Crohn's & Colitis Community

Expert Q&A Library

Welcome to our Expert Q&A Library. Here you’ll find IBD questions submitted by people like you, and answers provided by our panel of IBD experts.

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Most Recent

Disease Education - March 2013
Q. Is there a connection between IBD and other inflammation-related disorders—specifically chronic sinusitis (with polyps) and/or Hashimoto's disorder?
A. There is clustering or a connection between inflammatory bowel disease and immune-mediated and inflammation-related disorders. Well-described associations include arthritis (inflammation of the joints), spondyloarthropathy (inflammation of the back), psoriasis (inflammation of the skin), primary sclerosing cholangitis (inflammation of the bile ducts) and episcleritis (inflammation of the white part of the eye) to name a few. More specifically, there is no clear connection between IBD and chronic sinusitis, which often is due to chronic infection and poor drainage of the sinus passages due to allergies or anatomic issues. There is no clear connection between IBD and Hashimoto's thyroiditis based on a large study of over 10,000 people with IBD and 50,000 without IBD.
Disease Education - March 2013
Q. Will the severity of my flares remain the same for the most part?
A. Several studies have described the natural history of inflammatory bowel disease and whether the severity of flares (inflammation) remain the same for the most part or get better. The most consistent observation is that for most people, flares come and go. There are also groups that start severe and stay severe and some that have mild symptoms the entire time. Thus, while it is hard to predict in any one person, it is common for people to enter a pattern (comes and goes, mostly moderate-severe with little relief, and mild). Fortunately, these patterns of flares can often be broken with appropriate medical therapy. Instead of resigning oneself to chronic symptoms of gut inflammation (pain, diarrhea) and a pattern of severity and flares, it is important to speak with your physician or health care professional and ask what options are available to break the pattern of severity and flares.
Treatment - March 2013
Q. After a proctocolectomy surgery is your immune system weakened?
A. No, proctocolectomy surgery (removal of the colon and rectum) does not weaken the immune system.
Treatment - March 2013
Q. Is BCIR surgery an option for Ulcerative Colitis patients?
A. The BCIR looks like a traditional ileostomy, with a stoma or opening in the skin. The difference is that instead of storing the waste on the outside with a colostomy bag, the waste is hidden in the abdominal cavity in a small pouch created from the small intestine. Waste is removed several times per day by placing a small catheter (tube) through the stoma to drain the pouch. The Barnett Continent Ileostomy Reservoir (BCIR) surgery, or Barnett version of the Koch pouch, can be an option, but is not a common surgery for ulcerative colitis patients. As always, you should discuss this procedure as well as more common options (traditional ileostomy, J-pouch) with your surgeon to determine the advantages and disadvantages of each and what surgery is recommended for your specific situation.
Treatment - March 2013
Q. My 11-yr old daughter recently started sulfasalazine in combination with infliximab. She has lost most of her eyelashes. Could it be the drug combination or another issue?
A. Loss of eyelashes is not a common or well-described side effect of sulfasalazine or infliximab. Loss of eyelashes can be considered a form of hair loss. Hair thinning or hair loss can occur during physiologically stressful situations such as IBD flares and sometimes the drugs used to treat the flare can be incorrectly attributed as the cause. Other causes of loss of eyelashes include blepharitis or swelling of the eyelid as well as more systemic processes such as alopecia areata where hair in lost is many other places of the body. Given the description that most of the eyelashes have been lost and the need to distinguish between stress from disease, drug effect, eye issues, or more widespread loss of hair, it is important to let your daughter's gastroenterologist know about this situation and to see a dermatologist and possibly an ophthalmologist (eye doctor) if there are any lid findings.
Diet / Lifestyle - March 2013
Q. I was recently diagnosed with UC in October of 2011. I have been on and off prednisone and we still haven't found a happy medium to all the medicines. I am off of the prednisone now and have been for a few months, but my weight is continuing to fluctuate. I am a 20 year old female and I eat relatively healthy and stay away from the foods that upset my UC. How do I control this weight problem?
A. Many people will recognize weight gain as a common side effect of prednisone. Many will also recognize weight loss as a side effect of significant inflammation from IBD due to protein loss from severe inflammation or avoidance of foods that worsen IBD symptoms (pain, diarrhea). Fluctuation in weight becomes a more challenging problem to pinpoint as it is common in society and many people without IBD have problems with fluctuating weight. So the question is whether this is a slow to resolve residual effect of the body trying to gain equilibrium after predictable cycles of inflammation (weight loss) and prednisone (weight gain) for over a year, an unrelated medical problems, such a thyroid problem, or a problem unrelated to IBD that is common in society, which is weight fluctuations, commonly brought on by stress, altered sleep cycles, and cycles of dieting and return to comfortable eating habits. Although most likely the solution to this problem is time with the good eating habits reported above finally "winning" as the body equilibrates after a year of inflammation and prednisone, it is important to speak with your doctor to exclude medical issues such as thyroid problems and to review your diet and lifestyle choices that affect weight.

