7 Lessons for Living Well with Ulcerative Colitis

When you have ulcerative colitis (UC), you have questions. Fortunately, David T. Rubin, M.D., associate professor of medicine and co-director of the Inflammatory Bowel Disease Center at University of Chicago Medical Center, has answers. We asked Dr. Rubin for his best advice for people living with UC. His message is positive: Great progress has been made in the management of this condition. Like Crohn’s disease, ulcerative colitis is an inflammatory bowel disease (IBD), a chronic, immune-mediated disease of the intestinal track. When it’s active, there are substantial symptoms and often a poor quality of life. Yet today, people with inflammatory bowel disease should expect to be healthy, he says. His advice:

  1. Chronic doesn’t mean a poor quality of life. Don’t expect to live an unpredictable life around the bathroom or be socially isolated. Do expect (and demand) to live a normal life and pursue your dreams.
  2. Understand the “whys” of management. The goal: "Turn off" the inflammation, keep it off as long as possible, and avoid complications of the disease and of the therapies that are used to treat the disease. By keeping these goals in mind, you can become more proactive in your disease and self-care.
  3. Work with your doctor. Find one who is an expert at managing inflammatory bowel disease, or who’s willing to send you to someone who is when things are not going well. Tell your doctors about symptoms or new problems early, so adjustments can be made if necessary. The FDA has approved five new therapies for inflammatory bowel disease in the last two years, and there are more to come.
  4. Expect remission. Remission—the absence of inflammation and symptoms due to inflammation—can be long-term and last for years. Patients in remission have no symptoms and are able to function normally. The newest therapies for inflammatory bowel disease are effective at achieving remission.
  5. Stay with your medications, even when you feel fine. It’s difficult for any of us to take regular medication, but it takes much less time and energy to keep you in remission than it does to get you back to remission if you relapse. It is well known that people who are non-adherent to their maintenance medications are more likely to relapse and have complications.
  6. Educate yourself. Search for reliable sources of information, such as the Crohn’s & Colitis Foundation of America, and learn what you can do to be in control of your condition and not let your condition control you. Keep in mind that if you are reading individual testimonials about inflammatory bowel disease, these may not apply to you.
  7. Get support. Join a support group for people with inflammatory bowel disease. There are also a number of support groups for family members with loved ones who have an IBD. Patients who attend support groups can develop a broader network of support for their condition outside their immediate circle.
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