Our guest blogger, Shane, has recently had his second planned surgery for a stoma reversal and hernia repair. He shares his advice for other ostomates after years of waiting for this life-changing operation.
“I couldn’t face thinking about it”
It all began back in 2017. I was going through a divorce and was incredibly stressed. I’d had these pains on and off but couldn’t understand why. I even started to keep a food journal to see if it was something I was eating. Then one day, as I was driving back from my children’s school, I felt the most excruciating pain. Within hours, I was in hospital having emergency stoma surgery for a perforated bowel due to diverticulitis. I felt lucky to be alive as the surgeon said I was only 2 hours away from death.
It all happened in a blur. I woke up with a stoma and didn’t know what it was. I’d never even heard of a stoma before. I couldn’t face thinking about anything from the waist down, but I had to learn to change my bag before I was allowed home. My consultant told me I could have a reversal in 12 weeks, but we waited until 16 weeks so my body could recover. I hated my stoma and couldn’t wait for it to be gone.
“It was a shock to wake up with a stoma again”
When I went in to have my reversal procedure, they found a sigmoid mass which was attached to my bladder. As they tried to remove it my bladder was damaged, and I had a loop ileostomy formed. It was a real shock to wake up with a stoma again. I suddenly had to start doing loads of research on social media to understand what I was dealing with. I hadn’t bothered before, but this time I knew I was going to have to learn to live with it.
I was still talking to my consultant about reversals, but I decided not to rush it. Then, at the beginning of 2018 I started to feel unwell. Blood tests revealed I had Type 2 diabetes which was an indication of the strain on my body. This was the beginning of a series of challenges, including being made redundant, that forced my reversal to be put back on hold again. The consultant was happy with the way my ileostomy was working and I decided to concentrate on beating my diabetes through diet and exercise.
“One of the hardest decisions I’ve ever made”
In 2019, my diabetes went into remission, but my consultant noticed a bulge above my stoma. It turned out to be a parastomal hernia. I got some support wear and just got on with it. Fast-forward a year to April 2020 and I was finally due to have my reversal again, but the Covid lockdown meant it was cancelled. By this point my hernia was really growing and I had to make a decision. I could live with my stoma. I had no skin issues and had found products that worked, but I knew my hernia wouldn’t stop growing. It was one of the hardest decisions I’ve ever had to make but eventually I decided to have both the reversal surgery and hernia repair done at the same time.
Going into surgery again felt very different. I was really anxious and didn’t think I would make it out alive. I’d spent too much time on social media worrying about what might happen. As it turned out the operation was a success. I could soon go to the toilet normally within a couple of days and, after recovering from severe bruising, I was out of hospital in six days.
“I have a completely different outlook on life”
What I’d say to anyone considering reversal surgery is make sure you find people who’ve gone through the same process. Lots of people have reversals but they have all had stoma surgery for different reasons – Crohn’s disease, colitis, cancer – and that can affect the outcome. I’d say the biggest thing is to find out how much of your bowel has been removed as the less storage room you have inside the quicker contents come out! Just remember, everyone has a unique story to tell and what has happened to someone else won’t necessarily happen to you. Overall, I just try to see the positives and have a bit of a laugh.
This whole experience has changed me as a person. Before, I was very driven by work. Now, I have a different outlook on life. I have more empathy towards other people. I still want the best for my family and give 100% at work, but money isn’t a big thing to me and if things don’t work out how I expect them to, I’m OK with that.
I want what happened to me to help other people. I recently set up a swimming session as part of my Stoma Heroes support group and a fella turned up who’s just had surgery. He had a fantastic time and it’s helped his ability to move forward. Just changing that one person’s state of mind made the session worthwhile and, even though I no longer have my stoma I’m looking forward to helping more ostomates to cope better too.
About the author: Shane is the founder of the support group Stoma Heroes and lives with his partner and children in Yeovil, Somerset. We will always do everything we can to help ostomates share their stories. If you’d like to become one of our guest bloggers, please get in touch.