Diet/Lifestyle

March 2013
Q.I was recently diagnosed with UC in October of 2011. I have been on and off prednisone and we still haven't found a happy medium to all the medicines. I am off of the prednisone now and have been for a few months, but my weight is continuing to fluctuate. I am a 20 year old female and I eat relatively healthy and stay away from the foods that upset my UC. How do I control this weight problem?
A. Many people will recognize weight gain as a common side effect of prednisone. Many will also recognize weight loss as a side effect of significant inflammation from IBD due to protein loss from severe inflammation or avoidance of foods that worsen IBD symptoms (pain, diarrhea). Fluctuation in weight becomes a more challenging problem to pinpoint as it is common in society and many people without IBD have problems with fluctuating weight. So the question is whether this is a slow to resolve residual effect of the body trying to gain equilibrium after predictable cycles of inflammation (weight loss) and prednisone (weight gain) for over a year, an unrelated medical problems, such a thyroid problem, or a problem unrelated to IBD that is common in society, which is weight fluctuations, commonly brought on by stress, altered sleep cycles, and cycles of dieting and return to comfortable eating habits. Although most likely the solution to this problem is time with the good eating habits reported above finally "winning" as the body equilibrates after a year of inflammation and prednisone, it is important to speak with your doctor to exclude medical issues such as thyroid problems and to review your diet and lifestyle choices that affect weight.
February 2013
Q.I have been going through some rough flares recently and am so tired all the time. I used to go to work with initiative to accomplish goals and be successful in what I do. Now I just do not care. I know that I am blessed to have a job, but struggling with this disease has taken away my drive for work, exercising, and even spending time with my family. Do you have any advice on how to get the drive back?
A. Fatigue is a very common problem in patients with IBD, both during disease flares but also during times of remission. This fatigue can come with poor sleep, low energy, and depression, if symptoms become severe enough. Sleep disturbance is common in patients with IBD, and there are several potential reasons for this, one of which is that the inflammatory substances in the gut may also have an impact on the brain. Medications used to treat IBD affect sleep, especially steroids. If poor sleep is contributing to the symptoms you describe, there are things you can try to get better sleep. These techniques, sometimes called ‘sleep hygiene,’ include setting a specific schedule and being very consistent in sleep and wake times. People who sleep the best often engage in relaxing activities before bedtime, rather than watching violent TV or movies that can arouse people. It is important to get all of your sleep at one time, and you should avoid napping during the day, especially if you find yourself tossing and turning at night. People are encouraged to avoid alcohol, as this can worsen the quality of sleep and make it less refreshing. When “drive” is low, a jump start is often needed, and the longer you remain ‘stuck in a rut,’ the harder it can be to break out. However, just like bad habits can breed more bad habits, good habits can lead to more good habits and help you to break out of your low motivated ‘funk’. Scheduling your day (and sticking to it!) can be very useful with this, and I would encourage you to detail your activities for the week. Be very specific and build enjoyable things into your schedule (exercise, time with family), as well as things that you have to do (work). The longer you can stick to this routine, the easier things become. Sometimes, low motivation and poor sleep may be signs of depression or other mental illness, so if your symptoms are going on for more than two weeks, it is worth discussing with your physician as you may require more help
February 2013
Q.My wife just up and left me 4 weeks ago and my stress level is at an all time high. I feel like I'm having a breakdown and my stomach has been in constant turmoil. I tried now for 4 weeks to tough it out and let myself heal emotionally the natural way, but it just isn't working. Any advice would be greatly appreciated on how to deal with the stress and managing my Crohn’s disease.
A. Life stress, especially the loss of a relationship, has been linked with worsening gastrointestinal symptoms in patients with IBD. This is thought to be due to the strong connection between the gut and brain, especially the areas of the brain that regulate our emotions. Though I’m sorry to hear about your recent break-up, there are several things you can do to decrease stress and help yourself feel better during this challenging time. First, it is very important to get back to activities that are enjoyable for you, even if it is difficult to force yourself to do them. When we relax or find pleasant diversions, it gives our brains a rest from processing the stress. Taking 10 minutes a day to focus on relaxation can be effective in decreasing stress. One breathing exercise involves deep slow breathing…counting to 4 while breathing in through your mouth, holding it for 4 counts, and letting the breath out through your mouth over 8 counts for 10 breath cycles can decrease stress. Second, finding the company of trusted friends is especially important when dealing with stress, as positive social interactions have been shown to decrease the stress response that affects the gut. Finally, if stress is chronic or extreme, it can through a switch in the brain causing an emotional reaction to become a more clinically significant depression or anxiety disorder which can benefit from the services of a professional therapist or counselor. Letting your gastroenterologist know about your life stress is a good place to begin.
