Expert Q&A

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Most Recent

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.
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.
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.
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).
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.
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.
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.
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.

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Diet / Lifestyle

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.
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.
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:
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.
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.
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.
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.
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.
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.
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.
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.
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
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.
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.
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 . 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.
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:
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.
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.
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.
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.
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.
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.
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.
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: . 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: 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 .
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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
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.
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.
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: .
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,
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.
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.
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
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.
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.
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.
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
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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 fiber foods all/most of the time? In other words can watching your diet help to prevent flares and/or the frequency of them?
A. Dietary recommendations must be individualized to reflect disease type, area of intestine involved, and the severity of the disease. While it is important to strive for a well-balanced and healthy diet all the time, sometimes flares of disease will cause more dramatic dietary changes to reduce symptoms. In your example, avoiding high-fiber foods is recommended in patients with IBD that have abdominal pain, cramping, or diarrhea after eating. However, some patients in remission and on maintenance therapy tolerate high-fiber foods without difficulty, and this is largely on a trial-and-error basis. Watching your diet may help you to prevent symptomatic flares if you have Crohn’s disease associated with narrowing of the intestine, as intestinal cramps or pain in this setting may be more reflective of the intestinal narrowing more than the disease itself. Keeping a food diary is extremely helpful to assist identifying what foods and beverages you tolerate well, and what foods you should avoid based upon your symptoms. The CCFA has a food diary template available for download at:
Q. What is the best diet plan post a proctocolectomy or resection surgery?
A. There is no perfect diet plan for all individuals that have had an operation, but common recommendations for eating following proctocolectomy with reconstructive ileoanal pouch reconstruction include: 1) efforts to eat smaller, more frequent meals; 2) avoiding concentrated, sugar-dense liquids like soda, or greasy foods that can increase loose stools; 3) start slowly and increase intake gradually; 4) avoiding late-night meals – this helps to cut down on having to get up in the middle of the night to have a bowel movement; and 5) stay well-hydrated and drink plenty of fluids. Your surgeon and gastroenterologist will work with you to define goals for the consistency and frequency of your bowel movements. The consistency of your bowel movements can be modulated by the use of supplemental fiber, and the frequency can be influenced by anti-diarrheal medicines that slow the intestinal transit time. You will want to discuss with your doctors specific foods such as nuts, seeds, corn, and popcorn if they have given you problems or caused cramps in the past. There is high value in maintaining a food and beverage diary in the first few months following surgery, as it will help you to identify foods that may give you more problems with bowel movements and foods that you can consume without difficulty. The CCFA has a food diary template available for download at:
Q. I have had Crohn's since 1987 and am in my mid-40s. I currently take adalimumab twice a month and am doing very well on it. I had surgery in 2003 and they removed 65% of my large intestine and 35% of my small. My problem is that about 90% of the time I have a bowel movement (BM) after I eat. It can be embarrassing at times especially if my wife and I are out to eat with friends. Any suggestions on how to reduce this?
A. It is a natural reflex for the bowels to evacuate after eating a meal, to make room for the newly eaten food. However, when you have had surgery, such as you describe, that reflex may be exaggerated. One possibility that may help reduce the need to have a BM after meals, especially if you are planning to go out, would be to take an anti-diarrheal medicine, like Imodium, prior to the meal (be pre-emptive about it, don’t wait until it happens!)
Q. What type of dietary modifications can help in the symptoms of nausea and vomiting?
A. The first question to ask is why you are having nausea and vomiting. It is important to address the cause for these symptoms with your doctor so that, if possible, specific management can be aimed at alleviating the underlying reason for these symptoms (i.e. treating active disease or removing a blockage if it is present). If these symptoms are related to an active flare, eating smaller more frequent meals will often help. Also, avoiding fiber, dairy, spicy foods, and high fat meals during flares can also help. If the symptoms are related more so to a chronic blockage (scar tissue) in the bowels, then eating a low residue diet (especially avoiding diets high in insoluble fiber) and again, eating small frequent meals, may help. Nausea and vomiting could also be related to medications used to treat IBD, so discuss this possibility with your doctor as well.
Q. Is exercising recommended in helping to manage the symptoms of IBD and do I have to take any precautions if I want to exercise?
