Crohn’s and Colitis Awareness Month

Crystal McAfee and her youngest son on the morning of the 2021 Gutsy Walk, Crohn’s and Colitis Canada’s largest community fundraiser, one of the experiences McAfee documented @gutsystrong. Supplied

Advancing understanding and support for people with inflammatory bowel disease
Imagine life’s ups and downs representing cycles of debilitating pain alternating with periods of fragile stability – and this sequence running in an endless loop due to a chronic, incurable condition. “The Crohn’s carousel” is how Crystal McAfee describes her journey of living with Crohn’s disease, one of the main forms of inflammatory bowel disease (IBD) along with ulcerative colitis.

“Much like a ride on a carousel horse, you would go up during a period of remission and inevitably come back down when this is followed by a flareup with acute pain and symptoms,” says McAfee, whose own not-so-merry ride started over 25 years ago. “And you always go in a circle.”

With the aim to create awareness and offer support for others, she shares her story and volunteers with Crohn’s and Colitis Canada, the Canadian national charity dedicated to finding cures for Crohn’s disease and ulcerative colitis and to improving the lives of children and adults affected by these chronic diseases.

McAfee became ill when she was 10. Persistent symptoms like severe abdominal pain, cramping, diarrhea and fatigue resulted in repeat visits to pediatricians, who initially attributed her suffering to “being a nervous child,” she says. “I took school very seriously, and they said I was simply putting too much stress on myself.”

Other diagnoses followed over time, including irritable bowel syndrome and peptic ulcer, but when she took medication for the latter, her condition deteriorated. “I was in severe pain and couldn’t eat and drink. I lost 30 pounds in just three weeks,” says McAfee. “I was bleeding excessively and ended up in the hospital, where I had an emergency colonoscopy. That’s when I learned I had Crohn’s disease.”

Crohn’s disease is an autoimmune condition marked by chronic inflammation of the lining of the gastrointestinal tract. This interferes with the body’s ability to digest food, absorb nutrition and eliminate waste – symptoms that can make talking about the disease difficult, says McAfee. 

“There is a bit of embarrassment that comes with having IBD, and this can add to the social isolation you experience when you cannot fully participate in education, work and community during a flareup,” she notes. “That’s why it is important to raise awareness about these illnesses in order to decrease stigma.”

For McAfee, it made a big difference to find her community at Crohn’s and Colitis Canada, which has invested over $135-million in research since 1974 with the goal to find a cure. The organization has also “created a safe space where patients can come together and share their experiences,” she says. “It is a powerful feeling to be acknowledged and understood, and this has been a source of healing for me.”

McAfee considers herself lucky to have been able to complete her degree – after having to repeat her first year of university because she became severely ill – and finding a career where she had access to health-care coverage and paid time off, although she sometimes used her vacation days for dealing with health challenges. 

Her most treasured milestone was becoming a mother. “Since I had been severely ill in my youth and had undergone an experimental therapy at the time, I was told I wouldn’t be able to have children,” McAfee explains. “Having my children means the world to me. I’ve also been fortunate to find my way to a sustained remission through nutrition, stress management and weight training.” 

While training with weights was meant to address concerns about decreased bone density due to years of taking steroids, McAfee came away with a key insight, which inspired her to step up her engagement with Crohn’s and Colitis Canada.

“I realized that I was far stronger and more capable than I imagined,” she says. “I was a sick kid who became a sick adolescent and then a sick adult. I viewed the world through the lens of my illness. Looking back at that journey made me think of all the others who are facing a chronic illness. I know their fear, but I also know you can thrive with IBD.”

To view this report on The Globe's website, visit globeandmail.com

To view the full report as it appeared in The Globe's print edition: Crohn’s and Colitis Awareness Month