Life after diagnosis: From patient to powerhouse fundraiser

Following her return home, Stacey came down with digestive symptoms but wrote her experiences off as a result of the trip. Months later, she went to see her doctor for a rash that had appeared all over her legs. Her doctor asked if anything else was bothering her. She mentioned that she was still having digestive issues and was struggling to comfortably eat anything. The rash plus digestive challenges triggered further testing right away, and following bloodwork and a colonoscopy, she was diagnosed with Crohn’s disease.

“Following my diagnosis, I had a difficult time getting control of the disease,” says Stacey. “I had adverse reactions to most of the medications that were available back then.” Two years after her diagnosis, Stacey began her first teaching job. “It was eight days into my first year of teaching, I remember it so vividly. I was really not feeling well and wound up in the hospital for more than a month. While I was in the hospital, I got worse quite quickly, and my bowel perforated. The good news, if there can be any in that scenario, is that I was already in the hospital so I could get the care I needed, immediately.” Sinai Health’s Dr. Helen MacRae performed emergency surgery on Stacey that resulted in an ileostomy, which she has lived with ever since.

Despite her intolerance to most of the commonly available Crohn’s disease medications, Stacey has remained quite healthy since her diagnosis. Having given birth to three children, she even managed her disease and its symptoms throughout the pregnancies. “I’ve been extremely lucky, but I’ve also had excellent support and excellent care from everyone at Mount Sinai Hospital,” she says.

In April 2021, during the heart of the COVID-19 pandemic, Stacey required another abdominal surgery. “It was a really hard time to be in the hospital. The pandemic was raging so no visitors were allowed in. Everyone was stressed. Elective surgeries were being cancelled. It was just a really difficult time both for patients and for the medical teams,” Stacey recalls. “Despite the challenges of the timing of my surgery, once again my quality of life drastically improved thanks to Dr. MacRae, Dr. Silverberg and the entire Sinai Health IBD team.”

Since her diagnosis 27 years ago, Stacey has become a passionate advocate for those living with Inflammatory Bowel Diseases, such as Crohn’s disease. “It’s a disease that people don’t love to talk about because they get embarrassed. But it can be so debilitating and so isolating, and as someone who has lived with it for more than half her life, I am happy to be able to share my story and show others that you can still live a full and meaningful life, and continue to pursue your dreams,” she states.

Stacey and her husband, Sinai Health Foundation Board member Jonathan Gitlin, eventually decided to take Stacey’s passion and channel it into fundraising for IBD research and care at Sinai Health. “We were talking about how indebted we feel to Sinai Health, and how IBD often doesn’t get enough philanthropic focus. So we decided we wanted to do some fundraising. But we weren’t sure exactly how that would manifest,” says Stacey. The couple are both committed to regular exercise, and often work out together. “We were at spin class early one morning, and I just casually mentioned to Jonathan that maybe we should do a spin fundraiser. I didn’t think much more of it. We went home, showered, and went to work. And then by 9 am, when I checked my email, Jonathan had sent emails to various people at Mount Sinai, and this was happening! The wheels were literally in motion for our first fundraiser.” Stacey recalls.

The inaugural Spin for Sinai event was held in 2019 and was a huge success. “To this day I am still overwhelmed by the amount of support and generosity that has been shown to us - and to Mount Sinai Hospital - as a result,” Stacey says. Forced by the pandemic to take a pause in 2020, this year marked the fourth anniversary of Spin for Sinai, and the third in-person event.

“We have plans for how we want to see the event grow. We want to keep fundraising and increasing awareness about IBD. We’d love to grow the number of participants,” Stacey says. “There’s just something so wonderful about the feeling of community, when you’re working hard together, celebrating, sweating, having fun, all while raising money and awareness for IBD. There’s nothing like it. I’m so grateful to everyone who participates for helping us make this important day a fun one. Since 2019 we’ve raised more than $1.5 million for IBD research and care at Sinai Health - and we’re deeply grateful to everyone who has helped make that happen.”

Sinai Health is truly at the forefront of IBD care and research, thanks to the Sinai Health Centre for Inflammatory Bowel Disease. It treats more than 5,200 patients each year and runs the world’s largest IBD Fellowship program, which allows us to attract and train the next generation of IBD specialists. With state-of-the-art new facilities the Centre for IBD houses new programs such as our Urgent Inflammatory Bowel Disease Clinic, designed to provide rapid follow-ups for patients experiencing flares, as well as rapid outpatient consultations for suspected IBD patients. It’s also home to the GEM (Genetics, Environmental and Microbial) Project, the largest global research project looking to uncover the possible triggers of Crohn’s disease. In 2022, it made waves with groundbreaking findings.

Stacey’s hopes for the future of people living with IBD are clear. “IBD does not have to be the defining factor in your life. The disease can be so debilitating but once your treatment regimen is established, you really can live again. You don’t have to limit yourself. I’d love to see the stigma around IBD shift and more people who are living with it realize that there’s no reason for embarrassment or shame. It’s a chronic disease that requires ongoing management, but people living with it can still achieve their goals and lead really full lives.”