Pandemic Perspectives: Living with IBD during the COVID-19 pandemic
As I sit here self-isolating in preparation for a colonoscopy, I couldn’t help but reflect upon my experience of how my diagnosis of Ulcerative Colitis influenced my experience of the COVID-19 pandemic. Living with a chronic illness such as Inflammatory Bowel Disease (IBD) has many challenges. The long list of symptoms, endless hospital appointments, and the stigma of the stress-related illness can be a struggle at the best of times. But what happens when a global pandemic is thrown into the mix?
Well, as IBD is an autoimmune disease, one of the main types of medications used is immunosuppressant’s. Therefore, if you take immunosuppressant’s as I do, I was put in the ‘high risk’ category and was told to self-isolate for twelve weeks. Personally, this was extremely challenging as at the time I was doing a master’s degree, and the main way that I liked to destress was by going to the gym, yet this was no longer an option. In fact, as I lived in a city centre flat with no garden, going outside was no longer an option either. Unfortunately, because of the pandemic my placement and dissertation had to be changed at the last minute. I quickly began to feel very isolated from my family and friends and the stresses of a master’s degree were magnified due to the self-isolation. As you can imagine, this negatively impacted my mental wellbeing and I eventually reached out to my tutor at university, who put me in touch with the university well-being services. However, as IBD is a stress related illness, this also coincided with increased physical symptoms of UC that were slightly alarming.
Due to the pressure of COVID-19 on the NHS, I was unable to see a general practitioner in person and all of my face to face consultations with the gastroenterologist were cancelled. I couldn’t help but feel as though patients with existing illnesses had been put to the bottom of the list. However, I am also extremely lucky, that during this uncertain time I was still able to have the infusions for my UC at the hospital. I must admit, it is a strange feeling waiting for somebody to come out to my house to do a COVID test to ensure that I am safe to go to the hospital for a colonoscopy. Yet, I am just grateful that the NHS is now in a position where I am able to go to the hospital for a procedure, and that progress slowly but surely is being made. If COVID-19 taught the UK anything, it’s that the NHS is invaluable. But as a UC patient who has relied on the NHS consistently for treatment over the past six years, I already knew that.
Beth’s Experiences
After three and a half years of controlling my Crohn’s Disease via immune-suppressant and anti-inflammatory medication, a severe flare up proved too much to be successfully treated by medical therapies, and I found myself undergoing major surgery to make me better. There were a whole host of emotions that came along with this (mostly negative to begin with I will admit), but over time, the negative emotions have faded and are now vastly outweighed by the positives that have emerged because of surgery.
In the context of the Covid-19 pandemic, the fact I am no longer immune-suppressed meant I was not considered part of the vulnerable population required to shield for three months. This meant I was still able to walk my dog and go running around my local area even when the most severe lockdown measures were in place. Though simple pleasures, I did not take for granted the freedom I had to leave my house. I think this kind of appreciation is all the more salient for those who live with a chronic illness — you make the most of enjoying the time when you’re feeling well because you know how restrictive the alternative can be. Similarly, I think having Crohn’s Disease prepared me for the uncertainty of lockdown. While friends of mine worried about the next time they would be able to socialise, return to work and generally go about their daily lives, it almost felt like second nature to me to be in a phase where the life you live doesn’t resemble the life you wish you were living. Others became far more frustrated than I — they found the ambiguity overwhelming and almost pined for a sense of normality, something I am far more used to after years of countless hospital admissions, periods of illness, and those periods of recovery where you’re not quite back to your normal yet.
I feel I have been really lucky with my experience of the pandemic so far. I’ve remained physically well and also managed to deal with days when my mental health wasn’t at its best by being patient and kind with myself — another thing living with Crohn’s has taught me. However, I do become anxious and slightly neurotic at times regarding germs and hand washing. I was always very conscious of picking up infection due to my immune suppressants, so ensured I carried hand sanitizer on me and avoided touching hand ‘hot spots’ in public where possible. With the threat of a novel virus carrying unknown risks, my cleanliness behaviours went into overdrive to try and reduce the anxiety I felt at catching Covid-19. Again, I feel like this happened because of my experiences of ill health — I know what it feels like to be critically unwell and I never want to experience that again.
By Paige Karadag & Beth Morris