A. Exercise is an important part of any healthy lifestyle and having IBD doesn’t change that. However, when you have active symptoms, you may not feel up to exercising. On the other hand, when you do feel well, regular exercise is encouraged. In general, the only limitations on exercise are what you impose on yourself. However, be sure to discuss your specific exercise plans with your doctor.
Q. Will maintaining a gluten-free diet help with the symptoms of IBD?
A. A lot of people claim that a gluten-free diet will help with symptoms of IBD. However, most people are not really intolerant of gluten, an entity that is found almost everywhere. In ulcerative colitis, the inflammation is in the colon not the small intestine so the effect of gluten has no direct effect. In Crohn’s disease, some feel that a gluten free diet helps them feel better. Most of this effect is from a healthier diet in general, since gluten free essentially means taking all the “crap” out of your diet and that you are eating healthier, eating foods made at home and not purchased pre-made or in restaurants.
Q. What type of diet or lifestyle modifications will help with increasing energy and dealing with the symptom of fatigue?
A. There are no diets that have been shown to definitively and consistently helped patients with energy. Carbohydrates give your body instant energy, but protein is important for longer term energy requirements. Making sure that a well balanced diet in terms of nutrients is important—if you are on a very limited diet then supplementation with vitamins like vitamin B12 and iron is necessary.
Q. I've recently introduced coffee back into my diet for about a week after being diagnosed with Crohn's. I have steadily been having more and more pain. Is coffee a known irritant?
A. There’s so much that’s not known about the influence of diet on Crohn’s disease activity and symptoms. Coffee is NOT known as an irritant, but if it makes symptoms worse, then you should consider stopping it. If, however, you would prefer not to abandon coffee, you can try re-starting it after stopping for a couple of weeks. This kind of re-challenge can be useful in distinguishing something that’s harmful to you from something that seemed to cause symptoms by coincidence.
Q. I am on immunosuppresents, so I am not looking for immune system boosters. However, are there any anti-inflammatory supplements which could help with UC? Fish oil, turmeric, etc?
A. Probiotics may help some patients with ulcerative colitis stay in remission. While fish oil and turmeric have also been studied, it is not clear that these will help most people. The best plan is to speak with your doctor about the supplement you would like to try, in the context of the medications you are already taking.
Q. I have experienced severe weight loss recently. My appetite is very low and I find it difficult to eat anything. What can I do to increase my appetite and start gaining weight or combat the effects it's starting to have on my body?
A. Your low appetite may be from the inflammation in your body from IBD, or may be due to a complication of the IBD. You should speak with your doctor about whether adjusting your IBD treatment might help your appetite, and whether nutritional supplements would also help.
Q. Can I drink wheat grass juice? I have Crohn's disease and I am thinking about going to a juicing program to get more vitamins.
A. That should be fine. This has been studied in one small study in patients with ulcerative colitis. Just let your doctor know about any supplements to make sure there are not interactions with medications you are taking.
Q. Over the past year I have noticed a nickel to quarter size sore red lump located very close to my bikini area (started as one but have had two at once). It lasts quite a few weeks, is filled with some pus and mostly blood, and leaves a bruise and scar. It is not an STD. I have had Crohn’s for about 20 years and have had a rather large abscess before at the base of my butt cheek. Could this current problem also be related to my illness?
A. Crohn’s disease and ulcerative colitis can be associated with a variety of skin problems that cause inflammation. Sometimes, but not always, these skin problems will be a sign of progressive disease even if there are no or minimal gastrointestinal symptoms. Skin problems that produce swelling, soreness, and pus in and around the groin, under the breast, or under the arms may be due to something called hydradenitis suppurativa. Shaving these areas can worsen these problems. However, given the location of your lump, this may be a sign of a developing fistula. Since the skin lesions are recurring, this should be discussed with your gastroenterologist or treating physician; you might be recommended to see a skin specialist (dermatologist).
Q. Our 2 yr old daughter was diagnosed with Crohn's disease at the beginning of this year. She struggles with constant constipation and has had 2 fecal impactions. Doctors have said there is no particular diet for her to follow... What can help with this constipation? She is a picky eater and sometimes only eats one meal daily. Should she be drinking supplements like Pedisure?