February 2013
Q.I was recently diagnosed with Crohn's although I've probably had it for years and didn't know it. Being told you have what is a lifelong disease that will never be cured, and will likely only get worse and may lead to surgical removal of parts of your intestines is really like being continually smacked in the face. How exactly do you accept that, I mean truly accept it? Where do I start?
A. The first place to start is to give yourself permission to have a reaction and to know that it is normal to have a range of responses when diagnosed with Crohn’s disease, something unexpected and life-altering. It is natural to go through some type of grieving process about the loss of health, similar to how people react to the loss of a loved one. The responses involved vary among individuals. Some people get sad, others get angry but there is no right or wrong way to grieve. What is important is that you recognize your feelings and remind yourself about other difficult challenges you have adjusted to in the past. Although the passage of time is the best healer, there are active steps that have helped others with Crohn’s disease accept their diagnosis. Talking about it with others is a good first step whether it is good friends or family or through a CCFA support group or activity. Some patients find it helpful to journal about their experiences as a way to work through the emotions. Others find it useful to focus on other aspects of their lives that they can control. For example, thinking about three positive things in your life or three small tasks or steps you will achieve that day. Finally, others have found that “finding the silver lining” about a situation (i.e., something positive or something that could be even worse by comparison) helps them feel better. In fact, many studies show that optimistic thinking can positively influence how well your body copes with the disease and how well your immune system responds to the medications or your gastrointestinal tract heals from surgery.
February 2013
Q.I play tennis 3 times per week. Will I be able to keep playing the same as I used to now that I have Crohn's disease?
A. When the Crohn’s disease is in remission you should be able to play tennis as before. It is best to listen to your body. During times of increased disease activity you may have increased fatigue and be unable to do everything that you had done previously.
December 2012
Q.I have Crohn's and am almost always extremely dehydrated - eyes so dry I can't blink, finger tips puckery, mouth dry no matter how much water I drink. Is this from Crohn's? What should I do?
A. Dehydration can be caused by a number of disorders and can also be associated with electrolyte imbalances. We lose water through many routes including moisture in our breath as well as water in our stool, sweat, and urine. It is important to maintain an appropriate intake of fluids such that you urinate at least 4-6 times each day. You can also look at the color of your urine. If your urine is a light yellow to clear, this can indicate you are adequately hydrated. Some patients with Crohn’s disease suffer from watery diarrhea that diminishes their water and electrolytes. These persons should work with their physicians to manage the diarrhea, but they should also replenish their losses by drinking sports drinks that contain both water and vital electrolytes such as sodium and potassium.
November 2012
Q.Should I get a flu shot when on a biologic?
A. It is recommended that patients on immune suppressants and/or biologic therapy receive a flu shot annually. However, patients should not receive the live virus vaccine (nasal spray vaccine). In addition, you should not receive the flu vaccine if any of the following apply to you: a. Severe allergic reaction to eggs b. Severe allergic reaction to the flu vaccine c. History of Guillain-Barre syndrome d. Sick with fever at the time of vaccination
October 2012
Q.I am currently having a flare of Crohn’s colitis with swollen and very painful joints as well as erythema nodosum. I am starting prednisone, methotrexate and ciprofloxacin to go along with asacol sulfasalazine. Can you explain how these will help? Also, my job demands that I’m on my feet for 12 hour shifts. How much work should I miss if any at all?
A. Having symptoms of Crohn’s disease outside the gut itself is a very common scenario for many patients. For many, joint disease and swollen joints can be more debilitating than the colitis symptoms itself. Furthermore, erythema nodosum (red lesions often occurring on the shins) are very painful. It sounds like your doctor is trying to combine a variety of medications to treat the Crohn’s disease, including immunosuppressives (prednisone), immunomodulators (methotrexate) that will hopefully be able to get you off the prednisone quickly and prevent you from having to go back on them, antibiotics (ciprofloxacin) to decrease bacteria which may be inciting some of the Crohn’s disease, as well as mesalamines to reduce superficial inflammation. However, the mesalamines have not been shown to be robustly effective in Crohn’s disease. Sulfasalazine has some anti-arthritic effects, which may work through the sulfapyridine antibiotic component of the medication. You and your doctor should have a frank conversation about what the timeline to recovery might be, and how this will impact your ability to go to work.
October 2012
Q.What are your thoughts on trying a gluten-free diet for IBD patients?
