Turning my Crohn's journey into positive change for others - Caroline's story

On paper, I'm one of "the lucky ones".

I still have my bowel, I've never been admitted as an IBD inpatient, I've had some periods of remission and my current medication plan is working relatively well. However, a patient's chart rarely tells the whole story...

In 2009, I was 33 and the mum of a 5 year old, when I was diagnosed with Crohn's Disease. Getting my diagnosis took many months, it felt like I had food poisoning constantly. I was exhausted, in pain, depressed, anxious, and frustrated. It felt like doctors weren't recognising how ill I was. I was referred for an endoscopy after some time and I was diagnosed with Crohn's Disease. Despite the diagnosis, the initial medications I was prescribed weren't helping. In frustration, I desperately searched internet rabbit-holes, trying various dietary restriction plans, supplements, and even "snake oils". 

Just a few months into her first year at school, we had a meeting with my daughter's teacher to discuss her development of the condition, "selective mutism". I sat sobbing with guilt, given that she was often in front of the TV while I couldn't leave the bathroom or bed. We decided not to have any more children, as I needed all my energy for my daughter.

From the time of my Crohn's diagnosis, I experienced back pain. During a particularly bad flare-up, I fought for investigations which discovered that I had Ankylosing Spondylitis (also known as Axial Spondyloarthritis or AxSpA) which is an inflammatory disease of the spine and uveitis, an inflammatory eye condition. Both conditions are known as "extra intestinal manifestations", or EIMs, of IBD. I felt really frustrated that, despite up to half of IBD patients experiencing EIMs, it took such severe flare-ups for the "dots to be joined up". My spinal MRI also showed historical bone erosion, suggesting that my AxSpA diagnosis had been delayed.

Thankfully, in more recent years, I'm doing much better due to a biologic immunosuppression treatment, which appears to be managing all 3 of my conditions relatively well. I felt daunted about trying such a serious treatment but, in hindsight, I wish I had been less afraid of trying further medication as it has really helped me.

Crohn's is so much more than "just" a disease of the bowel and it has, over the years, impacted my health, my relationships, my career, my mental wellbeing, and my family. I have often felt a frustrating lack of control and disempowerment due to my Crohn's, but also by the response to my IBD within healthcare and the stigma and lack of awareness in wider society too.

Initially I got involved in some of Crohn's & Colitis UK's campaigns to drive local action. I managed to convince the management of my local shopping centre to change all its disabled toilet signage to "Not Every Disability is Visible" signs. After some difficult experiences in my previous job because of the lack of reasonable adjustments, I advocated for company-wide improvements in policy, management and training using the "Are You IN" campaign.

Over the last 4 years, joining peer support groups to chat about my Crohn's and AxSpA has made a huge difference. Connecting with others who "just get it" and sharing learnings has helped me tremendously to advocate for myself and others. This experience has driven me to take on multiple peer support and patient representative roles. With Crohn's & Colitis UK, I've hosted nationwide virtual social events, become a lived experience representative on their Research Strategy and Funding Committee, helping shape the charity's research planning, and I'm supporting the policy and campaigns teams, attending as a longstanding guest at the Scottish Parliament's IBD Cross Party Group, and presenting to a variety of healthcare professionals and medical students to support their learning.

I've been touched by every interaction with fellow patients and felt privileged to facilitate connections, motivating me even more in my patient representative roles.

My lived experience has also opened wider opportunities within the IBD world. I became a volunteer patient advisor with the IBD Bioresource, which is the world's largest IBD data research hub. It's been so inspiring to see the groundbreaking and exciting IBD research coming through! I was asked to be a patient representative in the British Society of Gastroenterology's review of the Cancer Surveillance Guidelines in IBD, and to be a lived experience member of IBD UK's working group, reviewing the IBD Standards. More recently I have also been involved in the implementation phase of the National Primary Care Diagnostic Pathway for Lower GI Symptoms.

Throughout every one of these opportunities, I've focussed on constructively challenging healthcare to "move the dial" in improved access, communication, personalised care, and experiences for people living with Crohn's and Colitis.

Overall it's been clear that championing patient voice and actively getting involved in so many areas to support Crohn's & Colitis UK has not only helped other people, but really benefitted my own health journey too as well as giving me a huge sense of purpose. My Crohn's doesn't define me, and I'm really proud that I've been able to support other people to thrive.