Diet / Lifestyle
Q. I was diagnosed with Crohn's in 2003. My bowel movements for the past five years were often urgent and uncontrollable. Now I am often constipated with severe cramps. I need to "grunt" in order to have a bowel movement most of the time. I'm currently not on any medications. Does this mean I could finally be hitting remission or are there complications associated with these symptoms?
A. Crohn’s disease can have a variety of behaviors making it challenging to determine if symptoms are the result of Crohn’s or an alternative explanation. Indeed, IBD providers often will require additional tests to confidently determine the cause. In the case of new constipation with severe cramping in an individual that was managing urgent diarrhea, there are several possibilities. First, a portion of bowel affected by Crohn’s may have developed significant scarring, called a stricture, which can lead to an intestinal blockage making it difficult to pass stool or even gas. Second, excessive use of anti-diarrheal medications (like Imodium) for symptom control may cause constipation. Finally, patients can develop constipation-predominant irritable bowel syndrome (IBS) which can cause these symptoms. You should notify your physician of these symptoms; an imaging test and other diagnostics may be ordered. As an additional note, in the majority of patients long-term maintenance treatment is recommended to suppress Crohn’s disease activity; the disease can often be quite active without causing symptoms.
Q. It was recommended that I try the FODMAP diet to help decrease symptoms of bloating, gas, and cramps. What is known about this diet?
A. FODMAP is a diet researchers from Australia have studied to help IBS symptoms. FODMAP is defined as: Fermentable Oligo-, Di- and Mono-saccharides, and Polyols. The FODMAP diet approach was initially focused on patients who experience irritable volume of liquid and gas in both the small and large intestine. The more common types of carbohydrate studied in the FODMAP research are fructose and lactose. Some other carbohydrates are considered sugar alcohols such as orbital and mannitol. These sugar alcohols are found in many sugar free and diabetic foods. There are also some non-digestible fibers called fructans and galactans that are found naturally in whole foods such as fruit, dairy, beans and grains. At this time, FODMAP diet is considered a theory. The theory is that FODMAPs can cause IBS symptoms or chronic digestive complaints such as pain, distention, gas, bloating excessive burping, diarrhea and constipation. The belief is that FODMAPs can produce an increased volume of liquid and gas in both the small and large intestine. The list of FODMAP foods is quite lengthy. It's important to discuss the list with your GI Physician and a Registered Dietitian. The thought to eliminate all or most of the foods from the FODMAP list if you're struggling with IBD symptoms may be tempting. But, restricting such a lengthy list could result in an imbalance in consuming a healthy diet. It's also important to consume a relatively high fiber diet when you are experiencing an IBD remission. So, one must try to remember the FODMAP diet is still in the research phase.
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. I am 21 years old and seriously considering having my colon removed. I've been in and out of the emergency room since December of 2012 because of flare ups and most recently c-diff. I feel colon removal would be my best bet. I'm wondering how it affects the intimate part of my relationship with my boyfriend. Is it something you can remove during intercourse? Something that gets in the way? I'm a little unsure of the entire process.
A. You should have your surgery done by an experienced colorectal surgeon who does these procedures on a regular basis. In patients with severe disease, patients report an improvement in quality of life including sex life after surgery because they are healthier and off medications. That being said the surgery may impact your fertility (ability to get pregnant on your own) though the new laparoscopic approaches have less impact on that. In successful surgeries, dyspareunia (pain with intercourse) or other alterations of sexual function are not expected so your intimate part of your relationship should not change. There is an increased risk of fecal incontinence but not more than you have now with uncontrolled disease. Your surgeon should review the sexual side effects with you in detail prior to surgery.
Q. I work in a highly stressful call center environment. I am constantly in the bathroom at work and have only limited bathroom breaks. I'm not sure how much more I can take. I'm worried about losing my job. Any recommendations
A. If going to work is not possible, one should discuss with their doctors about getting a medical leave or temporary disability. The Human Resources staff should be able to provide the needed paperwork.
Q. Is there any new research on diet and IBD?
A. In the study “Dietary Patterns and Self-Reported Associations of Diet with Symptoms of Inflammatory Bowel Disease”, completed by Cohen et al. (2012) as part of our CCFA Partners research initiative, yogurt, rice, and bananas were more frequently reported to improve symptoms whereas non-leafy vegetables, spicy foods, fruit, nuts, leafy vegetables, fried foods, milk, red meat, soda, popcorn, dairy, alcohol, high-fiber foods, corn, fatty foods, seeds, coffee, and beans were more frequently reported to worsen symptoms. You can find out more information about these results in the abstract or manuscript of this study published here: https://cgibd.med.unc.edu/ccfapartners/results.php .
Q. I have been a UC patient since 1997 and due to the UC, am anemic as well, but have now been diagnosed with breast cancer too. Will chemo or radiation adversely affect the UC? Should I continue with Remicade?
A. a. You absolutely need to discuss this with your gastroenterologist and oncologist. They need to agree on what therapies you can and cannot continue with breast cancer. Some patients continue remicade after treatment for their cancer, particularly if they are considered cured. However, doing remicade while doing chemotherapy with active cancer is more tricky.
b. The chemotherapy may potentially aggravate your colitis. As the radiation is to your chest, that should not impact your bowels, but radiation to the abdomen can definitely impact colitis
c. I would suggest you have your oncologist contact your GI to discuss this further and come up with a safe treatment plan.
Q. Can people with Crohn’s safely donate blood. I'm 16 and in my state old enough to donate, however my parents are concerned just because of my Crohn’s I shouldn't donate . My mom also said because I take 6mp they won't let me donate? I'm not having a flare and meet all the criteria. Is there any reason that I can't donate if my blood counts are currently fine?
A. Crohn’s disease will not disqualify you from donating blood. On the other hand, Crohn’s that is not well controlled and having complications related to Crohn’s disease such as anemia are reasons you may not be able to donate. Treatment with 6-mercaptopurine will not disqualify you. More information is available at the American Red Cross website, www.redcrossblood.org.
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. Is there a place for fast or “junk” food for kids with IBD?
A. Children with IBD face special challenges, and eating nutritiously is high up on the list. Parents would like to think that there’s no place in a healthy diet for fast food, but this may not be true. Some of these foods provide a valuable supply of nutrients as well as calories. Take pizza, for instance. The cheese offers calcium, protein, and vitamin D; the tomato sauce provides vitamins A and C; and the crust supplies B vitamins. The same is true for other popular favorites such as hamburgers or cheeseburgers, although all of these foods also contain more fat and salt than should be consumed on a regular basis. Milk shakes and ice cream also offer a good source of calcium, proteins, and calories. If lactose intolerance is a problem, that can be overcome by taking commercially available lactase in tablet form before consuming any dairy products.
Q. I'm diabetic and I also have UC. Many people say that white foods like pasta and rice are good for their UC. But all these carbohydrates are not good for my diabetes. Do you have any diet suggestions?
A. White foods such as white pasta or white rice are considered refined foods. In other words, the grain has been processed to a degree where virtually all nutrients and fiber has been eliminated. The manufacturers fortify (or add back in) the food with vitamins and minerals, yet most time the refined food in still void of plentiful fiber as compared to the grain in it's less refined form.
Yet, it's best to consume foods with a higher fiber content. Not only for nutritive reasons and colon health, but fiber also contributes to foods metabolizing slower than it's refined counterparts. Fiber helps food digest at a slower rate and helps maintain blood sugar at a more even keel.
You may choose most foods with a higher fiber content (non-white pastas and grains) when your UC is in remission. It's been suggested to limit a high fiber diet when you're experiencing a UC flare. With some, the high fiber foods can irritate the intestinal lining where the UC ulcers are present. During this time, also become more aware of your blood sugar regulation. If you find your blood sugar seems to fluctuate more with white refined foods, then you may have to experiment with combining some white and some higher fiber grains to help maintain your blood sugar. You also may not be troubled with higher fiber foods during a flare and substituting white refined foods during this time may not be necessary. It's a little trial and error for some. Introducing white refined foods may be temporary and may only last the time period of the UC flare. Become more aware of your blood sugar regulation, bathroom regularity, fluid intake, along with all other UC flare symptoms.
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.
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 diagnosed with IBD 10 years ago and take Azathioprine. I am very active (cardio & weights 5-6 days a week); however I always feel like my muscles are sore. I drink almost a gallon of water a day, and eat a good amount of protein. My doctors can't give me answers, and the lab work didn't give any info. Any suggestions for diet? It this common for people with UC or CD?
A. We recommend a good, well balanced diet without supplements in general. Check out some additional information on diet and IBD from CCFA’s resource: http://www.ccfa.org/resources/diet-and-ibd.html
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 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.
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. 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
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.
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.
Q. Are there any foods that help reduce gas or mal-odor?
A. It’s important to remember there are vegetables that can produce more gas than others. Cruciferous vegetables (i.e. broccoli, Brussels sprouts) are examples of the type of vegetables that can produce more gas than others. This can potentially affect how a patient feels, perhaps contributing to the patient’s IBD symptoms. These vegetables, however, will not cause harm to the GI tract. Yet to answer your question, I’m not aware of foods that reduce gas or mal-order.
Q. Does drinking alcohol have an effect on symptoms and flares? I'm finding that sometimes I'm okay, but then sometimes it can trigger a bad flare. Do most people with IBD simply quit drinking altogether?
A. For many, IBD symptoms don’t seem to worsen with occasional drinking; however, some individuals find that there are detrimental effects with even a small intake of alcohol. Usually, one has to find out how their body tolerates alcohol through trial and error. It seems the irritation that may occur in the upper GI tract doesn’t appear to affect the lower GI tract.
Q. My 7 year old was just diagnosed a few weeks ago with Crohn's and we are struggling with finding food he will eat. He's so upset that he can't eat the things he loves. Do you have any recipe ideas for children?
A. Usually when folks are in a flare, it’s best to follow a few simple diet rules to help the patient feel better and perhaps decrease the severity of some of the IBD symptoms. These guidelines don’t necessarily help everyone because individuals tolerate diet choices differently. Not all IBD patients are affected by the same food. Usually, high fiber foods, high fat foods, caffeine, alcohol, carbonated beverages, dairy, sugar alcohols, and spicy foods are the target foods that can potentially trigger IBD symptoms if a patient is having a flare. But, if a patient is flare free, and not having any IBD symptoms, then the diet and the ‘favorite foods’ can be brought back in to the normal routine. At this point, I don’t have specific recipe for IBD kids. However, I recommend eating favorite foods if the patient can tolerate them. If there is a tolerance issue, perhaps a modification of the favorite food can be given to the child (i.e. Popcorn can be intolerable for some individuals. Purchasing hulless popcorn could help the patient feel like he/she is still able to eat popcorn, but not suffer any GI disturbance.)
Q. I have horrible odor in my bowel movements and my flatulence all the time, 24/7. What can I do? I take adalimumab and eat a regular diet. I had my colon removed and ever since then I have had this problem.
A. It sounds like you had ulcerative colitis and underwent a total proctocolectomy – ileal pouch anal anastomosis and are on adalimumab for inflammation in the pouch. If this is the case, then you will be having bowel movements through your anus, as opposed to an ostomy bag. Your small bowel is being asked to perform the function of the colon, and serve as a reservoir for the stool until you evacuate. To that end you would also have the high volume of bacteria in the pouch just as if you had a colon. This necessarily results in Small Intestinal Bacterial Overgrowth (SIBO) in which the bacteria proliferate to a much greater degree than they would in the colon -- as there is more digestible food to be metabolized. The gaseous byproducts lead to bloating, gas and flatulence.
The treatment of SIBO is varied and controversial. Many physicians will start with a trial of probiotics. You may need a course of antibiotics both for the SIBO as well as for the pouchitis that you may be taking the adalimumab for. Be sure to discuss treatment options with your healthcare team.
Q. I'm a young adult that has been living with UC for 15 years. School is starting soon-and I'll be running 14+ hour days during the week. Do you have suggestions for food plans/diets? I've been trying to do a low-residue diet.
A. Stick with the diet that works for you. If you generally do a low residue diet then that should probably be continued. Eat has healthy as possible and don’t forget time for rest. Life does not necessarily become less busy when you are done with school. Don’t forget to take a multivitamin, calcium and vitamin D. Take a look at some of the diet tips at CCFA.org.
Q. Do you have any weight loss recommendations for IBD patients, particularly teenage girls?
A. There are no specific weight loss regimens that are recommended for patients with IBD regardless of age or sex; certainly it’s important to make sure that any diet is well-balanced so that adequate nutrition is maintained. Weight loss should be done slowly and very extreme dieting and exercise regimens should be avoided. An assessment of body mass index would be a good first step and consultation with a nutritionist is advised.
Q. I have been taking budesonide for more than 2 months for lymphacytic colitis. I asked my doctor about supplementing with L-glutamine which he ok'd. I did not ask him about supplementing with L-Arginine. Would it be alright to use arginine as a nutritional supplement?
A. Yes, L Arginine would be safe to take. There is a lot of interest in determining if certain amino acids, proteins, and other supplements are effective at controlling inflammation. Generally, the amino acids listed are safe and I do not have concerns with these. There are other protein substances that if taken at exceedingly high doses without enough water intake that can present a problem. Those listed by the person asking this question should not present a problem.
Q. Do high-fat foods worsen IBD symptoms?
A. Yes, high fat foods, caffeine, alcohol, and refined sugars may all increase IBD symptoms, i.e. gas, diarrhea, bloating, cramps. It is not clear if high fat foods actually worsen the IBD itself. Meaning, we don’t yet know if high fat foods will lead to more inflammation. However, there are enough other medicine studies showing the detrimental effects of a high fat diet, and an increase in inflammation, in the heart and blood vessels, that avoiding high fatty foods is healthier anyway.
Q. At age 14, I was diagnosed with UC and had a colectomy and j-pouch surgery. About 4 years ago (and after 11 years of wondering why I was still sick) I was re-diagnosed with Crohn's, but I'm already without a colon. I have found dietary information on Crohn's, but not for someone without a colon as well. I am still having trouble figuring out what to eat that won't cause problems, any suggestions?
A. There is no diet that has been clearly proven to have a benefit in patients with Crohn’s disease though the internet is full of anecdotes (e.g. specific carbohydrate diet, paleolithic diet, gluten free, etc). In general, we know diets high in animal fat and animal protein increase the risk of IBD; nitrites, found in processed foods, luncheon meats, can increase risk of flares; curcumin (turmeric) may be helpful. I recommend a Mediterranean type diet to my patients as it is a heart healthy and anti-inflammatory diet high in linoleic acids and omega-3’s.
Specifically for pouch patients, it depends on whether you have any strictures – in this setting you would not want high fiber. If there are no strictures, then you would want to add fiber supplementation to thicken up the stool.
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 have had Crohn’s disease for 48 years and have had a total colectomy and ileostomy and four stoma resections when fistulas appeared. My B12 always appeared normal. I recently read an article from American Family Physician on Vitamin B12 deficiency and purchased 6,000 IUD sublingual B-12 tablets and took them for the last two weeks daily. I feel great with strength and stamina, skin improving, and mentally alert. The article cited 1,000 daily supplementation—is this okay?
A. The Recommended Dietary Allowance for vitamin B12 for adults ranges from 2.4 to 2.8 mcg daily. The article suggests 1000mcg a day for patients with vitamin B12 deficiency. Since your vitamin B12 levels have been normal, you should speak with your doctor about the right dose for you. Although supplementation with excess vitamin B12 is relatively safe, there are toxicities such as blood clots that have been associated with too much vitamin B12.
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 collagenous colities & celiac disease. Should I take a probiotic or any specific vitamins? I take 600 mg calcium pills 3 times a day and multi vitamin and chlorestramine drink 1 or 2 times a day as needed.
A. Probiotics have not been shown to be beneficial for collagenous colitis or celiac disease. Patients with untreated or poorly treated celiac disease can develop malaborption of vitamins and minerals like vitamin D and calcium. Therefore, screening for deficiency in vitamin D and repleting the vitamin D if the level is low is reasonable. Also, screening for bone loss related to celiac disease with a DEXA or bone density is indicated. If bone loss is present, calcium and vitamin D supplements should be given. If the celiac disease is under good control and the bone mineral density is normal, calcium and vitamin D would only be needed if you are not getting sufficient intake in the diet. A daily multivitamin is a reasonable thing for all patients to take. Cholestyramine is not a vitamin but is used as a treatment of the collagenous colitis.
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. What is the role of sugar in the diet of an IBD patient? Which types of sugar are easier for the body to absorb?
A. Unfortunately, despite the extensive web-based recommendations on sugar and IBD, there is very little research on this matter. A recent compilation of various studies by Jason Hou, MD reported that high dietary intakes of total fats, polyunsaturated fatty acids, omega-6 fatty acids, and meat were associated with an increased risk of CD and UC. High fiber and fruit intakes were associated with decreased CD risk, and high vegetable intake was associated with decreased UC risk. Another researcher (El-Tawil) theorizes that factors, such as lack of zinc (common in patients with IBD, in particular Crohn's patients) may significantly affect the activity of some enzymes, such as disaccharidases and other digesting enzymes of carbohydrates, and that would lead to an increase of incompletely digested carbohydrates in the terminal ileum and continual stimulation of inflammation there. However, again the data is limited. Overall, a balanced healthy diet (I recommend a Mediterranean type diet for my patients) is the best option based on available data.
