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Ask the Experts: All About IBD

Online Health Chat with Dr. Jean-Paul Achkar and Dr. Emre Gorgun

May 30, 2012

Introduction

Cleveland_Clinic_Host: Inflammatory bowel disease (IBD) is a group of inflammatory conditions of the colon and small intestine. The major types of IBD are Crohn's disease and ulcerative colitis. The two diseases are often grouped together as IBD because of their similar symptoms. Both can cause symptoms of diarrhea, abdominal pain, blood in the stool, and weight loss. Over 1.4 million Americans suffer from IBD. If you or a loved one are suffering with IBD or would like to learn more, take this opportunity to chat live with our specialists and get the answers you need.

Cleveland Clinic has developed an international reputation for excellence in IBD including:

  • doing more operations for Crohn’s disease than any other institution, including the bowel-conserving stricturoplasty
  • performing the world’s highest volume of J-pouch procedures
  • being the nation’s largest referral center for repairing pelvic pouches
  • overseeing 12 disease- and treatment- specific databases
  • setting up the Pouchitis Clinic, the first of its kind in the nation
  • performing the world’s first laparoscopic proctocolectomy

Cleveland Clinic receives an increasing number of worldwide referrals--particularly for complex IBD cases--for an expert opinion on medical therapies, access to clinical trials or for surgical expertise that consistently reports excellent outcomes.

Dr. Achkar works as a clinician seeing patients with complicated inflammatory bowel disease. He has been at Cleveland Clinic since 1998 and holds the Kenneth Rainin Endowed Chair in IBD Research. He completed medical school and residency at Case Western Reserve University and then did his Fellowship training at University of Pittsburgh Medical Center. His research is focused on identifying the genetic basis of IBD. He also serves as the Program Director for the Gastroenterology Fellowship program at the Cleveland Clinic.

Dr. Gorgun obtained his medical degree from Istanbul University, Istanbul School of Medicine, Turkey. After completing five years general surgery residency training at Istanbul University, Cerrahpasa School of Medicine in Turkey, he moved to the United States. He finished two years of research fellowship followed by a year of clinical fellowship at Cleveland Clinic, Department of Colorectal Surgery. He moved to New York City for an advanced laparoscopic colorectal fellowship at the NewYork-Presbyterian Hospital/Weill Cornell Medical Center. In New York, he completed an ACGME approved residency at NewYork-Presbyterian Hospital/Weill Cornell Medical College. Dr. Gorgun then also completed an ACGME approved specialty training in colon and rectal surgery/laparoscopic surgery at Weill Cornell and Memorial Sloan-Kettering Cancer Center. Dr. Gorgun is board-certified in Surgery and his specialty interests focus on minimally invasive and laparoscopic colorectal surgery, robotic colorectal surgery, laparoendoscopic surgery, rectal cancer and inflammatory bowel disease (IBD). Dr. Gorgun has numerous publications on IBD surgery and different aspects of colon and rectal diseases.

To learn more about inflammatory bowel disease, please download our free treatment guide at www.clevelandclinic.org/IBD, or to make an appointment with Drs. Achkar or Gorgun, please call 866.841.4534.

If you are interested in making an appointment with any of the specialists in the Digestive Disease Institute at Cleveland Clinic, please call 216.444.7000 or toll free at 1.800.223.2273, extension 47000. Cleveland Clinic has been ranked #2 in gastroenterology in the nation by U.S.News & World Report since 2003.

Cleveland_Clinic_Host: Welcome to our Online Health Chat with Cleveland Clinic specialists Dr. Jean-Paul Achkar and Dr. Emre Gorgun. We are thrilled to have them here today for this chat on IBD. Let’s begin with some of your questions.


GENERAL IBD/IBS QUESTIONS

sing_it_loud: What is the difference between IBD and IBS?

