My story began in 2008, when I began to have bowel accidents and lose blood. After 6 traumatic months of keeping my symptoms a secret from everyone, I finally decided to visit my GP. After an examination, he diagnosed me with ulcerative colitis (UC), a type of inflammatory bowel disease (IBD). I had never heard of UC, but this diagnosis came as a massive relief, as I had convinced myself it was rectal cancer.
Speaking to 900 people in Copenhagen
Losing control
Over the next 5 years, I was taking all the usual medications for UC, including enemas, immunosuppressants and countless courses of high-dose steroids. I also developed a painful arthritis in my hips known as sacroiliitis. So, for this, I was having fortnightly biological adalimumab injections and chemotherapy medication. However, through this period, all this medication was keeping things sort of under control.
At the end of those first 5 years, the meds started failing me, and my illness took a turn for the worse. The next 2 years were horrific. I was having regular accidents, visiting the toilet up to 30 times a day, struggling to walk and losing so much blood. This condition was affecting all parts of my life, and my 25-year relationship was in tatters. I was barely existing.
This culminated in an extremely painful and emotional day at work. That day pushed me to contact my IBD consultant, who booked me into hospital, straight past A&E.
Steve as Mr October in the Purple Wings 2017 charity calendar
My fate decided
Once there, I was scoped. It turned out that the part of my bowel affected by the ulceration had spread from just 8 cm in my sigmoid colon to 85 cm further up. Other biological medications were mentioned, and I just broke down and sobbed like a baby. The surgeon there and then helped me decide my fate: I was to have my colon removed the next day.
I felt like a dark shadow had been lifted from me. Still, of course, I had my worries about the operation and living with a stoma. That night, I posted those worries with my story on an online IBD support page. I received hundreds of lovely messages back. After reading them, the next day, when I went in for a subtotal colectomy, the only thing I was still worried about was having the epidural pain-relief injection.
The operation went well, and I returned home a week later. A week after that, there was a really scary moment when I was rushed back to hospital that with an embolism on my lung from the surgery. At the time, I honestly thought it was curtains, but luckily it was resolved.
The start of Steve’s hernia journey (left) and after hernia repair (right)
Back home
After that, I returned home and soon moved out into my own place. Health-wise, I felt amazing; I had been given a new lease of life. However, mentally, I was having some troubles adjusting to my new body and body image. I had to get my confidence back, to get Steve back. Steve was a bit lost.
So, I found myself embracing many opportunities that came my way. I started being an active part of the ever-widening community of online IBD support groups. I’ve got up to a lot of stuff through these groups. I’ve taken part in countless talks, a bag change video and an IBD and ostomy talk show on YouTube. I’ve strutted my stuff for a catwalk show, an underwear shoot with Vanilla Blush and a calendar shoot for Purple Wings. I’ve even fought in a charity boxing match. With all this, my confidence came back with a vengeance.
Steve as the Vanilla Blush cover boy
Pop and tear
Then, one day, not long after having my flu jab, I had a coughing fit, and I felt my stoma pop and tear. My GP confirmed that I had developed a parastomal hernia. When a stoma is created, a piece of bowel is pulled through a small hole in the wall of muscle that holds your abdomen together. A parastomal hernia occurs when this muscle is torn and the hole gets wide enough for a loop of bowel to come through under the skin.
Fortunately, hernias can be repaired, although these repairs are not always successful in the long term. After quite a long wait, my repair operation went ahead, and it included removing my rectum. It was a long procedure, involving two surgeons working together, with one mending my hernia and the other doing a proctectomy.
My bottom healed within 5 weeks, which was fantastic. Whereas my open tummy wound took a lot longer, as it repeatedly became infected, and my staples kept popping out. Then, less than a month after the repair, I developed another hernia in the same area. What was worse, it was very painful, unsightly and growing at an alarming rate.
I was booked in for a second repair, but there were so many cancellations that I had to wait for over a year. This wait played havoc with my mental health. I started to get panic attacks. This felt crazy to me, as I had recently been doing talks on stage to 900 people with ease, but now I was shaking and hyperventilating in the supermarket!
I reached out to mental health services for help. Fortunately, I got help, and I was started on antidepressants. After a bit of a shaky few months, these did help, and eventually I had my second parastomal hernia repair. Fingers crossed that this lasts. To minimise the chance of a hernia happening again, I wear support garments every chance I get.
Steve recovering from surgery
Outward ambassador
Everyone’s stoma and surrounding (peristomal) skin are different. My stoma area has an outward bulging shape, which can make it hard to achieve a good fit with a traditional flat ostomy pouch.
Therefore, I recently trialled a new concave pouch, with the hope that it would better fit my body profile. It turned out to be an absolutely fantastic fit. I got on so well with it that I became like a poster boy for the manufacturer, and I became an official ambassador. My world became a bit of a whirlwind, appearing in promotional videos shot in London and Gran Canaria, as well as delivering talks and demonstrating bag changes in Copenhagen. Seeing my face on ostomy information leaflets was a surreal experience. Being an ambassador for a company supporting ostomates like me makes me very happy and proud.
Steve at Ultra White Collar Boxing
Lockdown goals
Over the past year and a half, during the various COVID-19 lockdowns, I had started putting on a lot of weight. I was certainly not the only person having this problem, including a few of the other lads from a group I’m in called ’The Bearded Brummies’. Eventually, we decided to turn things around and take part in a 6-week fat shred, where a personal trainer set us up with an individualised nutrition and exercise plan.
My mind was strong, and I happily worked my socks off. By the time I had completed the 6 weeks, I had lost 25 kg (4 stone).
That wasn’t quite the goal I had aimed to reach, but it is enough to know that I can get there. Through this experience, I’ve developed a much healthier relationship with food and exercise.
Steve’s 25 kg weight loss over lockdown
Be kind
I encourage everyone like me to be kind to themselves, as IBD is cruel enough, and who knows what the next episode of life has in store.
Steve Cartmail is an ostomy and IBD ambassador based in the West Midlands, England
