Living with Crohn's Disease & Ulcerative Colitis
May 8, 2013
Over 1.4 million Americans suffer from inflammatory bowel disease (IBD), primarily as Crohn's disease or ulcerative colitis. Inflammatory bowel disease (IBD) is a group of inflammatory conditions of the colon and small intestine. (In addition to the major types of IBD—Crohn's disease and ulcerative colitis—other forms of IBD include collagenous colitis, lymphocytic colitis, ischemic colitis, diversion colitis Behçet disease and indeterminate colitis.)
Crohn’s disease and ulcerative colitis are often grouped together as IBD because of their similar symptoms. Both can cause diarrhea, abdominal pain and vomiting, blood in the stool and weight loss. However, Crohn’s disease can affect any section of the gastrointestinal tract while ulcerative colitis is restricted to the colon. IBD may develop from various causes, such as genetic factors, immune response, infection and even psychological reasons.
Diagnosis of IBD starts with stool and blood samples, but may also require barium x-ray and scoping with sigmoidoscopy, colonoscopy and endoscopy. Treatment of IBD includes either medication or surgery. Lifestyle changes are also important to alleviate symptoms that may be caused by diet or stress.
About the Speaker
Jean-Paul Achkar, MD, is a staff physician in the Department of Gastroenterology in the Digestive Disease Institute of Cleveland Clinic. Dr. Achkar is board certified in internal medicine – gastroenterology, and his specialty interests include Crohn's disease and ulcerative colitis.
Dr. Achkar holds the Kenneth Rainin Endowed Chair in IBD research, and he received the National Institutes of Health K23 Grant Award for genetic studies in Crohn’s disease. He has served as the program director for Cleveland Clinic gastroenterology fellowship program. Dr. Achkar has also received the Physician of the Year Award from the Gastroenterology Department of Cleveland Clinic, the Crohn’s and Colitis Foundation of America Premier Physician Award, two Senior Fellow Teaching Awards, and the American College of Gastroenterology Governors Award for Best Scientific Paper. He is a member of the American College of Gastroenterology, the American Gastroenterological Association, and the Crohn’s and Colitis Foundation of America.
Dr. Achkar completed his fellowship in gastroenterology and hepatology at the University of Pittsburgh Medical Center in Pittsburgh. He completed his residency and internship at University Hospitals of Cleveland following graduation from Case Western Reserve University School of Medicine.
I. Emre Gorgun, MD is a staff physician in the Department of Colorectal Surgery in the Digestive Disease Institute of Cleveland Clinic. He is board-certified in surgery (colon and rectal surgery). His specialty interests focus on minimally invasive and laparoscopic colorectal surgery, robotic colorectal surgery, laparo-endoscopic surgery, rectal cancer and inflammatory bowel disease (IBD).
Dr. Gorgun completed an advanced laparoscopic colorectal fellowship after his residency at the New York Presbyterian Hospital, Weill-Cornell Medical Center, in New York. He also completed a fellowship in colon and rectal surgery/laparoscopic surgery at Weill-Cornell and Memorial Sloan-Kettering Cancer Center, in New York. Dr. Gorgon also completed research and clinical fellowships at Cleveland Clinic’s Department of Colorectal Surgery.
Dr. Gorgon completed his general surgery residency at Cerrahpasa School of Medicine, Istanbul University in Istanbul Turkey, after graduating from medical school at Istanbul University, Istanbul School of Medicine, in Capa, Istanbul.
Arlene A. Escuro, MS, RD, LD, CNSC is an advanced practice registered dietician in the Digestive Disease Institute of Cleveland Clinic. She is a primary resource in the area of colorectal surgery and other specialties. She is a resource for the home enteral nutrition team, providing presentations and in-service training as well as creation of patient education materials.
Ms. Escuro trains clinicians on topics related to enteral nutrition, and is an instructor for nutrition support for ostomy and wound care patients. She was the Digestive Disease Institute project co-leader on ‘Improving the Delivery of Care for Home Enteral Nutrition Patients.’ She is the principal researcher for ‘Food Preferences Survey of Colorectal Surgery Patients’ at Cleveland Clinic.
Let’s Chat About Living with Crohn's Disease and Ulcerative Colitis
Inflammatory Bowel Disease Overview and Diagnosis
sing_it_loud: What is the difference between inflammatory bowel disease (IBD) and irritable bowel syndrome (IBS)?
Jean-Paul_Achkar,_MD: IBD stands for Inflammatory Bowel Disease and IBS stands for Irritable Bowel Syndrome. IBS affects 10 to 12 percent of the population. IBD affects far fewer people, and it is estimated that one to 1.5 million people in the United States are affected by IBD.
IBS is a disease without a structural damage of the gut. It is considered a functional disease of the bowel, which is related to an imbalance of gut hormones and abnormal gut sensitivity and movement. In contrast, IBD has structural damage of the gut, including inflammation and ulcers, which can be detected by endoscopy, biopsies and x-rays.
The symptoms of IBD and IBS sometimes overlap. Both can have abdominal pain and diarrhea. However, patients with IBS normally do not have what are called ‘red flag’ symptoms, such as weight loss, anemia and blood in stool. If a patient has so-called IBS but with these ‘red flags,’ the patient should see a physician for further work up. Treatment of IBS and IBD are also different.
sallyb: Is inflammatory bowel disease (IBD) just related to the digestive system or can it affect the entire body?