Dr__Achkar: IBS stands for Irritable Bowel Syndrome and IBD stands for Inflammatory Bowel Disease. IBS affects 10 to 12% of the population. IBD affects far fewer; it is estimated that 1 million 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" syndromes such as weight loss, anemia and blood in stool. If a patient has so-called IBS, but with has these "red flags," the patient should see a physician for further work up. Treatment of IBS and IBD are also different.

sallyb: Is IBD just related to the digestive system or can it affect the entire body?

Dr__Achkar: 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.

dominic: Are there any local support groups that you are aware of?

Dr__Achkar: The Crohn's and Colitis Foundation of America (CCFA) provides support both on a national and a local basis. The Cleveland Clinic and several of its physicians work closely with the local chapter of CCFA and our Digestive Disease Institute will have a presence at the Take Steps walk this weekend (June 3) at Wade Oval.

fire_it_up: Is there a genetic basis for IBD such as family or ethnic differences?

Dr__Achkar: There is definitely a genetic basis for IBD. To date, there have been over 100 genes identified that are associated with the development of Crohn's or ulcerative colitis. 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. 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.

meggers: Does irritable bowel disease (IBD) affect a certain part of the colon or the entire bowel?

Dr__Achkar: Ulcerative colitis only affects the colon (large intestine); it starts in the rectum and can move up the colon to variable extents in different 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.


DIAGNOSIS

deep_sleep: Is there a specific test to diagnose Crohn’s or ulcerative colitis?

Dr__Achkar: Accurate diagnosis is critical because there are conditions that can mimic 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 determined by review of symptoms, treatment response, 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.

BikerDad: If ileitis and stomach ulcers are found with no other intestinal involvement, should gastrointestinal tuberculosis be ruled out? If so, how would you rule them out? A biopsy did not show granulomas.

Dr__Achkar: 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.


LIFESTYLE CHANGES and GENERAL TREATMENT

BikerDad: What is the first-line treatment for a young adult with stomach and ileal ileocecal Crohn's disease?

Dr__Achkar: There is no single right answer to your question. Factors such as severity and extent of the inflammation affect decision-making regarding therapy. An important point to consider is that recent studies evaluating patients with a recent diagnosis of Crohn's 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).

meggers: Can irritable bowel syndrome be treated with diet only, and when is it good to seek further treatment (medications, surgery)?

Dr__Gorgun: 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.

2056: What can someone with IBD do to boost their immune system?

Dr__Achkar: 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 infliximab (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.

crysta: What is the role of lifestyle with IBD?

Dr__Achkar: 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.

BikerDad: Can diet itself improve the disease? What diet is recommended for Crohn’s? What is the best method for weight gain?

Dr__Achkar: This is a frequently asked question. Most studies would suggest that there is no specific diet that consistently works for Crohn's 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 can develop lactose intolerance—paying attention to the effect of dairy intake on one's symptoms is worthwhile.

superior: Are there different medical treatments for ulcerative colitis as compared to Crohn's?

Dr__Achkar: Many of the medical treatments are similar for ulcerative colitis and Crohn's, but there are some important differences. Medications known as 5-aminosalicylic acid agents [mesalamine (Asacol®, Pentasa®, Lialda ®, Apriso®) and balsalazide (Colazal®) 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 [certolizumab pegol (Cimzia®), natalizumab (Tysabri®)] are only FDA-approved for the treatment of Crohn's disease but not ulcerative colitis.


CROHN’S DISEASE AND SURGERY

one_and_only: What type of surgery is done for Crohn’s disease?

Dr__Gorgun: 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.

jellop: Are there pros and cons for surgery for Crohn’s disease? Are there complications?

Dr__Gorgun: Yes, there are pros and cons 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.

SinatBe: Is there a risk of Crohn's coming back after surgery?

Dr__Achkar: Yes. When part of the small intestine and colon are removed and a reconnection is created, up to 80% of patients will develop recurrence of their Crohn's over the next 10 to 15 years. In some situations, physicians will recommend starting medication shortly after surgery as a preventative maneuver 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.

im_serious: Are there any new surgical procedures to treat Crohn's disease, particularly perianal disease and fistulas?