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: http://www.ccfacommunity.org/ResourceCenter.aspx
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: http://www.ccfacommunity.org/ResourceCenter.aspx
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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Q. I was diagnosed with UC at 16 (2010), and the disease quickly ravaged my body. I had a total colectomy, loop ileostomy, and j-pouch. Three years after the surgery, I still have diarrhea. I was told that this isn't unusual, but recently I have noticed blood in my feces. Is this normal?
A. Following a total abdominal colectomy one can consider the option of a J-pouch, which is an attractive option for many compared to a permanent ileostomy. However, one should have appropriate expectations of what is normal and abnormal in the setting of having a J-pouch. The function of the colon is rather straightforward: (1) to reclaim the remaining water and salts not absorbed by the small intestine (1.5-2.0 liters of fluid daily) and (2) to store waste until a socially appropriate time to evacuate the stool. The J-pouch, a pseudo-rectum made from loops of small intestine, serves as a reservoir for waste. However, the J-pouch does not have the absorptive capacity of an intact colon. Therefore, we expect anywhere from 4-8 bowel movements daily in those with a J-pouch. Patients should have adequate control without incontinence, as the anal sphincters are typically unaffected. Several strategies can address the number of bowel movements including the use of fiber products and anti-diarrheals. Bleeding is not normal and should be evaluated. Bleeding could be the result of inflammation in the pouch (known as pouchitis), inflammation at the very short remaining strip of rectum (known as cuffitis), inflammation of the small intestine, or benign conditions like hemorrhoids. All of these conditions are treatable but should be evaluated.
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 have both IBS and IBD (Crohn's) which gives me both digestive and functional problems. Is there any information for people who suffer from both simultaneously?
A. It is now well recognized that all gastrointestinal symptoms in patients with Crohn’s disease may not be due to underlying bowel inflammation, and that a substantial portion of patients with Crohn’s disease additionally fulfill criteria for the diagnosis of irritable bowel syndrome. Fortunately, there does not seem to be any evidence that patients who have both diagnoses do worse in terms of either disease. The key in the management of this is to first rule out Crohn’s disease as a cause of your symptom(s). This is important as IBD is a progressive condition while IBS while impacting quality of life is not associated with progressive bowel damage. Once it has been demonstrating that IBD is in remission, preferably through blood tests, endoscopy, and/or CT or MR imaging, then therapy should be targeted to IBS symptoms depending on the symptom. This could include anti-spasmodics or tricyclic antidepressants for pain predominant IBS, dietary modifications such as the FODMAP diet if bloating is the dominant symptom, or medications to treat diarrhea or constipation.
Q. Why is it that certain Crohn's/UC people get erythema nodosum during flares and some do not?
A. Erythema nodosum is seen in about 3-15% of patients with IBD and is the most common skin manifestation. It has not yet been well established why only some people develop this while others don’t. EN is associated with female gender, colonic Crohn’s disease, smoking, and occurrence of other extraintestinal complications. There is likely a genetic component to this as some studies have associated variants in HLA, PTGER4, and ITGAL with occurrence of EN.
Q. I have been told that my Crohn's has moved to my esophagus. I was looking for info on Crohn’s affecting the esophagus and can’t seem to find info on the subject. I would just like to learn more.
A. Crohn’s limited to the proximal GI tract (esophagus, stomach and first part of the small intestine) represents approximately 5% of affected patients. Esophageal Crohn’s is indeed rare – usually comprising less than 1% of the population with Crohn’s disease. Symptoms include difficulty swallowing (i.e. dysphagia), upper abdominal pain and vomiting. Upper endoscopy often reveals ulcers, redness or erosions. Most patients with esophageal Crohn’s require immunomodulatory or biologic therapy if they do not respond to a short course of steroids. At times esophageal dilation is necessary to overcome strictures within the esophagus.
Q. I have had UC since 2003 and in Feb., 2013 I was diagnosed with Crohn's. But I have read that it is not possible to have both. Is that true?
A. Ulcerative Colitis and Crohn’s are generally described as two separate and distinct diseases with no cross-over or overlap. These two diseases have their own disease symptoms which can differ in terms of history, physical examination, radiography, and endoscopy. We usually teach medical students that they don’t have any overlap at all. However, as we have learned more about what causes IBD and how the body attacks the colon, we see that there are a lot of similarities between UC and Crohn’s. As a result, it might be appropriate to describe someone as “UC-like” or “Crohn’s-like.” While there are some genes that have been shown to be linked to either UC or to Crohn’s, there are more genes that are common to both. Over time, the phenotype (i.e. how the disease manifests clinically) can change. A common scenario is a patient with classic UC who has a total proctocolectomy with Ileal Pouch Anal Anastomosis who later develops a fistula (a sign of Crohn’s disease and not UC). Patients in whom the diagnosis can not truly be labeled as UC or Crohn’s are said to have “Indeterminate Colitis”.
Q. How common is it for Crohn's patients to develop sudden hearing loss due to Auto Immune Inner Ear Disease. I have been battling this for 1 year. There is very little research or information on this topic. Interested in any information out there linking the two conditions and any treatments information.
A. Autoimmune inner ear disease is usually characterized by sudden and rapidly progressive hearling loss in one or both ears. This disease can occur on its own or in association with an underlying autoimmune disorder. As with other autoimmune diseases, it is generally caused by an abnormal and inappropriate immune based attack on the cells of the inner ear (likely in a molecular mimicry fashion where the cells are ‘mistakenly’ thought to be a foreign virus or bacteria). There is no known association with Crohn’s per say, but there have been case reports that this is an extraintestinal manifestation of Crohn’s disease – with findings of granulomas (which are a collection abnormally organized white blood cells that are seen in Crohn’s disease in the GI tract) in the inner ear. Treatment of autoimmune inner ear disease usually consists of immunosuppression by corticosteroids, cytostatic drugs or tumor necrosis factor-α antagonists – the same medications used to treat primary Crohn’s disease.
Q. I was diagnosed with Crohn's disease three years ago. I had pancreatitis, uveitis, and abdominal pain. My doctor started me on Entocort and my fatigue seems a little better. I have uveitis right now and feel like I have a hard time concentrating and I wanted to know if that's due to my uveitis and dry eye or could it be a symptom of Crohn's? I also do not experience the diarrhea that is a common symptom can that happen?
A. The uvea is the middle layer of the eye, just below the sclera. Inflammation of the uvea is called uveitis. Iritis and iridocyclitis are subtypes of uveitis. Uveitis may result in painful, red eyes. This condition is seen in people with Crohn’s disease but is not considered to be Crohn’s involving the eye as uveitis can occur in people without Crohn’s. Painful, red eyes – or any change in vision should be evaluated by an ophthalmologist as soon as possible. Treatment is often with medicated eye drops. Do not assume the symptoms are just from dry eyes. A nice discussion of inflammatory bowel disease associated eye problems can be found on the CCFA website: http://www.ccfa.org/assets/pdfs/eyes.pdf. Not everyone with Crohn’s experiences diarrhea. It depends on the amount of intestine that is involved and the behavior of the Crohn’s. Some people get narrowed areas in the intestine that may actually slow the bowel down.
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” http://www.ccfa.org/assets/pdfs/ibdfactbook.pdf. Information from these studies as well as information on Connecticut population data will assist you in identifying an estimated number of people with the disease and estimated number of new cases.
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. I recently had my bowel removed and I am still suffering from joint pain especially on my knees. During my active disease, I took high dosage of steroids and at one point I became "steroid dependant." Is my joint pain still related to my Ulcerative Colitis or is it a side effect from the steroids?
A. a. There are many causes of joint pain in the patient with UC. In your particular situation I would consider the following:
i. Steroid related bone damage. You may have developed osteopenia/osteoporosis so it would be worth having a bone density scan
ii. Steroid withdrawal: this is the most likely scenario. If you were on steroids for a long time, then your body becomes addicted to it and it is very painful to come off them. Withdrawal can result in achy bones and muscles, difficulty getting up out of a chair, fatigue, irritability and depression. You should check with your primary doctor or an endocrinologist to see if you need to come off steroids more slowly
iii. IBD arthritis unrelated to bowel activity: in some patients they have joint pain that is associated with the UC but is independent of it so the inflammation can proceed despite the bowel being out.
b. I would recommend discussing this with your gastroenterologist and perhaps a referral to a rheumatologist is in order
Q. Can you clarify C.diff ?
A. Clostridium difficile is a bacterium that can colonize your colon and cause a host of symptoms from diarrhea to colon inflammation. It is more likely to occur in those who are immunosuppressed or have underlying colon problems like IBD. The use of antibiotics can lead to an attack by destroying the good bacteria in your colon that is keeping the c. difficile in check. Treatment includes the use of probiotics like saccharomyces boulardii, antibiotics such as metronidazole, vancomycin and fidazomicin, and sometimes even surgery. Recently the use of fecal microbiota transplant has shown benefit for hard to treat cases.
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 a link between geographic tongue and Crohn's Disease?
A. Geographic tongue, also known as benign migratory glossitis, is an inflammatory condition of the tongue that is characterized by discolored regions of taste buds and sometimes even cracks in the surface of the tongue. The lesions can change location, pattern, and size within minutes to hours of forming and patients can have numerous exacerbations and remissions over time. Symptomatic treatments have included fluids, acetaminophen, mouth rinsing with a topic anesthetic agent, antihistamines, any-anxiety medications, tacrolimus, and corticosteroids. Some studies have suggested a link between geographic tongue and oral contraceptive use, diabetes, allergies and other immune hypersensitivities, stress, and psoriasis, but other studies have not supported the same conclusions. There is no literature to support a link between geographic tongue and Crohn’s disease.
Q. What does an elevated alkaline phosphatase indicate? No current flare ups?
A. Alkaline phosphatase is derived predominantly from the liver and bones. Hence the first step in evaluation of an elevated alkaline phosphatase is to identify the source and this can be done through a blood test called a GGT or serum 5’-nucleotidase level. If these tests are also elevated, the source of the elevated alkaline phosphatase is likely from the liver rather than from the bone. The most common causes for a persistant elevated alkaline phosphatase (more than 50% above normal for more than 6 months) include a partial bile duct obstruction, a liver disease called primary sclerosing cholangitis which can be associated with inflammatory bowel disease, primary biliary cirrhosis, certain drugs, and certain infiltrative diseases. Work-up of an elevated alkaline phosphatase can include an ultrasound of your liver, some blood tests, and either an MRI test of the liver or an endoscopic test to look at the bile ducts.
Q. My doctor said I have collagenous colitis, what is the difference between this and ulcerative colitis
A. Collagenous colitis is a form of microscopic colitis that is characterized by chronic, watery diarrhea without bleeding. The colon appears normal by colonoscopy, but biopsies of the colonic mucosa reveal the colitis without any visible ulcerations. In contrast, patients with ulcerative colitis usually present with bloody diarrhea. The colon does not appear normal by colonoscopy and biopsies reveal evidence of chronic inflammation with ulcerations.
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.
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.
Q. There's a group on the internet who are touting "Mycobacterium avium subspecies paratuberculosis" or MAP as a factor in Crohns disease. Is this true information? What's the story?
A. To date there has not been research that substantiates Mycobacterium avium as causative for Crohn’s disease.
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.
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. If you are in remission, will there still be signs of disease seen during colonoscopy?
A. Patients with Crohn’s disease may feel completely well but have quite active disease at the time of colonoscopy. For this reason, your medical provider may recommend that you undergo periodic blood work, stool studies or even a follow up colonoscopy to make sure that the inflammation is under control. In patients with ulcerative colitis, there is usually a much stronger correlation between how patients feel and the findings on colonoscopy. Despite that, I estimate that up to 15% of patients with ulcerative colitis will have significant inflammation in the colon even when they feel well.
Q. I am a 31 year old female and was diagnosed with Crohn's Disease in 2004. I had to have a resection in 2008 and have only been hospitalized once since then. I've recently been having a lot of symptoms such as joint pain, intense stomach pain and more frequent bowel movements. I just had a colonoscopy and was told that I have chronic active proctitis. What exactly does this mean for me and will it affect my Crohn's disease? Are the two conditions related?
A. Colitis is a generic term that means inflammation of the colon. Proctitis is a generic term for inflammation of the rectum. Approximately 2/3 of patients with Crohn’s disease will have involvement of the colon and/or rectum; therefore having chronic active proctitis simply means that you have inflammation in the rectum from your Crohn’s disease.
Q. I have no insurance and am unsure if I have IBD. I experience 10-15 bathroom trips per day, sometimes without warning, and stress makes things worse. I've lost weight and sometimes have very bad pain in lower right side. Is there any way to rule out Crohn's disease on my own and/or what should be my next step?
A. Unfortunately, there is no way to exclude Crohn’s disease on your own. Because of the weight loss and the severe abdominal pain, it is important that you are evaluated by a medical provider as soon as possible. I would recommend that you check to see if there are free medical clinics in your area that can begin the evaluation and treatment. In addition, you can call the CCFA Information Resource Center at 1-888-MY-GUT-PAIN to see if there are any medical benefits which you may be entitled to but are not receiving.
Q. I have a history of Crohn's disease in my terminal ileum. Most people that I interact with that have disease in the same area of intestine complain of diarrhea, but I struggle more with constipation. Is there a specific reason why diarrhea was never a symptom for me?
A. Some patients with ileal disease present with diarrhea; however, patients with obstructing or stricturing disease of the ileum present with intermittent abdominal pain, usually after eating. The pain is often with associated abdominal bloating, loud bowel sounds, nausea, and vomiting. At times, patients with obstructive symptoms may feel constipated (also called obstipation). In this situation, patients often feel relief after passing gas or having a bowel movement. Many patients initially present with diarrhea then develop a stricture or blockage over time with a change in symptoms as I describe above. It is also important to note that up to 40% of patients with Crohn’s disease will have superimposed irritable bowel syndrome which can present with constipation as a primary complaint.
Q. I have always had many problems with my stomach for many years. I have thought it was just lactose intolerance, but even if I do not eat or drink any milk products, I still have problems and the pain is getting worse. My new doctor just seen 3 weeks ago says it may be irritable bowel syndrome. She is referring me to a GI for testing to make sure it isn’t Crohn’s. What are the differences between the two diagnoses?
A. There is often a great deal of confusion (as well as overlap) between Crohn’s disease or ulcerative colitis (collectively IBD) and Irritable Bowel Syndrome (IBS). IBD is an inflammatory disease of the bowel where there is an infiltration of white blood cells into the lining of the intestines. This is characterized by endoscopic findings ranging from redness and ulcers to the formation of fistulae (abnormal connections between the bowel and adjacent structures). Bloody diarrhea is the hallmark of ulcerative colitis, as is an urgent need to go to the bathroom with multiple small volume stools a day and having to go to the bathroom at night. IBS has no endoscopic findings and is, at its core, a problem with the function and motility of the bowels itself.
Both diseases can manifest in abdominal pain, discomfort, or change in bowel habits – more likely to be diarrhea than constipation but can be either one in either disease. It is important to determine which disease it is, as the treatments are radically different. For instance, IBD is treated with anti-inflammatory or immunosuppressive medications.
Q. Is mal-odor from the mouth a symptom of active ulcerative colitis? I have been suffering from this condition even before diagnosis with ulcerative colitis and the condition still exists despite my disease being in remission under treatment.
A. Ulcerative colitis is a chronic inflammatory condition involving the colon, characterized by bloody diarrhea, and does not extend into the small bowel or upper GI tract. However, any inflammatory bowel condition can alter the motility of the entire system, and the foul smelling odors you mention may be symptomatic of reflux. If acid or other liquid components from the stomach reach the mouth and gums, disease of the gums and teeth can occur leading to the odor. Be sure to discuss this symptom with your healthcare team.
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 have Multiple Sclerosis and was recently diagnosed with Crohn’s disease. How common is it to have more than one autoimmune disease?
A. It is difficult to give an exact estimate of the likelihood of having multiple sclerosis and Crohn’s disease in the same patient. However, studies looking at this suggest that conditions such as multiple sclerosis occur more commonly (up to two times more likely) in patients with IBD (both Crohn’s disease and ulcerative colitis) than among non-IBD patients. This is also true for other autoimmune conditions such as celiac disease, psoriasis and rheumatoid arthritis in that you are more likely to have these conditions if you have IBD than if you did not. However, it is important to understand that this may just mean that your genetic make-up and environmental exposures predispose you to both these conditions rather that one disease is “causing” the other.
