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.”
People diagnosed at a young age take their cues from their parents, whose first impulse is often to counsel secrecy.
“When I got Crohn’s disease at 13, my parents told me not to tell anyone,” says Jonathan Vatner, 33, a freelance writer in New York. Vatner recently asked his mother why. “She said people would treat me like an invalid and that this was our problem as a family, not anyone else’s.”
As a teenager, Vatner followed their directions. “I told one person in the next six years. I’d take all these pills and hide them from people. I learned how to throw a pill into my mouth during meals from under the table. I was so ashamed.”
A 30-year-old woman who now lives in Israel said it was hard when she was diagnosed with Crohn’s at 14 and her parents told her to keep it to herself. “It was something I wanted to own by speaking about,” says the woman, who asked that her name not be used. “I didn’t tell anyone. My parents were superstitious. They believed if you talk about it, you give more energy to it.”
Such experiences underscore the dilemma facing those with IBD: Speak about your condition and you risk disgusting your listener. Don’t speak about it and you stifle one of the most important parts of who you are.
One would think that the proliferation of Internet sites, Facebook IBD pages, specialized camps for affected children and the Crohn’s and Colitis Foundation of America’s support groups scattered throughout the country would help patients feel less alone. But for many patients, emotional struggles persist, in part because others do not know how to provide a safe place for them to be open.
“Be empathetic, not sympathetic. Don’t baby the person,” says David Eisikovits, 52, of Brooklyn, who leads a support group in the foundation’s Manhattan office. “Give the person space and if they want to talk, let them talk. Sometimes we get smothered in pity and it makes people with IBD feel very self-conscious, helpless and low.”
According to one psychologist, there are legitimate reasons why some young people do not want to speak about their IBD to friends and others do.
“Some kids are more comfortable keeping it private, others want to share the truth,” says Fran Martin, a psychologist in Elkins Park, Pa., whose daughter, now 28, was diagnosed with Crohn’s at age 13. “It’s hard for children to find other children they can talk with. Who wants to talk about poop? That’s really what having IBD is about.”
“For kids, keeping it secret is a way to maintain a sense of control over something over which they have very little control,” she continues. “The toll of maintaining a secret as an adult is that while you maintain surface control, you get caught in a trap of isolation and it’s emotionally detrimental. We’re social creatures… who find comfort when they find even a small group with whom they can share their stories.”
Martin shares the concerns of many other parents whose decisions on behalf of their children take them to dark places.
“IBD shakes up your life really profoundly,” she says. “I have to live with the guilt that my daughter has been on toxic medications for years. I feel terrible.”
The association of Jews with IBD continues to create confusion, especially outside of urban areas.
Kevin Anderson, now 36, was 15 and a high school sophomore in Lafayette, La., when he developed severe stomach cramps. In the emergency room, doctors diagnosed gas and sent him home. After multiple visits with the same results, Anderson, who is African-American, threw a fit.
“When the doctor did X-rays, prescribed Mylanta and said I just had a pocket of air in me, I couldn’t take it any more,” he says. Anderson knelt down, wrapped his arms around the doctor’s knees and wouldn’t let go until he agreed to perform surgery. Anderson had a complete bowel obstruction.
Had he been sent home again, he says, “there was a strong possibility I would have died.”
One doctor was “a Jewish guy from New York and he talked about me maybe having Crohn’s disease,” Anderson says. “The local doctor said no way possible, because I was black and I was male. The Jewish doctor explained that it wasn’t just diagnosed with Jewish women.” The local doctor still refused to do a colonoscopy, perhaps because Anderson’s family had no health insurance, he says. After more emergency room visits, a colonoscopy was performed six months later. Anderson was finally diagnosed with Crohn’s.
“It was really hard. That’s why I was suicidal at the time. It was really stressful on me. I didn’t want to socialize with other kids. I didn’t talk to them about what I was going through.” One high school rumor had it that Anderson had AIDS, he says.
Today, Anderson has come to terms with his Crohn’s. “I didn’t choose this life, but I have to deal with it,” he says. Every time someone asks how he’s doing, his answer is “As long as I have a heartbeat, I’m not complaining.”
Contact Linda Kriger at firstname.lastname@example.org
This story "IBD Patients Reveal Their Lonely Childhood Stories" was written by Linda Kriger.