other autoimmune symptoms. She has also advised me to follow the strictest version of the FODMAPS diet with no grains for 3 months 'to kill off the bacteria'. I am worried about completely eliminating all my beneficial microflora by staying on this diet for so long. Any advice or experience with prolonged FODMAPS?
A: There is a lack of scientific evidence suggesting SIBO is the cause or source of all autoimmune symptoms. There is actually debate within the medical community as to whether SIBO is a problem. It’s a tough question, but since rifaximin is safe, most doctors will try it. Low FODMAPs diets don’t kill off bacteria. However, low FODMAPs diets may help some patients with symptoms of bloating, diarrhea, and cramping. You will likely not harm yourself with a prolonged low FODMAP diet, but it is not recommended being on this diet for a long time if it does not help you.
ANSWERED BY:
Expert Image
Tauseff Ali, MD
University of Oklahoma, Saint Anthony Hospital
May 2015
Q: My 29-year-old daughter ran a half marathon one and a half weeks ago. Since then she has had continuous bloody diarrhea. The GI dr plans on doing a colonoscopy. Is there any danger in doing a colonoscopy while she is still experiencing the body diarrhea?
A: No, a colonoscopy would be good to do carefully when someone is having a “flare” to determine whether she truly had a flare, or perhaps had colon ischemia, which happens in runners, when not enough blood flow gets to the intestines. The treatments are different.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2015
Q: My son was diagnosed with crohns and not tested for cdiff. He has been treated first with asacol and then lialda and now on Remicade. Is it possible to have an accurate test for cdiff.?
A: Yes, the C diff should stay accurate if he has it, regardless of his medications.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2015
Q: I was diagnosed with diverticulitis when I went to the emergency room. About 6 months later I was in terrible pain on left side of stomach and bleeding again went back to emergency room where they ran some tests and told me I had colitis. I have been having these problems with my stomach on and off for about 4 years. Once you are told you have a colitis attack does that mean its forever?
A: “Colitis” is a general term to mean inflammation of the colon, which ER doctors will either tell you without a proper exam, or if they see inflammation in the colon on a CT scan. We get this with diverticulitis, food poisoning, infections, IBD, lots of things. So, I would see a GI doctor, as the ER and a CT scan is not a reliable way to diagnose ulcerative colitis or Crohn’s disease.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2015
Q: I have been having a lot of red blood in my stool for a week. I called my gi and they started me on prednisone. But I feel very tired, lower back cramps, headaches. I feel like I want to vomit and have lower abnormal cramps. Could I these symptoms be caused by the blood loss or a side effect of the medication.
A: Fatigue and cramps can be from having active inflammation in the colon, but all of those symptoms can also be from steroids. It really depends on your problem. Do you have Crohn’s or ulcerative colitis? If so, steroids are not a good long term solution anyway, and having these diseases be out of control will also cause all of the above symptoms.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2015
Q: My husband was diagnosed with unspecified crohns/colitis. I asked the doctor what unspecified crohns/colitis means. He said that it was colitis of the entire colon. They did the camera pill thing last year and nothing showed up. What I don't understand is what is the difference between ulcerative colitis and "colitis"? Is there are difference. The doctor now says it is just colitis not crohns. Can you help me understand the diagnosis?
A: Generally speaking inflammatory bowel disease is divided into two categories, Crohn’s disease and ulcerative colitis. Crohn’s disease involve any part of your gut from mouth to anus with most common part being the end of small intestine and beginning of the large intestine. Ulcerative colitis, as the name implies, only involve the colon and rectum- your large intestine. Colitis simply means inflammation of the colon, just like arthritis means inflammation of the joint. Colitis can be caused by infections (infectious colitis), chronic inflammation (such as ulcerative colitis) and decreased blood supply (ischemic colitis). When Crohn’s disease involve colon, it’s called Crohn’s colitis. Most of the time physicians and pathologists can tell the difference between ulcerative colitis and Crohn’s colitis. In some instances, about 10-15 percent of the cases, it is difficult for the physicians to tell the difference between the two and they call it indeterminate colitis. We are learning more about this entity and its behavior and response to medications and long term prognosis.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2015
Q: How long do people with crohns generally stay on humira and can that lead to remission?
A: It is very hard to predict the response to anti tnf therapy in a particular patient. Our understanding of the influence of drug and its blood levels in our body system and loss of response is evolving and we are learning that good drug levels are associated with longer duration of remission. Many factors such as body weight, age, gender, smoking, and albumin level and disease burden influence the drug levels. In clinical trials it has been shown that if you respond to a drug there is a fair chance that you will keep responding to the drug for the next few years. Also remember, definition of remission is also evolving. Most physicians now believe that remission means not only the absence of symptoms but also reduction of inflammation and improvement of the inflammatory markers in the blood. All approved anti tnf drugs have shown to induce remission as long as you remain on the drug and the levels of the drug are adequate.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2015
Q: I was diagnosed with UC 2013. I am currently taking Apriso. The doctor has suggested Prednisone or Remicade. I am really scared to take any of these treatments after what I have read about the possible side effects. Are these the only treatment options?
A: There are several reasons for stepping up therapy in ulcerative colitis. For example, lack of response to current therapy, disease progression despite optimal treatment, side effects or intolerance to current therapy may warrant changing the existing therapy. The goals of therapy in ulcerative colitis are to help make you feel better with minimizing the symptoms and also improve inflammation in the colon. Persistent inflammation in the colon increases the risk of colon cancer and also increases the risk of disease progression with future flares and hospitalization. Once the mesalamine therapy ( such as Apriso) has been maximized and consideration to topical mesalamine therapy such as enema in combination therapy with oral pills has been given and your doctor has found that it’s time to move on to other therapies, different options such as immunomodulators ( azathioprine, 6MP) and biological therapies ( such as Infliximab, Adalimumab and Vedolizumab) are available. These therapies are associated with certain risks such as infections and cancers. The risk of infections warrant close monitoring while on the therapy. The absolute risk of cancers such as skin cancer and lymphoma is not high. You have to keep in mind that if left untreated, persistent inflammation also increases the risk of colon cancer and other complications in the intestine. In most of the situations, the benefits of therapy outweigh the risks associated with them. Alternatively, surgery to remove the colon is another option that you may discuss with the doctor. Prednisone therapy is only used as short term as a bridge to long term therapy. Of all the therapies, prednisone is associated with more risks of infections and other complications such as bone loss, skin, sleep and mood disorders.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2015
Q: What maintenance drugs are recommended after small bowel resection surgery for Crohn's disease?
A: It is well established that Crohn’s disease recurs after the surgery in majority of the patients. There are certain factors that increase your risk of recurrence such as young age, female gender, smoking, long segment resection and history of prior resections. In patients with higher risk of recurrence, it is suggested to start the medical therapy soon after surgery. In clinical studies, anti- TNF therapy has been found to significantly decrease the risk of disease recurrence. Other immunosuppressive drugs such as azathioprine have also been found to be useful to prevent recurrence. In lower risk patients, physicians may elect to monitor them closely and start therapy at the earliest signs or symptoms of recurrence. This strategy may warrant close monitoring with repeat blood and stool tests and colonoscopy. Most of the clinical studies have found anti tnf therapy and immunomodulators to be effective drugs to prevent recurrence.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
April 2015
Q: My son is in a Crohn’s flare up. He has been taking Lialda, dicyclomine. He has been on Uceris for four days and still in pain and having bloody diarrhea. How long does Uceris usually take before the symptoms disappear?
A: Uceris is a delayed and extended release 9mg budesonide tablet that releases throughout the colon. It is used for mild-moderate ulcerative colitis. Budesonide is a topical glucocorticoid. In a Uceris clinical trial, it took up to 4 weeks for 47% of patients to show clinical improvement. Entocort is another formulation of budesonide that is released in the end of the small intestine and used for mild to moderate Crohn’s involving the end part of the small intestine for right portion of the colon.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
April 2015
Q: My son has suffered from chronic pouchitis for 18 mos. He would like to start taking probiotic. What is the success of probiotics? How long might it take to make a noticeable difference?
A: Probiotics may help reduce the risk of recurrence of pouchitis after treatment of pouchitis with antibiotics. The studies showing benefit used VSL#3, combination of several strains of probiotics, with dosing of 600 billion colony forming units a day to 900 billion colony forming units twice a day. Probiotics have not yet shown to be an effective treatment of pouchitis.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
April 2015
Q: After being diagnosed with cd 20 years ago I had 2 infusions of Remicade and then stopped the treatment. Recently I was hospitalized with ileitis. My Colonoscopy showed no signs of active disease but some scarring in small intestines. The CT showed no thickening of intestinal lining or active disease. The antibody tests for Remicade showed none. The GI wants to start me on Remicade. Since there is no active disease, is it possible to start on medications other than biologic therapy?
A: The key point is to determine if the symptoms that lead to your hospitalization were from active Crohn’s disease or something else. If you had active small bowel Crohn’s disease that caused moderate-severe symptoms then medical treatment with an immunomodulator (such as azathioprine/6mercaptopurine, methotrexate) or biologic would be indicated. 5-aminosalicylates have not been shown to stop the progression of small bowel crohn’s disease.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
April 2015
Q: I have Crohn’s but recently been told I have a circumferential narrowing and constriction of my lower cecum. Is this a side effect or Crohn’s? Can this condition cause cancer? I stay bloated and hurt in my upper right side and my middle left side. The GI just keeps telling me it is from Crohn’s disease. How is this condition treated?
A: Since inflammation from Crohn’s disease can affect the full thickness of the intestine that it is located in, there is a predisposition for forming strictures or narrowing. Chronic inflammation involving the colon over many years (>8 years) can increase the risk for developing colon cancer. If you have had Crohn’s for a short period of time and have not started medical therapy, then therapy with medications would be attempted 1st as long as you do not have signs of obstruction or blockage (abdominal distention, vomiting) from the stricture. If you do have signs of obstruction and the Crohn’s is limited to a small area, then surgery may be considered as treatment.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
April 2015
Q: I was diagnosed with Crohn's Disease when I was three years old. I went into remission after being on Sulfasalazine for nine years. I came out of remission my senior year of high school. It has been two years, and I have tried the sulfur pill, remicade, and entyvio. I have also tried gluten free, lactose free, and a cleanse. What other treatment options are available before resorting to surgery?
A: There are still several medical therapy options which include azathioprine or 6-mercaptopurine, methotrexate, adalimumab (Humira), certolizumab (Cimzia), natalizumab (Tysabri). Your gastroenterologist can help determine which medication or combinations of medications are right for you. Sometimes medical therapy and surgery are used together to improve quality of life.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
April 2015
Q: I was diagnosed with UC in October of 2014. My GI started me on Lialda. I stayed on Lialda for 2 months with no change in symptoms (gas, constipation, bloody stool, urgency). At that point GI changed diagnosis to Crohns since I didn't respond to Lialda. I started Humira in January. I have had 2 normal days with no symptoms but all other days are same as when diagnosed, no improvements. Is this normal for Humira? When do I consider other options?
A: Not responding to Lialda® is not a reason to change your diagnosis from ulcerative colitis to Crohn’s disease. There must have been another reason for the diagnosis to have changed. It may take up to 12 weeks to see improvement with adalimumab (Humira) for the treatment of Crohn’s disease. If you have had only 2 normal days since starting Humira then it is not likely working. If your symptoms cycle around your injections, better the few days immediately after but then worsen, then your physician may consider checking Humira drug levels to see if a dose adjustment is needed. If it turns out you are not responding at all to Humira then I would recommend making sure there is not another reason other than Crohn’s for your symptoms such as infectious gastroenteritis from C. difficile infection or other infections prior to starting a new medical therapy for Crohn’s.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
February 2015
Q: I just finished radiation treatment for breast cancer and now am being prescribed tamoxifen as an anti-estrogen therapy. Since my colitis flared up badly after surgery (lumpectomy) I am concerned if there are any contraindications against tamoxifen for patients who have ulcerative colitis.
A: There is no specific relationship between tamoxifen and ulcerative colitis. Of course, every person reacts to treatments differently but tamoxifen should be ok with your UC. There have been a number of hormone studies in IBD and while early data suggested a possible link with hormones and Crohn’s ds, the totality of the data and research since has not shown a link.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
February 2015
Q: My son 9 yrs old son has an abscess around his rectum. He is in the hospital and the doctors have done tests/scopes and are telling us that he has a mild case of Crohn’s Disease. He does not have any of the symptom's that are associated with Crohn’s now or in the past. The doctors have recommended Remicade. Can someone have Crohn’s without having other Crohn’s symptoms? Is remicade the most appropriate choice for mild disease?
A: It is possible to develop an abscess from a fistula and have this as the only manifestation of Crohn’s disease. However, a fistula that leads to an abscess does often have a component of bowel related inflammation, ie ulcers or inflammation in the rectum/colon or small bowel. If he does have evidence of active Crohn’s disease in the bowel and has an abscess from a fistula, then “yes” Remicade is a very appropriate treatment choice.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
February 2015
Q: I am 29 years old and have been recently diagnosed with severe crohns in my small intestine and mild in sigmoid colon. The doctor prescribed remicade infusion every six weeks. I have not started the treatment yet. What is the lymphoma cancer risk using this medicine?
A: The lymphoma risk using remicade is very low and is estimated at 4-5 in 10,000. Many of these cancers also are early and treatable, responding well to treatment. As always, it is important to balance risks of remicade with potential benefits and risks of not doing remicade. In vast majority of patients, the risks with treatment are far outweighed by potential benefits or consequences of severe disease. It is important to remember that treating early on improves likelihood of response.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
February 2015
Q: I’m 36 years old. I have Crohn’s Disease, no insurance and no job due to the severity of the disease. Where can I get help for treatment?
A: The Health Insurance Marketplace is a new way to find quality health coverage in one place. Within the Marketplace you can learn about your health insurance options, compare insurance plans and submit an application. Many people qualify for financial help from the government to help cover the cost of insurance. For more information about the Marketplace or to apply for coverage, visit: www.healthcare.gov . The deadline to sign up is Feb 15th. For free health care you can get services at community health centers. To find centers in your area visit: http://findahealthcenter.hrsa.gov/. Finally is you are unable to work because of your disease, you may be able to apply for social security disability benefits. Contact the Social Security Administration at www.ssa.gov .
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2015
Q: What are the side effects of Prednisone? Do they include mood swings?
A: While prednisone is a good medication for short term use to induce a remission of inflammatory bowel disease, it is not a good long term medication because of its side effect profile. Prednisone can cause emotional instability, headaches, psychic derangements, high blood pressure, diabetes, liver function test abnormalities, problems with bone metabolism, to name a few.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2015
Q: I was just released from the hospital after spending four days there. I was admitted because I was having bleeding with bowel movements and also fatigue and nausea. I had a colonoscopy done which showed two ulcers, polyps and that my ulcerative colitis was active. When I was released from the hospital the rectal bleeding has stopped and I started feeling much better. Before I left the doctor ordered a CRP. I got my result today and they showed CRP was 37.9 normal is 0-5. What could this mean?
A: C-reactive protein (CRP) is a protein produced by the liver in response to inflammation. CRP levels can go as high as 200 in the setting of active inflammatory bowel disease and the half-life of the protein is approximately 19 hours. The result of 37.9 suggests that there is still inflammation and likely higher when you initially presented to the hospital. Clinical symptoms improve much faster than markers of inflammation such as CRP and the intestine itself.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2015
Q: I would like to know what the maximum dosage of balsalazide is. I see that some people take 12 pills a day, and I also saw on a hospital website that up to 6.75-13.50 gm/day can be taken. I am presently taking 12 pills because of a flare but doctor has only prescribed 9, but the 12 seems to help my symptoms.
A: The maximum dose evaluated in the clinical trials and the FDA approved balsalazide dose for mild to moderate ulcerative colitis is a total of 6.75g/day (9 pills a day). I would recommend you inform your physician as to the dose that you are taking which will help them find the most effective and safest treatment regimen for you.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2015
Q: Is it normal to have long, flat, stools that are very painful to pass and never feel like it's all come out? Even though I have only eaten one meal today, I feel extremely bloated and I didn't eat anything until 6pm because my stomach felt so full
A: If recurring, then I would recommend evaluation by your physician for inflammation and narrowing in the intestinal tract (rectum, anal canal, colon), as well as constipation.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2015
Q: I have been diagnosed with Drug Induced Lupus. I was on Humira for 5 years, suffered severe arthrpathy in every joint and tendon for 3 years. I am concerned that because the DIL was diagnosed so late it might develop into full blown Lupus. I stopped Humira 5 weeks ago and now on 10mgs steroids now. What are the risks of developing full blow Lupus?
A: The incidence of anti-TNF (medications such as adalimumab (Humira), infliximab (Remicade), certolizumab (Cimzia), and golimumab (Simponi) induced lupus is believed to be approximately 1%. Most cases of anti-TNF induced lupus are self-limited, 94% in one study, after withdrawal of the Anti-TNF. Treatment with corticosteroids and other immunosuppressants may be needed to help resolve symptoms. It is also hypothesized that patients that do not have self-limited disease may have had underlying lupus even prior to the anti-TNF. Reference: Ramos-Casal M et al. Autoimmune diseases induced by TNF-targedtd therapies. Analysisof 233 cases. Medicine 2007; 86:242-51.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2015
Q: I have had an ileostomy for Crohn’s disease for 30 years. At the time of the surgery, my rectal stump was left. I have had several other surgeries since for endometriosis and have problems with adhesions. For the past 5 years, I have been well but surgeons want to remove my rectum because of the cancer risk. I have read conflicting statistics as to the cancer risk of rectal Crohn’s disease after 30 years. What is the risk of rectal cancer?
A: Any of the intestine affected by Crohn’s disease is at risk for developing Crohn’s disease, and out-of-circuit diseased rectum develops cancer in approximately 10% of cases after 15 years of follow-up. And, the longer the rectum remains in place, the greater is the risk for cancer. Accordingly, it is recommended that the unused rectum is inspected and biopsied every year to detect any precancerous or cancerous changes. If these changes are noted, the rectum must be removed. If the rectum can no longer be endoscopically evaluated because of a narrowing, or stricture, its removal is usually advised if adequate surveillance has not been performed for more than 5 years.
ANSWERED BY:
Expert Image
Scott A. Strong, MD
Northwestern Medicine, Chief, Division of Surgery-Gastrointestinal and Endocrine
January 2015
Q: Since my ulcerative colitis was diagnosed, I have been given an ileostomy and had it removed three times. I was told in 2007 that my current ileostomy would be permanent. I recently went to a new surgeon who told me it was possible until he saw my records and said I have too much scar tissue. How long does scar tissue persist in the abdomen after these surgeries?
A: Intra-abdominal adhesions are commonly seen in anyone who has undergone prior abdominal surgery. These adhesions begin to develop within 7-10 days of surgery and continue to increase for a period of time. The body then starts to dissolve these adhesions until they no longer disappear, and this usually occurs 6-12 months after surgery. Any adhesions that remain after that time interval are likely permanent.
ANSWERED BY:
Expert Image
Scott A. Strong, MD
Northwestern Medicine, Chief, Division of Surgery-Gastrointestinal and Endocrine
January 2015
Q: I have problems with scar tissue following repeated resections of my intestine. I have lost half of my colon and quite a bit of ileum. This will be my fourth surgery. Will a low residue diet keep me from requiring an operation?
A: Intra-abdominal adhesions cause difficulties in a minority of patients. When problems do arise, they are typified by bouts of cramping pain, nausea, abdominal distention, and a change in bowel habits. Patients with Crohn’s disease can experience similar complaints when active disease affects the small intestine. It is important to distinguish between symptoms caused by adhesions and Crohn’s disease because the treatment is markedly different. An operation is currently the only way to disrupt symptomatic adhesions, but carries the risk of additional adhesions and is avoided when possible. A partial obstruction can sometimes be overcome with a low-residue diet because the foods in this diet are more easily broken down into smaller particles and contain less than 10 to 15 grams of fiber each day. Foods included in a low-residue diet are cooked vegetables, fruits, meats, and white breads. Raw vegetables, beans, legumes, nuts, seeds, and whole grains are avoided. With the right food choices, a low-residue diet contains an adequate amount of nutrition, but some supplements (calcium, folic acid, vitamin C) are recommended if the diet is followed for an extended period of time.
ANSWERED BY:
Expert Image
Scott A. Strong, MD
Northwestern Medicine, Chief, Division of Surgery-Gastrointestinal and Endocrine
January 2015
Q: I have a hurting under my right ribcage. I have had my gall bladder out and still hurt there. It feels like a fist and hurts from the front to my back. The Dr. sent me for a CAT scan and says I have colitis, although I don't have any of the other symptoms. I would think I would have some of the other symptoms to be colitis. Would a CAT scan show only colon problems?