Jean-Paul_Achkar,_MD: IBD mainly affects the digestive system, but it can affect other parts of the body. Some of the ‘extraintestinal’ manifestations of IBD are arthritis, liver disease, and eye and skin problems.
meggers: Does inflammatory bowel disease affect a certain part of the colon or the entire bowel?
Jean-Paul_Achkar,_MD: Ulcerative colitis only affects the colon (large intestine). It starts in the rectum and can move up the colon to different extents in some patients. Crohn's can affect any part of the intestinal tract from mouth to anus, but most commonly involves the bottom part of the small intestine (ileum) and the right side of the colon.
BikerDad: If ileitis and stomach ulcers are found with no other intestinal involvement should gastrointestinal tuberculosis be ruled out? And, if so, how? Biopsy didn't show granulomas.
Jean-Paul_Achkar,_MD: Intestinal tuberculosis (TB) can mimic Crohn's disease but fortunately is very rare in the United States in those with normal immune systems. For someone with a new diagnosis of ileitis, it is a good idea to make sure there is no evidence of TB. Biopsies of the involved intestinal segment and asking the pathologist to look for TB as well as doing a skin or blood test for TB exposure are good ways to assess for this.
Signs and Symptoms of Inflammatory Bowel Disease
pray tell: I have symptoms of both inflammatory bowel disease (IBD) and irritable bowel syndrome (IBS). Is this possible?
Jean-Paul_Achkar,_MD: Yes, we see this commonly. IBD refers to inflammatory bowel disease which is the umbrella term encompassing Crohn's disease and ulcerative colitis while IBS refers to irritable bowel syndrome, which is a very different type of condition. However, the symptoms of IBD and IBS can overlap. Therefore, when a patient with ulcerative colitis or Crohn's presents with active symptoms, it is important to check to make sure that the symptoms are due to their disease rather than to something else like irritable bowel syndrome.
Anal Fissures and Crohn’s Disease
readheaded: My nine-year-old son was diagnosed with Crohn's disease three years ago. According to his laboratory results, he is in remission, but just started with mild anal fissures for the first time a few weeks ago that we are managing with his doctor's help. Are anal fissures an indication that a person is out of remission or will be shortly?
On the topic of food allergies, my son had an elevated RAST (radioallergosorbent test) as an infant, which indicated a peanut allergy. The RAST decreased slowly such that when he was five years old, he had and passed a peanut challenge. He had never eaten peanut products until the challenge. Six months after the challenge, during which time he ate peanut products every few weeks, he was diagnosed with Crohn's disease. We didn't think he had a food allergy due to gastrointestinal issues, but rather from a clinical test. Should those of us with children feel hopeful about future treatments? Are there any promising therapies in the works?
Emre_Gorgun,_MD: Anal fissures are not typical for Crohn's disease, but they can be part of the perianal disease presentation. More typically we see perianal inflammations irritations and fistula as part of Crohn's disease. More importantly, it is vital to know the endoscopic findings of the rectal involvement. If there is active disease endoscopically in the rectum (or proctitis), that would be a sign that disease may not be in remission.
Arlene_Escuro,_MS,_RD,_LD,_CNSC: Neither Crohn’s disease nor ulcerative colitis is related to food allergy. Patients with inflammatory bowel disease (IBD) may think they are allergic to foods because they associate the symptoms of IBD with eating. Some foods (such as peanuts and dairy products) may make gastrointestinal symptoms worse, especially during a flare-up.
Differential Diagnosis of Inflammatory Bowel Disease
Lynnesa: Does the finding of one granuloma in a K-pouch still result in a diagnosis of Crohn's disease despite 40 years of ulcerative colitis (UC) diagnoses by various gastroenterologists?
How does Cleveland Clinic gastroenterologist Bo Shen, MD's article in 2009 regarding potential Crohn's disease of a pouch reflect current thinking on this subject? In that article, Dr. Shen mentioned the possibility of a ‘new’ disease in such circumstances. I ask because despite finding one granuloma during surgery at Cleveland Clinic when converting my J-pouch to a K-pouch, my local gastroenterologist feels certain I have UC because I get flares only when I stop smoking. My flares including acute renal failure, ulcers, bleeding, blood clots, and so on. 6-MP (mercaptopurine) along with smoking stops all symptoms.
Jean-Paul_Achkar,_MD: I would say that the finding of a single granuloma in isolation does not absolutely mean you have Crohn's disease. First, not all granulomas are Crohn's-related granulomas, so it would be important to have an experienced pathologist review the slides. Second, if everything else about your history has been suggestive of ulcerative colitis that may outweigh the finding of a single granuloma.
However, in your particular case it would be important to factor in why you had to convert from a J-pouch to a K-pouch. Sometimes loss of a J-pouch can be due to Crohn's-like problems.
Merie: Recently, I read about a girl who was diagnosed with mastocytic Enterocolitis and we had similar symptoms. Since going back on a daily antihistamine, I've noticed an overall improvement in health. This led me to research mastocytic Enterocolitis more thoroughly, but it left me wondering if it is also an inflammatory bowel disease (IBD_. The reason why I am curious is that my own personal doctor experiences for Crohn's disease over the years have taught me that a patient cannot have more than one form of IBD, so this left me curious as to what this ailment is considered. I am wary of bringing this up before my next scope, so hopefully you can clear the air.
Jean-Paul_Achkar,_MD: Your doctor should be able to distinguish between Crohn's disease and mastocytosis as the symptoms and findings for each are for the most part very different. I guess it is possible that you could have both Crohn's disease and mastocytosis, but there are very distinct findings in mastocytosis that should be evident to your doctors.
