"I'm grateful for my stoma, it gave me my life back." - Frazer's story

Despite these difficulties, the consultant was able to establish that it was indeed Colitis and I was referred back to the local NHS service. That’s when everything slowed down: I was still losing blood and I knew what was wrong, but I had to wait a long time for anything to be done about it.

After a few months, I became increasingly unwell, and I felt like I was just constantly in and out of A&E. Eventually I ended up being admitted to hospital where I stayed for three months. By this point I was going to the toilet around 20 times a day and I remember that’s when I started having conversations about surgery.

However, the surgeons couldn’t agree on whether or not to operate: one wanted to go ahead with the surgery, but another was not at all on board. I was told that I was too ill for surgery and too young for a stoma. I just felt helpless and like I was back to square one. I found myself wondering why the experts weren’t on the same page about this?

After transferring to a new hospital, I tried various treatments including adalimumab and methylprednisolone. I remember taking morphine for pain management too. At one point I ended up with a rash that spread across my body and joint swelling that left me unable to walk. After what felt like forever, I finally received my letter detailing the date of my surgery – little did I know that it would change my life forever.

In June 2017, I underwent an eight-hour operation to create a stoma, followed by three hours in recovery.

The surgery was a complete success, but the immediate post-operative period was extremely difficult. Not only was this very much a physical change for me, but it equally affected my mental health too – I felt like I’d been in and out of hospital for months resulting in me losing my identity.

I taught myself how to manage my stoma bag independently. I did this by watching YouTube videos to teach myself the process, as well as receiving help from the IBD nurses. After six days in hospital, I was discharged – however, I did have two more operations ahead of me.

During this time, I remember that my IBD team was a pivotal part of my recovery, they were amazing. It was so reassuring to have help around me, especially at what felt like an extremely isolating time.

It’s worth mentioning, that shortly after my stoma surgery, I was out in public and decided to use an accessible toilet, which came with commentary from a stranger straight away: expressing their concern that I ‘didn’t look disabled’. I then proceeded to show them my stoma, and walked off. This incident felt like a kick in the teeth for me.

In the end I had three operations, the second of which was the most intense and complex. It was a lot to get my head around and a huge adjustment.

Now I’m out the other side, I want to try and help others in the same position as I was. I decided to create my own app designed to help people find toilets when out in public. It’s been a real passion project for me. The main aim for creating the app was to encourage people with Crohn’s and Colitis to become more confident when out in public, easing that all-too-familiar anxiety around finding a loo quickly and easily in a new place. The app has come such a long way in such a short amount of time, and we’re only just getting started! We've now got thousands of toilets mapped across the UK, with more being added regularly. We’ve included details such as: accessibility information, opening times and user ratings. I’m extremely proud of what the app has achieved thus far.

In terms of health, my condition is relatively manageable now. My stoma saved my life. I have had a few experiences of pouchitis, which has always been dealt with and hasn’t caused me too many issues. But other than that, it’s been pretty stable – which is ironic, considering it wasn’t for such a long time.