A. In regards to your 2 year old daughter and your concerns about constipation and bowel obstruction there are some helpful dietary modifications I would recommend. First of all, it is very important that she is getting enough calories, protein, fat and micronutrinents, especially calcium, in the diet to promote growth and development. Secondly we would want to make sure she is not consuming foods that would lead to more constipation and risk obstruction. Here are some tips to follow in terms of planning her diet: 1. Homemade shakes made with fortified soy milk, protein powder (like Spiru-tein, found in health food stores)and fresh fruit that is pureed in a blender are great sources of calories, protein, calcium and fat (if you add a tablespoon of peanut butter). I prefer homemade over Pediasure because you can add fresh fruit, like frozen mango, and it is lower in sugar. 2. High antioxidant juices like pomegranate, acai and mangosteen are fabulous sources of nutrition and help to prevent constipation. Try these juices in between meals instead of the typical apple and orange juice. 3. Try to avoid highly irritating fibrous foods like skins, seeds, nuts, popcorn, raw vegetables and high fiber grains while she has inflammation. You should give her cooked and pureed fruits and vegetables to ease digestion and get her the nutrition she needs.Soups and stews are great for meals because everything is well cooked and can be super rich in nutrients.
Q. Our daughter has completed her 10th maintenance round of Remicade and is doing very well. What she fights the most is fatigue - always feeling tired. She still continues her daily schedule as a senior in high school, and seems to get plenty of sleep at night. I know that it is fairly common for Crohn's patients to feel tired much of the time, but I was wondering if there was a suggested supplement or vitamin that she could take to increase her energy level.
A. Fatigue is one of those symptoms that can be secondary to a lot of different things. A lot of time the Crohn’s is blamed, but if the patient is not anemic or actively inflamed it is hard to point to Crohn’s directly. Medications can give you fatigue as a side effect, but many times undiagnosed depression is the culprit. Fatigue can be the body’s response to depression. A thorough physical exploring all of these issues is warranted.
Q. Would going on a liquid diet help to reduce disease symptoms?
A. Studies have shown that a liquid diet (“enteral nutrition”) can reduce symptoms, and reduce inflammation in the intestine. This is a formula prescribed by your doctor which would provide all of your nutritional needs for a period of time – usually 6-8 weeks.

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Disease Education

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.
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.
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.
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.
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).
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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 ( and you may find it beneficial to meet with a registered dietician to help customize your diet.
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:
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).
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 and is available to everyone.
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
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.
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.
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.
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
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.
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.
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.
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
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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: 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.
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.
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” 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.
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.
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.
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.
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
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
Q. I am considering moving back to the northern US from the southwest, which is where I was diagnosed (indeterminate colitis). It's common to hear that IBD is more prevalent in northern climates, but that's as much as any source ever says about it. Where does this statement come from and how should I interpret it? Are more people diagnosed there? Do people there flare more often? I am looking for insight to help me decide if moving north is a health risk. I lived there before I was diagnosed.
A. Studies looking at large groups of people have found that diagnosing people with inflammatory bowel disease is more common in northern parts of the world (North America, England, Northern Europe) and less common in other areas of the world like Asia, Africa, and Latin America. Some of this may be complicated by the fact that infectious causes for colitis may mask the diagnoses of IBD in the latter areas. Other studies have found this similar “gradient” of diagnosis within northern countries including the USA and France. However, with the more we know about IBD and with more awareness, these “less common” areas are increasingly diagnosing IBD as well. Of note, these studies are all looking at “prevalence” (how common) and “incidence” (new diagnoses) of IBD and not at how the disease is affected by moving from one climate to another. This latter study is much more difficult to do and less is known. In regards to how your colitis will do depending on where you live (which is really what you want to know), there is no clear data that moving to the north will lead to more flares than living in the south. While we know there are potential triggers for flare-ups (for example, infections, smoking, non-steroidal anti-inflammatory use), no study has clearly found that moving from one climate to another makes an impact on the course of your colitis.