A: Computerized axial tomography (CAT or CT ) scan uses x-ray and computer technology to create images of the human body. CT scan provides images about internal organs, soft tissue structures, blood vessels, and bone. CT scans are usually completed in sections of the body. To evaluate the region of your discomfort the CT scan is usually of the abdominal location and would show the anatomy of the organs, soft tissue, vessels, and bone in this location. The organs in this location include the stomach, colon, small intestine, liver, spleen, pancreas and kidneys. The information from CT scan along with the clinical picture (your symptoms) usually helps determine the next course of action. I would recommend follow-up with your physician to see if CT findings explain your current symptoms.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2015
Q: The Igg in my blood was over 25. I also have anemia. Colonoscopy, endoscopy, GI series, and MRI all came back normal. I had a lot of diarrhea, until I was put on Entocort EC. Can you still have Crohn's disease without inflammation showing up on any of the tests?
A: Usually for a new presentation of chronic (>4 weeks) diarrhea and anemia, many potential causes are considered such as include infections, celiac disease, inflammatory bowel disease (Crohn’s or ulcerative colitis). If the anemia is not related, then potential causes are even broader, such as microscopic colitis, endocrine related (hyperthyroidism, low cortisol level) and medications. Crohn’s disease is defined by having ulceration involving the lining of the intestinal tract and biopsies of the tissue confirming inflammation in a specific pattern. Sometimes it is difficult to locate the area of inflammation due to length of the intestinal tract, > 25 feet long. If none of the tests, including capsule endoscopy, reveal ulceration then another diagnosis for your symptoms should be considered.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2015
Q: I have Short Bowel Syndrome, malnourished and need eg. form of iron. Which is the best form of iron to use with no ileal-cecal valve?
A: Iron is absorbed in the duodenum (1st part of the small intestines) and should not be greatly affected with short bowel syndrome unless Crohn’s or another factor is impacting absorption in the duodenum or there is a chronic source of blood loss. I would consult with your physician to determine if and how significant is the iron deficiency. There are several formulations of oral iron (ferrous sulfate, ferrous gluconate, and ferrous fumurate) and if oral treatment is not tolerated intravenous iron can also be prescribed. As for other nutrients that may be low in short gut syndrome due to absence of the end portion of the small intestine and or diarrhea include vitamin deficiencies (B12, A, D, E, K) and mineral deficiencies such as zinc, magnesium and calcium. Please see the Short Gut Syndrome and Crohn’s disease brochure nutrition section for further recommendations.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2015
Q: Is it normal for all your joints to hurt in cold weather? We just moved to WA State from LA. I have Crohn's and I have never hurt so badly.
A: In a subset of patients with rheumatoid arthritis, weather seems to impact on joint symptoms. It’s not clear in the medical literature as to which aspect of weather (barometric pressure, temperature, humidity, solar exposure) is the major driver in the subset of patients that are affected by weather. Although there is a lack of medical studies evaluating if weather plays a part in joint symptoms in inflammatory bowel disease patients, it is certainly possible that weather may be playing a part in your symptoms. I would also recommend seeing your physician to make sure there is not another reason such increased Crohn’s activity or a medication side effect.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2015
Q: Have there been any studies on the use of Aloe Vera in the treatment of Crohn's Disease? Also, if there is any proof as to the benefits of Aloe Vera? What would be the normal dosage?
A: In test tubes, aloe vera gel may also have anti-inflammatory and anti-oxidant effects. Aloe vera in animal studies may reduce inflammation in the ear and synovial (joing) fluid. There have been no studies published assessing aloe vera treatment for Crohn’s. There was a small study of 44 subjects published by Langmead et al (APT, 2004) assessing the effectiveness for treating mild to moderate ulcerative colitis. Forty-six percent of patients receiving aloe vera gel 100mL by mouth twice a day responded compared to 14% receiving placebo after 4 weeks, but remission and endoscopic improvement was not found to significantly different. Larger studies are needed in UC and studies are needed in Crohn’s before it can be recommended as a treatment.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
December 2014
Q: I live in Kenya and have been on mesacol for the last four years. What's the difference between asacol and mesacol?
A: Mesacol and Asacol have the same mechanism of action and the active ingredient of both is mesalamine.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
November 2014
Q: Is there a high risk of C-diff in ulcerative colitis patients?
A: Yes, there is a higher risk of C diff in ulcerative colitis patients. It is important to test for this infection in the setting of new diagnosis or flare of previously quiet colitis.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
November 2014
Q: I have Crohn’s and cannot eat grain and vegetables. I am eating mostly carbs and I am gaining too much weight. What can I do to control the weight but still be able to eat?
A: It is important to eat a balanced diet and avoid too many refined sugars and carbohydrates. As raw fruits and vegetables are often poorly tolerated, it may be helpful to include plenty of well cooked fruits and vegetables. Consider juicing fruits and vegetables – this usually results in less fiber content than raw fruits and vegetables and may help avoid high caloric intake. Consider including high protein foods that have fewer calories than refined carbohydrates. If there is still difficulty, consider consulting with a nutritionist.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
October 2014
Q: I had a resection of the terminal ileum for Crohn’s disease in 1967 and now have a very small tight anastomosis. Would an elective resection be beneficial at this time? I am 76 and fearful of blockage?
A: These blockages can be sometimes managed with dilatation using a colonoscope, especially if they are less than 2 inches in length and not associated with any abscess or fistula. If this approach is unsuccessful or inappropriate and the stricture is causing symptoms, an operation can be performed to remove the segment of narrowed intestine. Strictures caused by scarring without associated inflammation are usually unresponsive to medications.
ANSWERED BY:
Expert Image
Scott A. Strong, MD
Northwestern Medicine, Chief, Division of Surgery-Gastrointestinal and Endocrine
October 2014
Q: I’ve had three ballon dilations in the last 14 months and they usually last 6 months or so. I’ve been on Humira for almost two years with no side effects. I have a stricture that really makes me constipated. My gastro said my intestines are free and clear of any inflammation but it's just the stricture. He said there are no other options except a colostomy? I find that hard to believe. Is he correct? What about anoplasty flap?
A: Crohn’s disease can cause structuring anywhere along the intestinal tract including where the rectum meets the muscles that provide control over bowel motions. A stricture at this level is generally treated with dilatation sometimes in combination with steroid injections into the site. The patient is then encouraged to use products that promote a well-formed stool that acts to dilate the area as it passes through. In rare instances, the stricture can be managed by excising a short area of narrowing and reconnecting the two ends of bowel usually in combination with a temporary ileostomy or colostomy. An anoplasty flap is generally not appropriate because the stricture is not close enough to the skin surrounding the anus to allow such an operation to be successfully performed.
ANSWERED BY:
Expert Image
Scott A. Strong, MD
Northwestern Medicine, Chief, Division of Surgery-Gastrointestinal and Endocrine
October 2014
Q: I was diagnosed crohn's (jejunum) following diagnostic laparoscopy that ended with removal of 11" of small intestine. I was to start on Remicade three months post surgery. I am still on a liquid diet and having pain and bloating. Drs. are backing off because they can't "see" the area to assess/monitor. Pill camera patency pill failed again. During surgery, the surgeon saw more extensive damage, but could not remove it all. What other measures can they use to confirm the pathology report?
A: The segment that was removed should provide ample material to confirm a diagnosis of Crohn’s disease. Imaging studies such as CT or MR enterography can be used to visualize the remaining small intestine as can some forms of advanced endoscopy. Your symptoms may be caused by extensive inflammation in some of the remaining small bowel. If this disease cannot be managed with medical therapy, surgical treatment can be employed whereby the involved segments can be widened without removal of any intestine using a procedure called a strictureplasty. Operations in these more complicated scenarios are sometimes best performed by a surgeon experienced with the surgical treatment of Crohn’s disease.
ANSWERED BY:
Expert Image
Scott A. Strong, MD
Northwestern Medicine, Chief, Division of Surgery-Gastrointestinal and Endocrine
October 2014
Q: I have ulcerative colitis. It seems no matter what I eat or do, I feel bloated constantly! Right after I go to the bathroom (when I can, that is) I’m still bloated! I use Canasa 1000 mg. I just started taking activated charcoal capsules. Am I going to feel fat and bloated the rest of my life?
A: Bloating may be a sign of many things including a reaction to the Canasa, constipation from the ulcerative proctitis, small intestinal bacterial overgrowth, etc. If you are having difficulty moving your bowels, this is the likely cause of the bloating. However, this difficulty can be because you have inflammation in the rectum blocking the output or, if colitis is under control, can be a more functional issue. You should discuss the possibilities with your doctor.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
August 2014
Q: I’ve had Crohn's for almost 30 year and had a bowel resection surgery about 27 years ago. After surgery I went into remission for 10 years. I am doing Remicade every 4 weeks. I recently had my annual colonoscopy and they have discovered precancerous cells near the resection scar. My doc has recommended another colonoscopy in 6 months, but has not said much regarding the cells. What does this mean for me? How long until the cancer diagnosis comes? What can I do to delay that?
A: Surveillance colonoscopies are performed routinely on all patients with Ulcerative Colitis and Crohn’s disease. While the data are better established for ulcerative colitis, the same is considered to be true for Crohn’s: after having the disease for 8-10 years the risk of neoplasia (either pre-cancer (called dysplasia – which can be high grade or low grade) or cancer) increases by 0.5% - 1% per year above the general population. Factors that have been shown in studies to contribute to and exacerbate that risk include: duration of disease, severity of disease, extent of disease, concomitant Primary Sclerosing Cholangitis, family history of colon cancer. Anytime that pre-cancerous cells are found in IBD patients in the setting of inflammation, and not in a sporadic polyp (which can be completely removed like a polyp in a non-IBD patient can), there exists the potential for concurrent malignancy or the development and transformation. There is no guarantee that it will transform into cancer but impossible to predict. You should speak to your physician about the risks and benefits of surveillance colonoscopy and surgery.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
August 2014
Q: My daughter is 36 years old was diagnosed with Crohn’s about 6 years ago. She has been on humira for the past 2 years and it has worked well. She recently gave birth to a healthy baby boy. She was on humira throughout her pregnancy and is now breast feeding. Can the baby receive the vaccination for Rato virus, which is a live virus, if she is on humira and is breast feeding? I heard that patients on humira should not receive live vaccines. Is this the same for the baby?
A: Humira has not been associated with an increase in birth defects when used during pregnancy. However, there is active transfer across the placenta so the baby is born with detectable levels of humira which can last up to 6 months. During this time, live vaccines should not be given. In the US the only live vaccine is rotavirus. All other inactive vaccines can be given on schedule during this time and live vaccines scheduled for 1 year can be given on schedule.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
July 2014
Q: I've had Crohn's for 43 years and have coped well. I am scheduled to have a stoma relocation/revision from right to left . I am very nervous about the surgery. I would like the surgery performed using twilight and epidural as opposed to general anesthesia. Is this possible? I am told that there is a 2 to 3 day hospital stay and 2 weeks bed rest. Is a shorter recovery period possible?
A: Having a stoma revised and relocated can be a major operation depending on how much scar tissue the surgeon encounters at the time of surgery. Generally these operations are performed under general anesthesia. Revising a stoma can be done under epidural and sedation. Revising the stoma often means that the outlet has become narrowed, retracted below the skin level or a small hernia has developed. In this case, the surgery is generally less involved and the recovery is much shorter. If your surgeon has told you that the stoma is going to be relocated, that involves entering the abdominal cavity and moving the stoma to another location in the abdominal wall. This would require general anesthesia. The length of hospital stay depends on how well your pain control is post-operatively and how soon you regain bowel function. This is usually 3-5 days in the hospital and then 4 weeks recovery if all goes well.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
July 2014
Q: My 19 year old son just had bowel resection surgery and 3 stricture platies. He is recuperating. However, he still has lots of burping which was a major sign prior to surgery. Is the continued burping a sign that something else is wrong and that the surgery did not correct the problem?
A: Strictureplasties involve identifying areas of narrowed bowel due to Crohns Disease and making the wide open again. There are several different types of strictureplasties but they all relieve the obstructive symptoms caused by narrowing of the intestine. If your son is still burping, having abdominal distention, cramping or vomiting, these may be signs that strictures remain and weren't identified at the time of surgery. A small bowel follow through is an X-ray test where contrast is swallowed and the narrowing can be identified. The symptoms may also be due to scar tissue from the surgery casing a kink, twist, or narrowing in the intestine, known as a partial bowel obstruction. A CT scan or small bowel follow through would be the test of choice to diagnose this. Many times the symptoms will resolve over time, but if the symptoms persist, more treatment including more surgery, may be necessary.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
July 2014
Q: I was diagnosed with Crohn's Disease 17 years ago. The first 12 years were ok with, rarely a flare up. The past 4-5 years I've been experiencing many flare ups and problems. In October 2013 I had an Ileostomy surgery. Then last month a surgery to remove 1 foot of intestine. There were plans to reconnect but Dr. was unable to reconnect as there was too much inflammation. Therefore another surgery is planned. I’m worried about all these surgeries. What are the risks of so many surgeries?
A: Any operation on the abdomen is associated with risks during the immediate period following the operation as well as the long-term risk (5%) for blockage of the small bowel secondary to scar tissue creating adhesions. The small intestine is responsible for absorbing nutrients from the foods we consume, and an adequate length of small bowel is needed to ensure that an oral diet can maintain a healthy state of nutrition. In patients with Crohn’s disease, repeated operations to remove segments of the small intestine can result in a condition called short-bowel syndrome that sometimes requires TPN to supplement the patient’s nutrition by direct delivery of nutrients into the blood stream. Although operations for Crohn’s disease are generally avoided unless medical therapy is deemed inappropriate or ineffective for a variety of reasons, several procedures such as strictureplasty can be used as an alternative to removal of the small intestine in an attempt to prevent the development of short-bowel syndrome
ANSWERED BY:
Expert Image
Scott A. Strong, MD
Northwestern Medicine, Chief, Division of Surgery-Gastrointestinal and Endocrine
June 2014
Q: My significant other has Crohn's. I believe his Crohn's has seriously affected our sex life, but I cannot be sure because he won’t talk about it. During what he calls "a flare-up," we cease all intimacy and most affectionate contact. He gets so cranky and critical of me, I lose interest in sex.. He will only occasionally mention symptoms when they become too obvious to ignore. Is it typical for Crohn’s Disease to interfere with intimacy and sex?
A: I’m glad you asked this question. This is an important subject and probably does not get the attention it deserves. It’s not unusual for persistently active Crohn’s disease to have affects on intimacy and sex. Mood, self-consciousness, and illness perception are important determinants of sexual health and can also be adversely affected by Crohn’s disease. I would suggest a few different options. First, it’s important that your husband’s Crohn’s disease is evaluated and appropriately treated for any evidence of ongoing active disease by his gastroenterologist. If active Crohn’s is not causing his “flare-ups,” then his symptoms will need to be evaluated for other potential underlying causes. Second, it may be helpful to attend a support group (either an IBD or better yet, an ostomy support group) as this may be a common topic among other patients. Third, I believe it’s important to communicate your feelings and express your concerns to your husband. You may find that your relationship improves as a result.
ANSWERED BY:
Expert Image
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
June 2014
Q: My significant other has Crohn's. I believe his Crohn's has seriously affected our sex life, but I cannot be sure because he won’t talk about it. During what he calls "a flare-up," we cease all intimacy and most affectionate contact. He gets so cranky and critical of me, I lose interest in sex.. He will only occasionally mention symptoms when they become too obvious to ignore. Is it typical for Crohn’s Disease to interfere with intimacy and sex?
A: I’m glad you asked this question. This is an important subject and probably does not get the attention it deserves. It’s not unusual for persistently active Crohn’s disease to have affects on intimacy and sex. Mood, self-consciousness, and illness perception are important determinants of sexual health and can also be adversely affected by Crohn’s disease. I would suggest a few different options. First, it’s important that your husband’s Crohn’s disease is evaluated and appropriately treated for any evidence of ongoing active disease by his gastroenterologist. If active Crohn’s is not causing his “flare-ups,” then his symptoms will need to be evaluated for other potential underlying causes. Second, it may be helpful to attend a support group (either an IBD or better yet, an ostomy support group) as this may be a common topic among other patients. Third, I believe it’s important to communicate your feelings and express your concerns to your husband. You may find that your relationship improves as a result.
ANSWERED BY:
Expert Image
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
June 2014
Q: I am scheduled to have 5 cm of my ileum removed, which is very small compared to what many people have removed! However, I learned that they are going to remove my appendix at the same time. Why? Is that necessary? What if down the road we find out it is good for something?
A: The last segment of the small intestine (terminal ileum) leads into the first part of the large intestine (cecum) and the junction between the terminal ileum and cecum is called the ileocecal valve. Crohn’s disease commonly affects this terminal ileum and/or cecum. The appendix arises from the base of the cecum and its role is poorly understood.
ANSWERED BY:
Expert Image
Scott A. Strong, MD
Northwestern Medicine, Chief, Division of Surgery-Gastrointestinal and Endocrine
June 2014
Q: I had surgery to remove my colon in 2000. Should I be supplementing my diet with vitamins? if so, which ones?
A: The food we ingest passes from the stomach into the small intestine (duodenum, jejunum, and ileum) before entering the large intestine (colon and rectum). The small intestine is responsible for absorbing most minerals and vitamins from the food we eat, and this process transfers these important substances from the bowel lumen to the bowel wall where the minerals and vitamins enter a network of blood vessels draining into the liver. The principal role of the large intestine is to remove water and electrolytes from liquid waste to hydrate the body and produce solid waste. The large intestine also absorbs vitamins that are created by the colonic bacteria, such as vitamin K, vitamin B1 (thiamine), vitamin B2 (riboflavin), and vitamin B12 (cobalamin). However, the bulk of these vitamins are absorbed in the small intestine through normal processes.
ANSWERED BY:
Expert Image
Scott A. Strong, MD
Northwestern Medicine, Chief, Division of Surgery-Gastrointestinal and Endocrine
June 2014
Q: My son was diagnosed in 2013 (at age 5) with ulcerative colitis. He had his colon removed in June 2013 and has an ileostomy bag. Dr.'s would like to do the j-pouch surgery on him, but I am very skeptical. How would I find parents of children my son's age that have ileostomy bags and going through similar situations? I see parents of much older children, but not younger ones. I am a single mother trying to deal with this all alone and I feel lost and overwhelmed.
A: While the decision to have j-pouch surgery is ultimately left for the gastroenterology and surgical experts, the CCFA is a wonderful resource to connect with other patients/parents with similar experiences. Speaking with the treating surgeon and IBD gastroenterologist may also provide patients/parents to exchange experiential stories. While IBD is a challenging disease at any age, younger children can often adapt quite well even to surgery, especially when the adults around them are able to make them feel comfortable about themselves. This positive adaptation is likely a result of a still formative self-identity in early years of life which is especially responsive to environmental influences, especially parental reactions. If the child does seem frightened, angry or depressed about having IBD or surgery, a few sessions with a behavioral specialist can be helpful to help teach coping skills often using play therapy techniques.
ANSWERED BY:
Expert Image
Eva M. Szigethy, MD, PhD
Associate Professor, Psychiatry, Medicine and Pediatrics
University of Pittsburgh School of Medicine
June 2014
Q: My son was diagnosed with Ulcerative colitis about 2 and half years ago .He is been taking 3 times a day Asacol 4 X 400mg = 1600Mg. + Canasa once a day before bed time. In the past 6 months he got into a cycle of three weeks feels great and then a week to 10 days later he feels bad. Is this cycle normal? Can you provide any information on this issue?
A: This is commonly seen in patients who are taking biologics and notice before their next infusion or injection that “it wears off” and they feel symptoms. This is less common with daily medications such as oral and rectal mesalamine. However, I have several patients who tell me there is a pattern to their symptoms. Usually when this happens, we review the week or days that they feel poorly to make sure there is no change, for example, they are not eating something differently, under more stress those weeks, taking their medications regularly, not taking other medications during these weeks (such as ibuprofen), or some other pattern in their lives to explain this. Often there is no change and we know that IBD may be cyclical in nature. During these weeks, it may be useful to determine if there is active inflammation, by blood or stool tests.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2014
Q: Why are the symptoms of UC so intense in the morning? Frequent bowel movements for a 2-3 hour period, with intervals lessening during that time.
