'I'm alive because of it': Ostomy advocate fights to dispel stigmas around the procedure
People with ostomy surgery rally on social media after bullied 10-year-old boy takes his own life
Originally published on March 2, 2019
Jessica Grossman is celebrating a special anniversary this month. It's not for a friend or family member's birthday or a wedding anniversary — it's been 16 years since she underwent ostomy surgery.
"Why not? I'm alive because of it," she told White Coat, Black Art host Dr. Brian Goldman.
An ostomy is an operation that allows bodily waste to pass from the intestines through a surgically-created opening, also called a stoma, located on the abdomen. The waste is collected into an ostomy bag attached to the stoma, and emptied as needed by the patient.
According to the Ostomy Canada Society, roughly 70,000 people in Canada and the United States have undergone some form of ostomy surgery. Many people like Grossman have an ostomy because of Crohn's disease. Others have bowel cancer or ulcerative colitis.
But it's the kind of procedure many people are uncomfortable talking about, Grossman says. As the founder of Uncover Ostomy, a non-profit dedicated to dispelling negative stigmas and misinformation about what it's like to live with an ostomy bag, she is on a crusade to change that.
Her mission statement came into dire focus after hearing the story of Seven Bridges, a 10-year-old boy from Louisville, Ky., who took his own life in January. His mother says he was verbally and physically abused, in part, because he wore an ostomy bag.
"I have no words. It was very upsetting to read about," said Grossman.
According to a local news report, Seven was born with a bowel condition, and had undergone 26 surgeries in attempts to fix the problem. He was outfitted with an ostomy bag as a result of the surgeries.
His mother, Tami Charles, said the bullying came to a head last August when Seven was choked and called the n-word by other students.
Five months later, Seven took his own life. Charles found her son's body in his room.
Seven's parents plan to take legal action against Jefferson County Public Schools, arguing they didn't do enough to stop the long-term bullying.
Social media rally in support
Seven's death prompted people around the world to share their own stories and photos of themselves with ostomy bags — using the hashtag #BagsOutForSeven — in solidarity with anyone who has been ostracized for it.
I am completely heartbroken and frustrated that this 10 year old was teased and ridiculed over having a colostomy bag to the point where he actually took his own life.<br>My prayers go out to Seven Bridges and his family and friends 😔🙏🏽 <a href="https://twitter.com/hashtag/bagsoutforseven?src=hash&ref_src=twsrc%5Etfw">#bagsoutforseven</a> <a href="https://twitter.com/hashtag/nocolonstillrollin?src=hash&ref_src=twsrc%5Etfw">#nocolonstillrollin</a> <a href="https://t.co/HsJZaHWpqs">pic.twitter.com/HsJZaHWpqs</a>—@LondonHarrah
Bullying in any form is wrong! Let’s stamp this scourge out! <a href="https://twitter.com/hashtag/bagsoutforseven?src=hash&ref_src=twsrc%5Etfw">#bagsoutforseven</a> <a href="https://twitter.com/hashtag/colostomy?src=hash&ref_src=twsrc%5Etfw">#colostomy</a> <a href="https://twitter.com/hashtag/ostomy?src=hash&ref_src=twsrc%5Etfw">#ostomy</a> <a href="https://twitter.com/hashtag/proudtobeanostomate?src=hash&ref_src=twsrc%5Etfw">#proudtobeanostomate</a> <a href="https://t.co/bQDyVFfJaa">pic.twitter.com/bQDyVFfJaa</a>—@chris_mo_90
"The #BagsOutForSeven is basically just being proud of having an ostomy, and showing it, and showing that there are people living lives just perfectly normally, and that you're not alone," Grossman said.
Karen Bruton, a front-line nurse certified by Nurses Specializing in Wound, Ostomy and Continence Canada (NSWOCC), says it's becoming less of a taboo topic because of the positive social media reaction from people like Grossman.
"I do believe bullying is in the spotlight. It still happens, but there's more awareness these days than years ago. And I do believe social media is such an important vehicle to get the message out."
NSWOCC workers like Bruton provide counselling and information so patients can acclimate to life with an ostomy.
"People usually for the first two to four months are homebound. They refuse to go out. They're so fearful of leakage and the smell," she told Dr. Goldman.
Information, support to help dispel stigma
Grossman says much of the stigma surrounding ostomies stem from a lack of general information about what they are and how they work.
"They think it's gross … It just has to do with, you know, shit. Sorry if I'm not allowed to say that but ... it's never fun to talk about it," said Grossman.
Bruton says she's also heard stories from patients about health-care professionals "sneering" at their condition, or treating them poorly "due to the odour, and the effluent, and lack of knowledge by front-line staff."
Grossman is currently working with the Zane Cohen Centre at Mount Sinai Hospital in Toronto to provide more resources for patients who undergo an ostomy, and for doctors who have to field questions about the procedures.
Bruton welcomes the effort.
"There needs to be more resources, and again, it comes down to finances, but it is so important that there be resources for psychosocial issues for persons that have stomas, especially for kids."
Written by Jonathan Ore. Produced by Jeff Goodes.
Where to get help
Canada Suicide Prevention Service: 1-833-456-4566
In Quebec (French): Association québécoise de prévention du suicide: 1-866-APPELLE (1-866-277-3553)
If you're worried someone you know may be at risk of suicide, you should talk to them, says the Canadian Association for Suicide Prevention.