Inflammatory Bowel Disease and Associated Medical Conditions
JeanSham: Is there any link between ulcerative colitis and Crohn's disease and the early-onset of diverticulosis (in onset in one’s mid 30s)?
Emre_Gorgun,_MD: To the best of our knowledge there is no proven link between inflammatory bowel disease and diverticulosis or diverticulitis. However, someone who did have an attack of colonic diverticulitis should undergo an early screening colonoscopy to rule out any underlying cause.
Cancer and Inflammatory Bowel Disease
gotta go: Can ulcerative colitis turn into cancer? Are you at a higher risk of cancer if you have inflammatory bowel disease (IBD)?
Jean-Paul_Achkar,_MD: There is an increased risk of colon cancer in patients with ulcerative colitis with or without associated primary sclerosing cholangitis (PSC). Also, there is an increased risk of cancer for patients with Crohn's disease who have mostly colon involvement. Based on this, current recommendations are for patients with more than eight to 10 years of extensive colon inflammation due to ulcerative colitis or Crohn's disease to undergo colonoscopies with a minimum of 32 random biopsies taken throughout the colon every one to two years. For those patients with inflammatory bowel disease and PSC, such colonoscopies should begin as soon as the PSC is diagnosed.
want_it: Can inflammatory bowel disease (IBD) lead to more serious diseases such as cancer?
Jean-Paul_Achkar,_MD: Yes. Both ulcerative colitis and Crohn's disease increase the risk of cancer. Patients with ulcerative colitis begin to develop an increase risk of colorectal cancer after they have had symptoms of colitis for 10 to 12 years. Patients with Crohn's disease involving the colon or rectum have a similar risk of developing colorectal cancer. Patients with small bowel Crohn's disease are at increased risk for small bowel cancer, but it is still rare. The main cancer concern for a patient with IBD is colorectal cancer. That is why we recommend yearly colonoscopies with extensive biopsies beginning after 10 to 12 years of disease activity.
maryc: How much greater is the cancer risk associated with having inflammatory bowel disease (IBD)?
Emre_Gorgun,_MD: The cancer risk associated with IBD is increased three- to five-fold, as compared to the general population, especially if your IBD involves the colon. This includes ulcerative colitis and Crohn's colitis. It appears that disease duration, disease extent and severity may be associated with a high risk for developing cancer or pre-cancerous conditions.
If you have a family history of colon cancer or you yourself have a bile duct disease called primary sclerosing cholangitis, your risk is even higher. Yes, colon cancer is one of the major causes of mortality in patients with IBD. If you have extensive colitis, for more than eight to 10 years, you should have a yearly colonoscopy.
Genetics and Inflammatory Bowel Disease
trigger: Is there a genetic basis for inflammatory bowel disease (IBD) such as family or ethnic differences?
Jean-Paul_Achkar,_MD: Yes, there is definitely a genetic basis for IBD. This is one of the exciting areas of research. IBD is more common in Caucasians and those of Jewish ethnicity. There is also an increased risk of IBD in other family members once one person has it—although the overall number for that risk is low.
There has been a lot of research looking for genes that cause IBD. To date over 160 genes have been identified as being associated with Crohn's disease, ulcerative colitis or both. However, the exact effects of these genes have not been defined—there is a lot of active research going on trying to define these effects. Cleveland Clinic investigators are active in this type of IBD genetics research. Findings from these genetic studies have opened up some new avenues to understand the underlying cause of IBD as well the potential to develop new treatments.
However, there are likely to be other factors that contribute to the development of IBD, such as environmental agents, bacteria within the bowel and tobacco use. For example, smoking increases the risk of developing Crohn's disease and leads to a more aggressive course of Crohn's disease!
Jaime Editor: Since there have been over 160 genes identified, is it possible for a family member or potential inflammatory bowel disease (IBD) patient to get tested via DNA screening rather than invasive scoping?
Jean-Paul_Achkar,_MD: At this point, we do not recommend genetic testing since there are so many genes involved and we are still trying to understand how these genes come together to increase the risk of developing IBD. Also, as we know from these studies and twin studies, having a gene or certain group of genes does not guarantee that a person will develop IBD.
Testing for IBD
deep_sleep: Is there a specific test to diagnose Crohn’s disease or ulcerative colitis?
Jean-Paul_Achkar,_MD: Accurate diagnosis is critical because there are conditions that can mimic inflammatory bowel disease (IBD). Also, Crohn’s disease and ulcerative colitis are so similar that it is sometimes difficult to distinguish between the two. An accurate diagnosis enables a patient to receive the most effective treatment. Once diagnosed, the best treatment for each patient is based on symptoms, treatment responses and test results. If symptoms suggest IBD, blood and stool results may be the first tests ordered to check for anemia, evidence of malnutrition or infection. A scope or x-ray would be the next important way to look for inflammation.
Chromoendoscopy in Ulcerative Colitis
eagle999: Is chromoendoscopy much better than regular endoscopy in the determination of colon cancer.
Jean-Paul_Achkar_MD: Chromoendoscopy refers to the spraying of a dye during colonoscopy to help detect pre-cancerous areas. There are some studies to suggest that this may increase the yield of finding pre-cancerous changes in patients with ulcerative colitis, but when we looked at our experience at Cleveland Clinic we did not find it to be very helpful. Overall, there may be some benefit but I wouldn't say it's ‘much better’ than regular endoscopy in patients with ulcerative colitis.
