Fighting IBD Misinformation

Sunanda (Susie) Kane, MD, MSPH, AGAF, has a way with patients. They tend to feel better about having Crohn’s disease or ulcerative colitis after meeting with her.

“I assure them that they can have a great life with Inflammatory Bowel Disease (IBD) and that it won’t shorten their time on earth. That they can look forward to producing healthy children. And that we have ever-improving tools — medications, surgery — for helping them deal with challenges the disease sends their way.”

Medications are one of Dr. Kane’s hot-topic buttons. If a patient is controlling symptoms with steroids, finding other ways to control the disease is the first change she encourages.

“When you have ulcerative colitis or Crohn’s disease, you have to consider steroid use very carefully. They work by essentially shutting down the entire immune system, which is a good option for controlling severe symptoms very quickly. But I teach patients that a steroid is not for long-term therapy. Even a low dose of prednisone suppresses the adrenal glands and can promote cataracts, osteoporosis and diabetes.”

The arsenal of IBD medications is fairly large, and understanding their proper use is key. Some control symptoms, like diarrhea and pain, and some control inflammation. Immunomodulators such as azathioprine and biologics actually repair the damage inflammation does, so the lining of the intestine can actually heal.

Patients are often worried about the association of azathioprine and the other commonly used immunomodulator 6-mercaptopurine (6MP) with lymphoma (cancer of the lymph nodes).

“I tell them we do not know if this is truly a causative relationship, and that their risk of adverse events from active Crohn's disease or ulcerative colitis is far higher than the risk of lymphoma from azathioprine use.”

Because controlling IBD can mean taking many pills several times a day, patients sometimes stop taking medications once symptoms cease.

“IBD is a chronic condition that at this time we cannot cure. Extended remission, without symptoms, is the goal. Data suggest that even people who have been well for a long time if they stop their medications will eventually have recurrence of their disease. Instead, we find a regimen that keeps them well.”

What else do Dr. Kane’s patients want to know about IBD?

Do I need a colonoscopy every year?

Annual colonoscopies are for people who have had ulcerative colitis or Crohn's disease involving the colon for longer than 10 years, to survey for colon cancer. A procedure is not necessarily mandated annually until that time unless the disease is active or the results will change management.

Is there a special diet for patients with IBD?

You may have heard a lot about what you can and cannot eat. However, there are lots of factors that go into your diet, including disease location, character and activity, as well as personal tastes, preferences and lifestyle. There is no one diet that fits all, and certainly you cannot cure your IBD with a diet. To date there are no cures for either Crohn's disease or ulcerative colitis. Diet can help with symptoms and sometimes control mild inflammation but will not close a fistula or heal an abscess.

If I have surgery, will I end up with a bag the rest of my life?

Surgeons who are specially trained have developed amazing techniques to minimize how much bowel has to be removed as well as ways to save people from needing permanent stomas.

Can I have children if I have been diagnosed with IBD?

Women can get pregnant and successfully carry to term without an increased risk of adverse outcomes. It is best to work with both a high-risk obstetrician and your gastroenterologist to ensure that there is coordination in your care to keep you and your baby healthy. Men sometimes think that they have to stop taking azathioprine/6MP before they can father children. Although early research suggested that azathioprine may be harmful to babies born to fathers who have been on azathioprine, more recent research has not found that to be true.

Do I have to stop all medicines when I am pregnant?

Most medications used to treat IBD are low risk during pregnancy. More damage is done if the mother is sick than if she is taking medications. More dangerous is smoking and alcohol.

 

Learn much more about Dr. Kane’s approach to IBD in her new book, "IBD Self-Management: The AGA Guide to Crohn’s Disease and Ulcerative Colitis," published earlier this year by AGA Press (www.ibdselfmanagement.com).

Sunanda Kane, MD, MSPH, AGAF, is Professor in the Miles and Shirley Fitterman Division of Gastroenterology and Hepatology, Mayo Clinic College of Medicine, Rochester, Minnesota.