A. Trying a gluten free diet is an option for IBD patients, but what the research community knows at this juncture is that there are no special diets for IBD. The patient’s diet may affect the symptoms of IBD, but not the inflammation. A gluten-free diet excludes grains that contain the protein gluten. Gluten-free is used primarily in patients with celiac disease. Yet, there is talk amongst the IBD patient community that anecdotally some have had some positive results from avoiding gluten in their diet. One can try avoiding gluten-based foods for a couple of weeks—start using a food journal and document any possible physical positive or negative results from the change in diet. If the positives outweigh the negatives, then perhaps a gluten-free diet may be a step in the right direction towards a flare free life for some. But studying gluten-free or any other diet regimen in relation to IBD has been limited due to most studies are small, resulting in anecdotal outcomes. Diet may have an impact on the disease, but research has been inadequate to show how the different mechanisms proposed affect the gut bacteria and the immune system.

Disease Education

March 2013
Q. Is there a connection between IBD and other inflammation-related disorders—specifically chronic sinusitis (with polyps) and/or Hashimoto's disorder?
A. There is clustering or a connection between inflammatory bowel disease and immune-mediated and inflammation-related disorders. Well-described associations include arthritis (inflammation of the joints), spondyloarthropathy (inflammation of the back), psoriasis (inflammation of the skin), primary sclerosing cholangitis (inflammation of the bile ducts) and episcleritis (inflammation of the white part of the eye) to name a few. More specifically, there is no clear connection between IBD and chronic sinusitis, which often is due to chronic infection and poor drainage of the sinus passages due to allergies or anatomic issues. There is no clear connection between IBD and Hashimoto's thyroiditis based on a large study of over 10,000 people with IBD and 50,000 without IBD.
March 2013
Q. Will the severity of my flares remain the same for the most part?
A. Several studies have described the natural history of inflammatory bowel disease and whether the severity of flares (inflammation) remain the same for the most part or get better. The most consistent observation is that for most people, flares come and go. There are also groups that start severe and stay severe and some that have mild symptoms the entire time. Thus, while it is hard to predict in any one person, it is common for people to enter a pattern (comes and goes, mostly moderate-severe with little relief, and mild). Fortunately, these patterns of flares can often be broken with appropriate medical therapy. Instead of resigning oneself to chronic symptoms of gut inflammation (pain, diarrhea) and a pattern of severity and flares, it is important to speak with your physician or health care professional and ask what options are available to break the pattern of severity and flares.
February 2013
Q. My doctor tells me that I have a combination of both Crohn's Disease and Ulcerative Colitis which he is labeling "Crohn's Colitis." Is this possible?
A. Yes, approximately 15% of the time we cannot tell if the inflammation is due to ulcerative colitis or Crohn’s colitis and as such is termed indeterminate colitis.
January 2013
Q. Is there any guidance for the frequency of having a colonoscopy for someone with long standing Crohn's (30 years)?
A. The major governing organizations in the field of gastroenterology (American Gastroenterological Association and American College of Gastroenterology) have developed recommendations for patients who have ulcerative colitis (UC), with similar guidelines for individuals who have Crohn’s disease involving the colon. These guidelines were developed due to increased risk for colorectal cancer in patients living with ulcerative colitis and Crohn’s colitis and are based on the extent, duration, and age of disease onset. Individuals who have pancolitis (colonic inflammation in all or most of the colon) should have a surveillance colonoscopy 8 years after diagnosis, and individuals who have left-sided colitis should have a surveillance colonoscopy 15 years after diagnosis. After this initial surveillance colonoscopy, colonoscopy should be repeated every 1-3 years. If a patient has both colitis and primary sclerosing cholangitis (PSC), it is recommended that they have a colonoscopy annually after initial diagnosis. It is important to have this discussion with your gastroenterologist since guidelines will need to be adjusted based on how the individual is doing. There may be additional things to consider depending on the individual patient, including the degree of inflammation in the colon, any prior history of pre-cancerous changes in the colon prior to, or during diagnosis, and family history.
January 2013
Q. Could stress cause my daughter to develop IBD or an ulcer? About six months ago she started having "stabbing pains like needles" in her stomach. We have taken her to the doctor repeatedly, he ran blood work, but said everything is "normal." She has weight loss, repeated illnesses, lowered immune. What tests can you recommend?
A. We often blame stress in the development of peptic ulcer disease by increasing the amount of acid produced in the stomach. However, it has been shown that most ulcers in the upper GI tract (stomach/duodenum) are caused either by a specific type of bacteria known as Helicobacter pylori (Helicobacter pylori) or by non-steroidal anti-inflammatory medications (NSAIDS) such as ibuprofen. A person with Crohn’s disease also could develop inflammation and associated ulcers within the entire gastrointestinal (GI) tract, including the stomach and duodenum. The evidence that directly links stress and ulcers is not as clear. Laboratory studies (i.e. blood and stool tests) can be helpful to check for factors like ongoing inflammation and to evaluate for other things that may feel similar to ulcer-type pain (like inflammation in the pancreas or gallbladder). However, if your daughter already has established IBD, and recently experienced weight loss and other symptoms they may be consistent with an IBD flare, additional testing including endoscopy, additional blood work, and stool tests, may need to be done to better evaluate the intestinal tract. These concerns should be discussed with your primary gastroenterologist to formulate a plan to determine whether your daughter’s symptoms are directly related to her IBD or another medical issue separate from this.