A: Motility studies evaluating the rectum in patients with active ulcerative colitis show that rectal inflammation can lead to a sensitive, hyperactive and poorly compliant rectum. When ulcerative colitis is limited to the end part of the colon (rectum and sigmoid) symptoms such as tenesmus are common. Tenesmus is the passage of small stools with a sense of urgency and incomplete evacuation. A likely reason why symptoms are worse in the morning is the change of position from the recumbent position, while sleeping, to a sitting, standing or ambulating position while awake. More debris and fluid likely moves to the end portion of the colon (rectum and sigmoid) with the change in position due to gravity leading to tenesmus . The urgency and frequency may ease once debris from the rectosigmoid region is cleared but may persist if inflammation is severe.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2014
Q: Is the clinical course and progression of ulcerative colitis less severe in Asian patients than in Caucasians? Are cancer risks different or the same in Asian patients?
A: There have been several studies suggesting that Asians have less severe ulcerative colitis and lower colectomy rates compared to other ethnicities. Many of these studies were in non-American Asians, but a recent study from a health care organization in California showed similar results. Asians are a heterogenous group and more data is needed to know about specific ethnicities. More data is needed to know if cancer risk differs from other ethnicities.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2014
Q: I’ve had Crohn’s Disease for 10 years and been on remicade for the last two years. I am fatigued all the time. Are there any foods or vitamins I can take to help boost my energy level?
A: Fatigue may be a consequence of factors related to Crohn’s and the treatment for Crohn’s, but may also not be directly related to the disease. An evaluation to determine the cause for the fatigue is recommended and correcting the underlying cause. An evaluation by your gastroenterologist would typically include evaluation for anemia, malnutrition, and active disease Crohn’s disease which may play a role in causing fatigue. If anemia is present, then vitamin deficiencies should such as iron and B12 can be low in the setting of Crohn’s disease. B12 deficiency may also cause fatigue without having anemia. Fatigue may not be directly related to Crohn’s. Factors such as hypothyroidism, infection, heart disease, unbalanced diet (in caloric enteric or nutritional value), inadequate sleep and lack of exercise may contribute. I recommend keeping your provider informed of your symptoms to allow for an appropriate evaluation.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2014
Q: My 16 year old son was recently diagnosed with Crohn's disease. He was also diagnosed with Eosinophilic Esophagitis. He has had multiple life threatening food allergies and asthma since birth. Is there any relationship between food allergies and Crohn's disease? Could an offending foods cause inflammation and Crohn's like symptoms in the GI tract?
A: There have been several studies evaluating if a specific diet causes Crohn’s disease and there has not been a clear link found so far. Crohn’s disease is not considered an allergic disease. Celiac disease is caused by gluten (found in wheat and barley) may cause symptoms that are similar to Crohn’s.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2014
Q: My nine year old granddaughter has Crohn’s disease. She is doing well and feels fine. Since she is doing well, is there a need for her to attend various CCFA programs and events?
A: It is wonderful to hear your granddaughter is doing well. She would be a wonderful role model for other patients that are not in remission. The purpose of CCFA events is various, including education, networking and fundraising. Many of the events are meant to educate patients and caregivers about Crohn’s disease and ulcerative colitis and how it is cared for by medical providers. Some of the events are social, to provide social support and networking. Your granddaughter and caregivers can select which events is the right fit.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2014
Q: I recently had a flare. Prior to the recent flare I have been in remission for 10 years and I was taking mesalamine. The doctor wants to put me on Mercaptopurine and certolizumab pegol combination. The side effects are scary. What are the risk and benefits of this combination of medication?
A: There are risks to being on these medications. The risks need to be weighed against the potential benefits of better control of the disease (presumably Crohn’s). This risk/benefit balance should be discussed with your doctor who knows the details of your condition. Mercaptopurine has risks of side effects such as a flu-like reaction or inflammation of the pancreas (pancreatitis). There are also long term-increased risks of certain infections, skin cancer and lymphoma. The risk of these adverse events is still low, but increased over average risk. The certolizumab pegol also increases the risk of certain infections. There are other more unusual side effects to these treatments but these are the most prominent. The risks of these medications sound frightening, but most patients do not have side effects and if the treatment works well – generally the risks of the treatment are preferable to the consequences of uncontrolled disease. If the treatment does not work for the disease, the treatment can always be stopped and the risks generally are eliminated. Keep in mind that mesalamine, although generally a very safe medication without systemic effects on the immune system, is a very weak treatment for Crohn’s disease and it is very common that more effective treatments, such as mercaptopurine and certolizumab pegol are required. These are often very effective and the risks are acceptable if the treatment if effective.
ANSWERED BY:
Expert Image
Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
May 2014
Q: What are some effective treatments for acne that don't interfere with infliximab treatments?
A: Most acne treatment should not interfere with infliximab, particularly topical treatments applied to the skin. However, some treatments – such as antibiotics, might possibly cause diarrhea and aggravate the inflammatory bowel disease (IBD). You should let you GI doctor know if you are starting an antibiotic. There is one treatment used sometimes for acne called Accutane. It has been reported that this treatment maybe be associated with the onset or worsening of inflammatory bowel disease – although this conclusion has been debated and is not totally accepted. Discuss Accutane with your GI doctor if it is being considered to treat the acne. Of course, decisions regarding any acne treatment will be effected by the state of your acne and your IBD. Good information is available at CCFA.org http://www.ccfa.org/resources/types-of-medications.html
ANSWERED BY:
Expert Image
Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
May 2014
Q: What is a neo-end ilestomy?
A: An end ileostomy is created with an operation; the end of the small intestine (ileum) is connected to the abdominal wall and empties into a bag called an ostomy bag. With this arrangement the small intestine is not connected to the ‘downstream’ bowel. The terminal ileum is the very end of the small intestine where it empties into the colon (large intestine). When part of the terminal ileum has been removed the remaining ileum is sometimes called the neo (new) terminal ileum.
ANSWERED BY:
Expert Image
Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
May 2014
Q: I am a 62 year old female. A colonoscopy in Dec 2013 showed Crohn's Disease. It is limited to the colon as confirmed by a small bowel series. I have no symptoms. However, the GI doctor put me on mesalamine and a six day series of Prednisone. Is there a need for medication despite having no symptoms?
A: Research has shown that the presence of active Crohn’s disease detected by colonoscopy, x-rays or blood tests, even if there are no symptoms at the time the testing is done, predicts a higher risk that serious symptoms will develop. This is why many Crohn’s doctors will recommend potent treatments to suppress the active inflammation – thereby decreasing the risk that symptoms will develop. Whether to treat asymptomatic Crohn’s will depend on the severity of the inflammation, the length of time the inflammation has been present, the location of the disease etc. Treatment of Crohn’s is also more effective early on – soon after the diagnosis is made, compared to treatment started months or years later. Other medications used in this situation also include azathioprine, methotrexate and anti-TNF therapy (Remicade/Humira/Cimzia). Be sure and discuss options with your doctor. Good information is available at CCFA.org http://www.ccfa.org/resources/types-of-medications.html
ANSWERED BY:
Expert Image
Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
May 2014
Q: I am 59 and was diagnosed with Crohn's in April of 2013 after an intestinal blockage in the ilium. I am currently on 100mg of azathioprine. Is there anything I can do to unclog the intestine as soon as the symptoms start? I'm not currently on a special diet and only take a calcium supplement.
A: You may want to discuss diet with your doctor and possibly also a dietician. It may be helpful to avoid foods that are difficult to digest, particularly fresh fruit and vegetable skins – as well as excess fiber. These types of foods are more likely to get stuck in an intestinal narrowing and cause a blockage. If you feel like you are having early symptoms of a blockage, it may help to take only liquids, while you are waiting on further advice from your doctor. Depending on the situation and the level of Crohn’s inflammation, adding another medication when symptoms of obstruction start may be helpful. This is just another reason to let you doctor know when you are beginning to have symptoms that feel like a bowel obstruction. Good information is available at CCFA.org http://www.ccfa.org/resources/types-of-medications.html http://www.ccfa.org/resources/diet-and-nutrition.html
ANSWERED BY:
Expert Image
Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
May 2014
Q: I’ve had Crohns Disease for forty year. I’ve had two successful surgeries and been in remission except for fatigue and chronic constipation. What are some options to manage chronic constipation?
A: There are many ways to manage chronic constipation. Generally, the first goal is to eliminate factors that make constipation worse, such as certain medications or hormonal conditions. Lifestyle management comes next with increased dietary fiber, plenty of liquids and aerobic exercise. Laxatives are often needed. Most gastroenterologists discourage the use of stimulant laxatives such as senna, favoring products such as Miralax. Finally, there are prescription medications that may be necessary. Often, like with many conditions, trial and error is necessary to find the right strategy. Very helpful information is available from: The National Institutes of Health http://digestive.niddk.nih.gov/ddiseases/pubs/constipation/ The Mayo Clinic: http://www.mayoclinic.org/diseases-conditions/constipation/basics/definition/con-20032773 UptoDate http://www.uptodate.com/contents/constipation-in-adults-beyond-the-basics
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
April 2014
Q: I have had several surgeries. I have had a colostomy/ileostomy and a Hartmann’s pouch since 1989. Just recently, I am having a discharge from my rectum several times each day, and my doctor has no answer. What is causing this? Prednisone seemed to help, while I was on it for two weeks … any ideas?
A: The bowel lining is called mucosa because it secretes mucus. Patients who undergo creation of a colostomy or ileostomy without removal of the rectum can intermittently pass this mucus. Some people will pass mucus a few times each day while others will rarely discharge any mucus; most patients’ frequency is found to occur somewhere between the two extremes. The out-of-circuit bowel can also be inflamed secondary to the patient’s underlying disease or lack of mucosa nutrients normally contained within the waste. This inflammation can cause passage of blood tinged mucus that is usually of little clinical significance.
ANSWERED BY:
Expert Image
Scott A. Strong, MD
Northwestern Medicine, Chief, Division of Surgery-Gastrointestinal and Endocrine
April 2014
Q: Does a CT-Scan show Polyps and diverticulitis?
A: CT imaging of the abdomen and pelvis can show either polyps or diverticulitis. A special imaging technique called CT colonography generates three-dimensional images to examine the inside of the colon that is otherwise only seen with colonoscopy. CT colonography is merely a diagnostic procedure, and a colonoscopy is required to remove any identified polyps. CT colonography is sometimes unable to differentiate stool from smaller polyps and may not be as reliable as colonoscopy. Lastly, CT colonography is generally not recommended for patients who have active Crohn's disease or ulcerative colitis because of an increased risk of perforating the colon. Standard CT imaging is used to diagnose diverticulits, which represent an inflammatory complication of pre-existing diverticulosis.
ANSWERED BY:
Expert Image
Scott A. Strong, MD
Northwestern Medicine, Chief, Division of Surgery-Gastrointestinal and Endocrine
March 2014
Q: What is a Neo-end illestomy?
A: An ileostomy is when part of the last portion of the small intestine, or the ileum, is brought out through the abdominal wall, usually in the right lower quadrant and fecal matter is collected in a bag connected to an appliance that fits over the stoma. An “end” ileostomy is usually done when the colon is removed and the ileostomy is most often permanent. A “loop” ileostomy by contrast is generally temporary, with the colon usually being left in place, so that it can “rest” or heal while the fecal matter is diverted through the stoma. “Neo” just means “new” so this might imply that the ileostomy has been redone with a small amount of ileum removed.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
March 2014
Q: I was in remission for 12 years great yes! But for the last 14 I have been unable to achieve this. I only have 23% of my small intestine left. What options are available for intestinal transplants? I have blood transfusions every 3 month. I am on TPN and have been for two years for malabsorption. I am in constant pain and in reality I am miserable. I need something. Any feedback welcomed.
A: I’m sorry to hear about your severe condition. Small intestine transplants are done at a handful of centers in the country; evaluation and patient selection are rigorous. If you have active inflammation and have tried all the approved/traditional Crohn’s medications, you may want to talk to your doctor about whether you’d be a candidate for any clinical trials (experimental medications). Further, Gattex (Teduglutide) is a specific treatment for short gut syndrome and you should talk to your doctor about whether you could be a candidate for this medication. Given the seriousness of your condition, a second opinion at a well-known IBD center would be prudent.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
March 2014
Q: Since the onset of my symptoms I have experienced excessive cold sweats that begin as soon as I wake in the morning and continue throughout the day until early evening. I was curious if this is a symptom of UC, or could I be dealing with another issue. My GI does think that is just my body trying to fight the inflammation in me. I do not have a fever when this occurs either. I was wondering if this is a symptom of my UC, and any suggestions for dealing?
A: Excessive sweating would be an unusual symptom of UC in and of itself. Other considerations would be a side effect of steroids, which are commonly prescribed in UC (although should just be used for short term therapy), menopause, low blood sugar, infection, and rarely an early sign of cancer such as lymphoma (but usually they are night sweats and also occur with other symptoms such as weight loss). There is an entity called “idiopathic hyperhidrosis” for which there is no underlying medical cause of the sweating. I would suggest consulting with your primary care doctor as well as your GI doctor. Certainly if your UC is not well-controlled both by symptoms and by colonoscopy, then it’s appropriate to discuss optimizing treatment for your UC. If the sweating were a symptom of the UC, then it should get better/remit when the UC is in remission.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
March 2014
Q: I was diagnosed with left sided UC 4 years ago. I have been on 6mp for 2.5years, and have always been prescribed Prednisone when I flare and it seems to work almost immediately. I have been in a "raging flare" for 1.5months with a co-occurring C-diff infection being treated by Vancomycin. I have constant excruciating pain that even the strongest medications in the hospital can't control. Do you have any advice?
A: You first need to clarify with your doctor whether he/she believes your symptoms at this point are more from recurrent CDiff, active UC or a combination (vs other). This opinion should be informed by CDiff testing, blood work and colonoscopy/biopsies. Depending on the outcome of this discussion/evaluation, other questions to ask: 1) do you need a different/longer treatment for the CDiff? 2) Do you need different treatment for the UC: are you on the right dose of 6-MP? Optimal drug dose is based on weight and how you metabolize the drug (your “TPMT” activity), as well as your white blood cell count and liver enzymes. You might want to discuss with your doctor whether your dose has been “optimized” and whether doing “metabolite” testing to see whether you are on a sufficient dose is possible. If your dose is optimized, then you should talk with him/her about other available therapies for UC. Steroid use should be kept at a minimum.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
February 2014
Q: I recently had a colonoscopy. The doctor did endoscopy tattooing. and also removed 5 large polyps. My urine is very blue. How can the indigo ink get into the bladder?
A: What has likely happened is that a small portion of indigo carmine dye was absorbed into a blood vessel and entered the circulation, where it was filtered by the kidneys, collected in the bladder, and then was excreted during urination. This is reported and should not cause alarm. In fact, one of the original uses of this dye was to measure kidney function. It is generally harmless and will clear after a short period of time.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
February 2014
Q: Is it normal to have blood with diarrhea with colitis. I was diagnosed 2 weeks ago. I am taking Lialda and sometimes symptoms are better and sometimes not but I still have blood with the diarrhea and sometimes without. I am trying to find out if this is normal.
A: Finding blood in the stool is not uncommon in ulcerative colitis. While blood is often the result of ongoing inflammation in the colon, it is important to consider alternative causes including hemorrhoid bleeding and occasionally infection. It will take time for medical therapy to become effective, but if bleeding persists the cause should be evaluated. Further, if there is continued bleeding due to active ulcerative colitis, it may signify that the current treatment is insufficient and a different regimen is needed.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
February 2014
Q: What is a sedimentation rate? Is there a standard level for each person? How is the sedimentation rate lowered?
A: The erythrocyte sedimentation rate is a blood test that can help healthcare providers track inflammation. It is a useful test, measuring the speed of erythrocytes descending through a special collection tube to assess systemic, body-wide inflammation. In IBD, it is essential to monitor inflammation with objective tests, as significant activity may not cause symptoms. Colonoscopy, CT-scans, and MRI are excellent tests for inflammation but they can not be frequently performed because of risk, expense, and inconvenience. ESR is a reasonably priced blood test that is easy to perform and provides non-invasive data regarding inflammation. The limitations of ESR are (1) it may not be elevated even when significant bowel inflammation is present, and (2) it is not specific for bowel inflammation, any inflammation can elevate the level. Despite these limitations, in selected patients ESR can be monitored to reflect how patients are responding to therapy. ESR or CRP that remains very elevated (your doctor will determine whether elevations are due to IBD) may indicate that a change in treatment is needed. In the coming years, more accurate non-invasive markers of bowel inflammation will become widely available, including stool tests of inflammation like fecal calprotectin and lactoferrin.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2014
Q: I was diagnosed with UC 5 years ago and after a year of trying out different meds my dr. found a combination that worked for me. I started off with 60 mg of prednisone and have since then tapered down to 5 mg. I have been on that dosage for the last few years. Is it safe for to be on steroids for so long?
A: While 5mg is a low dose of prednisone, there is no ‘lower limit’ for what is considered safe. So while it is better than being on 60mg/day, it can still be associated with risk of side effects at a lower frequency. If there are medical alternatives available, then continued attempts should be made to come off even the 5mg/day of steroids, particularly in younger individuals where several decades more of exposure may be expected. In contrast, if someone is older or has significant co-morbidity that precludes further medical treatment, then it is reasonable to stay on long-term low dose steroids recognizing that the risk of side effects remain significant in that situation. Consideration should also be given for potential surgical treatment as surgery for ulcerative colitis is curative and would help coming off the steroids.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2014
Q: I have Crohn’s and have anemia and I get monthly shots of B12. I have trouble breathing with stair climbing or bending over and sometimes just a brief walk to another room. I rest as much as I can. How can I gain my energy back?
A: There is increasing recognition of fatigue and low energy as an ‘extraintestinal’ manifestation in patients with Crohn’s disease. Sometimes there is a nutritional cause for this such as low B12 or low iron and anemia. If you are still anemic and are deficient in iron, that could be a cause for your symptoms. Sometimes a gradual exercise program is able to help with improving exercise tolerance and reduce fatigue. Of course, it is important to ensure that your Crohn’s is under remission and that there isn’t an alternate explanation for your trouble breathing including problems with the heart or lungs.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2014
Q: I had a resection two years ago due to blockage from Crohn's disease. I have been on no medicine for over 5 years. I had a colonoscopy last year and the inflammation is back. Is that ok for Crohn’s disease patients not to be on medicine?
A: Most patients with Crohn’s disease will require some long-term medical treatment. In studies were people stopped medicines when they were feeling well and in remission, a substantial portion developed a relapse within two years. However, there is a subgroup of patients who, particularly after a limited surgical resection primarily related to strictures (which is what it sounds like you had) who do well for a number of years without recurrence of disease though in most cases, it comes back eventually. In such patients, it is reasonable to monitor for endoscopic evidence of active disease periodically (every 1 year or so) and then start treatment early once endoscopic lesions have developed but before clinical symptoms. We know that in most patients, endoscopic disease precedes clinical disease, and that treating early on is associated with better outcomes.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2014
Q: I was just released from the hospital after spending four days there. I was admitted because I was having bleeding with bowel movements and also fatigue and nausea. I had a colonoscopy done which showed two ulcers, polyps and that my ulcerative colitis was active. When I was released from the hospital the rectal bleeding has stopped and I started feeling much better. Before I left the doctor ordered a CRP. I got my result today and they showed CRP was 37.9 normal is 0-5. What could this mean?
A: C-reactive protein (CRP) is a protein produced by the liver in response to inflammation. CRP levels can go as high as 200 in the setting of active inflammatory bowel disease and the half-life of the protein is approximately 19 hours. The result of 37.9 suggests that there is still inflammation and likely higher when you initially presented to the hospital. Clinical symptoms improve much faster than markers of inflammation such as CRP and the intestine itself.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2014
Q: I was just released from the hospital after spending four days there. I was admitted because I was having bleeding with bowel movements and also fatigue and nausea. I had a colonoscopy done which showed two ulcers, polyps and that my ulcerative colitis was active. When I was released from the hospital the rectal bleeding has stopped and I started feeling much better. Before I left the doctor ordered a CRP. I got my result today and they showed CRP was 37.9 normal is 0-5. What could this mean?
A: C-reactive protein (CRP) is a protein produced by the liver in response to inflammation. CRP levels can go as high as 200 in the setting of active inflammatory bowel disease and the half-life of the protein is approximately 19 hours. The result of 37.9 suggests that there is still inflammation and likely higher when you initially presented to the hospital. Clinical symptoms improve much faster than markers of inflammation such as CRP and the intestine itself.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
January 2014
Q: I was just released from the hospital after spending four days there. I was admitted because I was having bleeding with bowel movements and also fatigue and nausea. I had a colonoscopy done which showed two ulcers, polyps and that my ulcerative colitis was active. When I was released from the hospital the rectal bleeding has stopped and I started feeling much better. Before I left the doctor ordered a CRP. I got my result today and they showed CRP was 37.9 normal is 0-5. What could this mean?