Medications for Inflammatory Bowel Disease
BikerDad: What is the first-line treatment for a young adult with stomach and ileal ileocecal Crohn's disease?
Jean-Paul_Achkar,_MD: There is no single right answer to your question. Factors such as severity and extent of the inflammation affect decisions regarding therapy. An important point to consider is that recent studies evaluating patients with recent diagnosis of Crohn's disease that is moderately severe suggest that more aggressive therapy (what is referred to as combination or step-down therapy) early in the disease course works better than the more traditional approach of starting with less aggressive drugs and slowly increasing therapy over time (the step-up approach).
JeanSham: My most recent scope indicates I have finally achieved remission. However, there were no recommendations to reduce my current medication regimen. Will there ever be a time when medication is not required to maintain remission?
Jean-Paul_Achkar,_MD: Assuming you have inflammatory bowel disease and depending on what part of your intestines are involved, medications are generally required on a long-term basis to maintain remission. The risk of having recurrent symptoms without staying on medications is very high and that risk— along with potential complications that can develop—generally outweighs the risk of staying on medications.
sugar coating: Are there different treatments for ulcerative colitis as compared to Crohn's disease?
Jean-Paul_Achkar,_MD: Many of the medications we use work for both Crohn's disease and ulcerative colitis. However, there are some medications that work better for one rather than the other.
While many of the medical treatments are similar for ulcerative colitis and Crohn's disease, but there are some important differences. Medications known as 5-aminosalicylic acid agents (Asacol®, Pentasa®, Lialda®, Apriso®, [mesalamine], Colazal® [balsalazide disodium], etc.) are mainstay treatments for mild to moderate ulcerative colitis, but don't have much of a role in Crohn's disease. Some of the biologic agents (Cimzia® [certolizumab pegol] and Tysabri® [natalizumab]) are only FDA-approved for the treatment of Crohn's disease, but not ulcerative colitis. The bigger difference is in surgical approaches that can be quite different for ulcerative colitis and Crohn's disease.
Helminth Therapy for Inflammatory Bowel Disease
Jaime Editor: Are either of you familiar with pig whipworm larvae (helminth therapy) and have you considered doing an inflammatory bowel disease treatment study at Cleveland Clinic?
Jean-Paul_Achkar,_MD: Yes, there are studies currently going on evaluating helminth therapy (pig whipworm, or trichuris suis) for ulcerative colitis and Crohn's disease. The rationale for these studies was based on evidence from animal studies and an initial small study in patients with ulcerative colitis. The reason that this works is thought to be related to effects of the pinworm on regulating the immune system. Cleveland Clinic is participating in one of these trials for Crohn's, but enrollment for this recently closed.
Inflammatory Bowel Disease and Surgery
ashley: If it is necessary to have surgery for diverticulitis? Would a colorectal surgeon be the best option?
Emre_Gorgun,_MD: The short answer is yes. Colon and rectal surgery is a subspecialty of general surgery with focused training for the disease of the colon, rectum and small bowel. Therefore, these operations are part of our daily practice with good outcomes.
cooksharpe: I had been diagnosed with ulcerative colitis in 1992 and took Asacol® (mesalamine) suppositories and the symptoms went away. In the summer of 1993, the symptoms came back and no medications were helping. I was hospitalized and surgery was performed in September. During surgery they found severe damage to my colon and removed 80 percent of it and created an ileostomy. The hope was that I would go into remission and it could be reversed. I have had a sigmoidoscopy every year that shows inflammation. I am afraid of having additional surgery because I do not want to end up back at the beginning when I was so sick and dropped 40 pounds in a month! But I am also concerned with the high risk of cancer staying the way I am. Do you have any suggestions for me? Currently, I am not taking any medications. My last try was the infusion and that did not help either.
Jean-Paul_Achkar,_MD: Ulcerative colitis refractory to medical treatment requires surgical management. In these circumstances we perform two- or three-stage operations where we remove the colon during the first stage, then remove the remaining colon and rectum at the time of the second stage with the creation of a small bowel pouch and detouring the stool with a stoma. The third stage is simply reversal of the stool detour. At the completion of these three stages, the intestinal continuity is reestablished. It sounds like you had your first stage done. Symptoms you are experiencing may be from the remaining colon and rectum. One option that can be considered is to remove the remaining colon and rectum, and create a small bowel pouch and reestablish intestinal continuity. If you would like to further discuss these options please do not hesitate to contact my office.
eagle999: Is a colectomy recommended in all cases with a confirmation of low-grade dysplasia in patient with more than 20 years of ulcerative colitis? If not, what is the recommended time between colonoscopies?
Emre_Gorgun,_MD: Low-grade dysplasia, high-grade dysplasia and invasive cancer are the concerns with long-standing ulcerative colitis (UC). Low-grade dysplasia may be an indication for colectomy in patients with UC. Having said that, if low-grade dysplasia is only in one area and there are no other areas with dysplasia, in very select patients this can be followed very closely with the attempt to treat medically. However, if the dysplasia becomes diffuse or multifocal, then surgery is an absolute indication. Surveillance colonoscopies are recommended more frequently than usual in the presence of dysplasia.
one_and_only: What type of surgery is done for Crohn’s disease?