Dr__Gorgun: There are some newer surgical options in Crohn's D. 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 (around 25%). We still use perianal setons (recesses or cavities) 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.

jharp: Does previous traditional resection for Crohn's disease prohibit consideration for laparoscopic surgery with future strictures/narrowing?

Dr__Achkar: 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.


POUCHES

jonh334: Can you explain the IPAA procedure, and do you perform this at Cleveland Clinic?

Dr__Gorgun: The "IPAA" (Ileal Pouch Anal Anastomosis) or "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?

Dr__Gorgun: 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 who 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.

let_it_be: How long has surgery (removal of the large intestine) been performed? Are there any long term studies done on complications for people who have had no large intestine for longer than 30 yrs?

Dr__Achkar: The J-pouch procedure has been around since the 1980's. 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?

Dr__Gorgun: 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.

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?

Dr__Gorgun: Excellent. We have done quality of life studies following pouch surgery. The average number of bowel movements our patients experiencing is 5. 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 close to where they are.


IBD and CANCER

maryc: How much greater is the cancer risk associated with having IBD?

Dr__Gorgun: The cancer risk associated with IBD is increased 3- to 5-fold, as compared to the general population, especially if your IBD involves the colon. This includes ulcerative colitis and Crohn's colitis, and it appears that disease duration and 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, then 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 8 to 10 years, you should have a yearly colonoscopy.

want_it: Can IBD lead to more serious diseases such as cancer?

Dr__Achkar: 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 to12 years of disease activity.


CLEVELAND CLINIC-SPECIFIC QUESTIONS

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 New York.

Dr__Achkar: 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 prescription renewals
  • Manage appointment requests and cancellations
  • View their health summaries, current lists of medications and test results as released by their physicians
  • 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: mychartsupport@ccf.org

BikerDad: Thank you!

Dr__Achkar: Our pleasure. You mentioned that your son attends school close to Cleveland but has a physician in New York. We frequently help manage the care of college students in Cleveland in collaboration with their local physicians. I'm guessing your son is home for the summer but we would be glad to see him when he returns for the fall semester.

If you're interested in making an appointment for him at Cleveland Clinic, please call 216.444.7000 or toll free at 1.800.223.2273, extension 47000. Cleveland Clinic has been ranked #2 in gastroenterology in the nation by U.S. News & World Report since 2003.

lol987: Does Cleveland Clinic have an IBD Clinic or Center? How do I go about making an appointment?

Dr__Achkar: 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, 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.

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 who 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 clevelandclinic.org/myconsult Refer to the section about frequently asked questions.

thats_enough: If I wanted to come to the Clinic for surgery/treatment from out of town, is there a procedure in place to accommodate me (including visits, surgery, family/caregiver, place to stay, etc.)?

Dr__Achkar: 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. 5-5580 or via email at medicalconcierge@ccf.org.


Closing

Cleveland_Clinic_Host: I'm sorry to say that our time with Cleveland Clinic specialists Dr. Jean-Paul Achkar and Dr. Emre Gorgun is now over. Thank you both for taking the time to answer our questions today about IBD.

Dr__Achkar: Thank you. It was a pleasure to participate in this WebChat.

Dr__Gorgun: Thank you for your questions.


More Information

Cleveland_Clinic_Host: To learn more about Inflammatory Bowel Disease, please download our free treatment guide at www.clevelandclinic.org/IBD, or to make an appointment with Drs. Achkar or Gorgun, please call 866-841-4534.

Cleveland_Clinic_Host: If you're interested in making an appointment with any of the specialists in the Digestive Disease Institute at Cleveland Clinic, please call 216.444.7000 or toll free at 1.800.223.2273, extension 47000. Cleveland Clinic has been ranked #2 in gastroenterology in the nation by U.S.News & World Report since 2003.

You may request a remote second opinion from Cleveland Clinic through the secure eCleveland Clinic MyConsult Web site. 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 1995-2012 The Cleveland Clinic Foundation. All rights reserved.