Q. Can you provide information on the epidemiology of ulcerative colitis in adolescents?
A. Overall, the incidence and prevalence of ulcerative colitis appears to be increasing worldwide, but especially in North American and Northern European countries. I’m not aware of studies specifically in adolescents, but there have been studies that have shown a younger age of onset and more frequent diagnosis of UC in younger people. The exact reason for this is not clear and likely has to do with a change in environmental factors, foods we eat, air we breath, and consequent changes in the intestinal flora (microbacteria in the intestines). From my personal experience, ulcerative colitis seems to be occurring in younger patients and presenting with a more severe presentation. Meaning, one day the person is fine and the next they are having severe symptoms – rather than the gradual presentation we often see in adults. We do know that IBD is an immune mediated disease and that the immune system “rev’s up” during adolescence. Therefore, this seems to be a common age of onset of ulcerative colitis and Crohn’s disease. Why there seems to be an increase in IBD at an earlier age is still unknown and likely multifactorial.
Q. My niece has been diagnosed with "probable" Crohn's disease, however her primary symptoms are bloating/gas and constipation. Tests show no inflammation except in the terminal ileum (mild). The IBD Serology Test is negative for IBD and her CRP is going down, yet the constipation persists. Can you give any advice on the status of her diagnosis and what to do next?
A. This is a very difficult and common question. There are many young people who develop gastrointestinal symptoms, e.g. bloating, gas, constipation, and do not have Crohn’s disease or ulcerative colitis. When someone has testing that shows clear cut inflammation, ulcers, and other objective abnormalities, then it is easy to make the diagnosis of Crohn’s. In patients who have a completely normal colonoscopy, blood tests, biopsies, and radiographic testing, we think these patients may have irritable bowel syndrome, rather than Crohn’s disease. Your niece’s case is very common and probably somewhere in the middle. Meaning, her constipation and bloating may be irritable bowel syndrome but it does appear that she has mild inflammation in the ileum and an elevated CRP, which would go along with a diagnosis of IBD. In my practice, when I see patients like your niece, I explain that they may have irritable bowel syndrome and we usually start with that treatment – diet changes, stress reduction (if applicable), and other symptomatic care for IBS. I would then repeat a colonoscopy in one year and if there is no sign of inflammation then I think that while Crohn’s is not impossible, I’d probably favor IBS as the unifying diagnosis. If the symptoms progress or there is more inflammation on repeat testing then this is probably early Crohn’s and treatment should be targeted.
Q. I was diagnosed with UC in 1981 and had a proctocolectomy with permanent ileostomy in 1984. I've been having bouts of diarrhea & constipation for approx. 2 months with severe abdominal pain and bloating. Is it possible to develop IBD again after having my colon removed several years ago?
A. For patients with ulcerative colitis who undergo a total proctocolectomy with end ileostomy it is unlikely, but not impossible to develop IBD again. Generally, a proctocolectomy for ulcerative colitis is a curative procedure. For those patients who have an ileal J pouch reconstruction, it is common to get pouchitis (inflammation of the ileal pouch) from a build up of bacteria. For you, the surgical procedure that you had is technically curative. There are a few reasons I can think of for your symptoms. One is that your ileostomy is beginning to stricture (narrow) at the stoma ending and causing symptoms of constipation, but also bacterial overgrowth. The second is that the changes you are experiencing are related to changes in normal bowel motility. The final is that there is Crohn’s disease – this last possibility is exceedingly rare, and please do not assume this. To sort this out, if you have not had an ileoscopy (scope into the ileum through the stoma) that would be a good start. This would tell you if there is any narrowing/stricture, if there is any inflammation or ulcers, and exclude any other mechanical process to explain the symptoms.
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. I move my bowels more than 6 times a day and then then large clumps of mucus come out rather than stool. What can I do about this?
A. Mucus is not necessarily abnormal. Many women notice an increase in mucus with stools around the time of their menses. The real question is whether your IBD is active. If it is then you need to work with your healthcare team to improve your therapy to reduce the number of bowel movements and reduce any blood or mucus.
Q. I was diagnosed with medication-induced collagenous colitis in 2003. My symptoms resolved after removal of the medication. Currently I’ve experienced 3-4 weeks of diarrhea, cramping, indigestion, fatigue (flu-like feeling). I really have not fully digested food in weeks (moves through system at varying lengths of 15 minutes to 2 hours); even with diphenoxylate/atropine. What could be causing these symptoms?
A. The possible diagnosis for this is infection (there are a lot of viral infections like rotavirus and norvovirus going around), recurrence of collagenous colitis or new development of ulcerative colitis. You should see your gastroenterologist for an evaluation.
Q. I had a total colectomy 10 years ago, but still suffer greatly from constipation, bloating and pain (on my left side and lower left abdomen). I have been back to my surgeon who said it was my diet and then two weeks later it is not my diet (probiotics, tests, scans) still the same. I do not have a colostomy. Is there anything that can be done about my constipation?
A. It is hard to imagine constipation when there is no colon present. This is concerning for some type of stricture or blockage in your bowel or the use of medications, such as narcotics, which slow down the bowel. If there is no physical blockage or medications causing this, then medications that assist bowel movements like osmotic laxatives can be used under the supervision of your doctor.
Q. How commonly are Crohn's disease and/or ulcerative colitis misdiagnosed?
A. It is hard to give a number for this since we don’t truly know the denominator. However, studies do suggest that there is a significant lag time between when patients develop symptoms and when they are diagnosed with IBD – anywhere for 3-12 months. With respect to the reverse, where something is called Crohn’s/UC but is not, we have even less information. Approximately 10% of patients in population based studies never have a recurrence of IBD after their first event. Many of these patients were likely misdiagnosed.
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. How can I tell if I have IBS (irritable bowel syndrome) or IBD (inflammatory bowel disease)?
A. While it is possible to have both IBD and IBS, the two disorders can be distinguished by symptoms and by laboratory, x-rays, or endoscopic data. Patients with IBS can have a wide array of symptoms but typically have chronic abdominal pain and altered bowel habits. Patients with IBD who are having a flare often present with increased frequency of bowel movements, rectal bleeding, and abdominal pain. During more severe flares, IBD patients can have fevers, weight loss, laboratory abnormalities, or other manifestations such as inflamed joints or rashes. A colonoscopy, appropriate x-rays, and/or laboratory tests can be done to help determine whether symptoms are from IBD or IBS.
Q. My daughter was diagnosed with mild ulcerative colitis (UC) 2 years ago and has never had blood in her stool until now. Her stool is either soft-formed or very hard, never runny or foul smelling. Could the blood be coming from a tear or hemorrhoids since her stool is hard most of the time when she has the blood? The blood is bright red.
A. It is certainly possible that the bright red blood is due to hemorrhoids, a tear (fissure), or from active ulcerative colitis. You should encourage your daughter to follow up with her gastroenterologist to help determine the source of the blood so that she can receive the appropriate treatment.
Q. What is being done to advance understanding and treatment of anemia in chronic disease (specifically IBD) to maintain a steady state relationship of levels of iron and hemoglobin? Could correct balance improve the immune system and quality of life in IBD?
A. Anemia is a very common problem in IBD. Although many patients report that they do not experience any symptoms from the anemia, many studies have shown that anemia has a significant negative impact on quality of life. The most common cause of anemia in IBD is iron deficiency (related to gastro-intestinal blood loss). Anemia of chronic disease often occurs at the same time due to immune mediated impaired formation of red blood cells and inappropriate iron metabolism. Both oral and intravenous iron therapy have been shown to be effective in treating iron deficiency, and consequently improve quality of life. Another cause for anemia is from a low B12 level. Low B12 levels can develop in patients with active Crohn’s disease or in Crohn’s patients after removal of the terminal ileum (last part of the small intestines).
Q. Is Crohn's a fatal disease and what is the usual time the disease will run its course? My Mother was diagnosed 4 years ago and has had most of her intestines out. It seems to have progressed rapidly - is this a normal course for the disease?
A. Crohn’s disease (CD) is not a fatal disease. Many studies suggest that CD is associated with only a small decrease in overall life expectancy. The typical course for patients with CD includes intermittent worsening of symptoms follow by periods of remission. Patients who have active disease within the past year have a 70% chance of remaining active in the forthcoming year and a 50% chance of being in remission within the following 3 years. Patients can either have mild, moderate or more aggressive disease, and many patients with CD ultimately require surgical intervention. Patients with the more aggressive form of the disease can have earlier return of their Crohn’s disease after surgery and may need more surgery.
Q. Since a few months ago I started to notice cuts behind my ear lobe. It bleeds and gives out liquid and itches a lot. Is this related to the medicine I take or does it have nothing to do with my ulcerative colitis (UC)?
A. Ulcerative colitis (UC) can be associated with a variety of skin problems that cause inflammation. Occasionally, these skin problems can be a sign of progressive disease even in the absence of gastrointestinal symptoms. However, cuts behind your ear lobe seem unlikely to be associated with your UC. Given that these cuts have been occurring for a few months, you should follow up with your physician, who might then recommend you to see a skin specialist (dermatologist).
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. Is it possible to have IBS in addition to Ulcerative Colitis? My symptoms are so strongly linked to stress and anxiety that I am starting to wonder if it is possible I could have both.
A. It is possible to have both IBS and ulcerative colitis. In most cases, the two disorders can be distinguished by symptoms. Most patients with ulcerative colitis have an increased frequency of bowel movements and rectal bleeding when they experience a flare of symptoms. Patients with symptoms from IBS do not have rectal bleeding. However, stress has been associated with flares of both ulcerative colitis and IBS. When ulcerative colitis patients have diarrhea without blood in the stool, a sigmoidoscopy or colonoscopy can be done to determine whether the symptoms are from ulcerative colitis or IBS.
Q. Can a flare up make you feel hot or even break out into a sweat?
A. Patients with moderate to severe Crohn’s disease or ulcerative colitis can experience systemic symptoms (fever, chills, and/or sweats) during a flare of disease. In addition, patients with complications of their Crohn’s or ulcerative colitis can develop fever. This happens when the bowel or intestine perforates (ruptures) and/or when an abscess (collection of infection) develops. Lastly, the immune suppressant and biologic drugs can predispose patients to infection. A fever in this setting can represent an infection and should be evaluated immediately.
Q. I was diagnosed with ulcerative colitis in 1999. Is it possible to have a flare up where instead of running to the bathroom you have gas with an infection-type smell and sometimes feel like you have a build-up of mucus that gives you a feeling that you want to wipe like when you go to the bathroom?
A. Patients with ulcerative colitis almost always have inflammation in the rectum. When the rectum is inflamed, patients often feel as if they have to go to the bathroom frequently. When patients attempt to move their bowels however, nothing comes out or they pass only blood and mucous. This particular symptom is called tenesmus. Oral or rectal medical therapy can be given for this symptom; if the symptoms improves after therapy it was mostly likely caused by rectal inflammation. Evaluation of the rectum by a sigmoidoscopy or colonoscopy also can be done to confirm the presence of rectal inflammation.
Q. I had a colectomy in January. My doctors thought I had Ulcerative Colitis, so I expected a "cure". A biopsy of my colon showed I actually have Crohn's, so I was told to expect it to recur. I have never had symptoms anywhere but my colon and rectum. I understand there is a type of Crohn's called Crohn's Colitis which only affects the colon. Is there any way to find out what specific type of Crohn's I have?
A. If you have Crohn’s disease involving only the colon (Crohn’s colitis), removal of the colon results in a cure in about 80% of patients. However, if your doctors connect the small bowel to the rectum or if they have done a restorative proctocolectomy (IPAA or J pouch) then it is more likely that the Crohn’s disease will come back. Unfortunately, it is not possible to predict what type of Crohn’s disease you will have. There are some blood tests that can be ordered which can help predict whether your Crohn’s disease will be more aggressive. Unfortunately, this test is often not covered by insurance.
Q. Earlier this year I was diagnosed with ulcerative colitis and about the same time a large amount of proteins were observed in my urine. I recently had a kidney biopsy which came back negative. Is there any research on the effects of UC on the kidneys?
A. It is uncommon or rare for the kidney to be affected in patients with ulcerative colitis. One of the most common drugs used to treat patients with ulcerative colitis, aminosalicylates (or 5-ASA), can rarely cause a kidney injury called allergic interstial nephritis. This usually presents with a decrease in kidney function and inflammatory cells in the urine. In addition, any chronic inflammatory process like ulcerative colitis can cause protein deposition (amyloid) in the kidney. This is extremely rare. Lastly, in patients with small bowel Crohn’s disease, kidney stones can develop which can cause blockage of urine into the bladder. However, this process does not usually result in protein in the urine.
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. I’m 33 years old and have had Ulcerative Colitis for 14 years. I've heard about the symptoms for colon cancer, but wonder how I can differentiate those symptoms from a flare-up?
A. Colon cancer associated with colitis often has no specific symptoms. Some patients have blood in the stools, low blood count (anemia), abdominal pain, loss of appetite, fatigue, nausea, or change in bowel movements. In contrast, an ulcerative colitis flare usually consists of increased numbers of bowel movements, decreased consistency of stools, blood in the stool, urgency and abdominal pain. If you develop any new gastrointestinal symptoms, you should seek a timely evaluation by your medical provider.
Colon cancer in patients with ulcerative colitis is usually diagnosed at the time of a surveillance colonoscopy to screen for pre-cancer (dysplasia) or cancer of the colon. If you have involvement of more than 1/3 of your colon, your risk of colon cancer is increased compared to patients without ulcerative colitis. The risk after 20 years of colitis is about 3% and after 30 years the risk is about 8%. It is currently recommended that you undergo regular colonoscopies for screening after you have had ulcerative colitis symptoms for at least 8 years. If other factors are present such as a family history of colon cancer or primary sclerosing cholangitis, screening may begin earlier. See the CCFA FAQ about Colorectal Cancer and IBD for more information: http://www.ccfa.org/living/colorectalcancer
Q. My daughter has Crohn's and every so often her appendix gets inflamed/enlarged. It is painful for her. Should we have it removed?
A. Management of this problem depends on whether your daughter has appendicitis or whether the appendix is involved with Crohn’s disease. Appendicitis (inflammation and/or infection of appendix) presents with sudden onset abdominal pain, nausea, loss of appetite and fever. Imaging tests such as a CAT scan or ultrasound confirm inflammation of the appendix. Antibiotics are given over the short term followed by surgical removal of the appendix.
Sometimes, Crohn’s disease involving the end of the small intestine (ileum) and beginning of the colon (cecum and ascending colon) can present with symptoms that mimic appendicitis. However, imaging of the abdomen as described above should be able to differentiate between Crohn’s disease and appendicitis in most cases. A colonoscopy is usually performed if it can be done safely to confirm the diagnosis and demonstrate the severity of activity of Crohn’s disease. Management in this case can involve medical or surgical treatment of the Crohn’s disease.
Q. I have had low body temperature (95.5 to 97.6) for several months. Is this something to be concerned about? Could this be related to IBD or to the mesalamine that I'm currently taking?
A. Low body temperature (hypothermia) can be a symptom of severe infection. However, low body temperature from severe infection would not persist over several months. I don’t think that the body temperature readings you are recording are from either your IBD or from the mesalamine.
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. Can you explain what the root cause(s) of Crohn’s disease are?
A. Unfortunately we do not know what the root cause of Crohn’s disease is and this is an important area of research sponsored by the CCFA. What we do know is that it takes several “hits” to get Crohn’s disease. You need to have the right genetic background (though no one else in your family may have Crohn’s), something in the environment that is a trigger for an overactive immune response that can’t turn off (because of your genetic make up). The environmental trigger is likely something different for each patient (virus, bacteria, food, toxins, etc). We are also learning a lot about the human microbiome (the bacteria, virus, fungi that live within us). We are learning that imbalances in this microbiome can be associated with many autoimmune diseases, including Crohn’s disease. This is a simplistic explanation of a very complex and poorly understood interaction, but hopefully ongoing research will better define the issue.
Q. What is the latest in research on using autologous cells to understand Crohn’s disease and potentially find a cure?
A. This is very experimental at this time and much still needs to be learned. Autologous cells are cells that are removed from an individual’s body, cultured, and then reintroduced to the body. There have been some small studies done in severely ill Crohn’s patients who have failed all other therapies with some report of benefit. In Europe, Giorgio Lambertenghi Deliliers, MD has reported on an ongoing trial, called the EBMT Phase III Autologous Stem cell Transplantation International Crohn's disease (ASTIC) trial, that is comparing direct versus delayed (1-year post-mobilization) autologous hematopoietic stem cell (HSC) transplantation. The primary objective of this study is to evaluate the potential clinical benefit of HSC mobilization followed by high-dose immunoablation (which is used to reduce immune resistance) and autologous stem cell transplantation versus HSC mobilization only followed by best clinical practice in patients with CD; the primary end point will be the proportion of patients in sustained disease remission at 1 year.
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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Q. I'm trying to get pregnant and taking Lialda and Canasa. I was wondering if I should take an increased amount of folic acid due to the medication decreasing my folic acid levels, or would a normal prenatal vitamin work just fine?
