My #GetYourBellyOut story: Charlotte

A few weeks after my 13th birthday in 1993 I started with what we thought was yet another tummy bug, but it began getting worse not better. My mum took me to the GP who also suggested it was a bug, but within days I had lost weight and began passing lots of blood. I was very weak and again was taken back to the GP, this time with a sample that my mum had collected and put onto his desk – the GP immediately called the hospital.

I was admitted to the children’s ward and put into an isolation room. Within a few days, following a colonoscopy I had a diagnosis of Ulcerative Colitis.

Whilst I was aware of the name of the illness, because my nan also had Ulcerative Colitis, I didn’t know anything else about it, except that she had a bag (that I’d never seen and in my head had pictured as a big rubber thing like a hot water bottle).

My Ulcerative Colitis was never well controlled and there were a limited number of medications to try so I spent much of my final school years in hospital with a tutor on the ward.

Surgery was always hanging over me and I just kept trying to delay the inevitable. During a colonoscopy when I was 21, they found a big polyp and because my dad had died of bowel cancer when I was 16, the Drs said it was time to operate – I was put on the waiting list.

During that time, I was admitted again with a very bad flare up and during another scope they found that my bowel was very narrow and going to perforate. I went on to have my surgery a pan proctocolectomy with ileostomy as an emergency procedure.

I immediately felt better than I had done for years, although obviously sore and it soon became second nature. I dealt with it so much better than I had expected although I didn’t talk about it or tell anyone until I hit my 30’s. It was then that I felt a little more comfortable about letting people know.

I went many years feeling pretty good with just the occasional blockage and being careful what I ate. That was until four years ago when I developed a peristomal hernia. It was very small and difficult to diagnose but was a pesky little thing kept landing me up in hospital several time a year for three or four times at a time.

In January of 2018 I started to get a sore next to my stoma that turned into a deep ulcer very quickly. I was prescribed antibiotics by my GP and already had a routine appointment booked with my consultant a few days later on my birthday. As soon as my consultant saw it, he disappeared to make a call and came back to inform me that I was being admitted for surgery.

I had a stoma refashion and hernia repair. The recovery from this was tough. My bladder was paralysed from surgery and I came home with a catheter for 6 weeks. My new stoma was awful, it leaked constantly and in just 3 days I went through nearly 60 bags. Thankfully, this eventually settled down after a couple of weeks and things started to improve…

Until July, when I was admitted with the most horrendous pain I have ever felt. I didn’t think I was going to make it. My surgeon sent me straight for CT scan as soon as he examined me. When I got back, there was a team of people waiting for me. I was told I would be going straight into to theatre. A nurse put an NG tube down, taking 8ltrs of fluid out of me, and did an arterial blood test before whisking me off.

I spent the night and following day in intensive care and was later taken to the high dependency unit. It turned out I had a strangulated hernia and incarcerated stoma. I didn’t know what this was at the time, but I kept being told by nurses and Drs that I had been extremely lucky. I stayed in for two weeks and then had care with the practice and district nurse.

I still have to take a lot of pain medication due to adhesions and internal scarring. I also have another parastomal hernia and a ventral hernia but they are being monitored, and my new stoma functions better.

I’m no longer concerned about talking about my bag or showing anyone and that’s thanks to #GetYourBellyOut