A: C-reactive protein (CRP) is a protein produced by the liver in response to inflammation. CRP levels can go as high as 200 in the setting of active inflammatory bowel disease and the half-life of the protein is approximately 19 hours. The result of 37.9 suggests that there is still inflammation and likely higher when you initially presented to the hospital. Clinical symptoms improve much faster than markers of inflammation such as CRP and the intestine itself.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
December 2013
Q: Please discuss self-dilation for rectal stenosis. What are the risk and benefits?
A: Rectal stenosis is a narrowing of the anal canal, and patients who have Crohn’s of the anus and part of the rectum closest to the anus are at risk for developing this condition. Similarly, patients who have had a J-pouch may sometimes develop a post-operative anal stenosis. It is important to have the stenosis (whether from Crohn’s or from the J-pouch) evaluated by a surgeon to make sure that the narrowing is not being caused by cancer. However, once the cause of the stenosis has been confirmed as a benign stricture, dilation is a very effective treatment. Often times, the first or second dilation is carefully performed under anesthesia so as not to damage the anal sphincter. If the stenosis recurs after dilations, self-dilation at home is sometimes very useful in alleviating symptoms of obstruction and constipation. Patients can be instructed how to safely insert the sequential dilators on a daily basis much like patients with recurrent esophageal strictures have been taught to self-dilate. The biggest risk is damage to the anal sphincter, but this can be avoided if the diameter of the dilators being used are slowly increased over time, and that there is not too much of a stretching initially.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
September 2013
Q: I was diagnosed with Crohn's disease three years ago. I had pancreatitis, uveitis, and abdominal pain. My doctor started me on Entocort and my fatigue seems a little better. I have uveitis right now and feel like I have a hard time concentrating and I wanted to know if that's due to my uveitis and dry eye or could it be a symptom of Crohn's? I also do not experience the diarrhea that is a common symptom can that happen?
A: The uvea is the middle layer of the eye, just below the sclera. Inflammation of the uvea is called uveitis. Iritis and iridocyclitis are subtypes of uveitis. Uveitis may result in painful, red eyes. This condition is seen in people with Crohn’s disease but is not considered to be Crohn’s involving the eye as uveitis can occur in people without Crohn’s. Painful, red eyes – or any change in vision should be evaluated by an ophthalmologist as soon as possible. Treatment is often with medicated eye drops. Do not assume the symptoms are just from dry eyes. A nice discussion of inflammatory bowel disease associated eye problems can be found on the CCFA website: http://www.ccfa.org/assets/pdfs/eyes.pdf. Not everyone with Crohn’s experiences diarrhea. It depends on the amount of intestine that is involved and the behavior of the Crohn’s. Some people get narrowed areas in the intestine that may actually slow the bowel down.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
September 2013
Q: After an appendectomy about 6 weeks ago, I have suffered the worst UC symptoms I've ever experienced. Is this possibly related to the appendicitis?
A: It is not clear why your UC symptoms worsened after the appendicitis. Perhaps antibiotics were used around the time of the appendicitis, or maybe your UC medication had to be stopped for a while. You should discuss your current flare with your doctor.
ANSWERED BY:
Expert Image
Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
September 2013
Q: I am writing a report on IBD and wish to get information about the number of people with the disease in Connecticut.
A: Two major epidemiological studies on estimates conducted in the United States, one in California and the other in Minnesota. The results for both studies are included in “The facts About Inflammatory Bowel Disease” http://www.ccfa.org/assets/pdfs/ibdfactbook.pdf. Information from these studies as well as information on Connecticut population data will assist you in identifying an estimated number of people with the disease and estimated number of new cases.
ANSWERED BY:
Expert Image
Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
September 2013
Q: My 11 year old son has just been diagnosed with Crohn's Disease. His doctor, a pediatric GI, has given me the option for the next level of treatment as Imuran or Remicade. What are your experiences with either of these drugs for young children?
A: I am an adult gastroenterologist but sought the opinion of four pediatric gastroenterologists. Either medication can be used, depending on the details of the individual case. They had no particular preference, in general, between Imuran or Remicade treatment in an 11 year old.
ANSWERED BY:
Expert Image
Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
September 2013
Q: I am not able to afford my medication as I have no insurance - please advise me of programs that could help me or manufacturers of the medication that I could get for free. I need Flexeral, Delzicol 400 mg and Prednisone 5 mg - please help
A: There are a number of patient assistance programs that you may contact for help with paying for medication including: www.needymeds.org and www.rxassist.org. The manufacturer of Delzicol has not yet established a patient assistance program for this medication. Beginning Oct 1, 2013 you can enroll in one of the Health Insurance Marketplaces for low cost insurance. Check out www.healthcare.gov.
ANSWERED BY:
Expert Image
Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
September 2013
Q: I am 41 year old living with Crohn's since age 9. I have permanent colostomy with a resection of the small bowel, no terminal ileum. I also have chronic peristomal pyoderma gangrenosum. I may have lost remission due to a Norvo virus infection. I’m on 6-MP, steroid dependent and have hypersensitivity to Remicade and Humira. What other options are there for me to discuss with GI and I am open to trials? I know there are some having immune transplants and a new IV infusion from Japan. Any ideas?
A: There are options, FDA approved options would include certolizumab (Cimzia) and natalizumab (Tysabri). Ask your doctor if the 6MP treatment is optimized. Consideration might be given to using other immune suppressing treatments approved for other indications but not Crohn’s. Research treatments are another good option. The CCFA website has helpful information regarding participation in research trials: http://www.ccfa.org/resources/intro-to-clinical-trials.html You can also search for available treatment trials on the CCFA website: http://www.ccfa.org/research/participate-in-research/find-studies-and-clinical-trials/ It is most important that you discuss your situation with your doctor. If your doctor does not have any recommendation beyond your current treatment, consider pursuing an opinion from a gastroenterologist with a special interest in Crohn’s disease.
ANSWERED BY:
Expert Image
Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
September 2013
Q: I have chronic, everyday perineal pain secondary to an unhealed perineal wound from surgery. After surgery my body reacted and pyoderma gangrenosum started to form in that area. I take ibuprofen everyday - usually six 200mg tablets a day. It seems this is the only thing that helps besides narcotics and I can't take those every day. What can ibuprofen do to my Crohn's disease down the road?
A: Ibuprofen has been shown to make Crohn’s worse, possibly causing flare ups. It can also cause stomach ulcers if used at the dose you are taking, even in people without Crohn’s. Of course, it is also not a good idea to take the narcotic pain medicines long term. You should discuss options to get the pyoderma gangrenosum under control with your surgeon and your gastroenterologist. When the pyoderma is controlled, there should be less pain and less need for the ibuprofen or narcotic pain medications.
ANSWERED BY:
Expert Image
Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
September 2013
Q: I am currently only on Remicade (6th year). It does keep symptoms at bay. However, frequently, a week or so before time for next treatment (every 8 wks) I get rashes on neck, chest, face, shins, or bend of arm. Is the Remicade wearing off too soon? Can you give me info concerning this issue? I have seen dermatologists and my MD. I get steroid shots and creams that do help but I would like to know the cause and possible prevention.
A: This is a peculiar pattern, most immune reactions to Remicade occur immediately or 1 – 2 weeks after infusions. Symptoms that occur near the end of the 7 weeks suggest that the Remicade effect is wearing off. It sounds like your Crohn’s symptoms are controlled for the whole 8 weeks, however. Skin lesions are best diagnosed by a dermatologist with a skin exam. Based on the timing, it is tempting to speculate that the skin rashes are a result of Crohn’s activity – but this would be best judged by your gastroenterologist and dermatologist. Ask your gastroenterologist if any testing needs to be done to assess the activity of the Crohn’s. Sometimes it is helpful to measure the Remicade level in the blood and also determine if your body is making antibodies against the Remicade – if it is suspected that the skin rash is some kind or Remicade reaction. This is an expensive blood test however. The CCFA website has a description of skin lesions seen with Crohn’s. It does not sound like you have one of these, but ask your doctors: http://www.ccfa.org/assets/pdfs/skin.pdf
ANSWERED BY:
Expert Image
Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
September 2013
Q: Can ulcerative colitis cause small intestinal bacterial overgrowth, or vice versa?
A: Ulcerative colitis is not likely to cause small intestinal bacterial overgrowth. However, it is thought by some researchers that small intestinal bacterial overgrowth may be relatively common, so some people may have both ulcerative colitis and bacterial overgrowth. There is much ongoing research looking at the role of bacteria in ulcerative colitis. However, at this time, small intestinal bacterial overgrowth is not considered a cause of ulcerative colitis.
ANSWERED BY:
Expert Image
Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
September 2013
Q: I have had Crohn's in my terminal ileum since 2007, and maintained on Pentasa. I've recently become anemic. Colonoscopy and pill cam looked normal, but my SBFT indicated that my TI "appears relatively smooth and featureless with loss of its normal mucosal fold pattern consistent with a history of chronic terminal ileitis." My questions are: 1. Is my mucosal lining permanently damaged? Can it regenerate? 2. Would these results be enough to explain anemia?
A: 1. There may be some permanent scarring in the section of small intestine affected by the Crohn’s. There is potential for regeneration, but some scarring may be permanent. 2. It sounds like there is no obvious explanation for the anemia on the tests described. However, there are many cause of anemia besides loss of blood from active Crohn’s. Ask your doctor about this.
ANSWERED BY:
Expert Image
Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
September 2013
Q: Is there any new research on diet and IBD?
A: In the study “Dietary Patterns and Self-Reported Associations of Diet with Symptoms of Inflammatory Bowel Disease”, completed by Cohen et al. (2012) as part of our CCFA Partners research initiative, yogurt, rice, and bananas were more frequently reported to improve symptoms whereas non-leafy vegetables, spicy foods, fruit, nuts, leafy vegetables, fried foods, milk, red meat, soda, popcorn, dairy, alcohol, high-fiber foods, corn, fatty foods, seeds, coffee, and beans were more frequently reported to worsen symptoms. You can find out more information about these results in the abstract or manuscript of this study published here: https://cgibd.med.unc.edu/ccfapartners/results.php .
ANSWERED BY:
Expert Image
Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
July 2013
Q: Is cimzia safe to take if my husband and I plan on having more children?
A: The anti-tumor necrosis factor agents – infliximab, adalimumab, golimumab and Certolizumab – (B) are considered low risk during pregnancy and compatible with lactation. Infliximab and adalimumab are IgG1 antibodies and therefore are actively transported across the placenta in the 2nd and 3rd trimester. Levels of drug are detected in the cord blood at birth and in the infant for up to 6 months from birth. Certolizumab is a Fab’ fragment and crosses the placenta only passively so levels are minimal at birth. While the use of adalimumab, golimumab and infliximab during pregnancy has not been associated to date with any increase in infections or immune development, infants exposed in utero should not receive live virus vaccine for the first 6 months of life. In the United States the only live virus vaccines up to 6 months is rotavirus. The mother and the pediatrician should be aware of this risk as well as that all standard attenuated vaccines can be given on schedule and with good response. To minimize placental transfer, in my practice, I give the last dose of infliximab at about week 32 gestation and adalimumab and goliumab at weeks 36-38. If the patient has active disease, they should continue on schedule. No change to timing of dosing or vaccinations is needed for Certolizumab. However, all infants exposed to anti-TNF agents in utero should be monitored closely by their pediatrician for unusual infections. Based on this, if you plan on getting pregnant soon, the best anti-TNF choice for you in certolizumab (Cimzia)
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
July 2013
Q: What is leaky gut syndrome?
A: Leaky gut is a loose term used to describe hyperpermeability of the gut, or too much space between the cells lining the gut. The consequence of this is that gut contents can more easily seep out into the body and blood stream and potentially cause an inflammatory response.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
June 2013
Q: I have recently started to lose a lot of hair. I have severe Crohn’s and am on Imuran and Remicade. The dermatologist says that these medications are associated with hair loss. I don't want to lose my hair. Have people had experiences with hair loss, and, if so, what have they done? The dermatologist said that at some point the hair loss will "level out" .
A: In the setting of Crohn’s there are several potential triggers for hair loss. Malnutrition, zinc and iron deficiency, excess vitamin A, severe illness, and medications are potential reasons. Inflixmab (Remicade) and azathioprine (Imuran) can rarely cause hair loss. Blood work through your gastroenterologist or dermatologist may help identify if there is a nutritional deficiency. If the hair loss can be clearly attributed to the medications, then it will need to be determined if the hair loss is from an immune related reason, such as alopecia areata. Patchy hair loss is seen with alopecia areata, whereas diffuse hair loss may be seen with nutritional deficiencies and malnutrition. Alopecia areata can sometimes be treated with medications that will allow continuation of Crohn’s therapies .I would recommend following up with your dermatologist to discuss the issue.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
June 2013
Q: What Treatment options do I have for Excessive BM I have 25 to 65 a day and have short bowel syndrome due to numerous surgeries due to infected areas from Crohn's? I have done so many things and no help. I also have severe hemorrhoids and they say they cannot do surgery on them due to since I use the restroom so much that the risk of infection is much higher. So I am at a loss. Any help please.
A: Treatment will need to include treating Crohn’s disease and treating short gut syndrome. If you have active Crohn’s disease, then medical therapy should be initiated or adjusted if possible. As far as management of short gut syndrome, this will require help from your gastroenterologist and dietician. Some medical centers may have providers that specialize in short gut syndrome. Treatment of short gut may entail treatment with anti-diarrheals, octreotide, gastric acid suppressants, bile acid resins, dietary modification-decreased fat intake, treatment for small bowel bacterial overgrowth, and supplemental nutrition with total parenteral nutrition (nutrition through an intravenous catheter). Teduglutide, a glucagon like peptide 2 analogue, may help increase absorption and decrease fluid and nutrient losses in the small intestine. A short gut syndrome brochure is also available through the CCFA website.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
June 2013
Q: I have been on Remicade for almost a year. I was going to the hospital every 8 weeks for infusions, but now I go every 6 because of recurring symptoms. Is this common? How common? Have you ever heard of anyone going more frequently AND increasing the dosage? From time to time I will get a really red rash all over my body and my face and hands get puffy and it burns really bad. Is this a common side effect of the Remicade?
A: Loss of response to infliximab (Remicade) is common and occurs in up to 50% of patients. This may be due to increased clearance of infliximab over time. So by the 8th week you may no longer have drug in your blood stream. There is more than one approach to handle recurring symptoms. Your gastroenterologist may want to obtain an infliximab level immediately before you are due for an infusion to help determine if a change in infliximab dosing and frequency is needed. Your provider may decide to empirically increase the dose if you are not on the maximum dose or/and increase the frequency of the infusion based on the timing of your recurring symptoms. Rash may occur with infliximab and I would recommend seeing your gastroenterologist and dermatologist to determine the type of rash (such as from a lupus like syndrome, psoriasis, or photosensitivity) and treatment needed
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
June 2013
Q: What are the benefits of using brand Delzicol vs a generic product?
A: There are two groups of 5-aminosalicylates, mesalamine and non-mesalamine 5-aminosalicyalte. Mesalamines are 5-aminosalicylates that are released at specific pH. The non-mesalamine 5-aminosalicylates are released by bacterial breakdown. Delzicol is a mesalamine. There is no generic mesalamine available in the United States. Other oral mesalamines include Apriso, Asacol HD, Lialda, Pentasa, and Delzicol. The mesalamines differ in how they release inside the gastrointestinal tract. Your gastroenterologist can help you determine which product is best for you.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
June 2013
Q: I was diagnosed with UC almost 30 years ago. Last year, my gastroenterologist removed most of a "precancerous polyp"during a routine colonoscopy. Since then, the polyp has grown back in the same place during the 3x I was rechecked *, while there is no additional dysplasia, the dr. is recommending that I have a prophylactic removal of my colon and has referred me to a general surgeon. Where can I find more information about this type of surgery? Is there a specific type of specialist to ask?
A: If the polyp is in the field of active colitis and cannot be removed then the surgery is a proctocolectomy (colon and rectum removed). The surgeon would tell you if you are a candidate for a pouch (small intestine used to create a pseudo-rectum) versus an ileostomy. Colorectal surgeons specialize in surgery pertaining to the lower gastrointestinal tract. More information about proctocolectomy can be found at the Crohn’s Colitis Foundation Association website (Surgery for Crohn’s and Ulcerative colitis brochure) and the American Society of Colon and Rectal Surgery.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
June 2013
Q: I have a history of mild colicky pain in abdomen in on and off nature, decreased appetite, low grade fever (20 days), weight loss, weakness for 4-5 months. Examination (colonoscopy and CT scan) suggested IBD (possible crohn's diseae). However biopsies indicates non specific colitis and rule out IBD. I am prescribed sulfasalazine and budesonide tablet. I have 4-6 bowel movement/day but no pain. Please guide if I should get further examination done to confirm diagnosis of crohn's disease.
A: A diagnosis of Crohn’s disease is based on a constellation of findings on endoscopy and pathology. Imaging of the small bowel is usually needed as well to determine the extent of disease. The findings mentioned do not confirm Crohn’s but also do not eliminate it as a possibility. Early in the disease process specific findings on pathology may not be present and over time may change to one that is more specific for Crohn’s. So, a follow-up colonoscopy with biopsies several months later may helpful. There are blood tests (such as saccharomyces cerevisiae antibody) for Crohn’s but there absence does not eliminate Crohn’s as a possibility. Of course, your physician should consider additional diagnoses.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
June 2013
Q: I have had Crohn's disease for 33 years and was recently diagnosed with a high grade retroperitoneal sarcoma. Before surgery I will undergo radiation therapy and am very concerned about how this will affect my IBD. I have not been able to find much information on this topic. Can you direct me some literature or website? Anything would be appreciated. Thanks.
A: In a review by Chon et al, published in the Oncologist, the effects of radiation therapy in patients with inflammatory bowel disease were assessed. The largest study (28 patients) evaluating the effects of radiation to disease activity, 21% has severe acute effects and 29% severe late effects. There was no control group. The risk was higher for late effects in patients without radiation therapy precautionary measures. Precautionary measures included lateral decubitus position, proton beam therapy if available, smaller fields, scheduled rest periods. Reference: Chon B, Loeffler J. The Oncologist. 2002;7:136-143
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
June 2013
Q: Can people with Crohn’s safely donate blood. I'm 16 and in my state old enough to donate, however my parents are concerned just because of my Crohn’s I shouldn't donate . My mom also said because I take 6mp they won't let me donate? I'm not having a flare and meet all the criteria. Is there any reason that I can't donate if my blood counts are currently fine?
A: Crohn’s disease will not disqualify you from donating blood. On the other hand, Crohn’s that is not well controlled and having complications related to Crohn’s disease such as anemia are reasons you may not be able to donate. Treatment with 6-mercaptopurine will not disqualify you. More information is available at the American Red Cross website, www.redcrossblood.org.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
June 2013
Q: My son is an athletic 16 year old diagnosed this year with CD. He pushes himself very hard physically but is unable to build muscle despite eating mostly protein, fruit and vegetables. He is extremely fatigued. He is on Pentasa, Flagyl and Methotrexate (oral) - 3 weeks. Will he stop feeling so tired? Will he ever get back to normal again? Can he continue to pursue athletics now that he has Crohn’s or is that hurting his progress toward remission?
A: The symptom of fatigue may be a combination of factors related to Crohn’s disease: active disease which will cause fatigue and even weight loss, anemia from blood loss related to the disease, and malnutrition due to inability to absorb nutrients adequately. So all these factors need to be taken into consideration and addressed to help him improve. Methotrexate’s clinical effect may take up to 12 weeks so it is too early to know if he is a responder to medical therapy. If his Crohn’s is very active, he may have physical limitations and he may be placing himself at risk for complications and increased symptoms with moderate-high intensity exercise. Once he is in remission or has mild symptoms he may resume his regular activity with guidance of his physician. In fact, exercise is encouraged to maintain muscle mass and encourage well being when inflammatory bowel disease is not very active.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2013
Q: Do people ever gain weight after colonectomy surgery?
A: Patients’ weights can respond differently to having their colons removed. For example, patients who have taken steroids for an extended period of time often experience weight loss after their colon surgery because they are able to successfully discontinue their steroid therapy. Similarly, patients kept inactive secondary to their disease may lose weight after the affected bowel is removed because they can resume more vigorous activities after recovering from surgery. On the other hand, patients whose diet or caloric intake was limited by their disease, will often gain weight after their colectomy because they can return to a more healthy diet that enables their bodies to rebuild.
ANSWERED BY:
Expert Image
Scott A. Strong, MD
Northwestern Medicine, Chief, Division of Surgery-Gastrointestinal and Endocrine
February 2013
Q: I have been going through some rough flares recently and am so tired all the time. I used to go to work with initiative to accomplish goals and be successful in what I do. Now I just do not care. I know that I am blessed to have a job, but struggling with this disease has taken away my drive for work, exercising, and even spending time with my family. Do you have any advice on how to get the drive back?