A. TLialda and Canasa do not impact folate metabolism so a normal prenatal vitamin is fine. Sulfasalazine is the only 5ASA that does affect folic acid and 2 mg of folate should be taken with that drug.
Q. I developed a rectal vaginal fistula at the opening of my vagina. I am scheduled for rectal advancement flap surgery. I would like to learn more about the surgery and what I can expect with the recovery duration, pain, bowel movements, diet etc.
A. TThe usual surgery for this is called an exam under anesthesia (EUA) where the surgeon will explore the area looking for the fistulous tract. They will put in a thin plastic wire called a seton to keep the site open so pus can drain out while medications are started to help the fistula heal. The specifics of the surgery need to be discussed with the colorectal surgeon who will do the procedure and they can go over all those details with you. In general this is an outpatient procedure where you come in and go home the same day. There should be no alteration in diet.
Q. I am 27 weeks pregnant and have had a flare up since before becoming pregnant. I am on adalimumab and it doesn't seem to be working.
A. TThere are several issues here. First of all, women should discuss with their OB whether the baby is developing properly given any flare and whether the pregnancy is progressing normally. Most women with IBD should be followed as high risk obstetric patients.
Second, if disease is flaring despite some form of therapy, the therapy may need to be adjusted or changed. This is a conversation to have with one's gastroenterologist who can assess disease activity and make an appropriate recommendation.
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. I am 55 year old female with Crohn's since 1977. I used to take sulfasalazine but was allergic to sulfa. Have had ileostomy over 30 years. Have been in remission for 15+ years. In last 6 months I have had severe lower level abdomen pain, diarrhea and I've lost 15 pounds. The only med I'm on is Percocet. I know nothing about all these new drugs. I see my GI for 6 mo. Checkup soon. I'm scared. Could my Crohn's be back? After all these years?
A. TUnfortunately it is possible for Crohn’s to come back at any time. However, it is rare so it is important to do a full check up to make sure there is nothing else going on. Sometimes you can get scarring or twists in the bowel from surgery; sometimes you can have Crohn’s slowly creep back and form a stricture or narrowing; sometimes it can be something else like infection or even celiac disease. An openminded full work up is in order
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. I am pregnant and expecting my third child. With each pregnancy I was in remission from crohn’s disease. Within a week after giving birth I flare up. How can a flare be prevented after my next delivery?
A. TDisease activity at conception appears to influence the course of IBD activity during pregnancy. Patients in remission during conception are more likely to remain in remission during pregnancy and the immediate postpartum period. If the disease is active at the time of conception, it is likely to remain active. This is particularly important because increased disease activity during pregnancy may be associated with adverse outcomes. The postpartum period does not appear to constitute a time of risk for disease flare compared with the general IBD population unless your disease is active prior to or during pregnancy or if you are smoking. It is important to stay on the medications that your doctor has prescribed throughout your pregnancy and postpartum period and to refrain from any cigarette use. Most of the medications used to treat IBD are safe to use with breastfeeding and it is thus important to stay on your medications and discuss them with your doctor if you choose to breastfeed. There are some small studies that suggest that breastfeeding may actually be protective against flares in the postpartum period.
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. TThe 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.
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. 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. TMore 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.
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. TI 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.
Q. What is the incidence of colon cancer for colitis patients?
A. TThe 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.
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 CCFA.org.
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. TThis 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.
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. TThis 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.
Q. Are there any surgical considerations for women who are considering getting pregnant?
A. TAbdominal surgery for IBD does not typically cause problems for pregnancy and no specific consideration made for this patient. However, surgery that involves the pelvis or perianal (perineal) area should be taken into account. It is know that women who undergo a total proctocolectomy with ileal pouch anal anastomosis (IPAA) have a lower fecundity rate. That is, the ability to get pregnant is less. It is thought that the normal scarring that occurs after surgery, i.e. adhesions, may wrap around the fallopian tubes and make the ability to get pregnant (fecundity) more difficult. However, there are patients of mine who have had a J pouch and successfully conceived a pregnancy. Some women of child bearing age who need surgery for ulcerative colitis opt to have a colectomy with an end ileostomy rather than a J pouch. Once they are done having children they then reverse the ostomy to an IPAA. Finally, women who have had extensive perianal or perineal Crohns’ disease and fistula, probably should have a C section for their mode of delivery. The rationale for this is that any tearing at the time of vaginal delivery could involve a fistula and be difficult to heal. If a woman has had a remote history of a perianal fistula and everything else is normal, then a vaginal delivery is acceptable.
Q. My 14 year old son has been diagnosed with Crohn’s—it includes his mouth, esophagus, stomach, and colon. He has been on prednisone for 2 months, started balsalazide - ineffective, now starting 6mp with mesalamine. His gastroenterologist is recommending biologic therapy, which I’m concerned about. Are there statistics with side-effects while on the biologics for pediatric patients?
A. TThe evidence clearly supports the use of biologics in pediatric patients with moderate to severe disease. 5-ASA/meslamine agents like balsalazide are ineffective. The biggest risk to a pediatric patient is that the Crohn’s disease will keep them from growing and attaining puberty at a normal rate. Also, in very extensive Crohn’s disease involving esophagus, stomach, colon, etc. there is a strong risk of perforation/fistula and need for surgery as well as risk for strictures that can be debilitating over time. It is very important to get the disease under complete control to prevent complications that will affect a pediatric patient over a life time. Biologics appear to have the best data for induction and maintenance of remission as well as healing the mucosa or lining of the stomach. They can also improve pediatric bone health and growth and development. The risks are similar to adults with an infection risk and lymphoma risk that are low.
Q. My daughter was diagnosed with Crohn's at age 3 years. She exhibits perianal manifestations of Crohn's disease. She has had fistulas, fissures and abscesses in her anus. She has extra skin tags in this area as well which makes the area appear mutilated. Is there any plastic surgery to fix this when she is older?
A. TThe best treatment is to aggressively treat the perianal disease now. Biologics are the only agents that have been proven in studies to date to treat and reduce perianal disease. Surgery should not be done to “fix” the area as the Crohn’s may continue to attack the area and it won’t heal and it may become a bigger issue.
Q. My primary care doctor has recommended that I use a hormonal form of birth control--either a low-dose estrogen pill or the levonorgestrel-releasing intrauterine device (IUD). This form of IUD is not recommended for people with suppressed immune systems (I am on azathioprine and infliximab, and tapering off of prednisone). However, a recent CDC publication gave the IUD a safer rating than the pill for women with IBD (http://1.usa.gov/bQnOfb). Which form of birth control is safer for me to take?
A. 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. Since Crohn's symptoms tend to worsen during menstruation, I've been considering going on a birth control pill that will limit my periods to four times a year instead of monthly. Can the pill be trusted in someone who does not have control over their Crohn's symptoms? Right now, I'm on an alternate form of birth control because I've read in the past that the pill is absorbed through the intestines. Is it beneficial to switch to the pill or is the risk of it failing too great?
A. TA decreased ability to absorb what you eat in the setting of active small intestinal Crohn’s disease might lead to a decrease in the effectiveness of contraceptive pills taken by mouth. Oral contraceptives are mainly absorbed in the small bowel and contraceptive efficacy depends on its absorptive capacity. However, limited evidence suggests that there are no differences in the absorption of higher-dose oral contraceptives between women with mild UC and small ileal resections and health women.
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 http://www.ccfa.org/info/brochures.
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 (http://www.ccfacommunity.org/ResourceCenter.aspx) 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. What should be the frequency of colonoscopies after age 85 if in remission?
A. TIn general, most gastroenterology society guidelines do not recommend screening or surveillance colonoscopies in patients of advanced age, such as 85 and older. The decision about continuing screening or surveillance colonoscopies in your case should be discussed with your treating physician. I often consider the following factors when deciding whether or not to pursue further colonoscopies for screening or surveillance in older patients. First, if a problem is detected, is the patient well enough to undergo surgery? Second, would the patient seek treatment if a problem were discovered (for example, would a patient agree to a removal of the colon if cancer were found)? Lastly, are other health problems present which limit the patients 5 year survival? In general, the more other severe health problems that are present make ongoing colonoscopies less beneficial.
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. Is there any research which addresses some of the more potent treatments and future fertility? My 14 yr. old daughter is currently treated with methotrexate.
A. TIn general, none of our current medical treatments used for inflammatory bowel disease is thought to negatively affect female fertility. Sulfasalazine can cause low sperm counts which are reversible after stopping the drug. There have also been preliminary studies showing that men who take mercaptopurine or azathioprine can have problems with sperm quality. This has not clearly been linked to problems with conception though.
Methotrexate causes birth defects. Therefore, while your daughter is on this drug, she should not conceive. In fact, when she becomes sexually active, it is recommended that patients or their partners use some form of birth control to prevent pregnancy. In women, surgery has been linked to problems with future fertility, especially restorative proctocoletomy (J pouch) in patients with ulcerative colitis. It is thought that less invasive surgery (laparoscopic surgery) is associated with fewer problems with future female fertility then open procedures.
Q. My 3 yr old son just had ileoanal anastomosis surgery for UC. During the day he has some bowel leakage between BMs and at night he usually has a couple of BMs while he's sleeping so we have to get him up a couple times every night. All together he has between 8-12 BMs every day. Will this number decrease with time? And will the leakage stop during the day? He has been potty trained for over a year now. Is there any particular diet that can help with # of BMs or leakage? He takes Imodium.
A. TOver time, his pouch function (number of bowel movements, control of bowel movements) may improve especially nighttime control of bowel movements. The number of bowel movements he is experiencing is a little high after an ileoanal anastomosis but not unreasonable.
If the number of bowel movements is increasing, I would recommend that he see his medical provider to exclude problems like pouch inlet or outlet blockages (stricture), pouchitis, or cuffitis. If the symptoms have not really changed since surgery, symptom-based treatment is recommended. First, avoiding eating or drinking a few hours before going to sleep can help to decrease the number of nighttime bowel movements. Second, loperamide can be increased slowly over time to decrease the number of bowel movements. In my patients, I usually recommend that adults take 2 mg of loperamide before each meal and at night before bed. This can be increased every few days as tolerated. Other anti-diarrheals can be used as well including diphenoxylate/atropine and tincture of opium. Lastly, probiotics like VSL#3 (2 sachets or 4 capsules daily) may decrease the number of bowel movements.
Q. I don't have insurance and can't afford meds - where can I go for help?
A. TLack of insurance coverage or under coverage is a big problem in this country. Fortunately, there are some mechanisms to help patients in your situation. First, most academic medical centers will care for patients without insurance. This might require divulging some of your financial information to see if you are eligible for charity care. In addition, a social worker either within an academic center or outside these centers can help uncover benefits to which you are entitled to. Second, many clinics have access to samples of prescription drugs that can be used for your treatment. Third, medical foundations exist (HealthWell Foundation, Needy Meds, etc.) to help you obtain free or discounted medications. Lastly, many drug companies have a charity drug program so that you can obtain drug coverage while you are uninsured.
Q. My 16 year old daughter has Crohn's and six months ago was in hospital for mono and an enlarged spleen. Her hemoglobin level keeps dropping to 9.6 (sometimes lower). We did extensive blood work and stool samples and everything came back negative. Her GI thinks mono damaged her bone marrow. Have you ever heard of this occurring?
A. TAs an adult gastroenterologist, I rarely treat patients with mononucleosis. However, based on my review of this topic, most patients have had complete resolution of mono symptoms by 6 months. Furthermore, low blood counts or anemia is a rare complication of mono. If the source of anemia is in question, a referral to a hematologist (blood specialist) can be helpful to focus any further evaluation.
Assuming that the anemia is not related to mono, I would investigate for blood loss from the gastrointestinal tract from her Crohn’s disease. This would likely involve “restaging” her disease with small bowel x rays and a colonoscopy and/or upper endoscopy.
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 am pregnant and want to be able to have an epidural during delivery. Will the medication cause a flare up or interfere with my IBD meds?
A. TThere is no evidence that an epidural impacts on disease activity or interacts with standard IBD medications.
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. How do testosterone levels affect Crohn's disease? I am a 55 year old male. Would taking testosterone injections to raise levels to a normal level help reduce Crohn's problems or make the Crohn's worse?
A. TMen with chronic illness like Crohn’s disease often have low testosterone levels and this can contribute to fatigue and other issues. There is no harm known for taking testosterone in the setting of Crohn’s disease or ulcerative colitis so if your doctor feels you will benefit from testosterone you should take it.
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 (www.ccfacommunity.org) and the United Ostomy Foundation (http://www.ostomy.org) 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 (www.ccfa.org/info/brochures). 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 www.ccfa.org website, www.ibdetermined.org 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. 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. 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. 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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Q. What is vulvar Crohn’s and how is treated?
A. Vulvar involvement of Crohn’s disease can cause significant symptoms and distress for patients. The first priority is to confidently establish that the vulvar involvement is the result of Crohn’s disease by performing diagnostics for infectious and other conditions, occasionally performing a skin biopsy. If the workup does indeed indicate vulvar Crohn’s involvement, many of the standard therapies for Crohn’s disease have been shown effective. Anti-TNF medications, like Humira (adalimumab) are very effective in improving vulvar involvement. In some patients, the addition of a second therapy such as azathioprine or methotrexate, may provide further improvement.
Q. Is Anser assays for drug level and antibodies to for adalimumab important when losing response or are these Prometheus tests still considered experimental or investigational?
A. Anti-TNF drug level and antibody assays (available for infliximab and adalimumab) are very helpful to evaluate the reasons for loss of response and to optimize medication dosing. These tests are not experimental and while we are still learning how to best use these diagnostics they already have a clear role in evaluating loss of response. When disease activity returns, the presence of antibodies against anti-TNF drug with no detectable drug level suggest that the individual has developed resistance to one particular anti-TNF and may benefit from switching to an alternative anti-TNF. Most of the questions remaining regard monitoring of anti-TNF drug levels, known as therapeutic drug monitoring. There is evidence that keeping anti-TNF levels within a certain range may lead to better outcomes, however the exact optimal range has not been determined. As an additional point (and very important for patients), while IBD experts do not consider these tests experimental, your insurance company may and as a result refuse to cover the test. We recommend that you contact your insurance provider prior to an Anser assay being performed to determine if the cost of the test will be covered.
Q. I had taken Imuran for 11 years till I had a resection last fall. I am not going back on the Imuran. I had no problems taking the Imuran the first time, does that mean I will not have a reaction after starting up again (liver, pancreous)? Also is it common on a restart of the drug to start at a low dose or at the dose you were previously taking?
A. Without resuming treatment, even in the absence of symptoms, the majority of patients will require another surgery at the same site within 10 years. There is very good evidence supporting the benefits of patients restarting Crohn’s medications after surgery. In a study of patients with ileal resections where half were left off medication and the other half received infliximab 4 weeks after surgery, Dr. Miguel Regueiro and colleagues found of those using no therapy 84.6% had disease recurrence one year after surgery, compared to only 9.1% recurrence for those on medication (Gastroenterology 2009). While it is clear that post-operative medication restart is almost always best, medication choice must be individualized to each patient. Regarding Imuran specifically, it would be reasonable to restart, especially if you previously had a positive experience. All patients should have routine liver and blood tests while using Imuran. As for the dosing of Imuran, this must also be individualized, often using blood tests to monitor Imuran drug levels and its end effects. Additionally, even at an optimized Imuran dose, confirmation of adequate suppression of bowel inflammation should be documented to demonstrate the selected medical regimen is effective.
Q. I take Pentasa for my Crohn's. The "cost" of it varies dramatically in various drug plans but all have a very high price. There is no generic for it and I have tried other meds but have had side effects. Do you know what might be happening with this drug? Is there a generic pending? Why is the cost so high? Is there anything happening that might bring the cost down?
A. At this time, no generic is available for Pentasa. Pentasa is formulated to release mesalamine throughout the small intestine and part of the colon. Considering the relatively small market, I would not expect a generic in the near future. The costs of this medication are centered on the manufacturing of the medication and its protective coating. On a separate note, while Pentasa and other mesalamine-based agents can be helpful with some symptoms, it has not been shown to change the natural history of Crohn’s disease. If there is evidence of inflammation on colonoscopy or other diagnostics, we recommend considering other therapies with better evidence of improving the course of Crohn’s disease.
Q. I have been on and off Cimzia due to contracting CMV. Every time I am on Cimzia I get skin infections everywhere....my earring holes, belly button, and inside my nose get infected. I also have what looks like a fissure near my vagina with vaginal and rectal itching. Could this be a reaction to the Cimzia?
A. While Cimzia (certolizumab) and other anti-TNF medications are often well tolerated, potential exists for unwanted effects in some individuals. Outside of infections, there are a number of other considerations for these symptoms which may include a medication side effect, medication allergy, an immunodeficiency could cause some of these symptoms, and in fact Crohn’s disease itself could be responsible. While you are experiencing a variety of symptoms that require a thorough evaluation, should no clear etiology be found, it may be reasonable to substitute your current Crohn’s medication with an alternative and observe the response.