January 2013
Q. What are the chances of being misdiagnosed with Ulcerative Colitis (UC) and actually having Crohn's disease (CD)? I recently had my colon removed and had a J-pouch created. What are the symptoms to look out for if it is actually Crohn's?
A. When an individual has the “classic” changes associated with CD, including involvement of the GI tract outside of the colon, especially in a part of the small intestine closest to the colon known as the ileum, patchy areas of disease/inflammation known as “skip lesions” (normal, non-inflamed areas of intestine alternating with inflamed/diseased areas), or involvement of the perianal area, the diagnosis of CD is much more clear. Furthermore, there are certain changes when pathologists look under the microscope to look at the biopsies from colonoscopy which may be consistent with CD, and certain types of CD (structuring, penetrating – fistulas) which will be seen either by endoscopy, radiographic studies (i.e. MRI enterography, upper GI series with small bowel follow through), or at surgery. A patient typically is diagnosed with UC when there is continuous inflammation within the affected colon without involvement in the GI tract outside of the colon (by endoscopy, PillCam study, and radiographic studies), and biopsies show chronic inflammation without the microscopic findings associated with CD. In patients who have to undergo a colectomy (removal of the colon), the removed colon is sent to the pathologist to determine whether the patterns of inflammation or more consistent with UC versus Crohn’s colitis. Even with the rigorous and careful evaluation by your medical team before and after the colectomy, we find that a percentage of patients originally diagnosed with UC actually have CD. Follow-up care with your gastroenterologist and surgeon is important. If you have any symptoms of cramping, diarrhea, bleeding, weight loss, or pain with passing bowel movements, it is important to let them know. Having these type of symptoms does not mean you necessarily have CD rather than UC, but is something that should be investigated to make sure that there are no ongoing issues like pouchitis (inflammation of your J pouch), infection, or issues with the surgical sites.
December 2012
Q. When my Crohn's disease is flaring, I shake, or vibrate so bad it wakes me up. I'm not diabetic. Is this from Crohn's?
A. Chills or rigors are episodes of shaking or shivering that can be associated with a fever. It is an automatic response that occurs for a variety of reasons, and is often a sign that suggests inflammation or infection such as that seen with active Crohn’s disease. Shivering involuntarily occurs when someone feels cold and acts to raise the body’s temperature. The trigger point at which this response occurs is set in the brain and has been described as an internal thermostat. With inflammation or infection, chemicals called pyrogens reset the trigger temperature. This in turn tricks the body into feeling cold and shaking occurs to raise the body’s temperature.
December 2012
Q. I was diagnosed with Crohn's about a year ago and by most markers/symptoms I'm in remission yet continue to have periods of fatigue that I didn't have prior to my diagnosis. Is it common/normal to struggle with tiredness even though in every other way I'm fully in remission?
A. Fatigue is a symptom commonly seen in patients with Crohn's disease symptom and can exist for several reasons. While a flare of Crohn’s disease can cause someone to feel fatigued as his or her body is fighting inflammation, fatigue can also occur when the disease is in remission for other reasons such as anemia, depression, or medications. Anemia linked to the decreased production or gradual loss of red blood cells is commonly seen in patients with Crohn’s disease and can lead to fatigue. Chronic diseases such as Crohn’s disease are also often accompanied by emotions such as sadness or depression, and these disorders can cause fatigue. Lastly, fatigue can be a side effect associated with certain medications used to treat Crohn’s disease such as methotrexate, sulfasalazine, and steroids. Any feelings of fatigue should be discussed with a physician so he or she can look for the cause and recommend appropriate treatment. It is also suggested that patients with fatigue eat a healthy diet, exercise on a regular basis, and get an appropriate amount of sleep each night.
December 2012
Q. What is cause and treatment for black stool?
A. Black stools can occur for a variety of reasons in patients with Crohn’s disease and appropriate treatment depends upon the cause. Certain medications such as iron and bismuth or particular foods that are blue, black, or green colored can also cause black stools. More importantly, black stools can occur because of slow bleeding from inflamed bowel lining; the red blood turns the stool black as bacteria in the stool interact with the blood. The source of bleeding is usually located in the stomach, small intestine, or right colon. Bleeding closer to the rectum or anus more commonly causes the stool to be red instead of black. It is important to discriminate between black stools caused by medications and foods versus bleeding from the bowel wall. This symptom, especially if it is new in onset and persistent, should be reported to a physician so that proper evaluation and treatment can be initiated.

