Taylor Morganstein was diagnosed with severe Crohn’s disease in 2021, a condition that has taken over much of her life.
Crohn's and colitis are both forms of inflammatory bowel disease (IBD), which essentially causes inflammation in the GI tract and can affect the entire system from digestion to elimination, causing intense pain, diarrhea, ulcers, fistulas and a host of other complications.
Some 300,000 Canadians live with Crohn’s and Colitis and the annual Gutsy Walk, in support of Crohn’s and Colitis Canada, helps raise IBD awareness, raise funds for lifesaving research, and allow patients to strengthen community bonds, with a mission to find a cure for these diseases while improving lives in the process.
The 23-year-old NDG resident is the Local Honorary Chair for the Montreal Gutsy Walk, the organization’s largest fundraising event of the year taking place on June 5.
Morganstein had a hectic disease course. “It so personally affects every single day of my life,” she told The Suburban, from planning all meals and outings, knowing where the closest bathroom will be, and if she's around people she trusts in case anything goes awry, from just feeling poorly to dehydration and more.
As the disease gets worse, she says, people can experience a grieving process. “You used to be independent and now you may need someone to help take care of you, and you’re grieving the body you once thought was so strong and untouchable and it will get worse.” Even though medications can help the condition, it also affects your body in other ways, “so it's helping me stay alive but taking away who I really was.”
The nature of IBD is that patients can go through periods of flare-ups but can technically go into remission. If the meds aren’t working however, there are no curative actions apart from removing the intestine. She herself had a bowel resection removing part of her small intestine that wasn't responding to treatment, but the Crohn's can still pop up anywhere at anytime.
And yet, starting medical school this fall and having just completed a bachelor’s in science when diagnosed, she considers herself one of the lucky ones. “I was lucky to be diagnosed during the pandemic, when the disease was at its worst, I was home all the time.” (For Crohn's sufferers it's a familiar concept of going to the bathroom 20 times a day.) “Because of my medical literacy I very much understood the disease and it helped me a lot. It didn't feel like a mystery and I'm very grateful for that.”
But for most of the 300,000 Canadian living with IBD – and 30,000 Montrealers – she says research and support are key. “Coming to terms with it, having people to talk with is a huge thing,” she says. “It helps us stay together, to be positive and to create community,” whether in person, by group chat or on different platforms like Reddit.
Crohn's and Colitis Canada funds research “and with IBD research is so important since they really don't know what causes it yet.” Some research investigates treatment and medications “and a great example is that the meds that I was most recently on have only been available since 2016. Who knows where my disease would be if I didn't have access to that?”
The main medications are biologics, proteins injected into the body specifically targeting certain inflammatory cells, but the immune system is very complicated and there are so many different immune cells at play that different classes of meds are required. “There's no catch-all,” she says, hence the importance for discovering new ones.
The Gutsy Walk takes place in some 30 locations across Canada. In Montreal it’s happening around Parc Laurier in Plateau Mont-Royal, with an official ceremony, different speakers, scavenger hunt, raffles and Zumba, yoga and photography activities, ending with lunch for everyone. Registration opens at 10 a.m. on-site and parking is available nearby.
Get Gutsy and take a walk on June 5. Visit gutsywalk.ca to donate or learn more and check out the Taylor’s 'Testines team page.