A: Fatigue is a very common problem in patients with IBD, both during disease flares but also during times of remission. This fatigue can come with poor sleep, low energy, and depression, if symptoms become severe enough. Sleep disturbance is common in patients with IBD, and there are several potential reasons for this, one of which is that the inflammatory substances in the gut may also have an impact on the brain. Medications used to treat IBD affect sleep, especially steroids. If poor sleep is contributing to the symptoms you describe, there are things you can try to get better sleep. These techniques, sometimes called ‘sleep hygiene,’ include setting a specific schedule and being very consistent in sleep and wake times. People who sleep the best often engage in relaxing activities before bedtime, rather than watching violent TV or movies that can arouse people. It is important to get all of your sleep at one time, and you should avoid napping during the day, especially if you find yourself tossing and turning at night. People are encouraged to avoid alcohol, as this can worsen the quality of sleep and make it less refreshing. When “drive” is low, a jump start is often needed, and the longer you remain ‘stuck in a rut,’ the harder it can be to break out. However, just like bad habits can breed more bad habits, good habits can lead to more good habits and help you to break out of your low motivated ‘funk’. Scheduling your day (and sticking to it!) can be very useful with this, and I would encourage you to detail your activities for the week. Be very specific and build enjoyable things into your schedule (exercise, time with family), as well as things that you have to do (work). The longer you can stick to this routine, the easier things become. Sometimes, low motivation and poor sleep may be signs of depression or other mental illness, so if your symptoms are going on for more than two weeks, it is worth discussing with your physician as you may require more help
ANSWERED BY:
Expert Image
Eva M. Szigethy, MD, PhD
Associate Professor, Psychiatry, Medicine and Pediatrics
University of Pittsburgh School of Medicine
February 2013
Q: My wife just up and left me 4 weeks ago and my stress level is at an all time high. I feel like I'm having a breakdown and my stomach has been in constant turmoil. I tried now for 4 weeks to tough it out and let myself heal emotionally the natural way, but it just isn't working. Any advice would be greatly appreciated on how to deal with the stress and managing my Crohn’s disease.
A: Life stress, especially the loss of a relationship, has been linked with worsening gastrointestinal symptoms in patients with IBD. This is thought to be due to the strong connection between the gut and brain, especially the areas of the brain that regulate our emotions. Though I’m sorry to hear about your recent break-up, there are several things you can do to decrease stress and help yourself feel better during this challenging time. First, it is very important to get back to activities that are enjoyable for you, even if it is difficult to force yourself to do them. When we relax or find pleasant diversions, it gives our brains a rest from processing the stress. Taking 10 minutes a day to focus on relaxation can be effective in decreasing stress. One breathing exercise involves deep slow breathing…counting to 4 while breathing in through your mouth, holding it for 4 counts, and letting the breath out through your mouth over 8 counts for 10 breath cycles can decrease stress. Second, finding the company of trusted friends is especially important when dealing with stress, as positive social interactions have been shown to decrease the stress response that affects the gut. Finally, if stress is chronic or extreme, it can through a switch in the brain causing an emotional reaction to become a more clinically significant depression or anxiety disorder which can benefit from the services of a professional therapist or counselor. Letting your gastroenterologist know about your life stress is a good place to begin.
ANSWERED BY:
Expert Image
Eva M. Szigethy, MD, PhD
Associate Professor, Psychiatry, Medicine and Pediatrics
University of Pittsburgh School of Medicine
February 2013
Q: I was recently diagnosed with Crohn's although I've probably had it for years and didn't know it. Being told you have what is a lifelong disease that will never be cured, and will likely only get worse and may lead to surgical removal of parts of your intestines is really like being continually smacked in the face. How exactly do you accept that, I mean truly accept it? Where do I start?
A: The first place to start is to give yourself permission to have a reaction and to know that it is normal to have a range of responses when diagnosed with Crohn’s disease, something unexpected and life-altering. It is natural to go through some type of grieving process about the loss of health, similar to how people react to the loss of a loved one. The responses involved vary among individuals. Some people get sad, others get angry but there is no right or wrong way to grieve. What is important is that you recognize your feelings and remind yourself about other difficult challenges you have adjusted to in the past. Although the passage of time is the best healer, there are active steps that have helped others with Crohn’s disease accept their diagnosis. Talking about it with others is a good first step whether it is good friends or family or through a CCFA support group or activity. Some patients find it helpful to journal about their experiences as a way to work through the emotions. Others find it useful to focus on other aspects of their lives that they can control. For example, thinking about three positive things in your life or three small tasks or steps you will achieve that day. Finally, others have found that “finding the silver lining” about a situation (i.e., something positive or something that could be even worse by comparison) helps them feel better. In fact, many studies show that optimistic thinking can positively influence how well your body copes with the disease and how well your immune system responds to the medications or your gastrointestinal tract heals from surgery.
ANSWERED BY:
Expert Image
Eva M. Szigethy, MD, PhD
Associate Professor, Psychiatry, Medicine and Pediatrics
University of Pittsburgh School of Medicine
January 2013
Q: Is there any guidance for the frequency of having a colonoscopy for someone with long standing Crohn's (30 years)?
A: The major governing organizations in the field of gastroenterology (American Gastroenterological Association and American College of Gastroenterology) have developed recommendations for patients who have ulcerative colitis (UC), with similar guidelines for individuals who have Crohn’s disease involving the colon. These guidelines were developed due to increased risk for colorectal cancer in patients living with ulcerative colitis and Crohn’s colitis and are based on the extent, duration, and age of disease onset. Individuals who have pancolitis (colonic inflammation in all or most of the colon) should have a surveillance colonoscopy 8 years after diagnosis, and individuals who have left-sided colitis should have a surveillance colonoscopy 15 years after diagnosis. After this initial surveillance colonoscopy, colonoscopy should be repeated every 1-3 years. If a patient has both colitis and primary sclerosing cholangitis (PSC), it is recommended that they have a colonoscopy annually after initial diagnosis. It is important to have this discussion with your gastroenterologist since guidelines will need to be adjusted based on how the individual is doing. There may be additional things to consider depending on the individual patient, including the degree of inflammation in the colon, any prior history of pre-cancerous changes in the colon prior to, or during diagnosis, and family history.
ANSWERED BY:
Expert Image
Sandra C. Kim, MD
Associate Professor of Clinical Pediatrics
The Ohio State University College of Medicine
Pediatric Gastroenterology, Hepatology, and Nutrition
Nationwide Children’s Hospital
January 2013
Q: Could stress cause my daughter to develop IBD or an ulcer? About six months ago she started having "stabbing pains like needles" in her stomach. We have taken her to the doctor repeatedly, he ran blood work, but said everything is "normal." She has weight loss, repeated illnesses, lowered immune. What tests can you recommend?
A: We often blame stress in the development of peptic ulcer disease by increasing the amount of acid produced in the stomach. However, it has been shown that most ulcers in the upper GI tract (stomach/duodenum) are caused either by a specific type of bacteria known as Helicobacter pylori (Helicobacter pylori) or by non-steroidal anti-inflammatory medications (NSAIDS) such as ibuprofen. A person with Crohn’s disease also could develop inflammation and associated ulcers within the entire gastrointestinal (GI) tract, including the stomach and duodenum. The evidence that directly links stress and ulcers is not as clear. Laboratory studies (i.e. blood and stool tests) can be helpful to check for factors like ongoing inflammation and to evaluate for other things that may feel similar to ulcer-type pain (like inflammation in the pancreas or gallbladder). However, if your daughter already has established IBD, and recently experienced weight loss and other symptoms they may be consistent with an IBD flare, additional testing including endoscopy, additional blood work, and stool tests, may need to be done to better evaluate the intestinal tract. These concerns should be discussed with your primary gastroenterologist to formulate a plan to determine whether your daughter’s symptoms are directly related to her IBD or another medical issue separate from this.
ANSWERED BY:
Expert Image
Sandra C. Kim, MD
Associate Professor of Clinical Pediatrics
The Ohio State University College of Medicine
Pediatric Gastroenterology, Hepatology, and Nutrition
Nationwide Children’s Hospital
January 2013
Q: What are the chances of being misdiagnosed with Ulcerative Colitis (UC) and actually having Crohn's disease (CD)? I recently had my colon removed and had a J-pouch created. What are the symptoms to look out for if it is actually Crohn's?
A: When an individual has the “classic” changes associated with CD, including involvement of the GI tract outside of the colon, especially in a part of the small intestine closest to the colon known as the ileum, patchy areas of disease/inflammation known as “skip lesions” (normal, non-inflamed areas of intestine alternating with inflamed/diseased areas), or involvement of the perianal area, the diagnosis of CD is much more clear. Furthermore, there are certain changes when pathologists look under the microscope to look at the biopsies from colonoscopy which may be consistent with CD, and certain types of CD (structuring, penetrating – fistulas) which will be seen either by endoscopy, radiographic studies (i.e. MRI enterography, upper GI series with small bowel follow through), or at surgery. A patient typically is diagnosed with UC when there is continuous inflammation within the affected colon without involvement in the GI tract outside of the colon (by endoscopy, PillCam study, and radiographic studies), and biopsies show chronic inflammation without the microscopic findings associated with CD. In patients who have to undergo a colectomy (removal of the colon), the removed colon is sent to the pathologist to determine whether the patterns of inflammation or more consistent with UC versus Crohn’s colitis. Even with the rigorous and careful evaluation by your medical team before and after the colectomy, we find that a percentage of patients originally diagnosed with UC actually have CD. Follow-up care with your gastroenterologist and surgeon is important. If you have any symptoms of cramping, diarrhea, bleeding, weight loss, or pain with passing bowel movements, it is important to let them know. Having these type of symptoms does not mean you necessarily have CD rather than UC, but is something that should be investigated to make sure that there are no ongoing issues like pouchitis (inflammation of your J pouch), infection, or issues with the surgical sites.
ANSWERED BY:
Expert Image
Sandra C. Kim, MD
Associate Professor of Clinical Pediatrics
The Ohio State University College of Medicine
Pediatric Gastroenterology, Hepatology, and Nutrition
Nationwide Children’s Hospital
January 2013
Q: I have a ileostomy bag that was supposed to be reversed after six months, but never was (had surgery in 1998). The surgeons says that I can’t get the surgery to reverse the bag cause it’s been too long of time. Is that true?
A: The issue of whether an ileostomy can be reversed is based on several features that are unique to each individual patient. These issues include the initial reason for the ileostomy and the condition of the bowel that has been unused. If the ileostomy was created because the unused bowel was diseased, the ileostomy can only be reversed if the previously diseased bowel is removed and the remaining unused bowel is healthy and functional. Alternatively, if the ileostomy was created to protect a surgical site created in previously non-diseased bowel, the ileostomy can be reversed if the remaining unused bowel is healthy and functional. In either situation, recovery from reversal of the ileostomy may be more difficult and prolonged if the ileostomy has been in place for a long period of time.
ANSWERED BY:
Expert Image
Scott A. Strong, MD
Northwestern Medicine, Chief, Division of Surgery-Gastrointestinal and Endocrine
December 2012
Q: I have Crohn's and am almost always extremely dehydrated - eyes so dry I can't blink, finger tips puckery, mouth dry no matter how much water I drink. Is this from Crohn's? What should I do?
A: Dehydration can be caused by a number of disorders and can also be associated with electrolyte imbalances. We lose water through many routes including moisture in our breath as well as water in our stool, sweat, and urine. It is important to maintain an appropriate intake of fluids such that you urinate at least 4-6 times each day. You can also look at the color of your urine. If your urine is a light yellow to clear, this can indicate you are adequately hydrated. Some patients with Crohn’s disease suffer from watery diarrhea that diminishes their water and electrolytes. These persons should work with their physicians to manage the diarrhea, but they should also replenish their losses by drinking sports drinks that contain both water and vital electrolytes such as sodium and potassium.
ANSWERED BY:
Expert Image
Scott A. Strong, MD
Northwestern Medicine, Chief, Division of Surgery-Gastrointestinal and Endocrine
December 2012
Q: When my Crohn's disease is flaring, I shake, or vibrate so bad it wakes me up. I'm not diabetic. Is this from Crohn's?
A: Chills or rigors are episodes of shaking or shivering that can be associated with a fever. It is an automatic response that occurs for a variety of reasons, and is often a sign that suggests inflammation or infection such as that seen with active Crohn’s disease. Shivering involuntarily occurs when someone feels cold and acts to raise the body’s temperature. The trigger point at which this response occurs is set in the brain and has been described as an internal thermostat. With inflammation or infection, chemicals called pyrogens reset the trigger temperature. This in turn tricks the body into feeling cold and shaking occurs to raise the body’s temperature.
ANSWERED BY:
Expert Image
Scott A. Strong, MD
Northwestern Medicine, Chief, Division of Surgery-Gastrointestinal and Endocrine
December 2012
Q: I was diagnosed with Crohn's about a year ago and by most markers/symptoms I'm in remission yet continue to have periods of fatigue that I didn't have prior to my diagnosis. Is it common/normal to struggle with tiredness even though in every other way I'm fully in remission?
A: Fatigue is a symptom commonly seen in patients with Crohn's disease symptom and can exist for several reasons. While a flare of Crohn’s disease can cause someone to feel fatigued as his or her body is fighting inflammation, fatigue can also occur when the disease is in remission for other reasons such as anemia, depression, or medications. Anemia linked to the decreased production or gradual loss of red blood cells is commonly seen in patients with Crohn’s disease and can lead to fatigue. Chronic diseases such as Crohn’s disease are also often accompanied by emotions such as sadness or depression, and these disorders can cause fatigue. Lastly, fatigue can be a side effect associated with certain medications used to treat Crohn’s disease such as methotrexate, sulfasalazine, and steroids. Any feelings of fatigue should be discussed with a physician so he or she can look for the cause and recommend appropriate treatment. It is also suggested that patients with fatigue eat a healthy diet, exercise on a regular basis, and get an appropriate amount of sleep each night.
ANSWERED BY:
Expert Image
Scott A. Strong, MD
Northwestern Medicine, Chief, Division of Surgery-Gastrointestinal and Endocrine
December 2012
Q: What is cause and treatment for black stool?
A: Black stools can occur for a variety of reasons in patients with Crohn’s disease and appropriate treatment depends upon the cause. Certain medications such as iron and bismuth or particular foods that are blue, black, or green colored can also cause black stools. More importantly, black stools can occur because of slow bleeding from inflamed bowel lining; the red blood turns the stool black as bacteria in the stool interact with the blood. The source of bleeding is usually located in the stomach, small intestine, or right colon. Bleeding closer to the rectum or anus more commonly causes the stool to be red instead of black. It is important to discriminate between black stools caused by medications and foods versus bleeding from the bowel wall. This symptom, especially if it is new in onset and persistent, should be reported to a physician so that proper evaluation and treatment can be initiated.
ANSWERED BY:
Expert Image
Scott A. Strong, MD
Northwestern Medicine, Chief, Division of Surgery-Gastrointestinal and Endocrine
December 2012
Q: What is the best way to diagnose an adhesion in the small bowel? Should you use small bowel X-Ray series, CT Scan, MRI, and/or colonoscopy?
A: Small bowel adhesions are commonly seen in anyone who has undergone prior abdominal surgery, but adhesions cause difficulties only in a minority of patients. When problems do arise, they are typified by bouts of cramping pain, nausea, abdominal distention, and a change in bowel habits. Patients with Crohn’s disease can experience similar complaints when active disease affects the small intestine. Colonoscopy cannot generally identify small intestine adhesions because the procedure inspects only the inside and not the outside of the large bowel. Imaging studies such as MR enterography and CT enterography are usually more accurate than a small bowel series in their evaluation of the small intestine. However, none of these tests can easily see adhesions. Instead, they identify the consequences of these adhesions such as an abrupt angling or abnormal dilation of the involved bowel. One benefit of MR enterography over the other modalities is that no radiation exposure is required for the test.
ANSWERED BY:
Expert Image
Scott A. Strong, MD
Northwestern Medicine, Chief, Division of Surgery-Gastrointestinal and Endocrine
December 2012
Q: What is ulcerative enterocolitis and what part of the small and large intestine is involved? Is it more extensive or serious than pancolitis?
A: The inflammation associated with ulcerative colitis typically begins in the last part of the large intestine and then spreads up the bowel to sometimes affect the entire colon; this complete or near-complete involvement of the large intestine is called pan-colitis. Ulcerative colitis does not usually impact the small intestine unless it is limited to the last few inches in a condition called backwash ileitis. More extensive inflammation of the small intestine is called enteritis and it is not seen in patients with ulcerative colitis unless they have another disorder such as an infection superimposed on their existing ulcerative colitis. On the other hand, patients with Crohn’s disease can demonstrate inflammation of both the small and large intestine and this is referred to as enterocolitis.
ANSWERED BY:
Expert Image
Scott A. Strong, MD
Northwestern Medicine, Chief, Division of Surgery-Gastrointestinal and Endocrine
December 2012
Q: Should recurring C Diff in a child be a cause for concern? Say recurring 3 times in 2 months and after taking antibiotics?
A: Clostridium difficile is a bacteria that can cause inflammation and diarrhea in pediatric or adult patients without or with inflammatory bowel disease. Although proper studies are still lacking, some evidence suggests that people with inflammatory bowel disease are at greater risk for infection with Clostridium difficile than those without disease. The initial treatment of Clostridium difficile in children can fail more than one-half of the time, regardless of the treatment. This failure might occur because the bacteria is resistant to standard therapy or the patient is a carrier of the bacteria. Carriers can be asymptomatic for months without treatment of the bacteria, but it is unclear whether they will remain so if immunomodulator or biologic agent therapy is initiated for the inflammatory bowel disease.
ANSWERED BY:
Expert Image
Scott A. Strong, MD
Northwestern Medicine, Chief, Division of Surgery-Gastrointestinal and Endocrine
December 2012
Q: My daughter has Crohn's disease and she won't have a bowel movement for a couple of days and then when she does it is very painful and hard to get out. The stool is soft in consistency and is sometimes flat. We have tried laxatives and stool softeners but they just seem to make her go more often, but still painful and difficult to get out. She had normal bms after an increased dose of infliximab, but that only lasted 2 1/2 weeks (tests show no antibodies to the biologic). What can we try?
A: Crohn’s disease can affect any portion of the intestine from the roof of the mouth to the skin around the bottom, which is also known as the anus. Difficult or painful bowel motions can be caused by disease-related disorders such as narrowing, fissures, or ulcers of the anus. Infliximab can be beneficial in treating some patients with disease of this area. Any patient with these symptoms should generally be thoroughly examined and this examination must frequently occur in the operating room because it is too uncomfortable to perform in another setting. Further treatment would be based upon the findings of this examination.
ANSWERED BY:
Expert Image
Scott A. Strong, MD
Northwestern Medicine, Chief, Division of Surgery-Gastrointestinal and Endocrine
December 2012
Q: I have been on adalimumab for 2 years with great success. During this time I have gained about 30 lbs, been diagnosed with high blood pressure, and high triglycerides. Are these side effects of the adalimumab?
A: Adalimumab has been extensively used for a variety of conditions and its side effects are fairly well described. Comparing patients receiving adalimumab to those not getting adalimumab, high blood pressure occurred in 5% of people receiving the medication and 3% of the others. High lipids were seen in 7% of patients treated with adalimumab and 5% of those not using the medication. Excessive weight gain is not typically seen as a direct result of the drug.
ANSWERED BY:
Expert Image
Scott A. Strong, MD
Northwestern Medicine, Chief, Division of Surgery-Gastrointestinal and Endocrine
December 2012
Q: I am 64 years old and have had Crohn’s/Colitis for 40 years. I have had a flare and am now taking 6MP with 5 mg prednisone. I feel that I am stable. Are there long term effect of continued use of either the 6MP or the 5 MG of prednisone?
A: Azathioprine and 6-mercaptopurine (6-MP) are immunomodulators that are chemically similar and generally used to maintain remission in Crohn's disease as well as ulcerative colitis. Both medications have a slow onset of action (3-6 months for full effect). Reported side effects associated with their usage include diarrhea, headache, nausea, and vomiting. Exchanging the drugs can occasionally reduce some of these reactions. Fever, joint pain, liver inflammation, mouth sores, and skin rash are unlikely to be affected by switching the medications. Less common side effects include inflammation of the pancreas, also known as pancreatitis, and bone marrow suppression that may increase the risk of infection or serious bleeding. Because of these effects, blood tests should be frequently performed to measure the impact of these drugs on the bone marrow, kidneys, and liver. Some reports have described an increased risk of lymphoma, which is a type of cancer affecting the lymph glands. However, other research has shown that for most people the extra risk is small and outweighed by the potential benefits gained from treatment. Corticosteroids similar to prednisone are naturally present in the body, but the higher than normal dosages commonly needed to control inflammation can produce undesired effects. These side effects usually disappear when the medication is reduced to normal dosage levels (Prednisone 5 mg daily) or discontinued. However, the impact of long-term steroid usage is sometimes irreversible and these changes include cataracts, diabetes, easy bruising, and glaucoma. Furthermore, the body’s natural ability to produce hydrocortisone might fail to recover when the medication is stopped after many months or years of steroid treatment.
