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‘Ostomy doesn’t have to define you’: Toronto woman fights to end stigma

A Toronto woman is harnessing the power of social media in an effort to reduce the stigma around ostomy bags in an evolving campaign that has spanned over a decade.

In her latest effort, Jessica Grossman’s Uncover Ostomy blog and social media accounts feature herself as the model in re-creations of supermodel photo shoots. The key difference from the originals: her ostomy bag.

“The idea was, ‘Hey, look, I’m a young woman. I’m taking photos like this. Just because I have an ostomy doesn’t mean I’m old and gross,'” she told Global News.

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Grossman, now 30, had ostomy surgery at the age of 13 to treat her Crohn’s disease, which she said made it too painful to eat and caused excessive weakness and bleeding of the bowels.

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She said the surgery involved the removal of most of her large intestine and part of her small intestine. Waste would instead flow through an opening to a bag located outside the abdomen.

“My life is what it is because I’m able to live it with an ostomy,” she said.

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🎉 Yesterday marked the 9th anniversary of @uncoverostomy and I honestly can’t believe how long I’ve been blogging about my life with an #ileostomy. . Thank you to everyone who’s paid attention to me while I tried to change the conversation around #ostomy surgery. I don’t know why you did, but I certainly love you for it ❤️ . I like to think I was a part of the change we’ve seen around understanding and accepting of the surgery and I will continue to devote my life to spreading awareness about it to save lives. . Read my latest blog post on #uncoverostomy.org to see where we’re going next (well, a little teaser!) . #activist #health #blogger #blog #awareness #surgery #anniversary #celebration #worldostomyday

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Ulcerative colitis and Crohn’s disease

According to statistics provided by Crohn’s and Colitis Canada, more than 270,000 Canadians were believed to have ulcerative colitis and Crohn’s disease in 2018. That number is expected to rise to 403,000 by 2030, or to about one in 100 people.

The organization’s website said males and females are equally affected by the diseases. A combination of genetic and environmental factors are thought to be responsible.

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Alberta mother shows off life-saving ostomy bag in powerful boudoir photo shoot
Alberta mother shows off life-saving ostomy bag in powerful boudoir photo shoot

Stigma

“The perception of having an ostomy is far different from the reality of having an ostomy,” Dr. Zane Cohen of Toronto’s Mount Sinai Hospital told Global News.

Cohen, who performed surgeries for inflammatory bowel disease for about 40 years and is director of the Zane Cohen Centre for Digestive Diseases at Mount Sinai, said while work like Grossman’s has done a lot to lift the stigma around ostomies, the procedure is still daunting for those facing it.

“There’s still something at the back of your mind which tells you, ‘This is not quite normal,'” Cohen said.

“What you have to say is that it’s also not normal to have diarrheal diseases and bleeding and weight loss and not feel well, not being able to go to work.”

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Grossman said the stigma around ostomy bags has decreased since she started raising awareness about the procedure a decade ago.

“Ten years ago when you Googled the ostomy, really unfortunate pictures would show up,” she said.

Grossman credited Instagram, in part, for pushing change.

“There’s photos everywhere of all these people, amazing people saying, ‘Look, I can do this,’ — girls doing yoga — there’s guys doing rock climbing,” she said.

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“Some of their photos show the ostomy and some of them don’t, but they’re talking about it.”

Previous photo campaigns of Grossman’s put the ostomy bag at the forefront. But going forward, she said she intends to shift focus to the person instead.

“It’s like do what you want to do,” Grossman said.

“The ostomy doesn’t have to define you. It doesn’t have to be who you are. It helps you be who you want to be, but it’s not all that you are.”