Coming to terms with my body after my stoma - Fionn's Story

I started to experience symptoms when I was about 13 years old. I had an upset tummy and had to keep running to the toilet, where I would often spot blood in my poo. Not only that, I lost a lot of weight very quickly, which was what my family first noticed.

I hoped the symptoms would go away, but they didn’t. When I could no longer take the pain, I visited my local GP with my parents, hoping for some answers.

From what I remember, it took a little while to actually receive the diagnosis from my doctor. I was initially told it was ‘just IBS’, so that delayed further testing. I remember going for many colonoscopies, endoscopies, MRI scans and having lots of blood work done, to try and figure out what was going on. I was only very young so it was quite overwhelming at the time.

However, after what felt like forever, and many tests and hospital trips later, I was finally diagnosed with Crohn’s Disease aged just 15.

This wasn’t the first time I’d heard of Inflammatory Bowel Disease, as my Grandma had been diagnosed with Colitis when she was younger, so it was something that I was relatively familiar with. Watching her live with the condition meant I had an idea of how tough it could be.

I am now 31, and I have had quite the journey with my Crohn’s. Since my diagnosis, I’ve had many operations, meaning that I’ve spent a significant amount of time in hospital, due to repeated flare-ups. Not only that, I’ve tried lots of different medicines in order to figure out the right treatment plan for me. 

In May 2023, when my symptoms took a turn for the worst, I remember waking up one morning practically unable to move. I was in more pain than ever before. Nobody had a clue what was going on, so I ended up making the trip to A&E after being told it was a 6 hour wait for an ambulance. Scans showed that my bowel had completely perforated, and that I had peritonitis, so I was rushed in for emergency surgery. When I woke up from the operation I was told if I had left this any longer, I could have been minutes away from death.

It was a very scary time for me and my family, as everything happened so quickly. I knew something was wrong, but I hadn’t mentally prepared myself for another operation – especially knowing so little at the time about the severity of what was happening to my body.

I remember waking up from my operation, and being told that the surgery had gone well. And after five weeks in hospital, I returned home, and was reunited with my daughter.
Unfortunately after 2 weeks at home I experienced symptoms of an infection so was rushed back in to hospital to receive treatment for sepsis.

Once I was treated for my sepsis, and back home I spent 6 weeks on a liquid diet, however I had developed a fistula and was rushed back into surgery again. I know that in some cases these things aren’t linked, but I felt that everything hit me at once – it was a lot to deal with.

I’ve now had a stoma fitted and if I’m honest, I’m still coming to terms with the way my body is now.

It’s really been a rollercoaster of emotions for me, as well as the people who love me.

Mentally, going through another operation - and coming to terms with having a stoma - has been quite difficult. It’s a lot having to get my head around how my body looks now. It’s very much a mental thing as well as a physical thing.

However, I will continue to be positive for my daughter, and I think it’s important to show others that you can still live a happy, fulfilled life, even with some obstacles thrown your way. It’s definitely a journey, and not an overnight fix.

I want other people with Inflammatory Bowel Disease to know that it’s completely fine to have down days – they are what make the good days so much better.