Q. Is it normal to have blood with diarrhea with colitis. I was diagnosed 2 weeks ago. I am taking Lialda and sometimes symptoms are better and sometimes not but I still have blood with the diarrhea and sometimes without. I am trying to find out if this is normal.
A. Finding blood in the stool is not uncommon in ulcerative colitis. While blood is often the result of ongoing inflammation in the colon, it is important to consider alternative causes including hemorrhoid bleeding and occasionally infection. It will take time for medical therapy to become effective, but if bleeding persists the cause should be evaluated. Further, if there is continued bleeding due to active ulcerative colitis, it may signify that the current treatment is insufficient and a different regimen is needed.
Q. I had surgery to remove 90% of my colon in 2008 and wear an ostomy bag. Due to complications of the surgery I cannot retain fluids. In order to maintain hydration it is necessary for me to infuse saline through a port each night. Are there any other options available or medication treatment.
A. If oral fluid intake is not sufficiently absorbed to maintain hydration, unfortunately intravenous fluid therapy is necessary to ensure the hydration status is maintained. If there is evidence of short gut (due to removal of part of the small intestine as well), then there is a new medication called teduglutide (Gattex) that has been shown to reduce the requirement for intravenous nutrition and hydration.
Q. I have Crohn's. I'm currently on Entocort and Humira, but I haven't been able to take my injections for at least a month now, due to various secondary infections (sinus infections, fungal infections). I take probiotics, eat yogurt, and have taken flucanazole and nystatin, but my thrush will not go away. How long does it take to successful treat these kinds of infections? Is this part of Crohn's? Or is this a side effect from immunosuppressants and antibiotics I've taken? My Crohn's is worse.
A. It is likely that the fungal infections, particularly thrush, may be a consequence of antibiotics and particularly the steroids (entocort) while the sinus infections may be from either the Humira or entocort. The duration of treatment for infections vary based on location and recurrence but can range from 2 weeks to a month. Sometimes prophylaxis is necessary to prevent recurrent fungal infections. If there is no concern for a significant systemic infection, it may be reasonable to restart the anti-TNF therapy with the aim of avoiding prolonged exposure to steroids due to a Crohn’s flare.
Q. I had surgery for my Crohn's in July 2013. They were able to do multiple stricturplastys (9) and not remove any of my small intestines. Now I am facing a surgery for a hernia which has developed. Generally can mesh be used for the repair?
A. Yes, mesh can be used for repair of hernias in patients with Crohn’s disease.
Q. I had a resection two years ago due to blockage from Crohn's disease. I have been on no medicine for over 5 years. I had a colonoscopy last year and the inflammation is back. Is that ok for Crohn’s disease patients not to be on medicine?
A. Most patients with Crohn’s disease will require some long-term medical treatment. In studies were people stopped medicines when they were feeling well and in remission, a substantial portion developed a relapse within two years. However, there is a subgroup of patients who, particularly after a limited surgical resection primarily related to strictures (which is what it sounds like you had) who do well for a number of years without recurrence of disease though in most cases, it comes back eventually. In such patients, it is reasonable to monitor for endoscopic evidence of active disease periodically (every 1 year or so) and then start treatment early once endoscopic lesions have developed but before clinical symptoms. We know that in most patients, endoscopic disease precedes clinical disease, and that treating early on is associated with better outcomes.
Q. I have Crohn's. I'm currently on Entocort and Humira, but I haven't been able to take my injections for at least a month now, due to various infections (sinus infections, fungal infections). I take probiotics, eat yogurt, and have taken flucanazole and nystatin, but my thrush will not go away. How long does it take to successful treat these kinds of infections? Is this part of Crohn's? Or is this a side effect from immunosuppressants and antibiotics I've taken? My Crohn's is now worse.
A. It is likely that the fungal infections, particularly thrush, may be a consequence of antibiotics and particularly the steroids (entocort) while the sinus infections may be from either the Humira or entocort. The duration of treatment for infections vary based on location and recurrence but can range from 2 weeks to a month. Sometimes prophylaxis is necessary to prevent recurrent fungal infections. If there is no concern for a significant systemic infection, it may be reasonable to discuss with your doctor restarting the anti-TNF therapy with the aim of avoiding prolonged exposure to steroids due to a Crohn’s flare.
Q. My sister has severe Crohns . I’m concerned because since she started hyoscyamine. She is experiencing numbness, and she has a lot of body cramping. Are these common medication side affects?
A. Hyoscyamine is an anti-spasmotic and anti-cholinergic medication used for a variety of intestinal ailments – mostly to combat the spasm associated with functional bowel disorders. It is at times used for the pains and spasms associated with Crohn’s disease as well. Sometimes, however, the anti-cholinergic properties of the medication are more pronounced than the beneficial effects. These adverse effects can include diarrhea, flushing, fast heart beat, eye pain, dry mouth, numbness and parasthesias, confusion, hallucination, et al. If a medication is causing more harm than good, the patient should speak to her physician about possibly switching to another type of therapy.
Q. I have ulcerative colitis and have two hemorrhoids. I use preparation H and moist wipes yet they are still uncomfortable and painful. Is there anything else I can try to help?
A. Hemorrhoids are most often painful when they have a small blood clot inside them (i.e. a Thrombosed Hemorrhoid). They generally go away over time, and there are some basic and less invasive measures that may be helpful. Part of the treatment, however, depends on how active the underlying ulcerative colitis is. Without having the UC in remission, the frequency of the bowel movements will worsen the irritation and pain associated with the hemorrhoid. Keeping the stool soft will avoid straining and alleviate endue pressure on the anal canal during bowel movements. Many patients find taking sitz baths to be helpful in relieving the symptoms.
Q. Please discuss self-dilation for rectal stenosis. What are the risk and benefits?
A. Rectal stenosis is a narrowing of the anal canal, and patients who have Crohn’s of the anus and part of the rectum closest to the anus are at risk for developing this condition. Similarly, patients who have had a J-pouch may sometimes develop a post-operative anal stenosis. It is important to have the stenosis (whether from Crohn’s or from the J-pouch) evaluated by a surgeon to make sure that the narrowing is not being caused by cancer. However, once the cause of the stenosis has been confirmed as a benign stricture, dilation is a very effective treatment. Often times, the first or second dilation is carefully performed under anesthesia so as not to damage the anal sphincter. If the stenosis recurs after dilations, self-dilation at home is sometimes very useful in alleviating symptoms of obstruction and constipation. Patients can be instructed how to safely insert the sequential dilators on a daily basis much like patients with recurrent esophageal strictures have been taught to self-dilate. The biggest risk is damage to the anal sphincter, but this can be avoided if the diameter of the dilators being used are slowly increased over time, and that there is not too much of a stretching initially.
Q. I am not able to afford my medication as I have no insurance - please advise me of programs that could help me or manufacturers of the medication that I could get for free. I need Flexeral, Delzicol 400 mg and Prednisone 5 mg - please help
A. There are a number of patient assistance programs that you may contact for help with paying for medication including: www.needymeds.org and www.rxassist.org. The manufacturer of Delzicol has not yet established a patient assistance program for this medication. Beginning Oct 1, 2013 you can enroll in one of the Health Insurance Marketplaces for low cost insurance. Check out www.healthcare.gov.
Q. I am 41 year old living with Crohn's since age 9. I have permanent colostomy with a resection of the small bowel, no terminal ileum. I also have chronic peristomal pyoderma gangrenosum. I may have lost remission due to a Norvo virus infection. I’m on 6-MP, steroid dependent and have hypersensitivity to Remicade and Humira. What other options are there for me to discuss with GI and I am open to trials? I know there are some having immune transplants and a new IV infusion from Japan. Any ideas?
A. There are options, FDA approved options would include certolizumab (Cimzia) and natalizumab (Tysabri). Ask your doctor if the 6MP treatment is optimized. Consideration might be given to using other immune suppressing treatments approved for other indications but not Crohn’s. Research treatments are another good option. The CCFA website has helpful information regarding participation in research trials: http://www.ccfa.org/resources/intro-to-clinical-trials.html
You can also search for available treatment trials on the CCFA website: http://www.ccfa.org/research/participate-in-research/find-studies-and-clinical-trials/
It is most important that you discuss your situation with your doctor. If your doctor does not have any recommendation beyond your current treatment, consider pursuing an opinion from a gastroenterologist with a special interest in Crohn’s disease.
Q. I have chronic, everyday perineal pain secondary to an unhealed perineal wound from surgery. After surgery my body reacted and pyoderma gangrenosum started to form in that area. I take ibuprofen everyday - usually six 200mg tablets a day. It seems this is the only thing that helps besides narcotics and I can't take those every day. What can ibuprofen do to my Crohn's disease down the road?
A. Ibuprofen has been shown to make Crohn’s worse, possibly causing flare ups. It can also cause stomach ulcers if used at the dose you are taking, even in people without Crohn’s. Of course, it is also not a good idea to take the narcotic pain medicines long term. You should discuss options to get the pyoderma gangrenosum under control with your surgeon and your gastroenterologist. When the pyoderma is controlled, there should be less pain and less need for the ibuprofen or narcotic pain medications.
Q. I am currently only on Remicade (6th year). It does keep symptoms at bay. However, frequently, a week or so before time for next treatment (every 8 wks) I get rashes on neck, chest, face, shins, or bend of arm. Is the Remicade wearing off too soon? Can you give me info concerning this issue? I have seen dermatologists and my MD. I get steroid shots and creams that do help but I would like to know the cause and possible prevention.
A. This is a peculiar pattern, most immune reactions to Remicade occur immediately or 1 – 2 weeks after infusions. Symptoms that occur near the end of the 7 weeks suggest that the Remicade effect is wearing off. It sounds like your Crohn’s symptoms are controlled for the whole 8 weeks, however. Skin lesions are best diagnosed by a dermatologist with a skin exam. Based on the timing, it is tempting to speculate that the skin rashes are a result of Crohn’s activity – but this would be best judged by your gastroenterologist and dermatologist. Ask your gastroenterologist if any testing needs to be done to assess the activity of the Crohn’s. Sometimes it is helpful to measure the Remicade level in the blood and also determine if your body is making antibodies against the Remicade – if it is suspected that the skin rash is some kind or Remicade reaction. This is an expensive blood test however.
The CCFA website has a description of skin lesions seen with Crohn’s. It does not sound like you have one of these, but ask your doctors: http://www.ccfa.org/assets/pdfs/skin.pdf
Q. I have had Crohn's in my terminal ileum since 2007, and maintained on Pentasa. I've recently become anemic. Colonoscopy and pill cam looked normal, but my SBFT indicated that my TI "appears relatively smooth and featureless with loss of its normal mucosal fold pattern consistent with a history of chronic terminal ileitis." My questions are:
1. Is my mucosal lining permanently damaged? Can it regenerate?
2. Would these results be enough to explain anemia?
A. 1. There may be some permanent scarring in the section of small intestine affected by the Crohn’s. There is potential for regeneration, but some scarring may be permanent.
2. It sounds like there is no obvious explanation for the anemia on the tests described. However, there are many cause of anemia besides loss of blood from active Crohn’s. Ask your doctor about this.
Q. I have recently had a flare up with my disease that I have lost 25 lbs, loss of appetite, no energy and spend most of my nights in the bathroom, I have been on azathioprine, lialda and prednisone, but have not had good results. Is there anything else I can do or ask my doctor so that I can feel a little human?
A. The most effective therapies for Crohn’s disease and ulcerative colitis are the anti-TNF agents. If you have not tried these, then that is the obvious next choice.
Alternatively, if you have severe disease due to bad ulcerative colitis or a blockage from Crohn’s disease, sometimes surgery is the best option.
Q. How long can someone receive regular infusion therapy? What are the long term effects of infusions?
A. First, you can receive infusion therapy indefinitely. If this therapy works for you then it can be continued until it no longer works or a better therapy comes about. Second, there is no specific long term effect of infusion itself except that patients can reject the drug and develop an infusion reaction, but that can occur at any time.
Q. I have just been diagnosed with Crohn's disease and my doctor feels cimzia is my best treatment option. My concern is the cancer risks, and being on this medicine long term (I'm 27).
A. The risks and benefits of all the anti-TNF agents (infliximab, certolizumab, adalimumab, golimumab) are similar. These agents are effective for the treatment of Crohn's disease (infliximab, adalimumab, certolizumab) and ulcerative colitis (infliximab, adalimumab, golimumab). They have never been compared head to head so their effectiveness versus each other is not know. They all have a 4-5% risk of serious infection (including reactivation of tuberculosis, fulminant hepatitis B, fungal infections) as well as an approximate 1/1000 risk of lymphoma. There is at least a 15% risk of skin reaction which is usually manageable with topical therapy. As these are antibodies, there is a risk of developing anti-drug antibody and increased clearance which would lead to reduced effectiveness of the drug and possible side effects. Ideally the medications should be taken in combination with an immunomodulator and on a regular schedule without interruption. It may take up to 3 months to see a strong response. Aside from lymphoma there is also a small increase in skin cancer with any immunosuppressive agent so annual dermatologic checks are recommended.
Q. I have recently started to lose a lot of hair. I have severe Crohn’s and am on Imuran and Remicade. The dermatologist says that these medications are associated with hair loss. I don't want to lose my hair. Have people had experiences with hair loss, and, if so, what have they done? The dermatologist said that at some point the hair loss will "level out" .
A. In the setting of Crohn’s there are several potential triggers for hair loss. Malnutrition, zinc and iron deficiency, excess vitamin A, severe illness, and medications are potential reasons. Inflixmab (Remicade) and azathioprine (Imuran) can rarely cause hair loss. Blood work through your gastroenterologist or dermatologist may help identify if there is a nutritional deficiency. If the hair loss can be clearly attributed to the medications, then it will need to be determined if the hair loss is from an immune related reason, such as alopecia areata. Patchy hair loss is seen with alopecia areata, whereas diffuse hair loss may be seen with nutritional deficiencies and malnutrition. Alopecia areata can sometimes be treated with medications that will allow continuation of Crohn’s therapies .I would recommend following up with your dermatologist to discuss the issue.
Q. What Treatment options do I have for Excessive BM I have 25 to 65 a day and have short bowel syndrome due to numerous surgeries due to infected areas from Crohn's? I have done so many things and no help. I also have severe hemorrhoids and they say they cannot do surgery on them due to since I use the restroom so much that the risk of infection is much higher. So I am at a loss. Any help please.
A. Treatment will need to include treating Crohn’s disease and treating short gut syndrome. If you have active Crohn’s disease, then medical therapy should be initiated or adjusted if possible. As far as management of short gut syndrome, this will require help from your gastroenterologist and dietician.
Some medical centers may have providers that specialize in short gut syndrome. Treatment of short gut may entail treatment with anti-diarrheals, octreotide, gastric acid suppressants, bile acid resins, dietary modification-decreased fat intake, treatment for small bowel bacterial overgrowth, and supplemental nutrition with total parenteral nutrition (nutrition through an intravenous catheter). Teduglutide, a glucagon like peptide 2 analogue, may help increase absorption and decrease fluid and nutrient losses in the small intestine. A short gut syndrome brochure is also available through the CCFA website.
Q. I have been on Remicade for almost a year. I was going to the hospital every 8 weeks for infusions, but now I go every 6 because of recurring symptoms. Is this common? How common? Have you ever heard of anyone going more frequently AND increasing the dosage? From time to time I will get a really red rash all over my body and my face and hands get puffy and it burns really bad. Is this a common side effect of the Remicade?
A. Loss of response to infliximab (Remicade) is common and occurs in up to 50% of patients. This may be due to increased clearance of infliximab over time. So by the 8th week you may no longer have drug in your blood stream. There is more than one approach to handle recurring symptoms. Your gastroenterologist may want to obtain an infliximab level immediately before you are due for an infusion to help determine if a change in infliximab dosing and frequency is needed. Your provider may decide to empirically increase the dose if you are not on the maximum dose or/and increase the frequency of the infusion based on the timing of your recurring symptoms.
Rash may occur with infliximab and I would recommend seeing your gastroenterologist and dermatologist to determine the type of rash (such as from a lupus like syndrome, psoriasis, or photosensitivity) and treatment needed
Q. What are the benefits of using brand Delzicol vs a generic product?
A. There are two groups of 5-aminosalicylates, mesalamine and non-mesalamine 5-aminosalicyalte. Mesalamines are 5-aminosalicylates that are released at specific pH. The non-mesalamine 5-aminosalicylates are released by bacterial breakdown. Delzicol is a mesalamine. There is no generic mesalamine available in the United States. Other oral mesalamines include Apriso, Asacol HD, Lialda, Pentasa, and Delzicol. The mesalamines differ in how they release inside the gastrointestinal tract. Your gastroenterologist can help you determine which product is best for you.
Q. I was diagnosed with UC almost 30 years ago. Last year, my gastroenterologist removed most of a "precancerous polyp"during a routine colonoscopy. Since then, the polyp has grown back in the same place during the 3x I was rechecked *, while there is no additional dysplasia, the dr. is recommending that I have a prophylactic removal of my colon and has referred me to a general surgeon. Where can I find more information about this type of surgery? Is there a specific type of specialist to ask?