Special Poputations

February 2013
Q.I am a 54 year old male who was just diagnosed with "mild" Crohn's ileitis. Most of the people I know or who write online have been young adults when diagnosed. How does Crohn's differ when it is diagnosed in an older adult? Is there a different progression?
A. The disease has two peaks: the first in in the teens and twentys and the second peak is in the mid 50’s. To learn moreabout special considerations for older adults, please check out CCFA’s IBD and Older Adults Fact Sheet: http://www.ccfa.org/resources/ibd-and-older-adults.html.
December 2012
Q.Should recurring C Diff in a child be a cause for concern? Say recurring 3 times in 2 months and after taking antibiotics?
A. Clostridium difficile is a bacteria that can cause inflammation and diarrhea in pediatric or adult patients without or with inflammatory bowel disease. Although proper studies are still lacking, some evidence suggests that people with inflammatory bowel disease are at greater risk for infection with Clostridium difficile than those without disease. The initial treatment of Clostridium difficile in children can fail more than one-half of the time, regardless of the treatment. This failure might occur because the bacteria is resistant to standard therapy or the patient is a carrier of the bacteria. Carriers can be asymptomatic for months without treatment of the bacteria, but it is unclear whether they will remain so if immunomodulator or biologic agent therapy is initiated for the inflammatory bowel disease.
December 2012
Q.My daughter has Crohn's disease and she won't have a bowel movement for a couple of days and then when she does it is very painful and hard to get out. The stool is soft in consistency and is sometimes flat. We have tried laxatives and stool softeners but they just seem to make her go more often, but still painful and difficult to get out. She had normal bms after an increased dose of infliximab, but that only lasted 2 1/2 weeks (tests show no antibodies to the biologic). What can we try?
A. Crohn’s disease can affect any portion of the intestine from the roof of the mouth to the skin around the bottom, which is also known as the anus. Difficult or painful bowel motions can be caused by disease-related disorders such as narrowing, fissures, or ulcers of the anus. Infliximab can be beneficial in treating some patients with disease of this area. Any patient with these symptoms should generally be thoroughly examined and this examination must frequently occur in the operating room because it is too uncomfortable to perform in another setting. Further treatment would be based upon the findings of this examination.
November 2012
Q.My 11 year old daughter is currently taking sulfasalazine and 6-MP to maintain remission for her UC. She is experiencing frequent debilitating headaches. We have tried several headache preventatives given by a neurologist and is currently taking propranolol. Could the sulfasalazine be causing her headaches? If so, what is our alternative to keeping her in remission? Could headaches go hand-in-hand with UC or Crohn's?
A. More than 10% of patients treated with sulfasalazine experience headaches with treatment. I would suggest that you meet with the provider that prescribed the sulfasalazine to see if a drug “holiday” off of the sulfasalazine is reasonable. If the headaches improve or go away off of the sulfasalazine, the headaches may have been related to the medication. To test this further, you could restart the sulfasalazine after a treatment “holiday” to see if the headaches recur with retreatment.
November 2012
Q.My insurance has denied my monthly natalizumab treatment. The appeal process is starting. Any ideas on making my appeal to pay for the FDA approved therapy?
A. I would suggest that you ask your medical provider to appeal the denial. Typically, the medical provider will draft a letter describing the medical necessity of the treatment and will provide supporting documentation to support use of the drug. If the therapy is still denied, often a peer-to-peer review can be scheduled between your provider and one of the medical directors of the insurance company. In most cases, the issue is resolved by one of these mechanisms. CCFA offers sample appeal letters; visit the Community Resource Center (http://www.ccfacommunity.org/ResourceCenter.aspx) for more information.
October 2012
Q.What is the incidence of colon cancer for colitis patients?
A. The risk for developing colorectal cancer (CRC) increases with longer duration of colitis. CRC is rarely encountered in patients who have had colitis for less than 7 years; thereafter, the risk increases at a rate of approximately 0.5%–1.0% per year. Factors that influence the risk of developing dysplasia (pre-cancer) and CRC itself include duration of disease, extent of disease, severity of disease, family history of CRC, and an associated liver condition called Primary Sclerosing Cholangitis. There have been many studies looking at whether specific medicines can reduce the risk of dysplasia and many have been conflicting. Treating the disease early and preventing severe bouts of inflammation, however, may be most important overall.
September 2012
Q.How common is the use of methotrexate combined with infliximab to treat children? My nine year old just had small bowel resection due to a stricture - previously was on 6mp. Do studies show that methotrexate significantly decreases the chance of developing the antibodies to infliximab? Does the benefit outweigh risk?
A. Methotrexate is not used commonly to treat children with Crohn’s. 6MP is much more commonly used. Methotrexate does decrease the formation of antibodies to infliximab, probably increasing the effectiveness of infliximab. The benefits versus risk depend on the individual situation and would be best discussed with a pediatric gastroenterologist.