ANSWERED BY:
Expert Image
Scott A. Strong, MD
Northwestern Medicine, Chief, Division of Surgery-Gastrointestinal and Endocrine
December 2012
Q: I was diagnosed with Crohn’s just a few months ago. I took prednisone first then mesalamine, but am still experiencing symptoms. The doctor now wants to move me to biologics, but I want to move more slowly and first try increasing the dosage of the mesalamine. If that doesn't work, what would the next step be?
A: Patients with Crohn’s disease can be managed with multiple classes of medications including antibiotics, aminosalicylates (such as mesalamine), corticosteroids (such as prednisone), immunomodulators, and biologic agents. With the exception of corticosteroids, most of these medications can be prescribed on a long-term basis. Some clinicians prefer to start patients on the most mild of medications and escalate the potency of treatment only if the disease fails to respond to therapy. Others begin with the strongest drugs and then transition to lesser medications when the disease has been adequately controlled. If your disease was initially managed by a corticosteroid, but you relapsed while on an aminosalicylate, you would be a candidate for corticosteroids or biologic agents. Immunomodulators would be likely used in combination with the corticosteroids so you could be eventually weaned off the steroids and continued on the immunomodulators in order to maintain the steroid-induced remission. Disease remission achieved with biologic agents can be maintained with long-term biologic agent usage or you can be transitioned to less potent medications for long-term therapy.
ANSWERED BY:
Expert Image
Scott A. Strong, MD
Northwestern Medicine, Chief, Division of Surgery-Gastrointestinal and Endocrine
September 2012
Q: I have Crohn's and the last couple of weeks I have been using the bathroom more than 15 times a day, and have hardly eaten anything. I have not lost any weight, and all my blood work has come back normal. How is that possible with the lack of food and the constant diarrhea?
A: There are a number of possibilities. Crohn’s disease may be active despite normal blood tests. Some testing may be necessary to determine if the Crohn’s disease is active. Infections can also cause diarrhea. Testing may need to be done in this regard, particularly stool tests. Medications may also cause diarrhea. Have you started any new medications? Have there been any dietary changes? It will also help your doctor to know what you bowel movement frequency was before this worsening. In summary, there are a number of possibilities that your doctor may need to consider.
ANSWERED BY:
Expert Image
Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
September 2012
Q: I was diagnosed more than 10 years ago and have ulcerative proctitis. I find I don't know when it is appropriate to go to the emergency room. What symptoms are of concern? When should I get emergency care for?
A: Generally, proctitis should not cause symptoms that require emergency room evaluation. Small volume bleeding from the rectum and urgent bowel movements can usually be evaluated electively at your doctor’s office. If you have large amounts of bleeding, particularly if you feel lightheaded, or if severe abdominal pain occurs - this is an indication that something different from the proctitis is happening and going to the emergency room is appropriate. If you are not sure, call your doctor’s office or clinic.
ANSWERED BY:
Expert Image
Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
September 2012
Q: How common is the use of methotrexate combined with infliximab to treat children? My nine year old just had small bowel resection due to a stricture - previously was on 6mp. Do studies show that methotrexate significantly decreases the chance of developing the antibodies to infliximab? Does the benefit outweigh risk?
A: Methotrexate is not used commonly to treat children with Crohn’s. 6MP is much more commonly used. Methotrexate does decrease the formation of antibodies to infliximab, probably increasing the effectiveness of infliximab. The benefits versus risk depend on the individual situation and would be best discussed with a pediatric gastroenterologist.
ANSWERED BY:
Expert Image
Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
September 2012
Q: Is it okay to continue medical treatment of IBD during pregnancy?
A: Yes, most treatments can and often should be continued during pregnancy. This includes mesalamine (5-ASA), azathioprine/6MP and biologics such as infliximab, adalimumab and certolizumab. Most IBD doctors feel the risk of IBD flare during pregnancy, if medication is stopped, is worse than the risk of the medications themselves. There are, of course, some medications that should not be taken during pregnancy. Discuss your treatment with both your IBD physician and your obstetrician. They should communicate with each other if there is disagreement. There is also a discussion of pregnancy issues at CCFA.org.
ANSWERED BY:
Expert Image
Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
September 2012
Q: I'm a young adult that has been living with UC for 15 years. School is starting soon-and I'll be running 14+ hour days during the week. Do you have suggestions for food plans/diets? I've been trying to do a low-residue diet.
A: Stick with the diet that works for you. If you generally do a low residue diet then that should probably be continued. Eat has healthy as possible and don’t forget time for rest. Life does not necessarily become less busy when you are done with school. Don’t forget to take a multivitamin, calcium and vitamin D. Take a look at some of the diet tips at CCFA.org.
ANSWERED BY:
Expert Image
Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
September 2012
Q: My 20 year old son was diagnosed with Crohn’s about 2 months ago. He was prescribed budesonide which he started 2 weeks ago. He has had cold chills since he has been taking the budesonide and had one episode where his hand and inner calves started tingling. He also said that his lips felt funny. It only lasted about five minutes. Is this something we should worry about or are these side effects of budesonide?
A: These do not sound like symptoms that are definitely from budesonide, but everyone has different reactions to medication. If these are side effects from the budesonide, the side effects should go away when the medication is stopped. Budesonide is a steroid, but unlike prednisone (another stronger steroid) it is rapidly eliminated from the body so its effects on the body are very low (although there is some effect). Even though the side effects of budesonide on the body are much lower that with prednisone, it is a steroid – so it is often not used long term. Your son should discuss the long term plan with his doctor. A discussion of steroids, and steroid side effects, can be found in the medication section at CCFA.org.
ANSWERED BY:
Expert Image
Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
September 2012
Q: I have been wearing a pouch for 16 years. I have had pain in my lower abdomen for about 6 months. I had a colonoscopy last week and the surgeon found that much of my colon and rectum have been sealed or obstructed over the years, which is what is causing my pain. Will I have to get my active colon and rectum removed or are there other options?
A: This is the sort of situation which has issues specific to the individual patient so there is really not any general advice that can be given. Discuss your symptoms and questions with your surgeon.
ANSWERED BY:
Expert Image
Robert P. McCabe, MD
Minnesota Gastroenterology, P.A.
June 2012
Q: I had a resection in February and was told I have Crohn's. I'm taking 1.875 g a day of mesalamine for remission. My question is why am I having pressure in the center of my chest? I know it is not heart related. I have taken esomeprazole magnesium and other meds with no relief. What can be the cause? Is it from the Crohn's? I am also having back pain in the middle of my back all the time.
A: You need to address this further directly with your doctor. In general, mesalamine is ineffective for the treatment of Crohn’s disease and for prevention of post-operative recurrence so better therapy may be needed. Patients should get repeat colonoscopy around 6 months after surgery to see if the Crohn’s disease has come back and increase treatment based on that. Complications from surgery such as abscess or scarring can cause back pain. Discomfort can also be from heartburn, recurrence of Crohn’s disease and bacterial overgrowth.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2012
Q: What are diseases other than IBD and intestinal TB that cause chronic bowel ulcers? My 30 year old son has had ileum ulcers since 2008, which have spread to other parts of the digestive tract causing diarrhea and no appetite. He has been treated by 3 GI specialists since 2010 and has taken all medication for Crohn’s and TB, but got worse.
A: Ileal ulceration is a finding seen on endoscopic evaluation (such as colonoscopy or enteroscopy). Stool studies, biopsies of the abnormal region, and blood testing may be needed to determine the cause. There are several potential causes which include Crohn’s and tuberculosis (TB), but also include several other diseases. These diseases include, but are not limited to infections (parasites, bacteria, viruses such as cytomegalovirus in immunocompromised individuals), diseases of immune-dysregulation (eosinophilic gastroenteritis; vasculitis such as lupus and polyarteritis nodoum; vascular ischemia, and tumors (such as lymphoma)). Following up with a GI specialist to understand which diseases have been evaluated for is reasonable. A small percentage of Crohn’s patients are also non-responsive to medical therapy and may require surgery.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2012
Q: Is there any evidence that anabolic steroids can cause and/or inflame ulcerative colitis?
A: There is no data to state whether or not anabolic steroids cause or worsen ulcerative colitis.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2012
Q: I was diagnosed with mild Crohn's (indeterminate) 10 years ago during a hospital stay. After treatment with mesalamine (on two different occasions), the off-on again symptoms lessened within about 2 years. I'm no longer taking meds, but have constant problems with bowel consistency. Could it be I was misdiagnosed? Without currently experiencing symptoms, can any test definitively diagnose IBD?
A: A diagnosis of IBD can be made definitively, but patients may not have all the findings at the time of presentation to make a definitive diagnosis. Findings on testing may evolve over time and may require repeat testing to make a diagnosis of IBD. The findings on endoscopic evaluation (such as colonoscopy/endoscopy) along with the findings on biopsies are the gold standard method for diagnosis. When it is difficult to know whether someone has Crohn’s disease or ulcerative colitis, there are also blood tests that can help differentiate the diseases. Clinical remission does not always equal endoscopic remission, so it may be worthwhile repeating testing if the diagnosis was not certain from the start. Additionally, having Crohn’s or ulcerative colitis for more than 8-10 years may increase the risk for colon cancer and colonoscopy (with biopsies) is the recommended screening test.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2012
Q: What are my treatment options (types of medicines) for IBD?
A: The specific medical treatment options for a patient depend on the type and severity of inflammatory bowel disease. For mild/moderate disease severity, 5-aminosalicylates (5-ASA) are local anti-inflammatory medications which can be given orally or by rectum. When disease is moderate to severe immunosuppressants are used. Immunosuppressants used to treat ulcerative colitis or Crohn’s disease include corticosteroids (such as prednisone), 6-mercaptopurine or azathioprine (pro-drug of 6-mercaptopurine), methotrexate, and biologics (infliximab, adalimumab, certolizumab, natalizumab). Corticosteroids are used for flare-ups of IBD and as a bridge until non-steroid immunosuppressants work. Which medical therapy is used also depends on whether one has Crohn’s disease or ulcerative colitis. The medical therapy that is right for you would need to be discussed with your doctor. Additional information about these medical therapies is available on the CCFA website.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2012
Q: Is there any information on the effect of over-the-counter fitness supplements on ulcerative colitis? Is there a resource I can go to for more information on these supplements?
A: The real issue is what are the ingredients of the fitness supplement? If it includes lactose or non-digestible sugars such as sorbitol or mannitol, it may make diarrhea and abdominal discomfort symptoms worse. Too much of certain vitamins and minerals may lead to toxicity, such as vitamin A and iron but this may not directly affect ulcerative colitis. If you need to obtain more specific information about a supplement than what the label provides, then you will need to contact the manufacturer of that specific product. Contact information for the manufacturer may be found directly on the label. The FDA does not collect information about all supplements since FDA approval is not needed for the supplements to be sold. By law, dietary supplements need to be safe and data is collected by the FDA on supplements with adverse events reported.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2012
Q: I have a simple perianal fistula that is responding well to adalimumab. However, I believe it has been causing constant headaches and sinusitis for three months. I have rhinitis, so it could have pushed things to a tipping point. I skipped a shot and the issued improved somewhat, but after about 4 weeks the fistula fired up. I re-commenced and within a few days the fistula improved. Are there less sinusitis problems with other biologics?
A: All the anti-TNF therapies (adalimumab, infliximab, certolizumab) used to treat inflammatory bowel disease can increase risk for sinusitis. You may need to see your primary care or an Ear/Nose/Throat specialist to discuss methods of treating and preventing sinusitis. Another option would be to treat you with a different class of immunosuppressants, such as immunomodulators if it is feasible in your case.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2012
Q: I am having infliximab injections. The 5th one is next month. I have lost almost all of my hair and my scalp and arms are full of sores. Is this a side effect of the medicine? Will the sores go away and will the hair grow back?
A: Infliximab may induce a rash (such as folliculitis and psoriasis) and there are case reports of infliximab inducing hair loss by a psoriasis like syndrome. Some patients with psoriatic like alopecia (hair loss) and rash have responded to topical medications without stopping infliximab. You should be evaluated by a dermatologist to determine the reason for the rash and hair loss in conjunction with your gastroenterologist.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2012
Q: I am currently taking certolizumab shots and was previously taking adalimumab. Both seem to have a side effect of an uncomfortable and dry mouth, not tasting, and poor appetite. Is this a common side effect of these medications?
A: This is not a common direct side effect of anti-TNF therapies (certolizumab, adalimumab, and infliximab). Although, you may need to be evaluated for infections that anti-TNF therapies may predispose you to, such as thrush (yeast infection of the mouth).
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2012
Q: I was weaned off of a cycle of prednisone about two weeks ago and have had no flares for about a month or so. This past weekend I began flaring and am now in a full on flare. Is there something more I can take or do other than my 4 prescribed mesalamine? Or recommended meals/drinks that will ease the pain? I just feel that there has to be something else that will help me other than prednisone.
A: There are several non-steroid medications aside from mesalamine. Which medications to consider depend on whether you have Crohn’s or ulcerative colitis. The non-steroid medications take time to work and will usually require bridging you to these therapies with steroids. During times of flare ups, low fiber and lactose free diets are recommended to reduce symptoms. Also recommend during flares: avoidance of aspirin and ibuprofen based products and, if you have Crohn’s disease, smoking cessation.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2012
Q: Is there a risk in having plastic surgery if you have been on immune suppressants or biologics? I have not had infliximab in 4 months, I stopped taking azathioprine three months ago, and I also took steroids but have tapered off. Is it safe to have any surgery after all this medication?
A: The risk of anti-TNF therapies (such as infliximab, adalimumab and certolizumab), 6-mercaptopurine or its prodrug-azathioprine, and corticosteroids have been assessed for postoperative complications in several studies. The risk of postoperative complications with anti-TNF therapy is not clearly increased based on these studies. The same is true for 6-mercaptopurine/azathioprine. Whereas for corticosteroids, if at the time of surgery it is greater than 20mg a day it may increase risk for complications. It takes at least 4 half-lives for minimal drug concentrations to remain in the blood stream. Based on a half-life of 7-9 days with infliximab, infliximab exposure 4 months ago should not affect surgery. The half life of azathioprine’s active metabolite (6TGN) is between 3-13 days, so stopping azathioprine 3 months ago should not have an effect. The half of prednisone is 3-4 hours.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2012
Q: I've read that people with ulcerative colitis should be on a gluten free diet. Is this true?
A: Gluten is not a known stimulant of ulcerative colitis or Crohn’s disease. Some individuals have gluten intolerance, which causes gastrointestinal symptoms such as bloating and abdominal discomfort. So if a patient also has ulcerative colitis the gluten intolerance may add to symptoms already present.
ANSWERED BY:
Expert Image
Faten N. Aberra, MD, MSCE
Assistant Professor of Medicine
Division of Gastroenterology
Perelman School of Medicine at the University of Pennsylvania
Hospital of the University of Pennsylvania
May 2012
Q: My primary care doctor has recommended that I use a hormonal form of birth control--either a low-dose estrogen pill or the levonorgestrel-releasing intrauterine device (IUD). This form of IUD is not recommended for people with suppressed immune systems (I am on azathioprine and infliximab, and tapering off of prednisone). However, a recent CDC publication gave the IUD a safer rating than the pill for women with IBD (http://1.usa.gov/bQnOfb). Which form of birth control is safer for me to take?
A: The difference noted by the CDC MMWR publication refers to the risk of blood clots with the use of contraceptives in inflammatory bowel disease patients. Moderate to severely active inflammatory bowel disease increases the risk for developing blood clots. Contraceptives with higher hormonal levels (in the pill, patch, or ring) also are associated with an increase risk for blood clots. In theory, combining oral contraceptives and moderate-severe inflammatory bowel disease may increase the risk even more for developing blood clots. There is no published study as of yet that answers this question. If your disease is not very active, then a pill still may be a reasonable option. You would still need to discuss with your primary care provider or gynecologist if there are other reasons specific to your medical history that would help guide which type of contraceptive to use.
ANSWERED BY:
Expert Image
Experts 2010-2011, MD, etc.
n/a
March 2012
Q: Why do I have so many body aches and pain that often times will not permit me to walk or stand straight up? I seem to be falling a lot as well.
A: There are a number of things that could be going on to cause your symptoms and you should discuss this with your doctor. Sometimes IBD can be associated with arthritis and this would be at the top of my concerns. If that is the case your doctor may want to send you to see an arthritis specialist and/or choose medications for your IBD that will also help treat arthritis. Arthritis associated with IBD (called spondyloarthropathy) can affect various joints, including the back and pelvis joints and/or the large or small joints of your extremities.
ANSWERED BY:
Expert Image
Experts 2010-2011, MD, etc.
n/a
March 2012
Q: In researching the benefits of aloe supplements, I have found contradicting information. Can you explain what the potential benefits and/or risks are?
A: There is no good data to date to show that aloe benefits colitis. Moreover, there are many forms of aloe and some can even be harmful to the colon. Furthermore, it is difficult to know which of these forms you are getting when you buy it. Studies are ongoing in animals, but at this point it is not a recommended treatment for colitis.
ANSWERED BY:
Expert Image
Experts 2010-2011, MD, etc.
n/a
March 2012
Q: My daughter has Crohn’s disease and recently began taking colesevelam and immediately started having blood in stool. Is this a side effect of the medicine?
A: Colesevelam is a medicine used to reduce cholesterol, but can also be used sometimes to treat diarrhea. Blood in the stool is not a commonly reported side effect of this medication. First thing, she should see her gastroenterologist to discuss the symptoms and make sure this is not related to active Crohn’s disease.
ANSWERED BY:
Expert Image
Experts 2010-2011, MD, etc.
n/a
March 2012
Q: I completed my first half-marathon in December with Team Challenge and would really like to do another. What is recommended in terms of nutrition supplements during a long run for someone with Crohn's? It seems that even with the gels and chews available, I'm just not able to keep my energy up.
A: For long distance running with Crohn’s, the most important part is to be sure you are keeping up with your hydration, both before race day and on race day. Every individual’s needs are different and dependent on their fluid losses (which includes most importantly sweat and stools (diarrhea)). An average recommendation (for people without bowel disease) is to drink 3-6oz every 15-20 minutes during the run (about 1 cup of water every other mile). For a starting point, try to estimate your sweat rate (weigh before and after a good hour run and then convert this to ounces/hour of loss). You will need to be replacing those losses plus adding more for any diarrhea and more if it is hotter. In regards to carb intake (gels and chews), be sure you take something pre-race, and then at least 45 minutes into the run, to help prevent losing steam early on. You will have to adjust this to your own body and may need to take more of these then other people given your Crohn’s. Try out various formulations to see what works best for you. Make a hydration and nutrition plan for race day beforehand and talk it over with your doctor to further tailor it to the specifics of your disease.
ANSWERED BY:
Expert Image
Experts 2010-2011, MD, etc.
n/a
March 2012
Q: I am running my first half marathon in less than 2 weeks. I’ve been training since November, but I’m having lots of issues and some days it’s just impossible to run - not because of the pain, but because it’s just not in me to run that day. I know that most people are supposed to carb load before a race, but what should someone with Crohn’s do to prepare diet wise?
A: First things first, in regards to poor energy, be sure to talk with your doctor to ensure that your Crohn’s disease is adequately treated. Next, nutrition during training for long distance running is important both for people with and without Crohn’s disease. You should be eating a healthy, balanced diet in addition to being sure you are staying adequately hydrated. Carbs are important in all your meals to provide the energy stores you need for running and protein is especially important post-race to help repair your body. On race days, you can try to eat something light (like a banana or a bagel or something you know you digest well) before the run. It is also important with long runs to consume snacks during the run. There are a wide variety of energy supplements (carbs) that come as gels, chews, or bars that you can take during the run. You want to be sure to consume these early on in the run, and then periodically throughout (make sure you don’t wait too long and lose steam). Many recommend these every 30-45 minutes during the run. You will have to try various products and see what works best for you. And again, being sure you are adequately hydrated is a very important part of this as well.
ANSWERED BY:
Expert Image
Experts 2010-2011, MD, etc.
n/a
March 2012
Q: I have been on adalimumab since 2009 and it has been working to keep my Crohn's under control, but I have very bad perianal disease which the adalimumab does not seem to reach. My doctor wants me to start taking adalimumab every week, but I was wondering if there were any other options to help with the perianal disease.