Emre_Gorgun,_MD: It depends on what part of the intestine is involved with Crohn's disease. Usually, the goal is to remove the areas of active Crohn's disease with a bowel resection. In patients who have had a significant amount of small bowel already removed, we will sometimes use a technique called stricturoplasty to preserve intestinal length.
sinaihospital: I was diagnosed with Crohn’s disease by a gastroenterologist. I take medicine for this problem and had blood tests, x-rays and colonoscopy. Crohn’s disease was diagnosed by the colon surgeon who did a colonoscopy, but he said no surgery was necessary and sent me back to my gastroenterologist. (My late mother also saw a Cleveland Clinic colon surgeon for the same problem.) What can do for it?
Jean-Paul_Achkar,_MD: This is hard to answer as the question is very broad. If a surgeon feels that you do not need surgery at this time and you have evidence of confirmed active Crohn's disease, it would seem that further medications should be considered. We have many options for medical therapy now that we did not have a few years ago.
jellop: Are there advantages and disadvantages for surgery for Crohn’s disease? What are some possible complications?
Emre_Gorgun,_MD: Yes, there are advantages and disadvantages as well as risks associated with any surgery. In most cases, however, patients with Crohn's disease come to surgery when they and their gastroenterologist have exhausted all of the medical options for treatment. Surgery will remove the segments of intestine affected with Crohn's disease and allow the patient to get off of medicines like prednisone. Obstructive symptoms are relieved and the patient can anticipate a return to an excellent quality of life. Unfortunately, Crohn's disease can come back, but most patients go 10 years, on average, between surgeries.
im_serious: Are there any new surgical procedures to treat Crohn's disease, particularly perineal disease and fistulas?
Emre_Gorgun,_MD: There are some newer surgical options in Crohn's disease. For example, for anal fistulas there is the ‘fistula plug.’ It has been used in patients with Crohn's disease, but only with a modest rate of success (of around 25%). We still use perianal setons with great success. Usually our patients are very happy with getting their symptoms under control. Additionally, advancement flaps are performed with success too. However for a greater success we aim to first treat the inflammation in the rectum as much as possible.
SinatBe: Is there a risk of Crohn's disease coming back after surgery?
Jean-Paul_Achkar,_MD: Yes. When part of the small intestine and colon are removed and a reconnection is created, up to 80 percent of patients will develop recurrence of their Crohn's disease over the next 10 to 15 years. In some situations, physicians will recommend starting medication shortly after surgery as a preventative measure to reduce the risk of disease coming back. It is also important to note that smoking significantly increases the risk of Crohn's recurrence after surgery so smokers can help themselves to a great extent by quitting.
jharp: Does previous traditional resection for Crohn's disease prohibit consideration for laparoscopic surgery with future strictures or narrowing?
Jean-Paul_Achkar,_MD: Not strictly, but most surgeons are less likely to perform a laparoscopic operation when a patient has already had a prior abdominal operation for their Crohn's disease. In some cases it can be done, but the surgeon must use good judgment.
jonh334: Can you explain the ileal pouch anal anastomosis (IPAA) procedure, and do you perform this surgery at Cleveland Clinic?
Emre_Gorgun,_MD: The IPAA, also called a J-pouch procedure, entails removal of the entire colon and rectum and then creation of a pouch made from the small bowel to take the place of the colon. This allows the patient to be cured of their ulcerative colitis, but still be able to avoid a permanent stoma.
Cleveland Clinic began offering J-pouch surgery in 1983, and performs about 200 IPAA surgeries per year—having performed more than 3,600 to date. Cleveland Clinic has not only completed the greatest number of pouch surgeries of any hospital in the world, it also has the lowest pouch failure rate reported by any institution. We offer the traditional open approach, as well as a laparoscopic alternative.
We have an excellent booklet explaining the procedure in detail for patients. If you contact us with your mailing address, I can have one sent to you.
build_it: What is a pelvic pouch and are there different types?
Emre_Gorgun,_MD: A pelvic pouch is an internal pouch made from the small intestine. It is meant to take the place of the rectum in a patient with colitis that has had the colon and rectum removed. The pouch allows the patient to have bowel movements from the anus and avoid having a permanent stoma. The pelvic pouch can be constructed in several different forms. The most common is the J-pouch followed by the S-pouch. The different types of pelvic pouches have very similar function.
elizabeth: How do patients feel about the quality of life after getting a pouch? What is the average number of bowel movements? What other pluses do patients notice?
Emre_Gorgun,_MD: Excellent. We have done quality-of-life studies following pouch surgery. The average number of bowel movements our patients experiencing is five. However the best outcome they experience is that the urgency improves significantly. That is huge for patients who suffer for years looking for a restroom that is close to where they were located.
let_it_be: How long has surgery been performed for removal of the large intestine? Are there any long-term studies done on complications for people who have had no large intestine for more than 30 years?
Dr__Achkar: The J-pouch procedure has been around since the 1980s. We have what is probably the largest and longest experience with the procedure here at the Cleveland Clinic. We have not found any long-term problems with not having a large intestine.
jasper: Does pouch surgery affect fertility? Will I be able to have a baby?
Emre_Gorgun,_MD: Certainly. Pelvic surgery which includes removal of the rectum and creating a J-pouch will affect to some extent, fertility. This means that fertility after pouch surgery is decreased. However, patients still can get pregnant and carry a pregnancy successfully. We know that there are slight changes on the pouch function during pregnancy. However, these changes are minimal. As far as delivery method, our recommendation is C-section.
Diet and Irritable Bowel Disease
meggers: Can irritable bowel syndrome (IBS) just be treated with diet only and when is it good to seek further treatment (including medications or surgery)?