Q. Will Crohn’s disease or ulcerative colitis ever go away or heal itself?
A. Both Crohn’s disease and ulcerative colitis are chronic inflammatory illnesses that we consider lifelong illnesses. In some cases, however, there is medication-induced healing that is quite durable and spontaneous remission that can be quite durable. Nevertheless, patients are considered to have a lifelong possibility of relapse. This is particularly true in Crohn’s disease when there is quite a high rate of microscopic recurrence after surgery, although much research is being invested into designing ways to avoid such a post-operative recurrence. Surgical treatment of ulcerative colitis results in “loss” of the disease with either the formation of a J-pouch, where a segment of small intestine is attached to the anal sphincters so that patients can still defecate in the usual fashion, or the creation of a permanent ileostomy, in which the small intestine is brought out the abdominal wall and waste is captured by an appliance worn on the abdominal wall.
Q. I was diagnosed in 09 with UC and have not been able to get into remission. Recently I've had severe rectal pain--difficult to change positions, move, and my bowel movements are more painful than ever. It's been 2 weeks. Curiously, my bowel movement frequency had decreased before onset of this pain. A pelvic CT scan was done in ER and visual inspection, nothing found. What could be causing this extreme rectal pain?
A. Rectal pain associated with relative constipation is usually a sign of an anal fissure or small fistula. Visual inspection is usually not sufficient, and they are quite small so will not be seen on CT. An exam by a colorectal surgeon is needed, they can use a special short scope to assess the area.
Q. What happens when a flare up occurs? What should I look out for? My understanding is abdominal pain, diarrhea, and bloody stools. How long do flare ups last?
A. A “flare up” refers to the occurrence of symptoms after a period of no symptoms (remission). Symptoms of a flare up are dependent on which disease you have (UC or Crohn’s disease) and those symptoms you experienced when you got diagnosed. Any persistent change in your bowel habits, blood or pain should trigger a discussion with your doctor as to whether your symptoms are indicative of disease recurrence. The length of a flare up will depend on how long you have symptoms before treatment, the possible reason for the flare, and how bad the disease gets before treatment.
Q. My daughter had a complete colectomy after being diagnosed for UC in 2008. She is doing well, but seems to be prone to colds and flu. She received a flu shot this year. She takes no medication. Are UC patients more prone to colds and flu?
A. Ulcerative colitis patients are not more prone to infections such as Influenza or other upper respiratory illnesses. The flu shot is always a good idea. While not relevant to your daughter’s care, some of the medications that we use often in the treatment of ulcerative colitis can result in an increased risk of infections, however, particularly corticosteroids like prednisone, immunomodulators like 6-merpcaptopurine and azathioprine, and anti-TNF’s like infliximab.
Q. How can Crohn's disease in the stomach be conclusively diagnosed? Could inflammation in the stomach diagnosed as Crohn’s cause severe pain? What is an effective treatment for Crohn’s found in the stomach?
A. Studies have shown that approximately 0.5% to 4% of all patients with Crohn's disease will have involvement of their stomach and/or the duodenum (the first part of the small intestine that comes right after the stomach). Inflammation related to Crohn’s disease can be seen on x-ray studies, such as an upper GI series or through an upper endoscopy with biopsies. But, remember that inflammation can be from other causes, including ulcer disease and/or H. Pylori infection. Most patients with gastroduodenal Crohn's disease are asymptomatic, but some people will experience epigastric pain, as well as nausea, vomiting, and weight loss. Treatment for gastroduodenal Crohn’s disease generally includes acid suppression with a proton pump inhibitor. Other medicines can also help, including steroids, 6-MP, and azathioprine. 5-ASA medications are generally not helpful for gastroduodenal Crohn’s disease and the role of biologic therapy remains unclear. In severe cases where a stricture develops and is causing obstruction, this is treated with either endoscopic dilatation or surgery.
Q. I am experiencing lower back pain that stretches across my buttocks and up to waist. Is this part of Crohn's?
A. This kind of low back pain can occur in some patients with Crohn’s disease and will be found to be related to a form of arthritis called sacroiliitis. This condition may be able to be diagnosed by imaging studies, such as a CT scan or MRI. Of course, remember that low back pain is also very common in many people without Crohn’s.
Q. I was diagnosed 14 years ago (at age 22) with Crohn’s disease after a serious case of food poisoning. I have not taken medication for CD in 14 years and have had no disease symptoms since. My colonoscopy over the years show no inflammation. Is it possible that I had a misdiagnosis? Are there new test that should be performed to rule out a misdiagnosis?
