Crohn’s and Colitis Awareness Month
Matthew Sebastiani with his family at the 2019 Gutsy Walk, a national community event supporting Crohn’s and Colitis Canada (left), and at the infusion clinic receiving his new treatment (right). Supplied
Advancing understanding and support for people with inflammatory bowel disease
Until he was 18 and in his first year of university, Matthew Sebastiani knew little about inflammatory bowel disease (IBD) – there was no family history nor had the topic come to his attention.
Now, nearly a decade later, he is well versed in the subject matter. Sebastiani is living with ulcerative colitis, one of the main forms of IBD along with Crohn’s disease, and he also volunteers as the president of the Vancouver chapter of Crohn’s and Colitis Canada, the national charity dedicated to improving the lives of Canadians affected by these chronic diseases as well as finding cures.
“When I was diagnosed with ulcerative colitis, I was looking for answers,” says Sebastiani. “I soon realized there’s no known cause and no known cure – but there are medications that help patients cope with their symptoms.”
At the time of his diagnosis, he experienced the “massive flare-ups” that are the hallmark of IBD, he recalls. “I was sick for several months, and it took a few years – and trying several medications – to get to a state of remission.”
“Stability for people living with IBD is hard-earned, and ensuring management and control of debilitating disease symptoms is paramount.
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While medication has helped Sebastiani achieve a level of stability, frequent flare-ups remind him that the balance is a precarious one. “There are times when you’re feeling great and then there are periods when the disease is very active – it can be unpredictable,” he says, adding that the coronavirus pandemic has amplified this sense of uncertainty.
From the start of the pandemic, health information has been widely available for the general public. Yet Crohn’s and Colitis Canada recognized the need for specific advice related to COVID-19 for people living with IBD – and mustered a timely response, which included offering in-depth guidance on the organization’s website as well as a webinar series that discussed emerging issues.
“As Canadians grappled with the impact of the pandemic, those living with chronic diseases like Crohn’s or colitis had escalating fears,” says Kate Lee, vice-president, Research and Patient Programs, Crohn’s and Colitis Canada. “Stability for people living with IBD is hard-earned, and ensuring management and control of debilitating disease symptoms is paramount.”
Along with managing anxiety and stress, treatment forms an important element of managing these diseases, she adds. “Losing either physical or emotional stability can lead to a flare-up of the disease, which can mean debilitating symptoms, hospitalization, complications and more.”
Sebastiani, who started a new immunosuppressant medication delivered via infusion in early April, admits to experiencing uncertainty and even a touch of fear of going through this medical transition during the pandemic.
“Due to new protocols at infusion clinics, immunocompromised patients may be excluded from getting treatment if they have common cold symptoms, even if unrelated to COVID-19,” he says. “That’s why I’m being extra careful. And I would also like to urge Canadians to adhere to public health guidelines and wear a mask in public to protect those with weakened immune systems.”
Crohn’s and colitis are sometimes referred to as “invisible diseases” since they may not be obvious from a person’s appearance – and speaking about symptoms like stomach pain or bloody diarrhea can be embarrassing – yet the numbers are significant: one in 140 Canadians is diagnosed with IBD, and many young adults get diagnosed in their late teens or early 20s.
“Many people suffer in silence due to the social taboo that surrounds these diseases,” says Sebastiani. ”That’s why raising awareness and building community are really important.”
Yet at a time when the need for support has never been greater, fundraising has declined significantly, says Dr. Lee. “Outside of government, Crohn’s and Colitis Canada is the largest funder of IBD research in Canada, and we continue to drive forward with our mandate. While we focus on helping our community through this crisis today, we are also hopeful for the ongoing generosity of donors that allow us to continue providing critical programs, research and support to our vulnerable community.”
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