September 2012
Q.Is it okay to continue medical treatment of IBD during pregnancy?
A. Yes, most treatments can and often should be continued during pregnancy. This includes mesalamine (5-ASA), azathioprine/6MP and biologics such as infliximab, adalimumab and certolizumab. Most IBD doctors feel the risk of IBD flare during pregnancy, if medication is stopped, is worse than the risk of the medications themselves. There are, of course, some medications that should not be taken during pregnancy. Discuss your treatment with both your IBD physician and your obstetrician. They should communicate with each other if there is disagreement. There is also a discussion of pregnancy issues at CCFA.org.
August 2012
Q.I am a female Crohn's patient was told by my GI that we are prone to clots when flaring as the blood tends to become sticky when inflammation is present. He told me that I'm to avoid any kind of hormones (pill, patch, IUD, implant) for family planning as it will increase the chances of throwing a DVT/PE. Should gynecologists still prescribe them to females w/IBD under any circumstance?
A. This is a great question, and I am not sure if there is an “absolute, under any circumstance” kind of answer to this. It is correct that patients with IBD (both Crohn’s and ulcerative colitis) are at increased risk for clots. Multiple reasons for this have been proposed, and while it is true that the risk is probably higher when active inflammation is present, a small amount of risk persists even when inflammation is controlled. Hormonal contraception as you pointed out also increases the risk for a clot as well. That being said, the question of whether the risk of developing a clot is additive for women with IBD taking hormonal contraception has not been specifically studied as far as I’m aware. Having said that, the decision of whether to take hormonal contraception is an individual one and needs to take in to account previous personal and family history of clots or known clotting disorders, smoking status, disease activity and weigh this against the risk of an unplanned pregnancy. An honest and open discussion between you and your care providers will hopefully lead to a mutually-accepted decision.
July 2012
Q.I read an article that stated that birth control pills and hormone therapy may be linked with inflammatory bowel diseases. What is the consensus on this and should I stay on the medicine?
A. This has been a topic of great controversy. Early studies suggested that birth control pills and hormone supplements exacerbated IBD and even caused IBD. Subsequently the studies have been mixed without any conclusive result. It is my opinion that for any medication or exogenous/endogenous substance, that certain people “react” to these differently. In some, certain medications and compounds may lead to more inflammation and in others have no negative effects. Generally, I do not tell my patients taking birth control pills or hormone replacement therapy to stop these. However, if a patient notices a flare or worsening of symptoms when they take hormonal therapy, then that patient should probably avoid this and talk to their healthcare team.

Treatment

March 2013
Q.After a proctocolectomy surgery is your immune system weakened?
A. No, proctocolectomy surgery (removal of the colon and rectum) does not weaken the immune system.
March 2013
Q.Is BCIR surgery an option for Ulcerative Colitis patients?
A. The BCIR looks like a traditional ileostomy, with a stoma or opening in the skin. The difference is that instead of storing the waste on the outside with a colostomy bag, the waste is hidden in the abdominal cavity in a small pouch created from the small intestine. Waste is removed several times per day by placing a small catheter (tube) through the stoma to drain the pouch. The Barnett Continent Ileostomy Reservoir (BCIR) surgery, or Barnett version of the Koch pouch, can be an option, but is not a common surgery for ulcerative colitis patients. As always, you should discuss this procedure as well as more common options (traditional ileostomy, J-pouch) with your surgeon to determine the advantages and disadvantages of each and what surgery is recommended for your specific situation.
March 2013
Q.My 11-yr old daughter recently started sulfasalazine in combination with infliximab. She has lost most of her eyelashes. Could it be the drug combination or another issue?
A. Loss of eyelashes is not a common or well-described side effect of sulfasalazine or infliximab. Loss of eyelashes can be considered a form of hair loss. Hair thinning or hair loss can occur during physiologically stressful situations such as IBD flares and sometimes the drugs used to treat the flare can be incorrectly attributed as the cause. Other causes of loss of eyelashes include blepharitis or swelling of the eyelid as well as more systemic processes such as alopecia areata where hair in lost is many other places of the body. Given the description that most of the eyelashes have been lost and the need to distinguish between stress from disease, drug effect, eye issues, or more widespread loss of hair, it is important to let your daughter's gastroenterologist know about this situation and to see a dermatologist and possibly an ophthalmologist (eye doctor) if there are any lid findings.
February 2013
Q.What are the benefits of using a top-down approach versus a bottom-up approach with treatment? With what rationale do some doctors jumping straight to biologics while others leave biologics until last and try steroids and other treatment combinations first?
A. The answer is controversial. Some physicians, myself included, individualize the therapy to the disease present. If I have a patient with very active disease, or large sections involved I am apt to use the biologic agents earlier than later.
