Growing up can be hard under the best of circumstances. But try sharing with a friend your most intimate problem, one you secretly confront every day: that you live with a disease ravaging your waste disposal system.
It’s a lonely journey, according to interviews with young people affected by Crohn’s disease or ulcerative colitis, collectively known as inflammatory bowel disease.
IBD patients often live with cramps, diarrhea, rectal bleeding, urgency, stomach pain, joint pain, skin conditions, bloating, weight loss, exhaustion, low red blood counts and other symptoms not easily discussed in polite society. It is much more serious than irritable bowel syndrome, with which it is often confused. IBS, while troublesome, does not cause inflammation and is not an autoimmune disease.
Of the 1.4 million people in the United States who suffer from IBD, about a third are under age 30, and their number is rising. The autoimmune disorder is believed to be caused by some combination of genetics, environmental risks and an abnormality of the immune system, and it affects as many as 396 per 100,000 population, mostly Caucasians, according to the Centers for Disease Control, though ethnic differences are closing.
The rate among Ashkenazi Jews is 2 to 4 times greater. IBD is widely thought of as a Jewish genetic disease, even though racial and ethnic differences have been narrowing, according to the Centers for Disease Control.
Chava Z. Cohen, 30, of Enfield, Conn., who was diagnosed with ulcerative colitis at 18, speaks cautiously about Crohn’s and only on an as-needed basis, when she’s fairly certain the other person will empathize rather than judge.
“The first person I had a conversation with outside of my family was when I was around 20 and I had a friend who had bowel issues,” Cohen says. “She had a fissure that made her constipated. I tested the waters. When you see the other person is not disgusted, you feel more comfortable. ‘Yeah, I have problems in the bathroom.’ You move on to uncontrollable diarrhea, and then you move on to ‘sometimes I can’t make it to the bathroom.’”
Cohen is an athlete. Only when silence became unwieldy did she reveal to her running partner that she was sick. “I couldn’t always make it to her house on time because I was trying to go to the bathroom before I left my house,” she says. “Sometimes I’d say, ‘we have to stop running.’ I finally had to say, ‘I have to get back to the bathroom.’”
Cohen worked out with a personal trainer for 12 years, but only when she fell seriously ill and lost 30 pounds did she reveal her problem — after he told her she looked great.
“I told him I was sick, and that’s why I lost weight and that’s why I was having trouble lifting five-pound weights,” she says. “It’s embarrassing. If I had a heart condition, I wouldn’t care, but this is the bathroom. People don’t talk about what comes out of their rear end.”