A. If you have no symptoms and no other signs of inflammation in the intestine, then it is very likely that you do not have Crohn’s disease. Perhaps there was some transient inflammation due to the food poisoning. There is no need to do any additional tests if you have no symptoms.
Q. I believe the trigger for the onset of my 15 year old son's Crohn's Disease was topical acne medication such as adapalene or clindamycin. Drug warnings indicate that this is a possible cause of Crohn's, but his doctor doesn’t seem to agree. Are doctors tracking the use of acne meds with young Crohn's patients to see if there is a trend?
A. Some recent studies have suggested that an acne medicine taken by mouth was associated with development of Crohn’s Disease. However, other large studies have not shown this. Doctors are tracking the use of acne medications to see if there is a trend.
Q. What is it called if UC is in the cecum?
A. It is still called ulcerative colitis – the cecum is the first part of the colon, where the small intestine, the ileum, empties into the colon.
Q. My daughter just had a terminated colonoscopy due to having friable mucosa throughout her procedure. Is this related to colitis?
A. Yes – friable mucosa means the lining of the colon bleeds easily with contact from the colonoscope. This is because of the colitis.
Q. Can IBD cause bloating in the stomach?
A. Bloating is a very common symptom for patients with IBD. Bloating might be related to the disease, especially if the disease involves the stomach or small intestine. However, bloating might also be related to IBD medications and/or diet. Some foods are very common causes of bloating (and gas), including soda pop, onions and garlic, beans, cabbage, broccoli, cauliflower, and milk products (including ice cream). If the bloating only occurs after eating, and if it is associated with severe abdominal cramps and/or severe nausea and vomiting, it could be a sign of a possible small bowel narrowing in patients with Crohn’s disease.
Q. Before I was diagnosed with Crohn's I had some swelling in my right wrist. I have been on a biologic now for 4 months or so and the doctor told me my Crohn's is in remission. I still have the swelling in my wrist though. I've tried anti-inflammatories and tylenol, but no luck. Is this something that may never go away? My wrist has been swollen for almost 8 months now.
A. IBD can cause a variety of so-called extraintestinal symptoms, including joint swelling and pain. In general, swelling, and often pain and stiffness, of the joints in the arms and legs parallels the activity of the bowel disease. So usually, if the bowel disease gets better with medical treatment the joint disease improves as well. If your joint is still swollen, you should be evaluated by a joint specialist, rheumatologist or orthopedic surgeon, to be certain there is no other problem with the joint.
Q. How does a doctor determine whether a patient has Crohn’s or UC if the disease is located only in the large intestine?
A. This can be difficult. Ten percent of the time we cannot tell the difference and thus diagnose the patient with “indeterminant colitis”. Sometimes there are clues that can go unnoticed, like what appears to be “hemorrhoids” but are really skin tags and signal Crohn’s disease. There are blood tests that can help but these again can be confusing and do not “clinch” the diagnosis.
Q. Is it possible for Crohn's to only manifest in areas of the small intestine that can't be seen by a scope? If so, what is the most effective way to diagnose this and do these alternate methods adequately identify the Crohn's when the symptoms are only mild to moderate in severity?
A. Most patients with Crohn’s disease of the small intestine have signs of the disease in the very last portion of the organ, which can be seen with a scope. CT scans and MRIs are now very sensitive and can pick up abnormalities that previously were missed. As well, video capsule studies (swallowing the pill camera) shows us the entire small intestine. If Crohn’s is present in the middle of the small intestine, there are ways to find it.
Q. How often is ulcerative colitis misdiagnosed?
A. This is a very difficult question to answer as we do not know how many patients fit this category. Ulcerative colitis can be mimicked by many other conditions, and thus it is a combination of tests that lead to the correct diagnosis. An important person in this diagnosis process is the pathologist who is reading the tissue biopsies to see the changes necessary to make the diagnosis of ulcerative colitis.
Q. Two decades now living with Crohn's and being treated with Remicade for years now as no other meds worked in the past. Currently manageable. How often are colonoscopies recommended in my situation? My MD suggests every two years is standard practice, and I would like another opinion on this as I don't want them this often.
A. After having disease for 10 years we recommend surveillance colonoscopies to look for pre-cancerous changes every 1-2 years depending on your other risk factors for cancer. At this time there is no other suitable way to detect these precancerous changes without doing a colonoscopy. Colonoscopies are never fun, but discussing your reluctance to having them can sometimes lead to manageable solutions for your concerns and make the experience less unpleasant.
