Jessica Grossman is 25, relishing the prime of her life. A program manager at a digital agency, she’s also a blogger and is starting a web drama series on the side.

She lives with her boyfriend in a downtown condo — her university and graduate school diplomas on the wall — and she recently completed a strenuous 60-day workout program with the new arm muscles to prove it.

And Grossman, a Crohn’s patient who had six feet of intestines surgically removed, wears an ostomy bag attached to her lower abdomen to collect her stool.

“This is who I am,” says Grossman, founder of the education and advocacy website and blog, Uncover Ostomy.

She’s the poster girl for ostomies, intent on breaking through the shame and silence. An ostomy is the surgically created opening in the body for the elimination of bodily discharges such as feces or urine. It may be required after the removal of part of the intestines or bladder due to cancer, traumatic injury, or diseases, such as Crohn’s and ulcerative colitis.

An ostomy doesn’t have to inhibit a person from anything, physically, mentally or sexually, explains colorectal surgeon Zane Cohen, director of a digestive diseases centre bearing his name at Mount Sinai Hospital. Thousands of people from every vocation, even professional athletes and long-range pilots, he says, have ostomies, but it’s not talked about much.





“People don’t understand what an ostomy is — they haven’t seen someone thriving with it,” says Grossman. “Tons of people refuse the surgery. They’d rather die. They don’t understand you can live a normal life. I’m showing I’m just like everybody else.”

For a long period, she wasn’t like everybody else. She was only 8 years old when digestion started to hurt. At 9, she was diagnosed with Crohn’s, an incurable gastrointestinal disease, that was controlled for a while with medication and diet.

But by age 11, her pain worsened and she spent two years in-and-out of hospital. She subsisted on meal replacement drinks and then intravenous nighttime feedings. She attended school sporadically and had no close friends.

When she was 13, her doctors presented the last remaining option: surgery to remove her colon and part of her small intestine. She remembers her surgeon, a family friend, explaining the operation. His wife, who wore an ostomy bag, visited her and showed her.

“I was very lucky to see that,” says Grossman. “I knew she was married, had kids. She was normal. It’s one of the reasons I started Uncover Ostomy — to be that person for other people.”

Postsurgery, she adjusted well to the ostomy bag. “Because of how sick I’d been, that made having the ostomy a lot easier. I knew there was no other way.”

The hard part, she says, was adjusting to regular life. After two years mostly in bed, she found walking difficult. She had to teach herself to swallow real food.

She started Grade 9 at Lawrence Park Collegiate where she knew no one. Having spent so much time alone and sick, she didn’t know how to act around other kids. Still heavy from her steroid medication, she was picked on by other students.

But slowly by the end of high school, she blossomed, losing weight and gaining energy. “I started being a real person.”

For a media class, she had to develop a public relations campaign for something — and she chose ostomies as a way to educate other students. Her project included photos of herself wrapped in a sheet with her ostomy showing. Her presentation was a hit and the idea for Uncover Ostomy was planted.

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While a student at Western University in 2009, Grossman launched the website, featuring photos and blog, with the help of Rob Hill, whom she had met at an ostomy camp. Hill, a fellow Crohn’s sufferer and ostomate, climbed Mount Everest and promotes awareness of intestinal diseases.

Grossman blogs about her life as a normal young adult. The Crohn’s and ostomy are just a subtext. Uncover Ostomy’s Facebook page has 7,000 likes and new blog posts usually get 10,000 unique hits in the first week, she explains. She’s been invited to speak at ostomy conferences in the U.S. and Italy and visits adults and kids in Toronto hospitals awaiting the surgery.

Grossman’s bag is about six inches long, made of durable plastic covered by fabric, attached below and to the right of her navel. She empties it as needed. “My body considers it like a limb,” she explains.

She wears any clothes she wants, except silk dresses which reveal bumps. “But a lot of people shouldn’t be wearing silk dresses,” she says with a laugh. On a Mexican vacation, she managed a string bikini with a bit of manoeuvring, she adds.

She’s been so public about her ostomy that most guys she dated already knew. “It’s just what you have,” she says with a shrug. “It doesn’t impact anything.”

When her boyfriend started the Insanity workout challenge on DVDs at home, she jumped right in. The exercises, which ran from 35 minutes to an hour over the course of 60 days, works the body at full capacity for longer periods than other training programs, according to the Insanity website.

Grossman never sweated so much. “If you told me three months ago, I’d be doing side push-ups, I’d have said, no way,” says Grossman with a laugh.

This strenuous program was a sweet victory. “I am really proud. I was the kid who would walk the laps in gym class because I couldn’t run. I was the kid sick in bed playing video games because I couldn’t do anything else.”

It was also a remarkable accomplishment because Grossman has been coping with digestive problems again. Her Crohn’s didn’t bother her for 12 years, but in recent months she has been unable to eat solid foods without vomiting or feeling pain. She’s living on protein shakes, peanut butter and coconut milk. She’s been undergoing medical tests.

Crohn’s disease, she points out, is never ending. A remission doesn’t last forever. That’s her biggest challenge — coping with Crohn’s, not living with an ostomy.

“My mantra in life is that you do everything you can until you’re not healthy anymore,” she says. “I’m still doing everything I want. I’m lucky.” She knocks on her wooden table and laughs.