A: Medical treatments with potential efficacy for treating perianal disease include antibiotics, azathioprine and 6MP, biologics like infliximab and adalimumab, and cyclosporine and tacrolimus. Depending on the specifics of your disease, surgical treatments are a consideration as well, and you should discuss this with your doctor.
ANSWERED BY:
Expert Image
Experts 2010-2011, MD, etc.
n/a
March 2012
Q: My son was diagnosed in 2009 with Crohn's disease and is now 14 yrs. old. He is currently taking a biologic. Has there been any research as to the chemical reaction of the disease and/or biologics and depression? I realize having a life long illness takes its toll, but I am wondering about the chemical reaction of having an inflammatory disease.
A: There is no data that I am aware of that has linked the mechanisms (or “chemistry”) of inflammatory bowel disease to causing depression. However, depression is very commonly seen in patients with IBD given the lifelong illness it causes. CCFA has many resources available regarding coping and emotional factors. Be sure to contact our Information Resource Center (888.694.8872) to learn more and check out our educational brochures and fact sheets at http://www.ccfa.org/info/brochures.
ANSWERED BY:
Expert Image
Experts 2010-2011, MD, etc.
n/a
March 2012
Q: Is there any research on the safety of taking growth hormones while on a biologic?
A: There have been no controlled studies looking at the safety of taking human growth hormone while also receiving a biologic.
ANSWERED BY:
Expert Image
Experts 2010-2011, MD, etc.
n/a
March 2012
Q: I am currently taking mesalamine for my Crohn's. My husband and I decided to have children and I am currently 5 weeks pregnant. My gastroenterologist told me that it was safe to take my meds while pregnant but when I met with my gynecologist she said that it is not considered safe. What do research studies on this find?
A: In general, mesalamines are considered safe during pregnancy. With that said, olsalazine and asacol contain dibutyl pthalatae (DBP) in the coating. Neither of these medications has been associated with birth defects, but DBP has been associated with congenital anomalies in animals. With that said, it is even more important to consider the effects of a flare if these medications are stopped. Active disease during pregnancy can increase the risks of pre-term delivery and low birth weight of the infant. It may also impair the ability of the mother to care for the infant once it is born. Plus even stronger medicines may be required to get mom back under control if she flares.
ANSWERED BY:
Expert Image
Experts 2010-2011, MD, etc.
n/a
March 2012
Q: My 2 1/2 yr old son was just diagnosed with "ulcerative chronic active colitis" but they said it is not being diagnosed as "ulcerative colitis." What is the difference?
A: There is no difference in ulcerative chronic active colitis and ulcerative colitis. They imply the same thing.
ANSWERED BY:
Expert Image
Experts 2010-2011, MD, etc.
n/a
February 2012
Q: My 16 year old daughter was diagnosed 2.5 years ago with UC. When treating a sore throat/ear infection what antibiotics are safe as to not upset the gut?
A: All antibiotics can upset the gastrointestinal system, in part by changing the gut’s flora, the organisms that reside in the gut. For this reason, antibiotics should be used judiciously, such as when a treating physician is reasonably certain that there is a bacterial infection, as opposed to a viral infection.
ANSWERED BY:
Expert Image
Experts 2010-2011, MD, etc.
n/a
February 2012
Q: Is IBD something you're born with or can you develop it later in life? I recently went to the hospital for severe abdominal pain and diarrhea that lasted 3 weeks. I was dehydrated, but the pain and cramps have persisted for the last 3 months. It bothers me more at night. The only symptom I haven't had is blood in my stool. Should I talk to a GI?
A: Crohn’s disease and ulcerative colitis (collectively IBD) are acquired in life, though their development is under the influence of genetic, as well as environmental factors. Most patients who develop IBD during their lives do so in their late childhood and early adult years, though it may become apparent and become diagnosed any time during life. With your symptoms, I think it would be a good time to schedule an appointment with a gastroenterologist. Your symptoms may or may not be a function of Crohn’s disease or ulcerative colitis.
ANSWERED BY:
Expert Image
Experts 2010-2011, MD, etc.
n/a
February 2012
Q: I recently visited a new doctor and he told me that smoking will be beneficial. Are there any studies showing that smoking will be beneficial for patients with Ulcerative colitis?
A: Beneficial is probably too strong a word, and no one has formally studied the direct effect of smoking on the course of ulcerative colitis, though a questionnaire-based study in the Netherlands suggested the smokers who had ulcerative colitis and continued had fewer hospitalizations than those who quit. Nevertheless, the net effect of tobacco smoke and its association with heart disease, stroke, chronic lung disease and numerous cancers is too great to ignore, and smokers should quit and be treated aggressively for their ulcerative colitis.
ANSWERED BY:
Expert Image
Experts 2010-2011, MD, etc.
n/a
February 2012
Q: I was diagnosed 5.5 months ago. I started off with prednisone and two months ago began azathioprine and was tapered off prednisone. I'm having pain in different parts of my abdomen and it varies from mild to medium. Is this due to no more steroids? Will it settle down or do I need some other medication?
A: Not everyone responds to azathioprine and there is a chance that what you’re feeling is Crohn’s, though there is a possibility that it is a function of prednisone. It is best to check this out with your gastroenterologist.
ANSWERED BY:
Expert Image
Experts 2010-2011, MD, etc.
n/a
February 2012
Q: I was put on prednisone a couple of days ago for my Crohn’s disease; my face is very flush--is that a normal side effect?
A: There are a number of side effects to prednisone—and facial flushing is among them. This is likely a side effect you can push through, but it’s worth discussing it with your doctor. Many IBD experts do their best to minimize prednisone exposure, favoring medications such as thiopurines, methotrexate, and anti-TNF medicines such as infliximab, adalimumab, and certolizumabpegol.
ANSWERED BY:
Expert Image
Experts 2010-2011, MD, etc.
n/a
February 2012
Q: I was diagnosed with Crohn’s in 1998 and was recently diagnosed with perianal fistula confirmed via MRI. I did have a small bowel follow through, which showed no other fistulas and had a colonoscopy that showed no active Crohn’s. I am offered now to start a biologic. Does this seem like the best option or should I investigate others?
A: For persistent fistulas that are draining, the biologics are excellent medicines, but others have been demonstrated to close fistulas also, albeit in less well designed studies. These primarily include thiopurines (6-MP or azathioprine) and cyclosporine; an antibiotic, metronidazole, can dry out fistulas, but they don’t heal very well.
ANSWERED BY:
Expert Image
Experts 2010-2011, MD, etc.
n/a
February 2012
Q: I was 19 when I was first diagnosed with Crohn’s. I have had 2 resections. As time went on I was diagnosed with IBS and now I also have diverticulitis. How do I deal with diet? Crohn’s is low fiber and IBS and Diverticulitis is high fiber.
A: There is a rather obvious link between diet and gastrointestinal illnesses. Unfortunately, it is not a very well understood link at this point in time. What’s certain is that the “wrong” diet will not result in any prolonged negative effects. That being the case, you should feel free to experiment with low or high fiber diets, with the assistance of an expert, until you find the one that’s right for you. No matter the choice, you won’t harm your Crohn’s, IBS, or diverticulosis.
ANSWERED BY:
Expert Image
Experts 2010-2011, MD, etc.
n/a
February 2012
Q: My son is 14 yrs old and had his colon removed a couple weeks ago. What can I feed him to put some meat on his bones? He's 5ft 6in and only weighs 105lbs. The doctors tell him he needs to really concentrate on keeping hydrated so he drinks lots of water and Gatorade, but those things fill him up so he isn't hungry.
A: A diet high in protein calories is the best thing for him at this time. It would likely be advisable for him to meet with a nutritionist to get a detailed description of how to accomplish this, but all calories are good calories and high protein calories are best.
ANSWERED BY:
Expert Image
Experts 2010-2011, MD, etc.
n/a
February 2012
Q: I have Crohn's disease and also have back issues (herniated discs, tarlov cyst, spinal stenosis, etc), plus nerve damage. I am in the process of applying for SSD. How can I explain my inabilities?
A: The SSD application should allow for including information about functional limitations related to both your back and your gut. Supporting documentation from your doctors should help. CCFA has sample appeal letters that you or your health care provider can use. Visit the Community Resource Center (http://www.ccfacommunity.org/ResourceCenter.aspx) for more information.
ANSWERED BY:
Expert Image
Experts 2010-2011, MD, etc.
n/a
February 2012
Q: If my son has Mesalamine-Induced Acute Intolerance Syndrome, what is the next step for him to control his colitis? He is 16 and was diagnosed in Oct 2011 and has taken 4 mesalamine/day since. Recently he's complaining of a severe stomach ache and he has developed a rash on his face.What other options are there?
A: It is possible that he might do okay with rectally administered mesalamines. If he proves intolerant to these, then thiopurines and/or infliximab might be helpful.
ANSWERED BY:
Expert Image
Experts 2010-2011, MD, etc.
n/a
January 2012
Q: I have Crohn's disease. My husband and I want to start a family. Is it likely that our children will develop Crohn's disease?
A: Studies have shown that Crohn’s can run in families. If you have Crohn’s, the chances of one of your children developing Crohn’s are about 1 in 10. At this point, there is no genetic testing available to inform this estimate.
ANSWERED BY:
Expert Image
Experts 2010-2011, MD, etc.
n/a
December 2011
Q: I was diagnosed with ulcerative colitis in 1993 and have a family history of colon cancer. How often should I be getting a colonoscopy? How many years does colorectal cancer take to advance past the early more treatable stages that can be caught in a colonoscopy?
A: The risk of colon cancer in ulcerative colitis depends on multiple factors. Those with disease of the entire colon have a greater risk than those with disease limited to their left colon or rectum. The risk for cancer starts 10 years after the diagnosis, and we think that active inflammation also plays a role in increased risk. A family history of cancer would include first degree relatives under the age of 60 or multiple second degree relatives under the age of 50. You should speak with your gastroenterologist about your specific risk factors in regards to how often you personally need to have a colonoscopy. We believe that the cancer in ulcerative colitis is more aggressive, i.e. grows faster, than cancer that occurs outside the setting of ulcerative colitis, so having colonoscopy in the recommended time frame with attention to a good prep is important.
ANSWERED BY:
Expert Image
Experts 2010-2011, MD, etc.
n/a
December 2011
Q: Is it common to have dry eyes and/or roscia if you have Crohn’s disease?
A: There are several different other autoimmune conditions that one can get if you have Crohn’s disease. Dry eyes and rosacea are two of them. But these can also be side effects of medications.
ANSWERED BY:
Expert Image
Experts 2010-2011, MD, etc.
n/a
December 2011
Q: I’ve had proctosigmoiditis for 25 years and am on 4800mg of mesalamine. Six weeks ago I started having small amounts of mucus and blood in my morning bowel movements. Are small amounts of blood common?
A: Bleeding is a common symptom of active proctosigmoiditis but can also be from hemorrhoids or fissures. If you don’t have other symptoms of active disease, it would be important that that you have the source of the bleeding checked out as it is unlikely the proctosigmoiditis.
ANSWERED BY:
Expert Image
Experts 2010-2011, MD, etc.
n/a
December 2011
Q: I have had a pouch since 1997 because of UC surgery. For the last 3 years my pouchitis has become so chronic that we have tried all antibiotics (resistant now), probiotics and budesonide and now I am on prednisone. It seems that things continue to worsen. What can I do to retain my pouch?
A: It might be that the chronic pouchitis is really Crohn’s disease since you are requiring prednisone to treat it. You should talk with your health care provider about this possibility, as treatment for Crohn’s disease may restore the health of your pouch.
ANSWERED BY:
Expert Image
Experts 2010-2011, MD, etc.
n/a
December 2011
Q: What are strictures and obstructions and how do you know if you have one? Will they always be there until surgery is done or can they heal some with medicine and/or diet? Can you get tested for it and who should?
A: A stricture is a narrowing of the intestine that may or may not cause any symptoms. Strictures can be narrowing from active inflammation (sort of like when your eye can swell shut from pink eye) or from scar tissue. Narrowings can cause obstruction if food or stool is unable to freely pass through this point. Symptoms would include pain, nausea, vomiting and abdominal distention. If in the colon, a stricture can cause constipation. Treatment depends on if the stricture is inflammation or scar tissue, as there are no medications that treat built up scar tissue. Testing for strictures include x-rays and sometimes colonoscopy.
ANSWERED BY:
Expert Image
Experts 2010-2011, MD, etc.
n/a
December 2011
Q: I had a colonoscopy several months ago and had a severe infection in my colon and was treated for this. At my follow-up, I had to be hospitalized due to severe pain and had a CT done and was told had Crohn's. My GI doc still has doubts if it is Crohn's. What else could it be? I had ulcers and inflammation in colon/small intestine.
A: There are many things that can cause inflammation and ulcers in the colon, including infection, medications, Crohn’s disease, certain kinds of cancers, and damage from lack of blood flow. Biopsies from the colon often can differentiate between these different causes. If there is doubt, having more than one expert examine the biopsies can be helpful.
ANSWERED BY:
Expert Image
Experts 2010-2011, MD, etc.
n/a
December 2011
Q: I have left-sided Ulcerative Colitis. How long does it take to go into remission with biologics? I am on my third infliximab infusion and still have bleeding and pain. Should I ask my doctor to take other tests to determine the cause of this ongoing symptoms?
A: Everyone responds to therapy a little differently. We usually allow 8-12 weeks of infliximab therapy to determine if there has been a response or not. Doing a flexible sigmoidoscopy or colonoscopy can tell if the infliximab is making a difference or not.
ANSWERED BY:
Expert Image
Experts 2010-2011, MD, etc.
n/a
December 2011
Q: I'm recovering from j-pouch surgery, and am wondering what I can do for the incontinence I'm experiencing. It's been about 1 1/2 weeks.
A: Incontinence can occur for several weeks to months after a pouch surgery. The anal canal must get used to the new pouch. Medications like loperamide as well as fiber can help decrease the number of stools and help to thicken it up.
ANSWERED BY:
Expert Image
Experts 2010-2011, MD, etc.
n/a
December 2011
Q: Is it possible to have internal rectal scar tissue even though my biologic is "working" in preventing diarrhea from inflammation?
A: The body’s response to inflammation is to try to heal it by forming a scar. It is not uncommon in a patient with Crohn’s disease to develop scarring in the rectum or anal canal even when the rest of the colon is in remission and healed.
ANSWERED BY:
Expert Image
Experts 2010-2011, MD, etc.
n/a
December 2011
Q: I have not had a flare up or problem for over 6 years now and haven't been on any medication for 14 months. Can I donate plasma?
A: Yes, you should be eligible to donate plasma.
ANSWERED BY:
Expert Image
Experts 2010-2011, MD, etc.
n/a
December 2011
Q: I have painful gas daily. Can I take simethicone or beano for this?
A: Beano (the enzyme that helps break down the sugar found in many types of beans) literally only works on breaking down arabinose, which is the sugar in beans. If you do not eat beans, then Beano will not help you. Simethicone breaks up gas bubbles that are in the stomach, but if the gas has already reached your intestine, then simethicone will not help either. Simethicone however is certainly safe to take.
ANSWERED BY:
Expert Image
Experts 2010-2011, MD, etc.
n/a
December 2011
Q: I feel like my Crohn's is always worse in the fall and winter, but it sounded crazy to think that the seasons impact the disease. Then I read that there is a link between vitamin D deficiency and Crohn's Disease. Is there any validity to this claim?
A: There is very good literature to suggest that some patients note a strong correlation to the season so your observation is not crazy. We think that the lack of vitamin D in Crohn’s patients can contribute to ongoing inflammation and that treatment with vitamin D supplements to restore normal levels can help disease symptoms.
ANSWERED BY:
Expert Image
Experts 2010-2011, MD, etc.
n/a
December 2011
Q: I have Crohn's and polycystic kidney disease and am about to go on dialysis. I would prefer to go on peritoneal rather than hemodialysis, but my MDs and I are hesitant because of the need to invade the abdomen. Is there any medical evidence that Crohn's patients should avoid peritoneal dialysis? What do other Crohn's patients in this situation do?
A: Since Crohn’s disease affects all the layers of the bowel wall it is easier to form fistulas and develop abscesses. Crohn’s disease treatment also involves immunosuppressants. Any process that introduces foreign material into the abdomen can serve as a stimulus for infection or possibly a fistula and peritoneal dialysis is likely to be much riskier than hemodialysis.
ANSWERED BY:
Expert Image
Experts 2010-2011, MD, etc.
n/a
November 2011
Q: My son underwent a successful total colectomy 10 yrs ago for the treatment of colitis. He has become obese and unable to eat many of the typically recommended foods (high fiber veggies, raw fruit). What recommendations do you have for a low fiber diet geared to weight loss?
A: For anyone that needs to lose weight the recipe is always the same. Look at total calories in the diet and especially the intake of sugar and fat. I understand the difficulty with consuming raw vegetables and fruits; however, cooking the vegetables makes them more tolerable and just as beneficial in terms of nutrients and weight loss success. Prepare vegetable soups and purees and do not add a lot of fat. When trying to lose weight the amount of fruit in the diet should be limited to 2 per day. Try cooking the fruit, like baked apple as it becomes more digestible that way. Your son can be successful with weight loss if he is cautious with the total calories he consumes and takes some time to be active. Keep vegetables and fruits cooked and eliminate sugar from the diet.
ANSWERED BY:
Expert Image
Experts 2010-2011, MD, etc.
n/a
November 2011
Q: Has there been any links shown between improved condition and a cessation of wheat in the diet?
A: There have been very few studies that have shown people with IBD do well on a wheat free diet. However, those people who have been tested for wheat sensitivity or intolerance and have a proven inability to digest it can benefit from this restriction. This situation is not common and most patients with IBD tolerate wheat products just fine. Be careful with eliminating excessive amounts of food from the diet. Remember that patients with IBD need a balance of nutrients and limiting wheat can cause significant reductions in total calories, which in turn can lead to caloric deprivation. Truly evaluate the need for this kind of restriction before imposing it upon yourself. Going to a reputable allergy or immunology center would be recommended before major dietary changes like this are taken on.
ANSWERED BY:
Expert Image
Experts 2010-2011, MD, etc.
n/a
November 2011
Q: I have had ulcerative colitis for 31 years and had my large intestine removed 3 years ago. I am severely lactose and dairy intolerant and my Vitamin D count is very low. My doctor gave me a script for Vitamin D but it made me so sick I stopped it. Can it be because I have no large intestine to absorb this vitamin? What do you suggest? I can only eat certain foods, no veggies or fruits.
A: Vitamin D3 is a critical micronutrient that assists in the absorption of calcium and allows for many other bodily functions that are imperative for maintaining health. Recently vitamin D3 has been implicated in reducing the risk of certain cancers and reducing inflammation in the body. Remaining deficient in this nutrient is not beneficial and can lead to other disease states. It is very important that you bring your body back to balance and make sure all vitamins are at recommended levels. As for getting enough vitamin D3 I recommend the following: 1) Consume more oily fish like salmon and tuna; 2) Try drinking more fortified orange juice and almond or soy milk (these also have a lot of calcium); 3) Have more eggs as the egg yolks have a good amount of this micronutrient; 4) Spend 15 minutes in the sun each day; 5) Try taking 1000 IU of vitamin D3 chewable on a daily basis, sometimes the prescription dose is 10,000 IU once a week and this can make you feel sick.
ANSWERED BY:
Expert Image
Experts 2010-2011, MD, etc.
n/a
November 2011
Q: I had a total colorectal removal with a j-pouch formation about 10 years ago. I had problems with pouchitis frequently afterward and continue to have chronic abdominal pain, cramping, and diarrhea. Can someone still have UC after having their colon removed?
A: After total proctocolectomy and ileal pouch-anal anastomosis patients no longer have ulcerative colitis. At surgery all of the colon is removed, except for 1-2 cm of the very end of the rectum near the anus. Although patients no longer have ulcerative colitis, they can continue to have a variety of symptoms that can be similar to ulcerative colitis symptoms, including urgency, frequency, diarrhea, cramping, and rectal bleeding. These symptoms may be due to inflammation in the ileo-anal pouch (pouchitis), inflammation of the remaining 1-2 cm of rectum (cuffitis), Crohn’s disease of the pouch, or irritable pouch syndrome. In addition, scar tissue from surgery (adhesions) or a slow leak from the pouch, with subsequent infection and inflammation, can cause symptoms of abdominal pain and loose stool. A combination of lab tests, radiologic imaging (CAT scan or MRI), and an endoscopy of the pouch (pouchocopy) can help distinguish between these different possibilities.
ANSWERED BY:
Expert Image
Experts 2010-2011, MD, etc.
n/a
November 2011
Q: Should I have a colonoscopy immediately after a severe colitis flare-up or should I wait at least a week or more?