Emre_Gorgun,_MD: It can be managed with diet changes as well as some medications. These are usually managed by our gastroenterologist colleagues. There is currently no surgical treatment option for IBS.
body&soul: Can diet prevent inflammatory bowel disease (IBD)?
Arlene_A._Escuro,_MS,_RDN,_LD,_CNSC: Foods don’t cause IBD, but may trigger symptoms. A bland, low-fiber diet may reduce gastrointestinal symptoms. In terms of how diet can help IBD, research shows there are fewer occurrences of IBD in people who have a high vegetable and fiber diet. There is little data supporting an ‘elimination diet’, high-fiber diets, or use of antioxidants or omega-3 fatty acids to help with IBD. Glutamine has not been shown to be helpful in patients with active Crohn’s disease. There does seem to be a benefit in using specific probiotics for preventing or treating pouchitis in patients with ulcerative colitis. Oral supplements added to a regular diet can help patients with Crohn’s disease in remission.
wipe out: How can a proper diet play a positive role in inflammatory bowel disease (IBD)?
Arlene_A._Escuro,_MS,_RDN,_LD,_CNSC: One very important part of therapy for IBD is proper nutrition. Dietary recommendations for patients with IBD must be individualized. It depends on the type of disease the patient may have and what part of the intestine is affected. During the onset of IBD or during flare-ups, the patient is at risk for malnutrition due to increased energy needs of the body caused by stress and inflammation, loss of appetite due to nausea, abdominal cramping, pain, altered taste sensation, diarrhea, or constipation, and poor digestion and absorption of protein, fat, carbohydrates, water, vitamins and minerals.
For medical nutrition therapy, you should exclude only the foods that produce a negative response—such as, when you are experiencing symptoms, it may be helpful to follow a low–fiber diet. When experiencing diarrhea, you should choose foods that contain soluble fiber. If a patient is lactose-intolerant, he or she should choose lactose-free foods. But keep in mind, there is no evidence that routine limitations of lactose, fat, fiber, or residue are beneficial. There are no ‘good’ or ‘bad’ foods.
BikerDad: Can diet itself improve the disease? What diet is recommended for Crohn’s disease? What is the best method for weight gain?
Jean-Paul_Achkar,_MD: This is a frequently asked question. Most studies would suggest that there is no specific diet that consistently works for Crohn's disease patients. That being said, there are certain patients who feel that dietary changes affect their symptoms. However, this seems to be an individual effect in large part and thus physicians typically do not recommend a specific diet. Patients with Crohn's disease can develop lactose intolerance, so paying attention to the effect of dairy intake on one's symptoms is worthwhile.
miss me: Can diet impact inflammatory bowel disease (IBD) relapse?
Arlene_A._Escuro,_MS,_RDN,_LD,_CNSC: We know that nutrition plays an important role in the treatment of IBD. Unfortunately, there is not enough research to easily determine what nutritional changes are the most helpful. It is not clear what causes IBD. Some researchers think it may be caused by a hypersensitivity to cow’s milk protein in infancy. Other reports show a link between the amount of refined sugar consumed and the development of IBD. It is also not known what dietary factors might make IBD worse. There is some possibility that cow’s milk, refined sugar, decreased vegetable intake and a high-fat diet might make IBD worse.
ollie: What foods should athletes with inflammatory bowel disease (IBD) eat for optimal performance?
Arlene_A._Escuro,_MS,_RDN,_LD,_CNSC: Athletes with IBD should see a gastroenterologist and a registered dietitian for nutrition counseling prior to competitive sports training due to increased evidence of malnutrition, weight loss (in 65 to 78 percent of patients), anemia, fluid and electrolyte abnormalities, and potential vitamin and mineral deficiencies among IBD patients.
Matt: During a recent flare, the dietitian at the inflammatory bowel disease (IBD) clinic I go to limited my fiber intake to no more than 13 grams daily. Now that I am in remission, what should my dietary fiber intake be?
Arlene_Escuro,_MS,_RD,_LD,_CNSC: I would recommend a gradual increase in fiber intake to 20 to 30 grams fiber per day. Trial and error is the best way to figure out the amount of fiber you are able to tolerate in your diet. For IBD patients, it is advisable to have higher soluble fiber vs. insoluble fiber sources.
Matt: Can alcohol affect your Crohn’s disease?
Arlene_Escuro,_MS,_RD,_LD,_CNSC: I would seek advice from your physician regarding alcohol intake. However, in patients with a flare-up of Crohn’s disease and/or who are experiencing gastrointestinal symptoms such as diarrhea, alcohol can act as a stimulant and can worsen diarrhea, increase the ostomy output, and can increase the risk of dehydration.
Food Allergy and Inflammatory Bowel Disease
valerie: Is inflammatory bowel disease (IBD) related to food allergies?
Jean-Paul_Achkar,_MD: No. Although some patients do have allergic reactions to certain foods, neither Crohn’s disease nor ulcerative colitis is related to food allergy. Patients with IBD may think they are allergic to foods because they associate the symptoms of IBD with eating. Some foods may make gastrointestinal symptoms worse, especially during a flare-up.
For many patients, common problem foods include:
- Dairy products for patients who are lactose intolerant.
- High-fiber foods, including raw fruits, vegetables and whole grains. (Often patients have the most problems with gas-producing foods, such as beans, cabbage, broccoli and onions, or foods with hulls such as seeds, nuts, corn and popcorn.)
- Spicy foods.
