“Taking part in research helps me feel like I’m contributing to a potential cure”

Please tell us a bit about your experiences during 2020

The beginning of 2020 was supposed to be my big break! I had planned and saved to go travelling across Japan, New Zealand, and Australia. My dream of becoming a nomad was getting closer, but the day before my flight was due to leave, the UK entered lockdown.

COVID-19 had devastated my plans, and stress and anxiety hit me hard. After a few emotional months, I began to feel my body changing. I started to get stomach cramps and then gradually my symptoms resembled extreme food poisoning. I was rushed to A&E and was diagnosed with Crohn’s Disease within two weeks. Whilst I was in hospital, my family had limited visitation times and there were many restrictions in place, which made me feel very alone and isolated. Although this was a challenging experience, my nurses, family, and friends provided me with unlimited support and love, which I am immensely grateful for.

After a year, I found a medication that worked for me (Ustekinumab) and adopted a plant-based diet. I decided I had to put my travel dreams on hold for a while and refocused on my career. I moved to Brighton, my favourite city in the UK, and got a job as a marketing assistant. A year on, I am thriving and understand my Crohn’s more and more each day. Crohn’s & Colitis UK were a crucial resource that helped me to understand more about my condition, medications, and methods to cope with my stress levels and anxiety.

How did you start getting involved in IBD research and what was it like?

As well as learning more about my Crohn’s, I also wanted to give back to the community. Taking part in research was at the top of my list. Whilst in hospital in 2020 I started on Infliximab. As a result, I was asked to participate in the CLARITY IBD study. This study was conducted to research the impact of COVID-19 on people with IBD taking immunosuppressants.

I also had to fill out forms updating the researchers on my symptoms, if I had caught COVID-19, whether my medications had changed, and more.

Now that my participation in the study has ended, I have agreed to continue to allow the CLARITY IBD researchers to access my medical records. My effort in this study was relatively small, yet the impact of the research is highly important. In 2020, COVID was a threat to many, especially those with a compromised immune system, which is the case for many people with Crohn’s and Colitis The results of this study will help inform future public health policy decisions for people with IBD and others on immunosuppressants.

What piece of advice would you give to IBD researchers?

Step into the community and listen to the experiences of individuals with IBD. Helping people with IBD understand how being a part of a research study can initiate great change will encourage more people to want to take part. Research is important for so many reasons, but most of all to bring about change in our community. Sometimes I feel low about having an incurable, lifelong condition, but taking part in research helps me to feel like I am contributing to a potential cure or improvement to future treatments. 

What are your plans for the future?

Although I am early in my journey of advocacy, I am hoping to take some bigger steps in the near future to raise awareness about Crohn’s and Colitis. I am keen to be a representative for individuals who may not feel confident in discussing their symptoms because of the weight of stigmas. I want to make a real change in the community and normalise discussion about stomas, passing blood, medications and more. I also plan to become a local network volunteer! You can follow me on Instagram @lucymcon where I share my experiences with Crohn’s, and there are a couple of podcasts in the pipeline, so watch this space!