Q. Why does it take so long to get a clear diagnosis of Crohn’s disease or ulcerative colitis?
A. Many of the symptoms that can lead a patient to a doctor that are from Crohn’s disease or ulcerative colitis can come from a number of different illnesses. Diarrhea can come from infections, medication side effects, deficiencies in numerous processes of digestion and absorption, Crohn’s disease, and many, many other illnesses. The same is true of abdominal pain, weight loss, growth and developmental delays, and so many more of what we call the “presenting symptoms” of Crohn’s disease or ulcerative colitis. To arrive at the diagnosis, doctors must first think of the diagnosis, exclude the other possibilities, and perform a diagnostic test that confirms the diagnosis. Usually, that requires and invasive test, such as a colonoscopy, or a test requiring exposure to X-rays, like a small bowel series or a specialized kind of CT scan called a CT enterography, a kind of X-ray test with specialized computer enhancement. Given a relative hesitation in performing these tests due to patient inconvenience and due to the overlap with other illnesses, it can often take some time to get a clear diagnosis of either Crohn’s disease or ulcerative colitis.

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Special Populations

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. TNot 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.
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. TAlthough 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.
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. TIn 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.
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. TYour 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.
Q. I would love to know what medications are "safe" and which ones aren't during pregnancy.
A. TThe 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.
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. TAnxiety 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.
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. TI 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.
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. TFirst, 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.
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. TIt 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.
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. THumira 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.
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. TWhile 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.
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. TI 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.
Q. Is cimzia safe to take if my husband and I plan on having more children?
A. TThe 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)
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. TClostridium 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.
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. TCrohn’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.
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. TMethotrexate 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.
Q. Is it okay to continue medical treatment of IBD during pregnancy?
A. TYes, 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
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 ( Which form of birth control is safer for me to take?
A. TThe 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.
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. TMedical 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.
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. TThere 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
Q. Is there any research on the safety of taking growth hormones while on a biologic?
A. TThere have been no controlled studies looking at the safety of taking human growth hormone while also receiving a biologic.
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. TIn 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.
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. TThere is no difference in ulcerative chronic active colitis and ulcerative colitis. They imply the same thing.
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. TThe 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 ( for more information.
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. TIt 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.
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. TStudies 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.
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. TSince 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.
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. TAt 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.
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. TMild 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.
Q. Does 6-mp or Azathioprine affect men’s fertility?
A. TThe 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.
Q. I always seem to flare right before my period, is this common in IBD patients?
A. TResearch 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.
Q. My partner has ulcerative colitis – is it safe to have anal intercourse when there are no active disease symptoms?
A. TSexual activity is a normal and healthy component of a mature relationship. In the absence of active symptoms of ulcerative colitis, anal intercourse alone should not be expected to increase symptoms. Anal intercourse should be avoided if your partner has active proctitis or anal fissure, as the friction that may occur can aggravate these conditions. Importantly, if your partner develops any symptoms following anal intercourse, this should be discussed promptly with your physician.
Q. My teenage son has Crohn’s and has been on infliximab for 4 years without active flare ups. When or how will we know when it is safe to stop the infliximab or to space out the doses? If we stop the treatments and if he flares up, will he be able to go back on the infliximab?
A. TIt is difficult to define an “exit strategy” for Crohn’s disease that is well-controlled on biological maintenance therapy. Increasing experience in children and adolescents using infliximab for maintenance therapy has demonstrated an improved quality of life, reduction in the need for corticosteroid therapy, fewer hospitalizations, and reduced likelihood of developing antibodies to infliximab. In studies observing outcome following discontinuation of infliximab in Crohn’s disease, approximately half of the patients will experience recurrent symptoms around one year, and about 35% of patients will remain in clinical remission. Some of the major issues with long-term use of infliximab include the risk of infection and rare cases of lymphoma. A major concern with discontinuation of infliximab is the development of antibodies that prevent its future use. Whether or not your son would be able to go back on infliximab is largely dependent upon whether his body develops antibodies to infliximab.
