The 19th of May 2021 is World IBD day, a day to raise awareness of inflammatory bowel diseases like Crohn’s disease and ulcerative colitis. Because IBD is an invisible illness, the issues that sufferers face are often overlooked. Not to mention that because it’s a bowel disease, people are generally too embarrassed to talk about it.
This year’s theme, as set out by Crohn’s and Colitis UK, is ‘No Going Back’. It’s a hope for better understanding, awareness and acceptance of IBD. Most people can’t wait for things to go back to normal after the pandemic, but the old ‘normal’ isn’t good enough for IBD sufferers.
IBD is an 'invisible illness'; you can't necessarily see it on the outside, but inside they could be really struggling. Ulcerative Colitis causes inflammation in the large bowel, and Crohn’s causes inflammation anywhere in the digestive tract (that’s anywhere from mouth to anus). This inflammation can cause severe abdominal pain, loose, bloody or urgent poo, and severe fatigue. But IBD can also cause joint problems, eye issues and other skin conditions. As it’s an autoimmune condition (meaning the white blood cells of the immune system attack the body, thinking it’s an infection) this also puts people with IBD at risk of other autoimmune conditions like arthritis and thyroid issues. It also means that many of the treatments for IBD are immunosuppressants, which dampen down the immune system to stop it attacking the body, but also putting it at risk of other infections.
Because of IBD’s invisible nature, it can mean that people are less understanding when it comes to certain things that they need to make their lives easier. IBD sufferers are sometimes told they don’t look disabled enough to use accessible toilets, or that they look like they can walk too well for someone with a blue badge on their car. Workplaces and schools, colleges and universities don’t always understand the needs of IBD patients, especially when it comes to fatigue and sickness records. Some patients with severe IBD need to have a stoma (an opening on the abdomen connected to the digestive system to allow waste to be diverted out of the body) which brings its own set of special needs. Stoma patients may need additional toilet breaks, trips home to get changed if there’s been an issue, and some need to be on restrictive diets.
COVID-19 brought a new set of issues to IBD suffers. Many patients had to shield because of the immunosuppressant treatments they were on. This was be incredibly isolating, as it meant they couldn’t go to even the supermarket or for a walk in their local area! Some people felt they should have been shielded because they were immunosuppressed, but weren’t picked up on when the government’s system sent out the letters. These people still had to go to work in some cases, and put themselves at risk of severe illness. Speaking of, being placed in a group called ‘those at risk of serious illness due to coronavirus’ was extremely anxiety-inducing for many. When the world seemed to be saying things like ‘why should I bother? I’m not likely to die’, immunosuppressed IBD sufferers felt like screaming at them ‘bother for me, because I am likely to die if I catch COVID’.
But COVID-19 has also improved certain aspects. Awareness of immunocompromised people has been raised, and people are a lot more wary of visiting vulnerable people if they have any kind of infection. Infections in many immunosuppressed people have reduced due to less face-to-face contact, increased hand washing and home working policies, which is something that would benefit the community massively if people continued post-COVID. Businesses are a lot more receptive to home working now, which is something that could improve the quality of life for IBD sufferers and many other chronically ill people. So whilst COVID-19 is something we don’t want to stay, the attitudes and hygiene practices are something that we should keep!