IBD Patients Reveal Their Lonely Childhood Stories

Talking About Intestinal Illness and Symptoms Others Don't Want To Hear

Don’t Tell Anyone: Jonathan Vatner, pictured at age 29, was diagnosed with Crohn’s at 13. His parents told him not to tell others.
jonathan vatner
Don’t Tell Anyone: Jonathan Vatner, pictured at age 29, was diagnosed with Crohn’s at 13. His parents told him not to tell others.

By Linda Kriger

Published August 11, 2013.
  • Print
  • Share Share
  • Single Page

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.

Click to see the rest of the section, Click for more stories about genetics.

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.”


The Jewish Daily Forward welcomes reader comments in order to promote thoughtful discussion on issues of importance to the Jewish community. In the interest of maintaining a civil forum, The Jewish Daily Forwardrequires that all commenters be appropriately respectful toward our writers, other commenters and the subjects of the articles. Vigorous debate and reasoned critique are welcome; name-calling and personal invective are not. While we generally do not seek to edit or actively moderate comments, our spam filter prevents most links and certain key words from being posted and The Jewish Daily Forward reserves the right to remove comments for any reason.





Find us on Facebook!
  • Is pot kosher for Passover. The rabbis say no, especially for Ashkenazi Jews. And it doesn't matter if its the unofficial Pot Day of April 20.
  • A Ukrainian rabbi says he thinks the leaflets ordering Jews in restive Donetsk to 'register' were a hoax. But the disturbing story still won't die.
  • Some snacks to help you get through the second half of Passover.
  • You wouldn't think that a Soviet-Jewish immigrant would find much in common with Gabriel Garcia Marquez. But the famed novelist once helped one man find his first love. http://jd.fo/f3JiS
  • Can you relate?
  • The Forverts' "Bintel Brief" advice column ran for more than 65 years. Now it's getting a second life — as a cartoon.
  • Half of this Hillel's members believe Jesus was the Messiah.
  • Vinyl isn't just for hipsters and hippies. Israeli photographer Eilan Paz documents the most astonishing record collections from around the world:http://jd.fo/g3IyM
  • Could Spider-Man be Jewish? Andrew Garfield thinks so.
  • Most tasteless video ever? A new video shows Jesus Christ dying at Auschwitz.
  • "It’s the smell that hits me first — musty, almost sweet, emanating from the green felt that cradles each piece of silver cutlery in its own place." Only one week left to submit! Tell us the story of your family's Jewish heirloom.
  • Mazel tov to Chelsea Clinton and Marc Mezvinsky!
  • If it's true, it's pretty terrifying news.
  • “My mom went to cook at the White House and all I got was this tiny piece of leftover raspberry ganache."
  • from-cache

Would you like to receive updates about new stories?




















We will not share your e-mail address or other personal information.

Already subscribed? Manage your subscription.