Whenever Serena Ehrlich goes someplace new, she scouts out the location of the bathroom. That's because Ehrlich, 38, a Los Angeles-based salesperson for a commercial wire service, has ulcerative colitis. She developed the disease 12 years ago and has been in remission for the past three. Still, the old habit lingers. "Everyone who has ulcerative colitis will tell you that when you walk into a bookstore, a shop, or a restaurant, that's the one thing you want to know first. It's our rule of thumb."
This does not surprise David T. Rubin, MD, associate professor of medicine and co-director of the Inflammatory Bowel Disease Center at the University of Chicago Medical Center. "Ulcerative colitis makes people miserable psychologically," he says, noting that people with the condition often need to go to the bathroom suddenly, without any warning.
"Your entire world begins to revolve around it. And you can't share the information because there's a stigma with talking about the bowels. So [some] people stay home and worry that they'll live the rest of their lives this way," he says.
What Is Ulcerative Colitis?
Ulcerative colitis affects the large intestine (also known as the colon) and the rectum. It causes inflammation of the colon's inner lining and the rectal wall, which become red, swollen, and ulcerated, resulting in abdominal pain or cramping, rectal bleeding, whitish mucus, and diarrhea. Less common are fatigue, appetite loss, and anemia. Some people also have joint pain, redness, swelling, and liver problems.
An estimated 250,000 to 500,000 Americans have ulcerative colitis, although Rubin believes that number is higher. "We think the number is 700,000, and that's probably an underestimate," he says, noting the statistics are taken from small studies that may not represent the entire population. Although most people are diagnosed before age 30, children as young as 10 can develop the condition.
Ulcerative colitis is often confused with two other digestive disorders: irritable bowel syndrome (IBS) and Crohn's disease. The common irritable bowel syndrome affects both the small and large intestines, causing abdominal pain, gassiness, bloating, and changes in bowel habits -- constipation, diarrhea, or both. IBS is also known as "spastic colon" and is easily confused with ulcerative colitis but does not cause bleeding.
Like ulcerative colitis, Crohn's disease causes inflammation in the colon wall, but it can also inflame other organs, including the small intestine and upper digestive tract. Other symptoms include fever, anemia, and sometimes more serious complications, such as intestinal blockage.
What Causes Ulcerative Colitis?
No one knows exactly what causes ulcerative colitis, but a genetic link appears to play a part. Ashkenazi Jews are slightly more likely to get it, and, while statistics vary, about 10% to 30% of people with the disease have at least one close family member with it. Research also suggests it may be an autoimmune disease, in which the body attacks its own healthy organs and tissues. Contrary to popular belief, neither stress nor specific foods cause ulcerative colitis, although both can antagonize symptoms.
How Is Ulcerative Colitis Treated?
Medication, the core treatment, eases symptoms and sends the disease into remission without flare-ups. Mild to moderate ulcerative colitis often responds to drugs, such as aminosalicylates that reduce the inflammation of the colon. Doctors sometimes prescribe short courses of corticosteroid therapy, such as prednisone or hydrocortisone, when aminosalicylates fail to control the inflammation. In severe cases, medications that suppress the body's immune system, which in turn reduces inflammation, are used.
Because ulcerative colitis is a chronic disease, taking medication on a regular basis is key. "A lot of people like to think that once they get into remission, they don't need to take medication. [But] the medication isn't only to control symptoms; it's also to prevent them," Rubin says.
Does Ulcerative Colitis Cause Cancer?
Most people diagnosed with ulcerative colitis are concerned they will develop colon cancer, but this is rare. The lifetime incidence of colon cancer is 2.5% at 10 years, 7.6% at 30 years, and 10.8% at 50 years. Those at higher risk for cancer have a positive family history of colon cancer, long durations of colitis, extensive colon involvement, and primary sclerosing cholangitis, a complication of ulcerative colitis.
The American Cancer Society calls for screening with a colonoscopy eight years after an ulcerative colitis diagnosis if the whole colon is involved, and 12 to 15 years if only part of the colon is affected. Follow-up screening should occur every one to two years thereafter.
Does Surgery Help Ulcerative Colitis?
A small percentage of people may eventually require surgical removal of their colon. (An opening is made in the abdominal wall, and the end of the small intestine is attached to the skin of the abdomen to form an opening; stool collects in a bag attached over the opening.) This is done only if symptoms are severe and don't respond to treatment, or if complications or precancerous changes occur. Surgery is also, in essence, a cure and removes the need for medication.
Ehrlich still keeps track of bathroom locations but laughs at herself for doing it. "Now that I'm on a regular medication program, I don't have any symptoms. This has changed my world."