I was diagnosed in February 2019 at the age of 51 after doctors found an abscess on my small intestine. I was put on azathioprine daily which kept my symptoms under control until November 2022 when I experienced severe abdominal pain and ended up in A&E. My inflammation levels were sky-high, and my small intestine was narrowing because of the inflammation. I spent a year in and out of hospital being treated with antibiotics and steroids. I was losing a lot of weight and things were getting worse. It was at this point the doctors told me I needed to have surgery, so I was put on infliximab to try and control the inflammation so they could operate.
A year on, there was still no sign of surgery, I only weighed 65 kilograms, and I ended up in hospital again over Christmas.
I was discharged after Christmas but was rushed back in by ambulance on New Years Eve. The scans showed a full blockage, and I was told again that I needed to have surgery.
15 months later from the initial consultation to schedule the surgery, I went in for my infusion and told my IBD nurse that I couldn’t cope anymore. I was admitted for surgery, but I was too frail, and I had lost too much weight so the surgeons agreed that I needed to gain strength first. I was put on TPN because I had not been eating properly for months. Then, in May,18 months after being told I needed surgery, it finally happened, and I woke up with a stoma.
Unfortunately, that’s not the end of my struggles with waiting times. I was discharged later that month and told that I would have a follow up appointment 4 weeks later.
Four months on from my surgery, I still hadn’t had an appointment with the surgeon. I have been asking for regular blood tests so that I don’t end up going through something like this again. I’ve gained a little bit of weight but I’m still nowhere near 100%.
If I had been able to have the surgery in a timely way, things may have been different, I could have returned to work and been in a better position to manage my condition.
The last two years I feel like I have been through hell. My condition was not managed properly, and it would have made a huge difference if I had been diagnosed and had surgery sooner. I’m relieved that I have finally had surgery, but it has been a difficult journey.
It’s important that people don’t suffer in silence and make sure they tell their doctors and IBD teams their concerns. IBD teams care but the waiting times are so long, it’s difficult to get anything actioned so patients are getting worse while they wait. That’s why I was one of 34,000 to back the Cut the Wait campaign, and it’s why I’ll continue to support Crohn’s & Colitis UK to push for change so that people like me don’t have to wait so long for their diagnosis and care, and they can get back to their normal life and work quickly.
