Liz battled with ulcerative colitis symptoms for a decade before trying a new ulcerative colitis treatment in clinical trials—and she hasn’t looked back since.
An athlete and personal trainer, Liz is about as healthy as it gets. However, as many people with inflammatory bowel disease (IBD) already know, this “invisible disease” can manifest in anyone, regardless of lifestyle or other health factors. Liz came to us with a compelling story of her struggle with ulcerative colitis (UC) and the determination that led her to keep searching for IBD treatments until she found one that worked.
Ten years ago after a trip to the bathroom, Liz noticed bleeding and immediately contacted her family physician, who recommended her to a gastroenterologist (GI). Soon after, a colonoscopy confirmed Liz had ulcerative colitis. She was prescribed prednisone, a corticosteroid often prescribed for treating inflammatory conditions like IBD. It worked to an extent, but when she would wean off of prednisone, the bleeding would return.
Liz was referred to another GI, who put her on Remicade.
“It wasn’t great, but worked ‘enough’,” says Liz. She had bleeding ulcers throughout her large intestines, and Remicade reduced it to one large bleeding ulcer. She concluded that “this is simply as good as it’s going to get. This is how it will be forever”.
At this point, Liza was facing an uphill battle: sick every single day for seven years. She attempted steroid treatment, but all medications eventually failed.
“I felt like all of my medication options were relatively similar in the sense that I would get the same ‘so-so’ result, but potentially risk a bad reaction.” Liz recalls negative side effects of IBD treatments, such as periods of hair loss and rapid weight gain. “Fear can be a motivator, or some people are paralyzed by it”, Liz explains. And for a time, Liz was paralyzed by it.
While training a client, Liz had expressed that she’d had enough. Her client had close ties to the Crohn’s and Colitis Foundation of Canada and recommended her to Dr. Brian Bressler. Dr. Bressler kept her on Remicade and began optimizing her dosage. Liz and Dr. Bressler even added turmeric supplements to her diet.
They tweaked this regimen for two years, until Liz began to develop serious heart palpitations. Dr. Bressler made the decision to take her off Remicade. Having tried steroids, natural supplements, and anti-TNF therapy, Liz felt that she was running out of alternative UC treatment options. This is when she learned about a clinical trial for a new IBD treatment. This new ulcerative colitis therapy is currently in Phase 3 clinical trials.
After speaking with her doctors, she agreed to join the clinical trial. She admits that, at first, she was wary of the idea of participating in a clinical trial, concerned that she would feel like the guinea pig in a risky experiment. However, as Liz learned more about how it works, she learned that this new UC medication selectively targets certain pathways in the body’s immune response, instead of broadly affecting the immune system. To Liz, this new UC therapy seemed more strategic, more direct, and less likely to affect parts of her that weren’t sick.
In September of 2014, Liz was one of the first 50 people to join the 700-person trial. In December of 2017, Liz had a biopsy of the most inflamed area—what had been a large bleeding ulcer. She had assumed that there would be scar tissue due to the prolonged inflammation, but to her surprise, it had healed.
Liz’s experience says it all: “I feel as though I’ve never had the disease before.”
After nearly a decade, it looks like Liz has finally found an IBD treatment that works. As many UC patients search for their best UC treatment options, Liz offers advice from her personal experience:
“I think it’s really important for patients to hear and talk about how they can play a role in managing their disease. There is more than what’s given to you. It’s important for physical and mental health to have power.”
The key to Liz’s success? Ask questions, do your research, and find a doctor on the forefront of new therapies.
“Explore options and be optimistic about what you really want. I didn’t want to be sick anymore— if this trial hadn’t worked out so well, I would have tried another, and another, until I found a solution that worked.”
As each person's experience with IBD is different-- what works for some may not work for all. There are many new IBD clinical trials looking to be safer and more effective alternative to current on-the-market treatment options.