Q. What are the realities of life with a permanent ostomy? How do people experience and deal with physical, emotional changes? I have not been able to find much info, and only people that have had temporary, reversed or Jpouched.
A. TThe best thing to do is talk to someone who has had a permanent ostomy. Some local CCFA chapters offer “Power of two” programs to allow you to be paired up with other volunteer patients with inflammatory bowel disease who have gone similar experiences as you. If this is not an option at your local CCFA chapter, other options are the CCFA Community website ( and the United Ostomy Foundation ( where you can find support groups and other resources.
Q. Is it possible to consider getting pregnant if you have a permanent ostomy?
A. TYes, it is. There is some potential for reduced ability to conceive after having had surgery, however, it definitely an option. Be sure to discuss the possibility with your OB/GYN and gastroenterologist prior to getting pregnant.
Q. My daughter is away at college and is sexually active – she is on a biologic therapy for CD. Would going on birth control pills affect her medication or vice versa?
A. TThere is no evidence that oral contraceptives have any effect on biologics. It is important that young women on oral contraceptives not smoke, and certainly with Crohn’s disease these patients should not smoke.
Q. I usually go to follow-up appointments with one of my parents. However, this time, my parents can't get off of work.I am nervous because it's my first follow-up appointment without a parent to help me understand what the doctor is discussing. What kind of questions should I ask at this follow-up appointment?
A. TI think it’s great you get a chance to go to an appointment by yourself – it’s good practice. First, think about any questions you might have for your doctor before you even go to the clinic. Do you have any questions about any symptoms, medications you’re taking (including over-the-counter medications), diet, or life with IBD in general? Or is there something you heard or read about IBD and you want to know if it’s true? Write them down and take them with you to the appointment. It’s so easy to forget your questions when you’re actually in the clinic. Next, consider taking a friend with you. It can get overwhelming when you’re getting a lot of information from the doctor, and sometimes you’re thinking about it all and how it’s going to affect your life, and you’re not really hearing everything your doctor is saying. Your friend can help make sure you hear and understand everything. You or your friend can take notes during the appointment, too. You know your parents are going to want to know everything the doctor said, so taking notes is a good idea! If you don’t understand something your doctor is saying, it’s okay to ask him or her to explain. It’s your doctor’s job to help you understand. You can say, “I’m not sure what you mean when you say…” or “Can you explain that a little more? I’m not sure if I totally get it.” Check out CCFA’s brochures to get additional questions that you may want to ask your doctor ( At the end of the appointment, it’s really helpful to sum up what you and the doctor talked about. That way you can make sure you know what’s going on.
Q. I have a very active 14 month old girl. When I am in a flare and feel drained, sick, and tired, my daughter and I both seem to have a hard time coping with the lifestyle changes. We are very active, so when I get sick, she has a very hard time adjusting to the "new" mommy that just bounces between the couch and the bathroom all day and I have a hard time adjusting to the "new" relationship that I have to have with her. What coping tactics do you recommend for raising children and having IBD?
A. TIt certainly is difficult to be the mom you want to be when you aren’t feeling well. Your daughter might initially be confused about why her “new” mommy is spending so much time on the couch and in the bathroom, but developing special routines for couch times will help her differentiate the active times from the less active ones. She’ll learn to adjust to both situations, both of which she’s going to encounter in other areas of her life too. You can have special toys, books, coloring books, videos etc. that only come out when you’re not feeling well. The key here is to bring these special things out ONLY during these times, to keep them special and engaging. You can occasionally add to this collection to keep it fresh too, but there’s no need to buy an entire new set of toys. You can also designate certain times during the day as “play alone times” in which she plays by herself. Given her age and usual activity level, these play times might need to be short initially, but they can be gradually lengthened. It’s very helpful to use a large, dial-type kitchen timer to set the amount of play time so your daughter can have a sense of how much time she has for “play alone time.” Give yourself a break, too. Everyone has less patience when they aren’t feeling well. This is definitely a time to ask friends and relatives to help out by taking your daughter for a couple of hours.
Q. My 15 year old son was diagnosed in Oct 2010 with Crohn’s. He has become very angry and withdrawn. Is this normal behavior when someone is diagnosed with a major disease? How can I help him get over the being angry and help him start to socialize with his friends again?