A. If the polyp is in the field of active colitis and cannot be removed then the surgery is a proctocolectomy (colon and rectum removed). The surgeon would tell you if you are a candidate for a pouch (small intestine used to create a pseudo-rectum) versus an ileostomy. Colorectal surgeons specialize in surgery pertaining to the lower gastrointestinal tract. More information about proctocolectomy can be found at the Crohn’s Colitis Foundation Association website (Surgery for Crohn’s and Ulcerative colitis brochure) and the American Society of Colon and Rectal Surgery.
Q. What are the latest research findings on pig whipworm as treatment?
A. Modern hygienic lifestyles are thought to be associated with the emergence of IBD because the good hygiene is thought to decrease exposure to parasites like the pig whipworm. Some early clinical trials have suggested that exposure to helminths (worms such as Trichuris suis and Necator americanus) can improve IBD. Most recently, some of the immune regulatory mechanisms caused by helminth exposure that decrease inappropriate intestinal inflammation have been identified and could result in new therapies. Currently in the United States there is a multicenter double-blinded placebo controlled trial to test the effectiveness and safety of these therapies to cause remission in Crohn’s disease (Trial identifier NCT01576471) and ulcerative colitis (Trial identifier NCT01433471). Because many IBD patients are on medications that suppress their immune system, there are many safety concerns that are associated with helminth therapy and you should talk to your doctor to see if you are eligible to participate in a clinical trial.
Q. I am on a biologic for crohn’s and I’m having a hard time dealing with the disease. I am considering anti anxiety medication but I am worried that side effects from the medication can cause a flare up. Can anti anxiety medication cause a flare up?
A. It is very important to talk to your doctor about the tough time that you are having dealing with the disease. Depression and anxiety are very common in IBD and can be managed with medications. Many anti-anxiety medications are used to help manage symptoms and are not associated with a flare up in your IBD.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
Q. What is the response time in noticing any type of improvement with adalimumab or infliximab?
A. In general, most patients experience some improvement in symptoms within a week or two. In one of the early studies with infliximab, the average time for patients to experience a response to therapy was 7 days.
I usually evaluate patients 6-8 weeks after starting therapy with adalimumab or infliximab. If no or only partial improvement has occurred, I often increase the dose of infliximab or change the dosing interval of adalimumab. If after two additional months no improvement has been made, then I consider the patient a non-responder to therapy with adalimumab or infliximab.
Q. Fecal transplant therapy for Crohn's has had inconsistent results, possibly due to donor compatibility. Have any trials using this therapy been done with identical twins where only one had Crohn's? If yes, what were the findings?
A. I am not aware of any trials of fecal transplant in patients with Crohn’s disease using an identical twin as a donor.
There is one study being done in Canada in patients with ulcerative colitis where fecal biotherapy (transplant) is being compared to placebo enemas. There is another study being done in the Netherlands comparing fecal transplant to infusion of the patient’s own stool. However, the source of the stool for both of these studies is from an unrelated donor (http://www.clinicaltrials.gov/ct2/show/NCT01545908?term=fecal+transplant+and+ibd&rank=2 and http://www.clinicaltrials.gov/ct2/show/NCT01650038?term=fecal+transplant+and+ibd&rank=3).
Q. Does an allergic reaction with infliximab mean that it will be ineffective over the long-term?
A. Patients that experience infusion reactions can still have an excellent response to infliximab. However, we know that patients with infusion reactions are more likely to have antibodies to the drug. Furthermore, patients with antibodies to infliximab have a decreased duration of response to the drug. If loss of response occurs, it is more likely that your medical provider will need to change to another therapy over time. In addition, some times the allergic reactions or infusion reactions to infliximab are severe enough that either the patient or their provider are not willing to continue therapy.
There are several ways to decrease allergic or infusion reactions to infliximab. First, using acetaminophen and diphenhydramine before the infusion can help. Second, if you have experienced multiple reactions, a dose of steroids before the infusion as well as a short course of steroids after the infusion can help. Lastly, patients on immune suppressants while on infliximab (6 MP, azathioprine, and methotrexate) are less likely to have allergic reactions and antibodies to infliximab.
Q. Is there a pain medication that I can take without causing a flare-up? I have taken celecoxib and acetaminophen with negative results. The pain medication is required for comfort while I am waiting for a hip replacement.
A. Non-steroidal anti inflammatory medicines (NSAIDs) have been shown to increase the likelihood of flare of inflammatory bowel disease. This may be due to their effects on the production of a substance called prostaglandins at the surface of the lining of the bowel that will change the flow of blood and production of a protective mucous barrier. As such, ulcers can form. This will expose bacteria in the colon to the gut immune system beneath the surface of the lining and lead those immune cells to become more active and reinduce a flare of IBD. Celecoxib, along with ibuprofen, naproxen and aspirin are members of this class of medicine. Acetaminophen is not, but its efficacy on arthritic pains is sub-optimal. Another type of pain medicine is narcotics, which have their own series of problematic effects on the bowel as well as the rest of the body. One might consider Tramadol, which is in a class of medications called opiate agonists. It works by changing the way the body senses pain.
Q. I have been wearing a pouch for 16 years. I have had pain in my lower abdomen for about 6 months. I had a colonoscopy last week and the surgeon found that much of my colon and rectum have been sealed or obstructed over the years, which is what is causing my pain. Will I have to get my active colon and rectum removed or are there other options?
A. This is the sort of situation which has issues specific to the individual patient so there is really not any general advice that can be given. Discuss your symptoms and questions with your surgeon.
Q. My 20 year old son was diagnosed with Crohn’s about 2 months ago. He was prescribed budesonide which he started 2 weeks ago. He has had cold chills since he has been taking the budesonide and had one episode where his hand and inner calves started tingling. He also said that his lips felt funny. It only lasted about five minutes. Is this something we should worry about or are these side effects of budesonide?
A. These do not sound like symptoms that are definitely from budesonide, but everyone has different reactions to medication. If these are side effects from the budesonide, the side effects should go away when the medication is stopped. Budesonide is a steroid, but unlike prednisone (another stronger steroid) it is rapidly eliminated from the body so its effects on the body are very low (although there is some effect). Even though the side effects of budesonide on the body are much lower that with prednisone, it is a steroid – so it is often not used long term. Your son should discuss the long term plan with his doctor. A discussion of steroids, and steroid side effects, can be found in the medication section at CCFA.org.
Q. Do you have any recommendations for ways to keep myself on track of taking my medications now that I’m in remission?
A. I am very happy that you brought up this important issue. It is known that a large number of patients with IBD will miss doses of medications, especially when they are in remission: some people mistakenly think that if they feel well, they don’t need their medicine, but I would encourage you to believe that you are feeling well because of the medicine. There are multiple reasons that can contribute to patients not taking their medications as prescribed. Most of these patients simply forget to take them. If this is the reason, you can set reminders or alarms to improve adherence. Some smart phones also have apps that may remind you to take your medications. Allowing your family or spouse to participate in your care may also help you maintain adherence. Sometimes people forget to take medications in the middle of the day: if you are taking one particular medicine multiple times per day that requires a mid-day dose sometimes the regimen can be consolidated into taking the medication one to two times a day depending the medication. Further, some medications may be available in higher strength formulations so that the number of pills per day is decreased. If you have any side effects or concerns about long-term risk with any particular medication that makes you not want to take the medication, you should speak with your doctor about those concerns.
Q. My doctors are giving me a choice of starting a biologic or surgery. I also have an ileostomy. The doctors were hoping if I started the biologic soon I might prolong time for having surgery, but I have been stalling for a month, because I am afraid of the medicine. Do I have any other options? What steps should I take to better understand my options?
A. It is very difficult to give specific recommendations on therapy without knowing all the details about your disease, your response to previous treatments and current condition. I would recommend that you have a detailed discussion (during appointments reserved specifically for this purpose) with your physician and surgeon about the various options that are available to you with the intended benefits, potential risks and alternatives fully explained to you. In particular, you should address with your doctor your specific concerns about biologic therapy. I would encourage you to write down all your questions and concerns and bring this list with you to the appointment as sometimes patients forget what they want to ask. If you are still uncertain, consider a second opinion from a gastroenterologist specializing in inflammatory bowel disease (IBD), ie Crohn’s and ulcerative colitis.
Q. What is low-dose naltrexone and what is the evidence for this treatment?
A. There is experimental data that suggests that compounds called “opioids” which are naturally present in our bodies may be overactive and contribute to the inflammation seen in Crohn’s disease. Naltrexone is an agent that blocks these opioid receptors, and it is postulated that if we were to block these receptors, we may be able to improve the inflammation in Crohn’s disease.
In terms of the evidence for this treatment, as far as I know, there have been two trials in patients with Crohn’s disease comparing naltrexone to placebo. In both these studies, the patients on naltrexone did better than the patients taking placebo (or a “sugar pill”). However, the number of patients that were enrolled in these trials was small (17 in one study and 40 in the other) and the study duration was short (12 weeks in one and 24 weeks in the other).
So, although this is a promising approach for patients with Crohn’s disease, we need to wait for bigger studies with longer follow up before we can start recommending this to our patients.
Q. I have tried several different 5-ASA medicines to treat my UC, including mesalamine and balsalazide. Every one of them has given me really bad stomach cramps, bad diarrhea, and urgency. I know it's the medicine, because the only symptom I have without the medication is blood in my stool. I am starting to worry that all of the possible medication is going to make me sicker than not taking any medication. What are my options?
A. There are patients (approximately 5-15% depending on the paper you read) who have an intolerance to or allergy to 5 aminosalicylates (5ASAs). Often the person will notice worsening symptoms on the 5ASA and improved symptoms off of the 5ASA. The difficulty is that these are the first line or standard initial treatment for UC. When you take these out of the picture as choices, then the options are fewer. If the symptoms of UC are moderate to severe then it may make sense to consider a biologic treatment. This often works well for moderate to severe UC and is used in patients who aren’t treated by 5ASAs. Other options would be Imuran or 6MP. Finally, there may be an extended release budesonide mmx. This is a rapidly metabolized steroid that is coated in a way that allows for colonic release. This is not yet available in the United States, but may be shortly. This is much safer than standard glucocorticosteroids (prednisone) but may still have side effects longer term.
Q. Are there any studies on alternative treatments, such as acupuncture, massage or chiropractic?
A. Yes, but limited that have been tested with scientific rigor. It is my opinion that alternative treatments may be a good complement to standard IBD treatment. Some of the alternative treatments may also have a stress relaxing effect which may improve symptoms and possibly inflammation. For my patients who are interested in trying these alternative treatments I encourage this in combination with the standard treatment administered by the gastroenterologist.
Q. Any recommendations for maintenance treatment regimens/medications while in remission?
A. Generally, the medications that are used to induce remission are the medications that are used to maintain remission. The exception are steroids, e.g. prednisone, which has a potent induction of remission potential but is not safe for maintenance. Adherence to the maintenance medications is important in maintaining the longer term remission. The longer someone is in remission the less likely they are to have a flare, require a hospitalization, or develop a complication, e.g. cancer. The question that is being researched now is how long does someone need to stay on maintenance medications and when (can) they ever be stopped. My opinion is that the majority of patients will relapse with their IBD if they stop the medications but that about 30% do not. The trick is finding the predictors that will determine which patients may stop medications once they’ve established long term deep remission, and which need to continue.
Q. My son is almost 20 years old and was diagnosed with Crohn's Disease when he was 7 years old. In 2010 he started infliximab because he had started to have many flare-ups. Last month, he had a major flare-up for the first time since starting infliximab. His doctor checked and he has built up antibodies against infliximab. What are his next alternatives?
A. In a patient with antibodies to infliximab, they can switch to another drug in the same class – adalimumab or certolizumab and still get a benefit. These patients should be on combination therapy with azathioprine/6MP or methotrexate to reduce the likelihood of antibody formation.
Q. My 23 year old son has Crohn's (since age 16) and has been on biologic treatment for almost 2 years. As long as he stays on schedule with the infusions (about every 7 weeks), he feels good most of the time. Recently he mentioned to me that about once a day he experiences a bit of abdominal pain and it generally passes. Is the pain being caused by inflammation? Also, even while on the biologic, could he continue to have inflammation and the resulting complications from it?
A. Patients can become resistant to these medications over time as their bodies develop antibodies or start clearing the drug more quickly. It is important to check drug levels (available for infliximab) and increase the dose if it is low. It is also important to do a colonoscopy/radiology testing to see if there is active inflammation. If there is active inflammation the drug should be increased or changed as appropriate. The goal is to heal the mucosa and not have active inflammation though this is not always possible.
Q. What is the success rate for Proctocolectomies with ileal pouch-anal anastomosis (IPAA)? Who is a good candidate?
A. Please see CCFA website at http://www.ccfa.org/resources/removing-the-colon-surgical.html for more information. In general, the success rate of the IPAA is dependent on the following, in addition to other factors: experience of the surgeon; age of patient (younger people do better than older people); diagnosis (UC does better than indeterminate colitis); anal sphincter tone (if you are having a lot of incontinence prior to surgery, this will continue after surgery); and patient health (the more malnourished you are, the more steroids you are on, the worse the outcome).
Q. What are the most common complications for for Proctocolectomies with ileal pouch-anal anastomosis (IPAA)?
A. Your surgeon can give you a much more extensive list, but common complications include: small bowel obstruction; pouchitis; pouch leakage and abscess formation; reduction in ability to conceive (women); and sexual dysfunction (males).
Q. What are my treatment options (types of medicines) for IBD?
A. The specific medical treatment options for a patient depend on the type and severity of inflammatory bowel disease. For mild/moderate disease severity, 5-aminosalicylates (5-ASA) are local anti-inflammatory medications which can be given orally or by rectum. When disease is moderate to severe immunosuppressants are used. Immunosuppressants used to treat ulcerative colitis or Crohn’s disease include corticosteroids (such as prednisone), 6-mercaptopurine or azathioprine (pro-drug of 6-mercaptopurine), methotrexate, and biologics (infliximab, adalimumab, certolizumab, natalizumab). Corticosteroids are used for flare-ups of IBD and as a bridge until non-steroid immunosuppressants work. Which medical therapy is used also depends on whether one has Crohn’s disease or ulcerative colitis. The medical therapy that is right for you would need to be discussed with your doctor. Additional information about these medical therapies is available on the CCFA website.
Q. Is there any information on the effect of over-the-counter fitness supplements on ulcerative colitis? Is there a resource I can go to for more information on these supplements?
A. The real issue is what are the ingredients of the fitness supplement? If it includes lactose or non-digestible sugars such as sorbitol or mannitol, it may make diarrhea and abdominal discomfort symptoms worse. Too much of certain vitamins and minerals may lead to toxicity, such as vitamin A and iron but this may not directly affect ulcerative colitis. If you need to obtain more specific information about a supplement than what the label provides, then you will need to contact the manufacturer of that specific product. Contact information for the manufacturer may be found directly on the label. The FDA does not collect information about all supplements since FDA approval is not needed for the supplements to be sold. By law, dietary supplements need to be safe and data is collected by the FDA on supplements with adverse events reported.
Q. I have a simple perianal fistula that is responding well to adalimumab. However, I believe it has been causing constant headaches and sinusitis for three months. I have rhinitis, so it could have pushed things to a tipping point. I skipped a shot and the issued improved somewhat, but after about 4 weeks the fistula fired up. I re-commenced and within a few days the fistula improved. Are there less sinusitis problems with other biologics?
A. All the anti-TNF therapies (adalimumab, infliximab, certolizumab) used to treat inflammatory bowel disease can increase risk for sinusitis. You may need to see your primary care or an Ear/Nose/Throat specialist to discuss methods of treating and preventing sinusitis. Another option would be to treat you with a different class of immunosuppressants, such as immunomodulators if it is feasible in your case.
Q. I am having infliximab injections. The 5th one is next month. I have lost almost all of my hair and my scalp and arms are full of sores. Is this a side effect of the medicine? Will the sores go away and will the hair grow back?
A. Infliximab may induce a rash (such as folliculitis and psoriasis) and there are case reports of infliximab inducing hair loss by a psoriasis like syndrome. Some patients with psoriatic like alopecia (hair loss) and rash have responded to topical medications without stopping infliximab. You should be evaluated by a dermatologist to determine the reason for the rash and hair loss in conjunction with your gastroenterologist.
Q. I am currently taking certolizumab shots and was previously taking adalimumab. Both seem to have a side effect of an uncomfortable and dry mouth, not tasting, and poor appetite. Is this a common side effect of these medications?
A. This is not a common direct side effect of anti-TNF therapies (certolizumab, adalimumab, and infliximab). Although, you may need to be evaluated for infections that anti-TNF therapies may predispose you to, such as thrush (yeast infection of the mouth).
