Joel Cutler was 8 or 9 when he came down with Crohn’s disease, a “brutal” illness, as he puts it now, that causes incapacitating diarrhea and painful abdominal cramps.
When he was 12, he lived for a year with an ostomy, an artificial opening in the abdomen through which fecal matter empties into a bag. At 15, he spent three months at Children’s Hospital, living solely on intravenous feedings to give his tortured gut a rest and his body a chance to grow.
Today, at 39, he runs a business in Newton, is happily married and delights in his baby daughter. But his Crohn’s still flares up sometimes, and he can’t play golf, go sailing or do anything that keeps him very far from a bathroom.
Yet he is amazingly upbeat and eager to tell the 1 to 2 million Americans with inflammatory bowel disease – a category that includes Crohn’s and ulcerative colitis – that it is time to end the silence about these most private afflictions.
It is also a time, researchers say, for growing hope. While the cause of inflammatory bowel disease is still unknown – genetics seems to play a role; stress probably does not – there are a number of new treatments in the pipeline.
IBD or inflammatory bowel disease – not to be confused with the more common but less serious “irritable bowel syndrome” – is rarely fatal. But as Cutler can attest, it involves an intermittent battle with severe diarrhea and pain that at times can be both physically and psychologically stressful.
Part of that stress occurs because the problems strike so early in life, usually between ages 15 and 40. In fact, many parents only learn that a child has bowel disease when she stops growing because she can’t absorb enough calories.
Parents realize “they haven’t had to buy new clothes, especially new shoes . . . or the child has remained at the same height for a long time,” says Dr. Richard Grand, chief of pediatric gastroenterology at New England Medical Center.
For many teenagers, the only way to resume growing is to insert a tube through the nose and into the stomach at night and pump in a formula of 1,500 to 1,800 calories as they sleep. For adults, who have already attained full height, nighttime feedings are usually not necessary, although they may lose weight and become malnourished during flareups.
It’s not always easy to distinguish between Crohn’s and ulcerative colitis, but it’s worth the time and money to undergo barium X-rays and colonoscopy – in which a doctor examines the lining of the intestine through a tube – because the treatments, especially surgeries, differ depending on which form of inflammatory bowel disease you turn out to have.
In ulcerative colitis, the mucosal lining of the colon (large intestine) is inflamed, perhaps because of a misguided attack by the immune system or an infection. Flareups can be triggered by non-steroidal anti-inflammatory medications like ibuprofen.
Whatever the trigger, the result is that immune cells and chemicals they secrete called cytokines flock to the intestinal lining and damage it. In virtually all cases, ulcerative colitis starts in the rectum and spreads upward, sometimes involving the entire colon.
Over time, this inflammation raises the risk of colon cancer, especially for people with widespread disease. The normal lifetime risk of colon cancer is 5 percent; for those with ulcerative colitis, it’s five times that, says Dr. Mark A. Peppercorn, director of the center for inflammatory bowel disease at Beth Israel Deaconess Medical Center.
Increasingly, though, people with ulcerative colitis have better treatments to choose from. Many, for instance, get relief from so-called 5-ASA drugs such as sulfasalazine. Newer drugs in this class include Asacol, Pentasa and Dipentum.
If these fail, steroids like Prednisone often help, though they have side effects. A drug called budesonide, already on the market in Europe and Canada but not yet approved here, appears to act like Prednisone but with fewer side effects.
And doctors sometimes use even more potent drugs like Imuran (azathioprine) or 6-MP (mercaptopurine), says Dr. Bruce Sands, director of inflammatory bowel disease clinical research at Massachusetts General Hospital.
Some studies suggest that omega-3 fatty acids – available as dietary supplements – may also help, but you have to take quite a bit of this stuff, so check with your doctor first.
Surprisingly, the same nicotine patches that smokers use to kick the habit may work, too. (For unclear reasons, smokers are at lower risk for ulcerative colitis and those who quit have twice the normal risk for two years. But quitting still pays.)
And then there’s surgery, which usually involves removing the entire colon. The result is “you don’t have ulcerative colitis anymore because you don’t have a colon,” says Dr. Kenneth R. Falchuk, a gastroenterologist at Beth Israel Deaconess.
If the colon is removed, surgeons either create a hole in the abdominal wall through which feces exit or they attach the end of the small intestine to the anus and create an internal pouch to collect feces.
People who have the internal pouch go to the bathroom normally, though often five to six times a day – an improvement over the 10 to 20 times a day many had before. In some people, however, the internal pouch itself may become inflamed.
If the problem is Crohn’s disease, parts of both the large and small intestine may be inflamed, and the stomach, esophagus and mouth may be involved, too.
Although some researchers think there may be a link between Crohn’s disease and measles vaccination, this is unproven, and vaccinating kids “is not a serious worry,” says Grand.
Many people with Crohn’s also develop abcesses (pockets of infection) or fistulas – perforations of the intestine that allow feces to travel to the bladder, vagina, abdominal cavity or skin. Strictures, or scar tissue that can create intestinal obstructions, are also common.
In general, extensive surgery is less useful for Crohn’s because the disease tends to recur, although surgery can help with strictures, abcesses and fistulas.
Many of the medications for ulcerative colitis help in Crohn’s disease, too, but there are others as well, including antibiotics and a class of drugs that work on cytokines, the natural substances that act as messengers for the immune system.
Though not on the market yet, a drug called cA2 has yielded “very exciting results” in two-thirds of patients tested, says Peppercorn of Beth Israel Deaconess.
It’s not clear whether cA2 will be equally effective in ulcerative colitis, adds Sands of MGH, but several other drugs, including two cytokine-based drugs, are being studied.
“These are very exciting new drugs,” says Falchuk of Beth Israel Deaconess. “They are not commercially available, but doctors in this area can channel patients to these trials.”
But for people like Cutler who have battled bowel disease for years, it’s not just the new drugs that are exciting. It’s the hope that, as people go public with problems that have historically been shrouded in silence, the stigma will decrease.
“People with these diseases go through long periods of feeling really, really horrible,” says Cutler. But “I honestly and truly believe that in many ways, finding an equibilibrium in life from having a difficult disease has made me stronger.”
To learn more
For more information about Crohn’s disease and ulcerative colitis, call the Crohn’s & Colitis Foundation of America, Inc.: – 1-800-343-3637 for brochures.
- 1-800-932-2423 for information on support groups
- 617-449-0324 for the Northern New England Chapter.