- High-fat foods, including fried foods, butter margarine, mayonnaise, nuts, ice cream and fatty cuts of red meat.
- Carbonated drinks.
- Alcoholic beverages.
- Foods with caffeine, such as chocolate and coffee.
Probiotics and Inflammatory Bowel Disease
Do any probiotics help at all?
Arlene_Escuro,_MS,_RD,_LD,_CNSC: I always advise patients with Crohn’s disease (CD) to discuss the use of probiotics (dosage and kind) with their physician first. The benefits of probiotics in CD remain controversial. Since CD is a very complex disease, with diverse locations and different disease phases, it will affect the response to probiotics. For example, colonic location seems to respond better to antibiotics, and consequently might be more susceptible to flora manipulation. The course of CD follows different phases. Therefore, probiotics might be more effective in the early phases. There are many species of probiotics—one type may be more effective than another. Some anecdotal reports of infections probably caused by probiotics have also been published. The risk can be increased in patients with severe disease or who are deeply immunosuppressed.
JeanSham: What role do probiotics play in the treatment of Crohn's disease? Are there any over-the-counter probiotics that are effective or useful in reducing symptoms?
Jean-Paul_Achkar,_MD: There is increasing evidence that intestinal bacteria play a role in causing the inflammation associated with inflammatory bowel disease (IBD) and especially Crohn's disease. Thus, it would make sense to try use ‘good bacteria,’ which is the idea behind probiotics to treat IBD. Unfortunately, there are conflicting results regarding the benefits of probiotics in IBD. Studies so far do not suggest that probiotics work for Crohn's disease. There may be a benefit for probiotics in keeping ulcerative colitis in remission and also for the treatment of pouchitis. In terms of specific probiotics, there are no definite recommendations for a particular agent.
Kapsule10: Is the glyconutrient, Ambrotose®, of any value in treating Crohn’s disease? Is there any relationship between mesenteric fibromatosis and Crohn’s disease? Does the probiotic VSL #3® help Crohn’s disease?
Jean-Paul_Achkar,_MD: I am not aware of evidence suggesting a benefit for Ambrotose® in the treatment of Crohn's disease. Also I don't know of a link between mesenteric fibrosis and Crohn's disease. There is increasing evidence that intestinal bacteria play a role in causing the inflammation associated with inflammatory bowel disease (IBD) and especially Crohn's disease. So, it would make sense to try use ‘good bacteria’ which is the idea behind probiotics to treat IBD. However, there are conflicting results regarding the benefits of probiotics in IBD, and studies do not suggest that probiotics work for Crohn's disease. There may be a benefit for probiotics in keeping ulcerative colitis in remission and also for the treatment of pouchitis. In terms of specific probiotics, there are no definite recommendations for a particular agent.
Lifestyle Changes and Support
crysta: What is the role of lifestyle with inflammatory bowel disease?
Jean-Paul_Achkar,_MD: It is very important for patients with Crohn’s disease or ulcerative colitis to maintain a healthy lifestyle, even when the disease is in remission. Exercising regularly, eating a healthy, well-balanced diet and managing stress can help management of both diseases. Abstaining from smoking is particularly important. Studies have shown that smokers with Crohn’s disease tend to have a more severe course than nonsmokers with Crohn’s.
2056: What can someone with inflammatory bowel disease (IBD) do to boost their immune system?
Jean-Paul_Achkar,_MD: There are several categories of medicines to treat IBD. Some of them are called immunosuppressive agents, such as 6-Mercaptopurine (6-MP). There are also biological agents, such as Remicade®. These agents make the patient more vulnerable to infection. We recommend that the patient updates vaccinations with a dead vaccine. Live vaccines for these patients should not be used. IBD itself is related to altered immunity and not necessarily low immunity.
dominic: Are there any local support groups that you are aware of?
Jean-Paul_Achkar,_MD: The Crohn's and Colitis Foundation of America (CCFA) provides support both on a national and a local basis. Cleveland Clinic and several of its physicians work closely with the local chapter of CCFA.
Cleveland Clinic Coordination of Care, MyChart® and MyConsult®
thats_enough: If I wanted to come to the Clinic for treatment or surgery and I’m from out of town, is there a procedure in place to accommodate me (including visits, surgery, family and caregiver, a place to stay, etc.)?
Jean-Paul_Achkar,_MD: Many of the patients treated at Cleveland Clinic are outside the Cleveland metropolitan area. We have numerous resources in place to help facilitate out-of-state patients.
Cleveland_Clinic_Host: Regarding our medical concierge, just like the concierge at a fine hotel, your Cleveland Clinic medical concierge will help facilitate and coordinate your Cleveland Clinic experience and your visit to Cleveland, Ohio.
Your medical concierge will provide the following complimentary services:
- Assistance with coordinating multiple appointments
- Scheduling or confirming airline reservations in cooperation with Cleveland Clinic's travel services
- Assistance with hotel and housing reservations and providing discounts when available
- Arranging taxi or car service between the airport and hotel
- Providing information about leisure activities for family members
A medical concierge will meet and accompany you to your appointments, upon request.
If your visit includes a hospital stay, your medical concierge also can make arrangements for private nursing, if desired. Your medical concierge is on hand for your convenience every weekday from 8 a.m. to 5 p.m. (EST). Contact your medical concierge at: 800.223.2273 ext. 55580 or via email at firstname.lastname@example.org.
