Living with IBD in the time of COVID-19

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.


According to Crohn's & Colitis Australia,

"It’s very difficult for IBD patients and any patients with chronic illnesses to deal with their chronic illness and then have something external super imposed like COVID-19 is. There is a lot of anxiety in the community and its only been intensified by additional issues, such as the scarcity of hygiene supplies and the lack of understanding about the impact of COVID-19 on people with IBD.

Some community pharmacies and hospitals are experiencing delays of a few days for delivery of some medications. The Australian government has restricted pharmacists to dispensing a one-month supply for some medications, as a precautionary measure. This includes some pain relief and gastrointestinal medications.

Temporary Medicare Benefits Schedule (MBS) and Department of Veterans’ Affairs items announced by the Australian Government are allowing doctors, nurses and mental health professionals to deliver services via telehealth during the COVID-19 crisis.  If people are still able to get periodic blood tests where they’re required and those results are available to their IBD carers, a lot of the routine care can be managed by telephone. It’s a bit different of course if people are sick with their IBD and they need to be physically seen to be examined, and in that case, they are going to have to travel and make themselves available to be examined and seen. But for the most part a lot of the routine care month-to-month can be managed in a virtual way. 

The Home Medicines Service is available for people in home isolation and for vulnerable patient groups who wish to limit their potential exposure to novel coronavirus (COVID-19) in the community. This service supports the use of home medicines delivery options available through pharmacies enabling patients to have their Pharmaceutical Benefits Scheme (PBS) and Repatriation Pharmaceutical Benefits Scheme (RPBS) prescriptions delivered to their home."


Associação Brasileira de Colite Ulcerativa e Doença de Crohn reports,

"There have been very few confirmed COVID-19 cases in IBD patients in Brazil. The few cases we do know of are doing well.

The primary challenges IBD patients are facing are related to fear of using medications currently, the potential of being at increased risk, potentially of getting COVID-19, the need to be hospitalized, the need to go to infusion clinics, fear to complete their exams, difficult finding remote work, and not being understood by their bosses.

To help patients, we are making materials available on our website that were created together with the Society for Rheumatology to respond to questions from patients. We also partnered with GEDIIB – Grupo de Estudos Doença Inflamatória Intestinal do Brasil who prepared materials and videos to help take care of their patients."


Rasheed Clarke, an IBD patient from Ontario, shared that,

"For patients in Canada, appointments with specialists, which can sometimes require months of waiting under normal circumstances, have been canceled, so important check-ups are being delayed. Tests like colonoscopies have been canceled, so patients waiting for a possible IBD diagnosis or an update on the condition are forced to wait, which could lead to an exacerbation of their symptoms.

There’s often talk about a ‘second wave’ of COVID-19 cases hitting the healthcare system, and with that comes concern that a portion of that second wave could comprise chronically ill patients who had their conditions deteriorate during the COVID-19 restrictions.

The ability to work from home, when available, is giving patients a chance to rest more now that their commute has been eliminated. And more time at home means more time to cook the kinds of foods that they tolerate well. 

In terms of support, friends and family are being asked to be extra vigilant when it comes to maintaining physical distance and staying home as much as possible. And the online IBD community continues to be a great place to go for understanding and a reminder that there are other people out there who understand what you are going through."


The China Crohn’s & Colitis Foundation (CCCF) shares that,

"In China, where the pandemic first began, IBD patients have been dealing with social distancing and wearing masks in public for months now. They’ve had to postpone elective surgeries and procedures and utilize telemedicine. Additionally, a mental health hotline has been created for patients to access during the COVID-19 outbreak. 

The CCCF has organized over 60 volunteers who are all IBD specialists to answer patient questions online. They have also published several articles on WeChat and their website with resources for patients. CCCF also held two live streaming discussions between doctors and patients about diet management and coping with the COVID-19 pandemic."

United Kingdom

Seb Tucknott, an IBD patient from the United Kingdom and founder of IBD Relief, says,

"As with most of the population, IBD patients have been very concerned about the impact of COVID-19 on their lives, also their risk of becoming very sick if catching the virus. This has resulted in a lot of fear and anxiety amongst the IBD community.

At the beginning of April, the UK government issued guidance for the most vulnerable people living with chronic illness in the UK. This group was advised to take "shielding" measures to reduce their risk of catching COVID-19. This included people with chronic illnesses taking immunosuppressant medications, which includes a large majority of IBD patients. Initially, with no clear guidance on who this applied to, there was a lot of confusion amongst people living with IBD as to which risk category they were in. 

The IBD centres across the UK worked together to develop guidance for IBD patients, published by the British Society of Gastroenterology (BSG) with the aim of reducing the number of IBD patients having to follow the very restrictive shielding measures unless absolutely necessary.

Unfortunately, as this advice was being circulated, the NHS sent text messages and letters to all patients taking immunosuppressants informing them that they were at the highest risk and instructing them to shield for 12 weeks. This was not in line with the bespoke IBD advice creating a lot of confusion for patients not knowing whether to trust the NHS advice or the BSG advice. For those patients having to shield for 12 weeks, it has been very difficult. Particularly affecting their mental health.

[Additionally, many IBD patients] are concerned that their IBD teams are already stretched, with team members moved into treating COVID-19 patients or having to self-isolate themselves. In addition to this patients are concerned about attending hospital with a fear of catching COVID-19 or putting additional strain on NHS resources."

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.