Navigating a new normal – one that’s shaped by a global pandemic – requires adjustments from everyone, but people living with inflammatory bowel disease (IBD) can face additional risks and challenges.
Crohn’s disease and ulcerative colitis, the main forms of IBD, are chronic diseases where the body’s immune system attacks the bowel, causing a number of debilitating symptoms that can range from abdominal pain to diarrhea – as well as joint pains and rashes.
“When somebody is really sick with inflammatory bowel disease, they experience very painful symptoms that require them to stay close to a bathroom,” says Dr. Gil Kaplan, a gastroenterologist and professor of medicine at the University of Calgary, as well as the chair of the Scientific and Medical Advisory Council for Crohn’s and Colitis Canada. “So we use medications that suppress the immune system and get patients into remission. However, this has become much more complicated in the context of the pandemic.”
Since the immune system attacks the novel coronavirus that is causing COVID-19, patients with compromised immune systems or who take immunosuppressant drugs worry about their risks of exposure, explains Dr. Kaplan.
He has teamed up with pediatric gastroenterologist Dr. Eric Benchimol at The Hospital for Sick Children as well as infectious diseases and IBD experts and community leaders to explore the impact of COVID-19 on patients with IBD and compile a significant repository of guidelines and advice designed to “keep people safe and keep their disease under control.”
This task force was part of Crohn’s and Colitis Canada’s immediate response to questions and concerns from people living with IBD, their families and caregivers, says Kate Lee, vice-president, Research and Patient Programs, Crohn’s and Colitis Canada. “We launched regular webinars with content informed by requests and issues submitted by people affected by IBD.”
Since questions like “Are we at increased risk? What precautions should we take? How do we keep our loved ones safe?” were at the forefront of the minds of people living with IBD, the community eagerly embraced these resources.
“Crohn’s and Colitis Canada helped four times more people this year compared to 2019, and the number of over 58,000 viewers – who connect with us from Canada, the U.S. and countries around the world – grows every day,” says Dr. Lee. “This year, we will have delivered 30 webinars (compared to six in 2019) and 25 new/enhanced programs. And we saw 100,000 more visitors to our website at crohnsandcolitis.ca.”
In addition, people could sign up for regular updates by email and social media (@getgutsycanada).
From March 19 to June 25, the task force, organized by Crohn’s and Colitis Canada, held weekly meetings to discuss emerging challenges as well as new data from the global community. Weekly webinars provided updates and recommendations. Since September, these webinars have resumed on a monthly basis and will increase in frequency if the need arises.
Since the difference in quality of life between being in remission and experiencing a flare-up of Crohn’s or colitis is substantial, much discussion is focused on the drug regimens that keep patients stable. The task force’s early recommendations – to continue therapies that have proven effective – have now been validated by global research, reports Dr. Kaplan, who is also on the steering committee of an international consortium that developed a registry of individuals with IBD who tested positive for COVID-19.
“One of the contributions from my research team at the University of Calgary was to develop an interactive map that is updated weekly,” he says. “It shows the analysis of 2,700 COVID-19 positive IBD cases as of October.”
The research analyzes factors like a patient’s age and what medication he or she takes, says Dr. Kaplan. “From the data, we know that the chances of experiencing adverse outcomes, such as hospitalization or death, increase with advanced age and with taking high doses of prednisone, which are typically prescribed only when a patient experiences an IBD flare-up,” he explains. “When the symptoms associated with Crohn’s or colitis are under control with medication, such as anti-TNF therapies, patients generally experience a very benign course of COVID-19.”
Anti-TNF (or biologic) therapies are widely credited with improved rates of response and remission in patients with Crohn’s and colitis, and Dr. Kaplan recommends people continue with medications that have shown good outcomes. He adds that due to the coronavirus pandemic, government-mandated plans to switch patients from biologic to biosimilar medications are on pause until 2021 in most Canadian provinces.
In addition to providing strong messaging and guidelines for the IBD community, Dr. Kaplan says the task force used the webinar series to respond to patients' concerns, for example, about using public bathrooms.
“This is not a new challenge for the IBD community, since leaving home can be accompanied by anxiety of what to do when diarrhea strikes. And the GoHere campaign, aimed at making public bathrooms accessible, has yielded significant results,” he says. “But COVID-19 brought new questions, with people wondering whether it is safe to use public bathrooms.”
This panel discussion can be viewed online along with other webinars at crohnsandcolitis.ca/Support-for-You.
There has been a massive collective effort from the task force, volunteers, health-care providers, scientists and Crohn’s and Colitis Canada, says Dr. Kaplan. “It’s been all hands on deck to put this together to support vulnerable community members during these challenging times. It is inspiring.”
Produced by Randall Anthony Communications. The Globe’s editorial department was not involved in its creation.