BikerDad: Is it worthwhile to use MyChart® to keep as much information as possible available in one place? Do your patients use Microsoft® HealthVault™ to store information from MyChart® together with test results from other locations? I ask because I have a son who is newly diagnosed with Crohn's disease and goes to college near Cleveland, but he has seen a gastroenterologist in NY.
Jean-Paul_Achkar,_MD: MyChart®: Your Personal Health Connection, is a secure, online health management tool that connects Cleveland Clinic patients to portions of their personalized health information, allowing them to:
- Review past appointments
- Manage your prescription renewals
- Manage appointment requests and cancellations
- View your health summary, current list of medications and test results as released by your physician
- Receive important health reminders
- Access reliable health information about a broad range of topics of personal interest
All you need is access to a computer, an email account, and an internet connection.
MyChart® does not combine test results, health information from other medical institutions. For more information about MyChart®, call toll-free at 866.915.3383 or send an email to: email@example.com.
BikerDad: What is the online second opinion service offered by Cleveland Clinic? Can it really do much without seeing the patient?
Cleveland_Clinic_Host: Our MyConsult® service offers secure online second opinions for patients that cannot travel to Cleveland. Through this service, patients enter detailed health information and mail pertinent test results to us. Cleveland Clinic experts then render an opinion that includes treatment options or alternatives and recommendations regarding future therapeutic considerations. To learn more about MyConsult®, please visit www.clevelandclinic.org/myconsult, and refer to the section about frequently asked questions.
Cleveland Clinic Victor W. Fazio Center for Inflammatory Bowel Disease
lol987: Does Cleveland Clinic have an inflammatory bowel disease (IBD) clinic or center? How do I go about making an appointment?
Jean-Paul_Achkar,_MD: Yes, we do have an IBD Center, the Victor W. Fazio Center for Inflammatory Bowel Disease. Our IBD Center was established several decades ago. We have a multidisciplinary approach with expertise from IBD specialists: gastroenterologists specialized in IBD, colorectal surgeons, gastrointestinal (GI) radiologists and GI pathologists. This is beneficial to the patient with complex IBD, as he or she can meet with multiple specialists within one visit and at one location. To make an appointment, call 216.444.7000.
Moderator: I'm sorry to say that our time with Cleveland Clinic experts Jean-Paul Achkar, MD and I. Emre Gorgun, MD is now over. Thank you, doctors, for taking your time to answer our questions today about Crohn’s disease and ulcerative colitis.
Jean-Paul_Achkar,_MD: Thank you. It was a pleasure to participate in this Web Chat.
Emre_Gorgun,_MD: Thank you for your questions.
To make an appointment with Dr. Achkar (Cleveland Clinic Main campus and Beachwood Family Health & Surgery Center) or Dr. Gorgun (Cleveland Clinic Main campus and Twinsburg Family Health & Surgery Center) in addition to any of the other specialists in the Digestive Disease Institute at Cleveland Clinic, please call 216.444.7000 or call toll-free at 800.223.2272, ext. 47000. (For appointments at Cleveland Clinic Twinsburg Family Health & Surgery Center, please call 330.888.4000.) You can also visit us online at clevelandclinic.org/digestive.
For More Information
On Cleveland Clinic
At Cleveland Clinic Digestive Disease Institute, we are dedicated to providing expert diagnosis and the most advanced medical and surgical treatment options available for IBD today. With an IBD Center of Excellence, Cleveland Clinic provides gastroenterologists, colorectal surgeons, liver and transplant surgeons and nutritionists under one roof. This enables patients to be seen by many specialists, in one day, when needed.
Cleveland Clinic has developed an international reputation for excellence in IBD. The Department of Colorectal Surgery is a national leader in colorectal surgery and surgical innovation with:
- more operations for Crohn’s disease than any other institution, including the bowel-conserving stricturoplasty, than any other institution
- performing the world’s highest volume of J-pouch procedures
- the nation’s largest referral center for repairing pelvic pouches
- overseeing 12 disease- and treatment- specific databases
- the Pouchitis Clinic, the first of its kind in the nation
- performing the world’s first laparoscopic proctocolectomy
For digestive disease, U.S.News & World Report ranks Cleveland Clinic first in Ohio and second in the nation for health care.
On Your Health
MyChart®: Your Personal Health Connection, is a secure, online health management tool that connects Cleveland Clinic patients with their personalized health information. All you need is access to a computer. For more information about MyChart®, call toll-free at 866.915.3383 or send an email to: firstname.lastname@example.org.
A remote second opinion may also be requested from Cleveland Clinic through the secure Cleveland Clinic MyConsult® website. To request a remote second opinion, visit eclevelandclinic.org/myConsult.
If you need more information, click here to contact us, chat online or call the Center for Consumer Health Information at 216.444.3771 or toll-free at 800.223.2272 ext. 43771 to speak with a Health Educator. We would be happy to help you. Let us know if you want us to let you know about future web chat events!
Some participants have asked about upcoming web chat topics. If you would like to suggest topics, please use our contact link clevelandclinic.org/webcontact.
This information is provided by Cleveland Clinic as a convenience service only and is not intended to replace the medical advice of your doctor or health care provider. Please consult your health care provider for advice about a specific medical condition. Please remember that this information, in the absence of a visit with a health care professional, must be considered as an educational service only and is not designed to replace a physician's independent judgment about the appropriateness or risks of a procedure for a given patient. The views and opinions expressed by an individual in this forum are not necessarily the views of the Cleveland Clinic institution or other Cleveland Clinic physicians. ©Copyright 1995-2013. The Cleveland Clinic Foundation. All rights reserved.