Living with IBD in the time of COVID-19
Published: May 18, 2020
Every year on May 19, the global IBD community comes together to #StepUp4IBD and raise awareness of Crohn’s disease and ulcerative colitis for World IBD Day. This day of observance usually involves video chats, patient stories, memes, and other ways to highlight these invisible illnesses. And while some of that is still part of our observance this year, we wanted to highlight an even more pressing issue – the impact that COVID-19 has had on IBD patients around the world.
There is no denying that COVID-19 has turned our world upside down. Whether you live in the United States or Brazil, England or Australia, the impact of the illness can be felt across all aspects of our lives. In the United States, we have been inside for weeks (some states longer than others), observing social distancing and stay-at-home orders. We are wearing masks out in public and engaging in good hand hygiene. We are missing out on celebrating birthdays, holidays, weddings, and other celebrations. We are attending school and working all from our homes. And sadly, some people are having to bury loved ones without the support of their friends and family.
For the IBD community, the pandemic has created an immense amount of concern. According to SECURE-IBD, an international pediatric and adult database that is monitoring and reporting on outcomes of COVID-19 in IBD patients, there have been 1,170 cases of COVID-19 in IBD patients reported as of May 18. And while the outcomes of these cases have been largely positive, there is still a lot of fear and uncertainty among patients. We’ve received a lot of questions from patients and caregivers about the impact COVID-19 could have on one’s disease; whether or not immune-suppressing medications put patients at greater risk; fears about going for infusions during this time; concerns about the toilet paper shortage; and much more.
We wanted to know what living with IBD during the pandemic has been like for patients around the world and what resources are available to help, so we reached out to our partner organizations and patients in Australia, Brazil, Canada, China, and the United Kingdom. What we learned is that IBD patients around the world are experiencing a lot of similar issues and emotions, including concerns about going for medication infusions, fears about the impact COVID-19 may have on their disease, and struggles with stress, anxiety, and depression. Click below to read what they shared with us.
While this has been a difficult few months, what we have been most struck by is the strength and resilience of the IBD community. We have seen, now more than ever, patients, caregivers, and professionals coming together to support each other. Whether its by participating in a social media chat or online support group, registering for our TAKE STEPS + VIRTUAL walk on June 20, participating in our virtual Day on the Hill activities, or much more, you have all been finding new ways to #StepUp4IBD and come together and show the world that IBD doesn’t stop, even during a pandemic.
Rebecca Kaplan is the Public Affairs and Social Media Manager for the Crohn's & Colitis Foundation and the caregiver of a Crohn's disease patient.