Toronto Woman Promotes Ostomy Bag Awareness: 'I'm Not Defined by It'

"If we don't talk about it, if we don't teach people, how are they going to know to accept us for who we are?" says Jessica Grossman, who founded the nonprofit Uncover Ostomy

Jessica Grossman was faced with a difficult choice when she was 13 years old.

"I was so sick that my intestines were basically septic and the doctors gave me the option to have ostomy surgery," she tells PEOPLE. "They said, 'You can have this surgery and it should make you feel better, but you're going to have a bag for the rest of your life — or you don't have the surgery and we don't know how much longer you're going to live.

"I was like, 'Well, I want to live,' — so I choose the surgery."

Ostomy surgery is a life-saving procedure that allows bodily waste to pass through a surgically created stoma on the abdomen into a prosthetic known as a pouch or ostomy bag on the outside of the body, according to the United Ostomy Associations of America. Approximately 1 in 500 Americans live with an ostomy, the organization reports.

Jessica Grossman is raising ostomy awareness
Jessica Grossman/instagram

Now 33, Grossman is glad she made the decision to save that sick little girl.

Growing up in Toronto, she started experiencing stomach pains at 8 years old. She could barely eat and lost 5 lbs. very quickly. Her mom knew something was wrong, she says, "because I stopped eating dessert."

Grossman was diagnosed with Crohn's Disease, an inflammatory bowel disease that causes chronic inflammation of the gastrointestinal tract, according to the Crohn's and Colitis Foundation. After her official diagnosis at age 9, she was stable for several years and managed her illness through medication and a strict diet.

"At the age of 11, I came down with a stomach bug that triggered my disease, and that's kind of what started my downward spiral," says Grossman, who runs a digital marketing firm. "I never recovered, so my pain got worse. I started bleeding. I couldn't sleep at night and could barely go to school. Between the ages of 11 to 13 I, I basically lived at the Hospital for Sick Children in Toronto."

Jessica Grossman is raising ostomy awareness
Tyler Bowditch. MUA, Jenine Seetner For Uncover Ostomy

But no matter what, she wouldn't get better. She was on cancer drugs and steroids, which made her gain a lot of weight very quickly. "I had a moon face," she says, adding that it was a difficult ordeal for an adolescent.

"I was literally shopping for my Bat Mitzvah dress while I was in the hospital, like, I had a permanent IV in my arm and they had to cap it off so I could go to a mall for a couple hours to find a dress," she says. Three days after her Bat Mitzvah, the pain was so severe that she was readmitted to the hospital and fed only through an IV.

"My life was just this haze of pain and narcotics and I wasn't going to school," she says. "I was in and out of consciousness and I didn't even know people were coming to visit me."

Then in January of 2003, a surgeon came and said that she had toxic megacolon, a rare, life-threatening complication of severe colon disease or infection. It was then that she made the decision to have the operation.

Several days later doctors removed her colon and six feet of her large intestine and gave her an ostomy bag. "I very quickly realized that this was my only option and so I might as well make the most of it," she says. "I think I had the benefit of being really young and not knowing much else."

Soon enough, Grossman became comfortable talking about her ostomy with her peers. In high school she found new confidence. "I got a job and made new friends, and no one cared that I had an ostomy. I dated a guy there, and he didn't care that I had an ostomy. I went to university and became president of my sorority. Again, the ostomy didn't cause any issues. Everyone knew about it. I was actually featured on the cover of the student newspaper talking about my ostomy.

"It was just a part of me," she explains. "All the other things in my life were able to happen because I'm alive from it, but they weren't impacted by it."

It was never an impediment for her because she never viewed it as one.

Since then she has been speaking out about ostomy awareness and helping normalize ostomies. She started a popular blog in college. She picked up acting and modeling gigs. She created a non-profit Uncover Ostomy and runs its accompanying Instagram account.

In fact, Grossman was one of the first people on social media to be fully transparent about living with an ostomy and to show photos of it. She refused to hide it or be embarrassed. "If we don't talk about it, if we don't teach people, how are they going to know to then accept us for who we are?" she says.

Jessica Grossman is raising ostomy awareness
Tyler Bowditch. MUA, Jenine Seetner For Uncover Ostomy

These days, Grossman, who lives in Toronto with her husband, tries to pass along that wisdom by mentoring potential ostomy patients or people who have just had surgery.

"I try to share that if you approach your ostomy or any other disability as, 'Oh, I hate this about myself, it ruined my life,' and you come at it negatively, that's how other people are going to react because the don't know otherwise."

She notes that the patients who seem to have a tougher time getting used to life with an ostomy are not kids, but adults. "I was young enough to have not lived so much of my life for it to change, but it's tough for people who are older," she explains.

"There are quite a number of women who are 25 or 40 or 60 who are like, 'I'm divorced, I have to date again, how am I supposed to do this?' Or, 'I don't think my husband's going to accept me', or 'How can I wear the clothes I used to wear?' For them it's life-changing, but for me it was just a different path that I grew into."

Grossman is using her platform to help others understand that an ostomy doesn't prevent you from living, but allows you to live.

"I'm hoping that people stop defining themselves by an ostomy. It's not who you are, the girl with the bag — it's who you are because you have one."

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