Left to Cope Alone: My Experience of Why IBD Care Needs to Change

Better access to care, more specialist staff, and proper psychological support are things that would have completely changed my experience of living with Ulcerative Colitis.

I was a young university student, newly diagnosed with a lifelong condition. You'd think being given this news would be the hard part, but what I wasn't prepared for was being left to navigate it largely on my own.

It felt like I'd been told about this big thing that was about to change my life and that was that. With very little guidance or information about what it all meant. I had to do lots of research myself. I felt completely in the dark.

Contacting the IBD nurses was always such a struggle. I used to leave voicemail after voicemail, often in tears, desperately asking for some support and help. I remember lying on the bathroom floor, feeling completely helpless and desperately trying to speak to someone before the weekend. I was in complete panic because no one would be there over the weekend and then who would help me?

Call backs would take days, if they came at all. I found this extremely overwhelming and it caused my health anxiety to skyrocket. When I did finally manage to speak to someone, I felt frustrated because I had to keep repeating myself to different nurses. The support and advice never seemed personal to my needs. I kept calling because I had no other choice, but I just felt like I was being a pain and that I was never going to be able to manage my condition.

Between my diagnosis and December 2021 I'd been on a course of tablets, steroids, injections, and biologic infusions, but nothing seemed to work. That was when things escalated. 

Hearing that without it I might not have made it to the weekend, only a few days away, was terrifying.

I'll never forget the feeling of waking up with a stoma. I was scared, overwhelmed, and isolated; everything had changed. This massively impacted my mental health. As much as it was a physical change, it was a lot to process and wrap my head around. My future suddenly looked so different than it did before having my surgery. And there was very little care for my mental health, I was barely checked on when it came to my emotions and how I was feeling post-op.

After being discharged, the challenges didn't stop. I ended up back in hospital again, due to my stoma being the wrong size, which again knocked me for six. I felt like I was practically living at the hospital by this point.

Living with a stoma as a young adult brought its own challenges and it took a long time to come to terms with how this would change my life and for me to accept my new body and reality. I am very lucky as I have an incredible family who were there for me at the time, but not everyone has that.

Looking back, one of the most difficult parts of my journey wasn't just the illness itself, it was the gaps in care, especially after diagnosis and during flare-ups. Those are the moments when you feel most vulnerable, but they were the times I felt most alone.

I am incredibly grateful for the NHS and the care that ultimately saved my life. But my experience highlights where better care and processes are needed for people like me living with Inflammatory Bowel Disease.

I hope that sharing my story helps make change happen. That's why I'm supporting calls from Crohn's & Colitis UK for the next Welsh Government to improve both staffing for IBD services and access to specialist psychological support. Better staffing means better access to care, especially at critical times like during flares and after surgery. Those moments when support can't wait.

Because no one should be left lying on a bathroom floor, in pain and panic, wondering if anyone is going to call them back.