Q. I was weaned off of a cycle of prednisone about two weeks ago and have had no flares for about a month or so. This past weekend I began flaring and am now in a full on flare. Is there something more I can take or do other than my 4 prescribed mesalamine? Or recommended meals/drinks that will ease the pain? I just feel that there has to be something else that will help me other than prednisone.
A. There are several non-steroid medications aside from mesalamine. Which medications to consider depend on whether you have Crohn’s or ulcerative colitis. The non-steroid medications take time to work and will usually require bridging you to these therapies with steroids.
During times of flare ups, low fiber and lactose free diets are recommended to reduce symptoms. Also recommend during flares: avoidance of aspirin and ibuprofen based products and, if you have Crohn’s disease, smoking cessation.
Q. Since I have had really bad side effects in the past with prednisone, I am now on budenoside 9 mg/day for Crohn's. How long before I start to see results? Is this a large dose or is it possible I should be taking larger dose?
A. Several studies have shown that budesonide is effective for induction of remission in mild to moderate ileal and ileocecal Crohn’s disease. In these studies, patients were on budesonide 9mg/day for 8 to 12 weeks. However, patients have reported improvement in symptoms as early as a few days from starting therapy. There was no improved benefit seen on higher dose of budesonide.
Q. After 29 years averaging 15mg daily on prednisone, I dropped to 5mg daily in a couple of months and am now on infliximab. After two months at 5mg daily, I had a long day where I got dehydrated, short on sleep, and came down with chills, which progressed to severe shakes. I took 15mg of prednisone, which calmed me in 30 minutes. The ER doctor found no cause. Is this a possible side effect of the medication? It has re-occurred twice and was abated by prednisone.
A. Infliximab has been shown to cause severe shakes (rigors) during an infusion. Otherwise, the infliximab suppresses your immune system and as a result makes you more likely to get an infection which can cause you to have the shakes and chills. Taking a higher dose of prednisone at times when you have the chills/shakes can be dangerous as the prednisone can worsen the infection. You should see your gastroenterologist to discuss these symptoms to determine if there are other causes for your chills and rigors.
Q. I am taking 100 mg per day of mercaptopur and was wondering how long one can stay on this medication.
A. Mercaptopurine has been shown to be effective in reducing the risk of Crohn’s disease recurrence. Many patients can remain on mercaptopurine indefinitely if needed to control their IBD. Others can be tapered off after several years. Do not stop your mercaptopurine or any of your IBD medications without first speaking to your gastroenterologist.
Q. In researching the benefits of aloe supplements, I have found contradicting information. Can you explain what the potential benefits and/or risks are?
A. There is no good data to date to show that aloe benefits colitis. Moreover, there are many forms of aloe and some can even be harmful to the colon. Furthermore, it is difficult to know which of these forms you are getting when you buy it. Studies are ongoing in animals, but at this point it is not a recommended treatment for colitis.
Q. My daughter has Crohn’s disease and recently began taking colesevelam and immediately started having blood in stool. Is this a side effect of the medicine?
A. Colesevelam is a medicine used to reduce cholesterol, but can also be used sometimes to treat diarrhea. Blood in the stool is not a commonly reported side effect of this medication. First thing, she should see her gastroenterologist to discuss the symptoms and make sure this is not related to active Crohn’s disease.
Q. I recently visited a new doctor and he told me that smoking will be beneficial. Are there any studies showing that smoking will be beneficial for patients with Ulcerative colitis?
A. Beneficial is probably too strong a word, and no one has formally studied the direct effect of smoking on the course of ulcerative colitis, though a questionnaire-based study in the Netherlands suggested the smokers who had ulcerative colitis and continued had fewer hospitalizations than those who quit. Nevertheless, the net effect of tobacco smoke and its association with heart disease, stroke, chronic lung disease and numerous cancers is too great to ignore, and smokers should quit and be treated aggressively for their ulcerative colitis.
Q. I was diagnosed 5.5 months ago. I started off with prednisone and two months ago began azathioprine and was tapered off prednisone. I'm having pain in different parts of my abdomen and it varies from mild to medium. Is this due to no more steroids? Will it settle down or do I need some other medication?
A. Not everyone responds to azathioprine and there is a chance that what you’re feeling is Crohn’s, though there is a possibility that it is a function of prednisone. It is best to check this out with your gastroenterologist.
Q. I was put on prednisone a couple of days ago for my Crohn’s disease; my face is very flush--is that a normal side effect?
A. There are a number of side effects to prednisone—and facial flushing is among them. This is likely a side effect you can push through, but it’s worth discussing it with your doctor. Many IBD experts do their best to minimize prednisone exposure, favoring medications such as thiopurines, methotrexate, and anti-TNF medicines such as infliximab, adalimumab, and certolizumabpegol.
Q. I was diagnosed with Crohn’s in 1998 and was recently diagnosed with perianal fistula confirmed via MRI. I did have a small bowel follow through, which showed no other fistulas and had a colonoscopy that showed no active Crohn’s. I am offered now to start a biologic. Does this seem like the best option or should I investigate others?
A. For persistent fistulas that are draining, the biologics are excellent medicines, but others have been demonstrated to close fistulas also, albeit in less well designed studies. These primarily include thiopurines (6-MP or azathioprine) and cyclosporine; an antibiotic, metronidazole, can dry out fistulas, but they don’t heal very well.
Q. Do you have any thoughts on switching from one brand of mesalamine to another? What are the differences? I have had a resection and have Crohn's Colitis.
A. In general, the mesalamine-type drugs have only a mild treatment effect in patients with Crohn’s disease. However, patients with colonic disease like you may do better with these agents. Overall, these agents all seem to be equally effective if given at the same dose.
Q. I have Crohn's and was just diagnosed with severe gastritis. Is this common?
A. The stomach can be involved in Crohn’s disease in less than 5% of cases. The main question in this situation is whether the inflammation in the stomach is related to Crohn’s disease or is it related to some other cause? For example, patients with Crohn’s disease can develop inflammation of the stomach from other causes, such as use of non-steroidal anti-inflammatory agents (ibuprofen, naproxen, etc.), bacterial infections (Helicobacter pylori), and opportunistic infections if they are being treated with immune suppressant or biologic drugs (Herpes simplex virus, Cytomegalovirus, etc). It is possible to distinguish between these different causes of stomach inflammation with a biopsy of the stomach during an endoscopy.
Q. I have left-sided Ulcerative Colitis. How long does it take to go into remission with biologics? I am on my third infliximab infusion and still have bleeding and pain. Should I ask my doctor to take other tests to determine the cause of this ongoing symptoms?
A. Everyone responds to therapy a little differently. We usually allow 8-12 weeks of infliximab therapy to determine if there has been a response or not. Doing a flexible sigmoidoscopy or colonoscopy can tell if the infliximab is making a difference or not.
Q. I'm recovering from j-pouch surgery, and am wondering what I can do for the incontinence I'm experiencing. It's been about 1 1/2 weeks.
A. Incontinence can occur for several weeks to months after a pouch surgery. The anal canal must get used to the new pouch. Medications like loperamide as well as fiber can help decrease the number of stools and help to thicken it up.
Q. Is it possible to have internal rectal scar tissue even though my biologic is "working" in preventing diarrhea from inflammation?
A. The body’s response to inflammation is to try to heal it by forming a scar. It is not uncommon in a patient with Crohn’s disease to develop scarring in the rectum or anal canal even when the rest of the colon is in remission and healed.
Q. My 27 yr old son-in-law was just diagnosed with Crohn’s. He has symptoms that indicate Crohn’s however they are going to do radiation on this thyroid. I have not seen any references to the thyroid in my research so this concerns me. He has lost 30lbs in about 2 months, has "the shakes" and they did an MRI and that is when Crohn’s was determined. Should a second opinion be sought?
A. The simultaneous occurrence of two new illnesses, such as Crohn’s disease and thyroid disease, is somewhat unusual, so one would want to be 100% certain of the accuracy of both diagnoses. Furthermore, the diagnosis of IBD is based not just on x-ray findings, but should also include a careful synthesis of clinical symptoms, laboratory results, endoscopic, and pathologic findings. In general, it is often useful to get a second opinion from a physician who focuses on the diagnosis and treatment of patients with IBD.
Q. I was diagnosed with Crohn’s in 2009. I do not have a weight loss problem, but the opposite. I eat when I am nauseous. I have recently put on more weight as my life became more stressful and I am experiencing more flare ups. Are anti-nausea medications okay for long term use in Crohn’s patients?
A. Anti-nausea medications are usually not recommended for long-term use. Chronic or recurrent nausea, with or without vomiting, is often either a sign that something is wrong or a medication side-effect. It is best to try to understand the cause of the nausea and correct the problem, rather than simply cover up the symptom with chronic use of anti-nausea medications.
Q. I have a 30+ year history of Crohn’s Disease currently considered in remission due to surgery and continuing meds. Now I have pulmonary complications (chronic brochiolitis) consistent with Crohn’s patients or patients on immunosuppressive drugs. What are the treatment options for this?
A. Bronchiolitis is a serious lung condition and the treatment for this should be directed by a board-certified pulmonary specialist physician. The treatments for bronchiolitis depend in part on the specific cause and severity of the inflammation, but can include corticosteroids, like prednisone and immunomodulators. If the bronchiolitis is caused by the Crohn’s disease, treatment of the Crohn’s disease may improve the condition.
Q. I was diagnosed with UC in 3/2005 and treated with prednisone and eventually mesalamine. I went into remission about a year later and was able to manage my flares with prednisone. In 2009, I was injured and unable to exercise. My flares became more frequent, the prednisone not as effective. Since then I've been hospitalized several times and had a C. diff infection. Currently either the C. diff is back or my UC is flaring again—what should I do?
A. It is critically important to determine if your symptoms currently are from a flare of ulcerative colitis or from recurrent C. Diff infection. C. Diff should be fairly easy to exclude by doing a stool C. Diff PCR test which is over 95% accurate. Alternatively, a course of antibiotics such as metronidazole or vancomycin can be prescribed. If your symptoms resolve, this is supportive of C. Diff as opposed to an ulcerative colitis flare. If your C. Diff is negative or if you do not respond to antibiotics, a flexible sigmoidoscopy can be performed to confirm the presence of active colitis. At that time, medical therapy for colitis should be instituted and could range from mesalamine products, to steroids, to infliximab depending on the severity of symptoms and what you have been on previously.
Q. I have severe chronic ulcerative colitis and I am considering requesting that I have surgery to remove my colon. What are my options?
A. Treatment options depend on what you have been on in the past. Assuming that you have not responded to or are allergic to mesalamine products and that you have been on prednisone in the past, you can consider using immune suppressants like mercaptopurine or azathioprine and biologics like infliximab. Other “off label” options include the use of drugs like methotrexate, rosiglitazone and tacrolimus. In addition, you can participate in a clinical trial of new agents for ulcerative colitis. A medical provider in your area should be able to give you guidance about whether or not any of these options is appropriate for you. Alternatively, you can seek another opinion at an academic medical center that specializes in the care of patients with ulcerative colitis.
Q. When does the patent for infliximab expire? It has been highly successful for me, but cost prohibitive and I don't qualify for their "help" program. Are there any other financial options for me to reduce the cost?
A. It is not clear if or when generic drugs (called biosimilars) will be available as an alternative to infliximab. This is a controversial topic at the moment. In general, I recommend to patients that they stay on their medication if they are tolerating the drug and still responding to treatment. If it is no longer financially possible to continue on infliximab or other biologic therapies, I would consider a few options. First, there are a number of co-pay foundations to help cover out of pocket expenses associated with these treatments. Second, sometimes high costs associated with infliximab and other treatments given by IV are related to the site of infusion. For example, costs are higher in hospital-based infusion centers compared to office-based infusions. If this is the case, you can simply find an office based infusion center close to you to provide your treatment.
If these options are not helpful, you should discuss other options with your medical provider. One option would be to transition to other biologics in the same class as infliximab such as adalimumab or certolizumab pegol. Sometimes, these drugs are covered better than infliximab by your insurance plan. Another option would be to stop biologic therapy and transition to an immune suppressant like mercaptopurine or azathioprine. This approach has been championed in Europe and can be successful especially if your Crohn’s disease is completely in remission (normal blood work and healing of the intestinal lining). Both of these options have some risks associated with them, primarily that your Crohn’s disease may flare with the change in therapy.
Q. I have CD and have problems with ulcers - last EGD showed five of them (2 antral and 3 pre-pyloric in stomach). Lots of burning, nausea, vomiting, and pain through to my back. I have been on omeprazole 20mg each day x 2 yrs, and have been getting infliximab x 10yrs. Any ideas on best route of treatment?
A. First, I would confirm that the ulcers in the stomach are from Crohn’s disease. Usually, ulcers from Crohn’s disease have a characteristic appearance. Biopsies of the ulcers should also show typical microscopic changes of Crohn’s disease.
If the ulcers are indeed from Crohn’s disease, I would recommend a few things. First, if you are actively smoking, I would stop smoking; smoking cessation is associated with improved outcomes in patients with Crohn’s disease. Furthermore, smoking is an important cause of non-healing ulcers in patients with ulcers not related to Crohn’s disease. Second, I would avoid using non-steroidal anti-inflammatory drugs like aspirin and ibuprofen. These drugs can cause damage to the gastrointestinal tract and can worsen Crohn’s disease. If this does not help, you should meet with your medical provider to determine if you are losing response to infliximab. This occurs in 30-40% of patients and can be managed by changing the dosing interval or increasing the dose of infliximab. Adding an immune suppressant like mercaptopurine or azathioprine or changing infliximab to other biologic agents like adalimumab or certolizumab pegol are other options.
Q. I have Crohn's and am currently on mesalamine and infliximab. I have developed a severe rash on my arms only. Could this be caused by my Crohn's or meds?
A. Your rash could be related to your Crohn’s disease, your medications or neither. It is very important that you are evaluated by your medical provider to determine a cause for the rash.
In general, Crohn’s disease is associated commonly with two rashes, erythema nodosum and pyoderma gangrenosum. Erythema nodosum usually presents with painful discolored lumps on the shins of your legs. This usually occurs when your underlying Crohn’s disease is active (abdominal pain, diarrhea, etc.). Pyoderma gangrenosum can occur when your Crohn’s disease is in remission, typically with painful ulcerations anywhere on the skin surface. Rashes have been reported in 1-6% of patients using mesalamine. Rashes also can occur when using infliximab. One of the more common rashes, occurring in 3-5% of patients, is a rash that looks like psoriasis. This rash is usually located on the scalp, palms, and soles and can be blistering and painful.
Q. I had surgery in 2005 and they removed 10 inches where the Crohn’s was due to a blockage. Since then I have been great. Then this year my liver went bad and I am on Imune azathioprine. Now my Crohn’s has flared up again and my doctor suggests surgery or infliximab due to a new blockage. What does infliximab do and what are the side effect? Is surgery or medication a better option?
A. Infliximab is an antibody. Antibodies are proteins that bind very specific molecules. Infliximab is an antibody that binds a chemical called tumor necrosis factor alpha (TNF-a). TNF-a is a chemical that causes inflammation. When infliximab binds TNF-a, it inactivates, decreases or completely eliminates inflammation caused by Crohn’s disease in many patients. Infliximab is given as an intravenous infusion. Side effects include symptoms during or shortly after the infusion, an increased risk of infection, and, though small, increased risk of certain cancers. There are other side effects as well, and patients should have a good understanding of these prior to starting any medicine. As is the case with all treatments for Crohn’s disease, the risks of the medicine should be considered with the medicine’s benefit.
Surgery may be necessary in Crohn’s disease because some medicines are not helpful in certain instances. If a bowel obstruction is caused by inflammation, it may improve with medicine. If a bowel obstruction is caused by scar tissue, surgery may be required to relieve the obstruction. Again, the patient should have a complete understanding about what the potential benefit of surgery is, and what the potential risks are. With all that said, some patients benefit significantly from surgery.
Q. My 17 year old son was diagnosed with UC in October 2010 and the diagnosis was changed to Crohn’s disease in April. He’s gone through many different treatments and is now on infliximab. The inflammation and symptoms have reduced, but he’s not in remission. I’m concerned that he’s gone 16 months with continued inflammation. Is it possible to safely replace infliximab with a 6MP or some kind of combination therapy?
A. First of all, there are several reasons for ongoing symptoms in the face ofwhat should be effective Crohn’s disease therapy. The cause of symptoms may be due ongoing inflammation due to Crohn’s disease, which may be suspected based on laboratory tests or endoscopy/colonoscopy. If Crohn’s inflammation is present, then medicines should be optimized. Some patients don’t take their medicines. There are many reasons a patient doesn’t take their medicines: I have found the most common reason is they forget or they have side effects and are afraid to tell their doctor. Whatever the reason, tell your doctor if you aren’t taking them and why. If you are taking your medicines, there are ways your physician can tell if the dose is incorrect or if it’s not effective. There are certain tests that may help a physician decide if infliximab dosing can be increased or why it is not working. While adding mercapturine (6MP) may be considered in some patients, there is a concern that infliximab AND 6MP may increase the risk of certain infections and cancers.