A. TMental health issues, for lack of a better name to describe them, are common in adolescents diagnosed with Crohn’s disease. Talking to your son’s doctor about avenues of help from psychologists, to social workers, to support groups and others can prove to be very helpful to your son. CCFA’s Camp Oasis is another good example. You, too, should seek out a parent support group for assistance in coping with this. Thankfully, and much of this thanks in part goes to the CCFA, there are more opportunities for help than ever before, including information on the website, website, and others. I wish you luck in this endeavor.
Q. I have a college age daughter w/Crohn’s disease who has been in remission for about a year. She recently started taking birth control pills. Could the birth control pills contribute to flare ups. Is there a particular pill she should be taking or should she avoid the pill completely?
A. TThere is some evidence of a relationship between birth control pills and Crohn’s disease, but studies have shown mixed results so the effects are probably minimal. In other words, the risk of a flare-up from the pill is very small. Most women with Crohn’s disease are advised to use a low estrogen formulation of the pill.
Q. I was diagnosed at 76 with UC. I have tried every medication that has not worked. I’m 79 now and my doctor wants to try a biologic. Are biologic therapies riskier for older patients than for younger patients?
A. TThe biologic therapies all result in a weakened immune system and therefore an increased risk of infections. These drugs can be used safely in some elderly patients, but we generally use them more cautiously because of increased concern for the development of a serious infection.
Q. I started the testing process that resulted in my Crohn's diagnosis in November. I went to my GYN in late Oct. with some complaints (discharge - not yeast, pain with intercourse) and am wondering how to tell if it is related to Crohn's or just coincidence?
A. TPain with intercourse could be due to Crohn’s disease. You will want to work with your GI doctor and gyn to determine whether inflammation or a complication of Crohn’s is causing this, and treatments to help.
Q. My husband was diagnosed 29 years ago with Crohn's and he has a very strong family history. The doctors are saying that he has a very aggressive type of Crohn's and I am wondering if there was anything that our children should be doing. I know that there has been some genetic work done, but as far as I know there is not any treatment to help prevent them from getting Crohn's.
A. TYou are right. With a family history, there is a chance that one of your children may develop Crohns. However, the chance is higher that they won’t. At this point, we don’t have any changes in diet or other factors which you could use to try to reduce this risk.
Q. What is the effectiveness and safety rates of immunomodulators and biologic drugs prescribed for infants and toddlers?
A. TThe effectiveness and safety rates for immunomodulators and biologic drugs prescribed for infants and toddlers with IBD has not been tested in formal clinical trials. However, in practice both the effectiveness and safety of these medications appears to be similar to that experienced by older children and teenagers. It is important to judge the risks and benefits of these medications for your child together with your child’s doctor.
Q. I am a vegetarian. What sorts of foods can I eat during a flare that will provide me with protein and nutrients, but still be soothing and allow for healing?
A. TIf you eat eggs, this would be a well tolerated protein source during a flare. If you are able to tolerate milk products, then milk, low-fat and/or hard cheeses, and yogurt are all good sources of protein and other nutrients. Additionally, peanut butter (or other nut butters) and tofu should be well tolerated protein sources.
Q. Is it true that colitis gets less severe as you get older? I have heard from my doctor of some patients' colitis being "burned out" and no longer having flares. Could this be due to a naturally weaker immune system as people get older?
A. TWe know that as people get older that the immune system “burns out”. However, there are some studies that suggest that older patients have worse disease because they are not treated as aggressively or because of other health conditions. Some patients do experience a burn out of their disease, but at this time that is not the expectation.
Q. My child has Crohn's disease and is much smaller than his classmates. How can we help him achieve his full growth potential?
A. TReduced growth in children with Crohn’s disease is due to a combination of reduced nutritional intake, and inflammation from the Crohn’s itself. An approach which ensures that all of your childs nutritional needs are being met, and medications which reduce the inflammation, will be most likely to help him achieve his full growth potential. This may include providing supplemental nutrition through a formula delivered through a naso-gastric tube for a period of time. In some cases, if growth is not achieved with additional nutrition and Crohns medications to reduce inflammation, the addition of human growth hormone may be helpful.

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Treatment Section

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.
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).
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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 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.
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.
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).
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.
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).
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.”
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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 for ongoing trials. I could not find any ongoing trials for this at this time.
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
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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 natur