A: It is usually best to wait a couple of weeks after a severe flare-up before doing a colonoscopy, since occasionally the preparation and procedure can worsen the IBD. However, in some situations it is important to do the procedure even during a severe flare-up, so the decision regarding timing of a colonoscopy should be discussed with one’s doctor.
ANSWERED BY:
Expert Image
Experts 2010-2011, MD, etc.
n/a
November 2011
Q: I have had Crohn’s for almost 36 years and had ileostomy surgery last January. I have a hernia in my stoma—is that serious?
A: Stomal hernias are common and are not necessarily serious, especially when small. However, larger stomal hernias may be uncomfortable and can interfere with normal daily activities and normal stoma function. These larger stomal hernias often need surgical repair.
ANSWERED BY:
Expert Image
Experts 2010-2011, MD, etc.
n/a
November 2011
Q: I am currently in a mild flare up and I’m having many problems with joints (big toe, 2nd and 3rd toe). Is there something I can do to lessen the inflammation?
A: The best way to manage the joint inflammation associated with disease flares is to treat the flare itself, thereby decreasing the overall inflammation. However, since improvement in a flare is not always instant, some physicians will treat the pain associated with joint inflammation by adding medications specifically for pain and/or joint inflammation, though it is best to avoid the common over-the-counter anti-inflammatory medications like aspirin, ibuprofen, and naproxen. Additionally, pain focused specifically in the toes, feet, or ankles may be due to another joint disorder like gout or pseudogout, so it is always best to discuss new onset joint pain with one’s physician.
ANSWERED BY:
Expert Image
Experts 2010-2011, MD, etc.
n/a
November 2011
Q: Is suddenly developed eczema after starting a new medication a common side effect?
A: The new development of eczema or any new skin rash is not common with most medications and should be discussed with one’s physician.
ANSWERED BY:
Expert Image
Experts 2010-2011, MD, etc.
n/a
November 2011
Q: My 27 yr old son-in-law was just diagnosed with Crohn’s. He has symptoms that indicate Crohn’s however they are going to do radiation on this thyroid. I have not seen any references to the thyroid in my research so this concerns me. He has lost 30lbs in about 2 months, has "the shakes" and they did an MRI and that is when Crohn’s was determined. Should a second opinion be sought?
A: The simultaneous occurrence of two new illnesses, such as Crohn’s disease and thyroid disease, is somewhat unusual, so one would want to be 100% certain of the accuracy of both diagnoses. Furthermore, the diagnosis of IBD is based not just on x-ray findings, but should also include a careful synthesis of clinical symptoms, laboratory results, endoscopic, and pathologic findings. In general, it is often useful to get a second opinion from a physician who focuses on the diagnosis and treatment of patients with IBD.
ANSWERED BY:
Expert Image
Experts 2010-2011, MD, etc.
n/a
November 2011
Q: I was diagnosed with Crohn’s in 2009. I do not have a weight loss problem, but the opposite. I eat when I am nauseous. I have recently put on more weight as my life became more stressful and I am experiencing more flare ups. Are anti-nausea medications okay for long term use in Crohn’s patients?
A: Anti-nausea medications are usually not recommended for long-term use. Chronic or recurrent nausea, with or without vomiting, is often either a sign that something is wrong or a medication side-effect. It is best to try to understand the cause of the nausea and correct the problem, rather than simply cover up the symptom with chronic use of anti-nausea medications.
ANSWERED BY:
Expert Image
Experts 2010-2011, MD, etc.
n/a
November 2011
Q: I have a 30+ year history of Crohn’s Disease currently considered in remission due to surgery and continuing meds. Now I have pulmonary complications (chronic brochiolitis) consistent with Crohn’s patients or patients on immunosuppressive drugs. What are the treatment options for this?
A: Bronchiolitis is a serious lung condition and the treatment for this should be directed by a board-certified pulmonary specialist physician. The treatments for bronchiolitis depend in part on the specific cause and severity of the inflammation, but can include corticosteroids, like prednisone and immunomodulators. If the bronchiolitis is caused by the Crohn’s disease, treatment of the Crohn’s disease may improve the condition.
ANSWERED BY:
Expert Image
Experts 2010-2011, MD, etc.
n/a
November 2011
Q: Is there a method to determine which biologic to use for the first time for a teenager diagnosed with Crohn’s that failed azathioprine therapy?
A: At this point in time there is no way to determine if one biologic medication is better than another for the treatment of IBD or to predict response to biologic therapy ahead of time. However, in the future it may be possible to make more informed choices about drug selection and response through genetic analysis. Ongoing research projects are actively looking for ways to predict response to medications, including biologic therapies.
ANSWERED BY:
Expert Image
Experts 2010-2011, MD, etc.
n/a
November 2011
Q: My daughter, 10, has ulcerative colitis and is taking infliximab. She had an infusion today and her SGOT levels are now 115 (highest they have been was 75 previously) and her SGPT level is now 43 (up from 28 last month.) Should I be concerned or am I just overly worried? Her other labs were within normal limits.
A: Mild elevations in liver function tests (LFTs) are fairly common in patients treated with biologic therapies, like infliximab. LFTs can also rise during treatment with immunomodulators, such as azathioprine, 6-mercaptopurine, and methotrexate. However, LFT elevations may be a sign of concomitant liver problems associated with IBD, like primary sclerosing cholangitis (PSC).These IBD-associated liver conditions can occur in any patient, including children. Although the LFT elevations are not dangerous in and of themselves, they should be monitored closely and if they continue to rise an adjustment in therapy and/or further investigation may be necessary.
ANSWERED BY:
Expert Image
Experts 2010-2011, MD, etc.
n/a
September 2011
Q: Does 6-mp or Azathioprine affect men’s fertility?
A: The effect of these medications on male fertility is not well studied. One study demonstrated that male sperm counts and other measures of fertility are normal in patients receiving azathioprine. Studies in animals have shown some differences in fertility in animals receiving azathioprine compared to those not receiving azathioprine, but it is unclear what this means for men. Currently, there is not enough information to recommend that all men should stop their azathioprine prior to starting a family.
ANSWERED BY:
Expert Image
Experts 2010-2011, MD, etc.
n/a
September 2011
Q: My son was diagnosed with erythema nodosum. He also has ulcerative colitis. How, if at all, is this related?
A: Patients with Crohn’s disease or ulcerative colitis may develop diseases outside the gastrointestinal tract. These diseases—also called extraintestinal manifestations (EIMs) -- are disorders of the immune system. EIMs usually refer to skin disorders (erythema nodosum and pyodermagangrenosum), eye disorders (uveitis and episcleritis), liver disorders (primary sclerosing cholangitis), and joint disorders (ankylosing spondylitis and certain types of arthritis). Sometimes mouth sores and fevers are included as EIMs. EIMs may or may not mirror IBD activity. EIMs occur in 6-40% of patients, and vary in frequency in patients with Crohn’s disease and ulcerative colitis, and men and women.
ANSWERED BY:
Expert Image
Experts 2010-2011, MD, etc.
n/a
September 2011
Q: I had an ileostomy 6 months ago after 1 bout of suspected colitis and a perforated bowel. Now my doctors are unsure if it was ulcerative colitis or Crohn's. Why can they not tell which it was?
A: Usually Crohn’s disease and ulcerative colitis have distinctive features. Crohn’s disease can involve any part of the intestinal tract from the mouth to the anus, can have areas of intestinal inflammation that are next to normal areas (called “skip” lesions), and inflammation can result in perforation of the intestine. Some Crohn’s patients, but not all, have a unique kind of inflammation called granulomas. Granulomas are seen in biopsy specimens when looked at under the microscope. Ulcerative colitis involves only the colon, and only the very superficial layers of the colon are inflamed, making perforation less common. In some cases, patients have features of both, making it difficult to make a firm diagnosis. Uncertainty arises in patients with inflammation only in their colon and without granulomas in their biopsy specimens. Disease behavior can also be similar: while intestinal perforation is more common in Crohn’s disease, it can also be seen in patients with ulcerative colitis, especially those with very severe inflammation. Another difficult situation is a patient who undergoes a colectomy for ulcerative colitis and then develops complications, such as abscess or fistula. The physician then must consider whether the complication was because of the surgery or because of underlying Crohn’s disease. Sometimes patients and their physicians may need to observe disease patterns for months to years to make a firm diagnosis. It can still be difficult to firmly distinguish Crohn’s disease from ulcerative colitis. Indeterminate colitis is the term used to describe patients in this situation.
ANSWERED BY:
Expert Image
Experts 2010-2011, MD, etc.
n/a
September 2011
Q: I have colitis and just found out this year. I also compete in cycling and typically train and race 10-12 hrs a week. Is there any effect of this on the colitis? Could the physical stress cause a flare? Are there any recommendations for athletes with colitis for diet and training?
A: There is no evidence to suggest that exercise worsens inflammatory bowel disease. Exercise is important for bone health and for mental health. There are professional athletes with IBD. Some IBD patients have decreased exercise tolerance, but the available studies suggest this is mainly related to complications of IBD, such as anemia and poor bone health. There are also practical issues to consider. Patients with ostomies should refrain from contact sports, patients with active disease—particularly of the rectum—may need to be close to a bathroom, and some may need to be prepared for the occasional accident. The message, however, is that exercise should be done to the extent it is tolerated, it should be encouraged, and it is more beneficial than harmful in the majority of patients. With respect to diet, a healthy one is the rule. For patients who have trouble keeping weight on, they should understand that physical activity burns calories, and so they will need more calories. The more strenuous the exercise the more (healthy) calories they will need. For most patients, especially those with inactive disease, the dietary recommendations for athletes with IBD are usually the same as athletes who don’t have IBD.
ANSWERED BY:
Expert Image
Experts 2010-2011, MD, etc.
n/a
September 2011
Q: I am about to start training for the CCFA half marathon. I have severe CD with an ileostomy. My ostomy is very active and there is a short duration where there is no output. I already have a problem low sodium and low potassium. I often end up in urgent care needing 3-4 liters lactated ringers. How will I avoid exacerbating these problems while training and during a day of half marathon?
A: Patients with ileostomies can have significant water losses, and importantly, sodium and potassium losses. For an athlete with an ostomy, the water, sodium and potassium losses from perspiration and increase respirations may also be substantial. Ostomy, perspiration (sweat), and respiratory losses must be accounted for when considering fluid and electrolyte replacements. If a patient is having difficulty maintaining hydration at rest, this should be addressed with their physician prior to introducing an intensive training program. It is important to realize that most sports drinks do not meet the fluid and electrolyte needs of an athlete with an ostomy. Sports drinks may have too much sugar and, more importantly, not enough sodium and potassium. A patient with an ostomy may need pediatric hydration solutions (which are much higher in sodium and potassium) to maintain normal hydration.
ANSWERED BY:
Expert Image
Experts 2010-2011, MD, etc.
n/a
September 2011
Q: I had surgery in 2005 and they removed 10 inches where the Crohn’s was due to a blockage. Since then I have been great. Then this year my liver went bad and I am on Imune azathioprine. Now my Crohn’s has flared up again and my doctor suggests surgery or infliximab due to a new blockage. What does infliximab do and what are the side effect? Is surgery or medication a better option?
A: Infliximab is an antibody. Antibodies are proteins that bind very specific molecules. Infliximab is an antibody that binds a chemical called tumor necrosis factor alpha (TNF-a). TNF-a is a chemical that causes inflammation. When infliximab binds TNF-a, it inactivates, decreases or completely eliminates inflammation caused by Crohn’s disease in many patients. Infliximab is given as an intravenous infusion. Side effects include symptoms during or shortly after the infusion, an increased risk of infection, and, though small, increased risk of certain cancers. There are other side effects as well, and patients should have a good understanding of these prior to starting any medicine. As is the case with all treatments for Crohn’s disease, the risks of the medicine should be considered with the medicine’s benefit. Surgery may be necessary in Crohn’s disease because some medicines are not helpful in certain instances. If a bowel obstruction is caused by inflammation, it may improve with medicine. If a bowel obstruction is caused by scar tissue, surgery may be required to relieve the obstruction. Again, the patient should have a complete understanding about what the potential benefit of surgery is, and what the potential risks are. With all that said, some patients benefit significantly from surgery.
ANSWERED BY:
Expert Image
Experts 2010-2011, MD, etc.
n/a
September 2011
Q: My 17 year old son was diagnosed with UC in October 2010 and the diagnosis was changed to Crohn’s disease in April. He’s gone through many different treatments and is now on infliximab. The inflammation and symptoms have reduced, but he’s not in remission. I’m concerned that he’s gone 16 months with continued inflammation. Is it possible to safely replace infliximab with a 6MP or some kind of combination therapy?
A: First of all, there are several reasons for ongoing symptoms in the face ofwhat should be effective Crohn’s disease therapy. The cause of symptoms may be due ongoing inflammation due to Crohn’s disease, which may be suspected based on laboratory tests or endoscopy/colonoscopy. If Crohn’s inflammation is present, then medicines should be optimized. Some patients don’t take their medicines. There are many reasons a patient doesn’t take their medicines: I have found the most common reason is they forget or they have side effects and are afraid to tell their doctor. Whatever the reason, tell your doctor if you aren’t taking them and why. If you are taking your medicines, there are ways your physician can tell if the dose is incorrect or if it’s not effective. There are certain tests that may help a physician decide if infliximab dosing can be increased or why it is not working. While adding mercapturine (6MP) may be considered in some patients, there is a concern that infliximab AND 6MP may increase the risk of certain infections and cancers. If inflammation cannot be found or doesn’t appear to be causing symptoms, other reasons for ongoing IBD symptoms should be considered. One alternative explanation for ongoing symptoms is a stricture or scar in the intestine. If present, strictures may not respond to any therapy and require surgery to repair. Lastly, ongoing Crohn’s disease symptoms while on therapy may be due to non-Crohn’s disorders of the intestine, including infection—particularly Closteridiumdifficile, undiagnosed celiac Sprue, lactose intolerance, or irritable bowel syndrome. Patients, their families, and physicians should explore all potential explanations for ongoing symptoms while receiving what should be effective therapy.
ANSWERED BY:
Expert Image
Experts 2010-2011, MD, etc.
n/a
September 2011
Q: If you have developed antibodies against one biologic drug, does that mean you will develop antibodies against other biologic drugs?
A: Infliximab, adalimumab, and certolizumab pegol are medications used to inactivate a chemical called tumor necrosis factor alpha (TNF-a). These therapies are antibodies—proteins that bind to and inactivate very specific molecules. They are called biologics because they are antibodies. Antibodies to infliximab increase the risk of infusion reactions, and may decrease the effectiveness of infliximab. Sometimes additional medications (such as methotrexate) are given to patients in addition to infliximab to attempt to prevent the formation of antibodies to infliximab. Antibodies to infliximab can be measured in the blood, and if they appear to be clinically important in a given patient, therapy with another biologic (adalimumab or certolizumab pegol) can be used. This is because the antibodies to infliximab don’t react with adalumimab or certolizumab pegol. Antibodies against adalumimab and certolizumab pegol can develop, but currently, there are no blood tests commercially available yet to measure them.
ANSWERED BY:
Expert Image
Experts 2010-2011, MD, etc.
n/a
August 2011
Q: I always seem to flare right before my period, is this common in IBD patients?
A: Research has shown that there is a relationship for some women and their menstrual cycle. Symptoms of IBD can be worse the week before or the week of menstrual bleeding. Recognizing this pattern of disease behavior can help your doctor plan a treatment regimen for you which may include the timing of biologics or the recommendation of oral contraceptives to help minimize menstrual symptoms.
ANSWERED BY:
Expert Image
Experts 2010-2011, MD, etc.
n/a
August 2011
Q: How effective are probiotics in reducing inflammation in Crohn's disease or ulcerative colitis?
A: Many studies have tested the effectiveness of probiotics in reducing inflammation in IBD. Results have been mixed for Crohn’s disease, with some studies showing a benefit, many showing no effect, and some showing that symptoms get worse. On the other hand, several recent studies have shown that probiotics may reduce inflammation in patients with Ulcerative Colitis. The choice of a specific probiotic should be discussed with your doctor, as they vary widely in make-up and stability in the GI tract.
ANSWERED BY:
Expert Image
Experts 2010-2011, MD, etc.
n/a
July 2011
Q: What are the chances of proctitis changing to colitis? I have pain in my upper colon now and believe it is colitis. Is my pain a symptom of proctitis or could it have grown to colitis? Also, I have been bleeding for 6 wks, is that abnormal? I am currently taking mesalamine with a rectal enema and cannot go to the bathroom and do not have diarrhea.
A: Symptoms of colitis include pain, bloody stools, and frequent loose stools (including night time stools). While ulcerative colitis can affect the entire colon (pancolitis), it may also be limited to segments of the colon, including the rectum. When colitis affects the rectum, or the very end of the colon, it is called proctitis. Some people have only proctitis, and other people may have other areas of their colon affected with inflammation. Patients with proctitis (with or without other areas of colon involvement) will often have a sense of stool urgency, frequency, rectal bleeding, and often pain. Rectal bleeding for greater than six weeks is not normal, and may reflect inadequately treated proctitis or colitis. Your gastroenterologist will want to discuss these symptoms with you and potentially change your medication. Additionally, change in your stooling patterns, particularly an inability to stool, should be investigated to exclude the development of colon cancer. Your doctor will help you determine the extent of your colitis and if there are any areas in your colon that are worrisome for cancer.
ANSWERED BY:
Expert Image
Experts 2010-2011, MD, etc.
n/a
July 2011
Q: Is swelling in the throat or difficulty swallowing Crohn’s related? I’ve had trouble taking pills and with getting things stuck in my throat for the past year, but I didn't think it was related so I did not mention it to my GI doctor. It is getting worse though and I wonder how concerned I should be and what could help the situation.
A: Difficulty swallowing (dysphagia) is never normal, and in patients with Crohn’s disease, this symptom should be promptly evaluated by your gastroenterologist. There are many causes of dysphagia, including infection, gastroesophageal reflux disease, inflammation of the mouth or esophagus, or development of an esophageal stricture. You should discuss your symptoms with your doctor and your health care team. They may choose to perform a diagnostic x-ray study or perform esophagogastroduodenoscopy (EGD, upper endoscopy) to look at and biopsy any unusual areas in your esophagus.
ANSWERED BY:
Expert Image
Experts 2010-2011, MD, etc.
n/a
July 2011
Q: What damage is caused from a c diff infection with Crohn's disease?
A: Clostridrium difficle infection (CDI) is one of the major causes of antibiotic-associated diarrhea and may represent one of the most common hospital-acquired infections around the world. Patients with inflammatory bowel diseases (IBD) are particularly prone to developing CDI given the higher rates of clinic visits, hospitalizations, antibiotics, and procedures performed. Additionally, some patients with IBD may be at risk for CDI even without antibiotic exposure. Symptoms may mimic or exacerbate an acute flare of either Crohn’s disease or ulcerative colitis, including fever, abdominal pain, nausea, and diarrhea. Recognition of CDI in patients with Crohn’s disease and ulcerative colitis is important. Diagnosis is made via stool sampling. Once treated, CDI should not be expected to cause permanent damage in patients with Crohn’s disease. Treatment is generally with very specific antibiotics, and most patients have a prompt and complete response. However, progressive CDI can lead to severe colitis and require emergent surgical intervention.
ANSWERED BY:
Expert Image
Experts 2010-2011, MD, etc.
n/a
July 2011
Q: A question about the NOD2 gene and apparent increase in Crohn’s cases. Considering that the incidence is higher in urban areas, is transmissibility possible? If a normally beneficial bacterium’s cell wall receptors have changed and it is transmitted to someone with an abnormal NOD2 gene could it initiate Crohn’s while someone with a normal NOD2 gene would be unaffected?
A: The answer to the transmissibility question remains unknown, but the potential answers are provocative. The precise mechanism that causes Crohn’s disease remains imperfectly understood. However, a common characteristic of IBD is an increased immunological response that perpetuates an inflammatory reaction in the gastrointestinal tract. NOD2 is a gene that regulates gastrointestinal immune and inflammatory response to gut bacteria. Some patients with Crohn’s disease have NOD2 gene mutations; however, not all patients have NOD2 mutations, suggesting that it is a susceptibility factor. Therefore, in susceptible individuals with an abnormal NOD2 gene, it is possible that an otherwise normally beneficial bacterium or its mutation, its cell wall or byproducts could initiate an abnormal immunological cascade triggering the development of Crohn’s disease. This same bacterium may not invoke an abnormal immunological response in a normal individual.
ANSWERED BY:
Expert Image
Experts 2010-2011, MD, etc.
n/a
July 2011
Q: Should you only make dietary changes during a flare—or is it also helpful to watch your diet at all times? For example is it wise to avoid high