February 2013
Q.Is one of the side effects of infliximab hair loss? My daughter’s hair is falling out.
A. There have been reports on the internet of hair loss associated with infliximab use.
February 2013
Q.Have been on adalimumab for 1 year, and mercaptopurine for several years. When can I expect to stop these meds?
A. Excellent question without a good answer. Most physicians feel that once one is on a regimen that places the patient in remission that we tend to continue the medication that achieved that remission. You should discuss this further with your gastroenterologist.
January 2013
Q.I have a ileostomy bag that was supposed to be reversed after six months, but never was (had surgery in 1998). The surgeons says that I can’t get the surgery to reverse the bag cause it’s been too long of time. Is that true?
A. The issue of whether an ileostomy can be reversed is based on several features that are unique to each individual patient. These issues include the initial reason for the ileostomy and the condition of the bowel that has been unused. If the ileostomy was created because the unused bowel was diseased, the ileostomy can only be reversed if the previously diseased bowel is removed and the remaining unused bowel is healthy and functional. Alternatively, if the ileostomy was created to protect a surgical site created in previously non-diseased bowel, the ileostomy can be reversed if the remaining unused bowel is healthy and functional. In either situation, recovery from reversal of the ileostomy may be more difficult and prolonged if the ileostomy has been in place for a long period of time.
December 2012
Q.I have been on adalimumab for 2 years with great success. During this time I have gained about 30 lbs, been diagnosed with high blood pressure, and high triglycerides. Are these side effects of the adalimumab?
A. Adalimumab has been extensively used for a variety of conditions and its side effects are fairly well described. Comparing patients receiving adalimumab to those not getting adalimumab, high blood pressure occurred in 5% of people receiving the medication and 3% of the others. High lipids were seen in 7% of patients treated with adalimumab and 5% of those not using the medication. Excessive weight gain is not typically seen as a direct result of the drug.
December 2012
Q.I am 64 years old and have had Crohn’s/Colitis for 40 years. I have had a flare and am now taking 6MP with 5 mg prednisone. I feel that I am stable. Are there long term effect of continued use of either the 6MP or the 5 MG of prednisone?
A. Azathioprine and 6-mercaptopurine (6-MP) are immunomodulators that are chemically similar and generally used to maintain remission in Crohn's disease as well as ulcerative colitis. Both medications have a slow onset of action (3-6 months for full effect). Reported side effects associated with their usage include diarrhea, headache, nausea, and vomiting. Exchanging the drugs can occasionally reduce some of these reactions. Fever, joint pain, liver inflammation, mouth sores, and skin rash are unlikely to be affected by switching the medications. Less common side effects include inflammation of the pancreas, also known as pancreatitis, and bone marrow suppression that may increase the risk of infection or serious bleeding. Because of these effects, blood tests should be frequently performed to measure the impact of these drugs on the bone marrow, kidneys, and liver. Some reports have described an increased risk of lymphoma, which is a type of cancer affecting the lymph glands. However, other research has shown that for most people the extra risk is small and outweighed by the potential benefits gained from treatment. Corticosteroids similar to prednisone are naturally present in the body, but the higher than normal dosages commonly needed to control inflammation can produce undesired effects. These side effects usually disappear when the medication is reduced to normal dosage levels (Prednisone 5 mg daily) or discontinued. However, the impact of long-term steroid usage is sometimes irreversible and these changes include cataracts, diabetes, easy bruising, and glaucoma. Furthermore, the body’s natural ability to produce hydrocortisone might fail to recover when the medication is stopped after many months or years of steroid treatment.
December 2012
Q.I was diagnosed with Crohn’s just a few months ago. I took prednisone first then mesalamine, but am still experiencing symptoms. The doctor now wants to move me to biologics, but I want to move more slowly and first try increasing the dosage of the mesalamine. If that doesn't work, what would the next step be?
A. Patients with Crohn’s disease can be managed with multiple classes of medications including antibiotics, aminosalicylates (such as mesalamine), corticosteroids (such as prednisone), immunomodulators, and biologic agents. With the exception of corticosteroids, most of these medications can be prescribed on a long-term basis. Some clinicians prefer to start patients on the most mild of medications and escalate the potency of treatment only if the disease fails to respond to therapy. Others begin with the strongest drugs and then transition to lesser medications when the disease has been adequately controlled. If your disease was initially managed by a corticosteroid, but you relapsed while on an aminosalicylate, you would be a candidate for corticosteroids or biologic agents. Immunomodulators would be likely used in combination with the corticosteroids so you could be eventually weaned off the steroids and continued on the immunomodulators in order to maintain the steroid-induced remission. Disease remission achieved with biologic agents can be maintained with long-term biologic agent usage or you can be transitioned to less potent medications for long-term therapy.
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