If inflammation cannot be found or doesn’t appear to be causing symptoms, other reasons for ongoing IBD symptoms should be considered. One alternative explanation for ongoing symptoms is a stricture or scar in the intestine. If present, strictures may not respond to any therapy and require surgery to repair. Lastly, ongoing Crohn’s disease symptoms while on therapy may be due to non-Crohn’s disorders of the intestine, including infection—particularly Closteridiumdifficile, undiagnosed celiac Sprue, lactose intolerance, or irritable bowel syndrome. Patients, their families, and physicians should explore all potential explanations for ongoing symptoms while receiving what should be effective therapy.
Q. If you have developed antibodies against one biologic drug, does that mean you will develop antibodies against other biologic drugs?
A. Infliximab, adalimumab, and certolizumab pegol are medications used to inactivate a chemical called tumor necrosis factor alpha (TNF-a). These therapies are antibodies—proteins that bind to and inactivate very specific molecules. They are called biologics because they are antibodies.
Antibodies to infliximab increase the risk of infusion reactions, and may decrease the effectiveness of infliximab. Sometimes additional medications (such as methotrexate) are given to patients in addition to infliximab to attempt to prevent the formation of antibodies to infliximab. Antibodies to infliximab can be measured in the blood, and if they appear to be clinically important in a given patient, therapy with another biologic (adalimumab or certolizumab pegol) can be used. This is because the antibodies to infliximab don’t react with adalumimab or certolizumab pegol. Antibodies against adalumimab and certolizumab pegol can develop, but currently, there are no blood tests commercially available yet to measure them.
Q. My 13 year old daughter has ulcerative colitis. She is currently on infliximab and had been in remission for a year, but has experienced a mild flare up. Can you flare on infliximab, or should I worry that the infliximab is not working anymore?
A. Over time infliximab can lose its effectiveness. This can be due to several things: (1) your body has formed antibody to infliximab so it is destroying it and there is less available to treat the disease; (2) your body is clearing infliximab quickly so you need more to maintain the same effect; (3) your body is no longer responsive to this mechanism of treatment; (4) there is something else going on like an infection.
Our recommendation in this setting is to confirm disease activity (colonoscopy or flexible sigmoidoscopy), rule out stool infection and check an infliximab blood level and antibody at trough (right before the next dose). If the infliximab levels at trough are detectable, then it is either option #3 or #4. If there is no infliximab level at trough then it is option #2 and your doctor needs to increase the dose. If there are antibodies to the drug at trough (#1) then you need to find another option to treat your ulcerative colitis.
Q. I am considering going off of medications and want to know what risks I take, besides the risk of colon cancer, by not being on these medications? I am currently on mesalamine and steroids, but the mesalamine isn’t working and steroids aren’t long term. I think my quality of life will improve by not being on medication. I could work my job before the meds, but now I find it harder.
A. If mesalamine isn’t working then there is no point in taking it. We think mesalamine reduces your risk of colon cancer primarily by controlling inflammation. If it is not doing that then there is no point. You are right - steroids are not a long term solution. Immunomodulators (azathioprine, 6MP) added while tapering off steroids are helpful as are biologics (infliximab for UC; infliximab, adalimumab or certolizumab for Crohn’s). Not treating your disease is the most risky option as this can lead to malnutrition, anemia and, in some cases, perforation leading to emergency surgery. Immunomodulators, when started at full dose can work as soon as 4 weeks and certainly by 12 weeks. Biologics can start to work within days. Also, if you have ulcerative colitis, surgery can be curative.
Q. I have Crohn’s and have been taking infliximab and recently switched to adalimumab to avoid the side effects. I have dizzy spells frequently, very little energy, and a sore mouth. The corner of my mouth is tight, nothing tastes normal, and I have a sore throat. Swallowing is difficult and I get hiccups with first swallow of any alcoholic drink. Are these typical side effects of these medications? The medications have completely eliminated the Crohn’s symptoms.
A. Most patients on these medications have no side effects, so what you are experiencing certainly warrants a full evaluation by your physicians. I would certainly check for infections. Some infections associated with immunosuppression include candida (which can give you a sore mouth, red cracked skin and sore throat) or viral infections like herpes. With respect to the dizzy spells that is not normal. You need a full work up from your primary care doctor for anemia, vitamin deficiency and any type of inner ear or brain issue. Rarely, infliximab and adalimumab can give you a “lupus” like syndrome, which is a reaction to the medication and should be part of your evaluation.
Q. I frequently have urgent needs to have a bowel movement. It can be solid or diarrhea in form but it requires immediate access to toilets. It has caused "accidents" to happen. What help can I get?
A. Urgency, or the feeling of having to have an immediate bowel movement, is common when there is proctitis, or inflammation in the rectum. Sometimes, the sense of urgency is so great that despite every effort, accidents will happen. This is not a lack of sphincter control (the muscles that control this area); this sensation reflects stool in the rectum and the response of an inflamed rectum trying to expel its contents. The most important element in your situation is to seek medical help, as the diagnosis of proctitis can be made generally with clinical examination and sigmoidoscopy. There are a number of treatments for proctitis that can help alleviate the symptoms of urgency.
Q. My son has Crohn's disease and also has cerebral palsy with epilepsy. He is taking infliximab and had side effects of increased seizures and mood and behavioral changes. What is going on?
A. Infliximab is a monoclonal antibody directed against tumor necrosis factor-alpha (TNF-alpha) that has received FDA approval for use in moderate to severe or fistulizing Crohn’s disease refractory to other conventional therapies. Infliximab and other medicines that inhibit TNF have been rarely associated with the onset or exacerbation of central nervous system disorders including mental status changes or permanent disability, particularly in people with multiple sclerosis or other demyelinating disorders.
Seizures following infliximab treatment are very rare and there have been a few reports of infliximab-related seizures that resolved with discontinuation of infliximab treatment. Sometimes the findings are subtle and require MRI of the brain and/or electroencephalograph (EEG) monitoring to detect changes. You should discuss your son’s neurological and behavioral changes with your physician.
Q. I have been taking sulfasalzine, azathioprine, and folic acid without any problems since ‘02. A month ago symptoms returned including diarrhea and bleeding-I've had small recurrences in the past which went away quickly but am worried as it been over a month. I've tried changes in diet including eating smaller meals, but haven't had any success. I read that Psyllium fiber in a glass of liquid every night before bed could be an option? Anything else I can try besides trying different meds?
A. Talk to your doctor about your specific case, as you may be able to do short term treatments, like enemas or increasing the dose of your sulfasalazine (depending on your current dose), to get back into remission and then may be able to continue on your previous medical regimen. If you have already been adjusting your diet and have continued to have symptoms for the last month, it is time to get help from your doctor. Psyllium may help to bulk to stools somewhat, but wont treat the underlying inflammation in your colon.
Q. I have had Crohn's Disease for three years. I have been well controlled until my pregnancy and choice to breast-feed resulted in a flare and I developed a very superficial perianal abscess at the anal verge. I and D performed by colorectal surgeon, but it refilled and I was able to drain myself. Now my surgeon wants to do a fistulotomy for the fistula: suspect a low, simple fistula. My meds are flagyl, 6-mp and entocort. Should I wait to see if meds help or go ahead with surgery?
A. An important aspect of your situation is to know whether you have inflammation in your rectum along with the fistula. If there is no rectal inflammation, a fistulotomy is not unreasonable given that you have had recurrent problems with abscess. On the other hand, if you do have active inflammation in the rectum along with the fistula, a fistulotomy is an option, but your surgeon may also want to consider placing a seton (small rubber band placed through the fistula to keep it open and prevent abscess while it heals up) instead of a fistulotomy, while giving your medicines time to help heal the fistula as well. Discuss these options further with your doctor to decide which is the best option for you.
Q. My 13yr old was diagnosed with CD 2.5 years ago, she is presently taking mesalamine. Much of her inflammation is located in the rectum, but every time she tries a rectal med (mesalamine enemas, suppositories, or corticosteroid foam) it just seems to aggravate her symptoms (painful cramping and more frequent bowel movements). Do you have any advice? She has trouble having a bm and yet it isn't constipation as the stool is soft. Her doc still tried stool softeners but it just caused frequent bms.
A. A number of conditions can co-exist with Crohn’s disease, including anal fissures and altered regulation of the nerve and muscle function of the rectum involved in evacuation of stool. A good anal examination and possibly anorectal manometry testing in which the nerve and muscle function can be formally evaluated can be a good supplement to a sigmoidoscopy or colonoscopy to help determine the nature of the problem.
Q. In 2001 I had 22" of small bowel removed and resected where the small gut meets large. Now I have a stricture at the site in the small intestine. Would strictureplasty be a viable solution or another resection?
A. A number of different options can be utilized to relieve the symptoms of a stricture of the small intestine in a patient with previous small intestinal surgery. These are a second resection, a strictureplasty, and, in the hands of a capable endoscopist, a through-the-scope balloon dilation of a stricture. The precise location and anatomy of the stricture (where relative to the surgical connection, how long the structure segment is, and whether there is an increase in the diameter of the intestine above the area of the stricture, can help you and your doctors determine the best approach.
Q. How successful is the long-term use of 10% hydrocortisone rectal spray foam in the treatment of rectal tenesmus for a Crohn’s or ulcerative colitis patient?
A. There are few long-term studies looking at this problem, but 10% hydrocortisone rectal spray foam is very effective in the short term treatment. Selecting a medicine or combination of medicines that keeps the inflammation of the rectum under control will likely keep the rectal symptom of tenesmus under control; usually, I tend to think of 10% hydrocortisone rectal spray foam as an adjunct to other medicines used to maintain remission, but I do have some patients who have been on it for a while.
Q. After my 3rd infusion I had a rash reaction all over my body. To avoid that my doctor gave me a steroid injection before the infliximab along with an antihistamine and tylenol. I did not have a rash, but I did develop a sore mouth. Lips were like chapped, corners of mouth dry and were strained when I opened my mouth wide. It felt like my mouth shrunk. The inside of my lips felt rough and strange (a little like small canker sores might feel but I couldn’t see any). Is this a common reaction?
A. Infusion reactions occur in 10-15% of patients treated with infliximab. Most reactions are mild and can be treated with additional medications during the infusion, slowing the infusion, or stopping and restarting the infusion. For more severe reactions, premedication and sometimes post medication with steroids prevent future reactions.
Body rash can be side effect of infliximab. The most worrisome skin rashes include a lupus-like reaction and a form of psoriasis seen only in patients on infliximab. The resolution of the rash with steroid pre-treatment argues against either of these disorders.
I have not seen the mouth ulcers you report related to treatment with infliximab. Patients with Crohn's disease or ulcerative colitis can get aphthous ulcers or "canker sores" when their bowel symptoms are active. These usually improve with treatment. Other problems that can occur in the mouth in patients with Crohn's and ulcerative colitis include vitamin B12 deficiency and zinc deficiency. These disorders should be excluded.
Q. Having been diagnosed more than 10 years ago I have become resistant to just about all treatments, including all 3 generations of TNF alpha's. My doctor is now suggesting thalidomide. From what I can find on the net; this was a promising therapy being looked at just before infliximab was introduced. Are there any current studies on thalidomide therapy available? The most recent I could find was dated 2008.
A. Thalidomide has not been extensively studied in patients with Crohn's and ulcerative colitis. It is thought to work by decreasing anti-TNF levels, a mechanism similar to that of the TNF blockers you have been treated with previously. According to clinicaltrials.gov, there are no registered trials of thalidomide for adults with Crohn's or ulcerative colitis in this country. However, thalidomide can be given off label for treatment of Crohn's and ulcerative colitis if your provider feels comfortable using it.
Q. I am scheduled for a colectomy/ileostomy. One of the medications I am taking (for a non-Crohn’s related disease) has withdrawal effects, including vomiting. My concern is that, post-surgery, the GI transit time will be too fast for enough of the medication to be absorbed into the blood system, resulting in the aforementioned withdrawal effects. Has anyone worked with venlafaxine just after ileostomy surgery or a similar situation?
A. Not that I know of. This is a good question, and you should review with your GI doctor and the doctor prescribing your other medication the plan for the period after your surgery.
Q. Is it possible to have a bowel resection done where the entire transverse colon is removed and the ascending and descending colon are reattached together? I have stricturing of the transverse colon and was given the impression by a surgeon that most of the colon would have to be removed because of it.
A. Yes, if the ascending and descending colon are healthy, than these can be re-attached together.
Q. I have tried all of the traditional treatment programs for Crohn's up to and including infliximab. I don't have profound symptoms - just some minor bleeding, loose stool, and mucus discharge. I stopped all treatment about two years ago, since it wasn't helping with my primary symptoms, which are a constant stomach cramp and severe bloating. Do you have any advice on how to deal with those two chronic and uncomfortable symptoms? I am 65 years old. I look like I am 6 months pregnant.
A. You may want to speak with your GI doctor to make sure that your stomach or small intestine are not affected by Crohns, which could cause these symptoms. If you find that Crohns does not seem to be the cause of your symptoms, than you and your doctor may want to look at other conditions which could be causing inflammation in your stomach and small intestine, dietary factors, such as lactose, or overgrowth of bacteria in the small intestine.
Q. A recent CT scan showed thickening, inflammation and narrowing of small bowel at the site of connection of the Jpouch to small bowel as well as the site of ileostomy. I had an ileoanal colectomy in 2002, reconnected in 2003 and have experienced pouchitis and pain on right side (where ileostomy was) on and off. Medication to control inflammation and removal of JPouch if this treatment fails is currently being considered. Are there other options or suggestions?
A. The description of the X-ray results suggests that you may have Crohn’s disease of the ileoanal J-pouch. If this is the case, then aggressive treatment, including biologic therapy (e.g. infliximab, adalimumab, or certolizumab) would be appropriate. Another, though less likely diagnosis would be pouch ischemia. A pouchoscopy and biopsy should be able to distinguish between these two possibilities. Most patients with Crohn’s disease of the ileoanal pouch can be controlled and improved with medical therapy. However, about 20% of patients with Crohn’s disease of the ileoanal J-pouch will need to have surgical removal of the pouch and an ileostomy.
Q. I want to learn more about methotrexate: side effects, benefits to taking it, how often it is taken and in what manner. My doctor wants to add it to my adalimumab usage.
A. Methotrexate works by interfering with the normal body metabolism of the vitamin folic acid. For treatment of active Crohn’s disease, it is usually given subcutaneously (injection) at a dose of 25 mg once weekly. Sometimes, if the drug is working to control the disease, after twelve weeks the dose is reduced to 15 mg subcutaneously once weekly. Methotrexate is not effective for the treatment of IBD when given orally as pills since it is poorly and inconsistently absorbed by the gastrointestinal tract. However, some physicians will give low doses (around 10 mg once weekly or 2.5mg three times weekly) of oral methotrexate to patients on biologic therapy (like inflximab or adalimumab) to try to prevent allergic reactions and the formation of antibodies against the biologic drugs. Methotrexate is usually well tolerated at low doses (7.5 mg to 25mg total weekly dose). Common potential side effects include but are not limited to fatigue, nausea, abdominal pain, oral sores, headache, abnormal liver blood tests, and low blood counts. Rare but clinically significant side effects include cough or scarring of the lungs or liver.
Q. Is there any new information on advancement flap surgery for the treatment of fistulas?
A. Advancement flaps are for fistulas that connect the vagina to the rectum or for perianal fistulas. Surgeons at IBD specialty centers are using these flaps on a selected case by case basis and only by talking to one of them would you know if you are a candidate or not.
Q. I am currently taking 150mg azathioprine. I've had to reduce Asacol from 3600mg to 2400mg due to the cost. Shortly I will have to totally discontinue Asacol because I cannot afford it. Should I substitute a sulfa drug to replace it? I do not qualify for the patient assistance program the makers of Asacol offer. I have not had a flare for 12 months.
A. Asacol is used in conjunction with azathioprine for several different reasons. It is perfectly acceptable and nothing to be ashamed of to tell your doctor about these cost concerns and ask whether the Asacol or one of its equivalents is even necessary at this point.
Q. What is the standard length of time to notice the effectiveness of my medication? Is there a difference response time for each class of medication?
A. Different medications work at different rates. Corticosteroids typically work quickly and some improvement is typically seen within a few days. 5-aminosalicylates also work fairly rapidly, though not as quickly as steroids. Usually some improvement is seen within 1-2 weeks, though patient often continue to see benefit out to 4-6 weeks. The immunomodulators, azathioprine and 6-mercaptopurine, work very slowly and routinely take 3-4 months to be effective. Methotrexate works more quickly, however, and patients will often improve within 4 weeks. The anti-tumor necrosis factor (anti-TNF) antibodies, infliximab, adalimumab, and certolizumab, all work quickly. Most patients will improve within 2-4 weeks, with some feeling better within a few days. When anew medication is begun, it is important to keep in contact with your physician to monitor treatment progress. If no improvement in symptoms is seen within the appropriate amount of time, then consideration should be given to adjusting therapy.
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