My stoma story has really only just begun. But if there’s one thing Covid-19 has taught us all, it’s that life can unravel fast. It certainly did for me.
My story starts in March 2019. I’d been suffering for a while with what I thought was the Flu. After 3 weeks, instead of getting better, my health was deteriorating. I went to A&E where they found I had a deep-seated stomach infection and liver abscess. Little did I know then that the abscess would possibly save my life. I needed a colonoscopy and that’s when they discovered a cancerous tumour.
It was a massive shock when I heard the specialists discussing the C word. I’d opted for no anaesthetic, so I was well aware of what was being said as I lay on the hospital bed with a camera up my rear. Telling my wife was probably the hardest thing I’ve ever had to do.
On 30th July 2019 I had surgery to remove the tumour.
The surgery seemingly went well. As part of my care plan, I then started a course of chemotherapy. It was around a month later in September 2019 that I started getting severe IBS symptoms. I couldn’t do a poo and I was soon being sick every time I ate. I was told it was a nasty side-effect from the chemo and was prescribed IBS medication and laxatives to help. Of course, they didn’t help at all.
On Friday 7th February I went to have another course of chemo, but the nurses saw how ill I was. Again, I ended up in A&E where scans revealed that scar tissue had caused a narrowing of the bowel from where the tumour was removed. All along for six months, I’d been suffering with a complication not a side effect.
I underwent emergency surgery the day after my 49th birthday on February 10th. Because my colon had narrowed so much, the surgeon explained that the only option open to me was to have an ileostomy. To be honest, I felt so unwell that I would have agreed to anything just to be free from pain.
There’s never a good time to have emergency surgery. But I could have timed it better than during a worldwide pandemic!
I’m pleased to say it was all worth it. I gained a stoma, but I lost all the pain that had been getting me down. Equally, I know not everyone sees their stoma so positively. When I was in the ward, I felt really sorry for a young 18 years old lad who was also due to have surgery.
Early on, I relied on the support of my wife. She’s a community healthcare assistant so she’s used to helping people with stomas. It wasn’t long before I was changing my own bag though and learning how to care for my ileostomy.
By the time I got home, the country was in Covid-19 lockdown. I was told I’d need to self isolate. I’m an active person, I’ve got a job I enjoy and four amazing grandkids who keep me busy. So, I don’t find it easy to do nothing. Luckily the spring weather was great, and I was also furloughed from work.
With time on my hands, I wanted a project. So, I built a tiki bar in the garden with bamboo screening! It was quite a lot of physical work, but it kept me occupied and I really enjoyed doing it. Happily, my stoma didn’t cause any issues. It was lovely relaxing in the summer with a San Miguel and a nice dry gin (not at the same time of course!).
I’m a naturally positive person who always looks on the bright side of life and I definitely thinks this helped. When you’ve got a stoma, mental wellbeing is every bit as important as your physical health.
The first thing I did was to get hands-on with my stoma. Learning how to care for it and change my bag. I sent for lots of bag samples to find the right one for me. There’s loads out there, so if anyone reading isn’t happy with theirs, I’d recommend trying out alternatives.
Since I had the IBS, I lost a lot of weight. But between the bar and my diet, I’m starting to get back to normal now! I can eat pretty much anything I want to. Initially, I avoided foods with a skin like tomatoes and peppers. But now I try little bits at a time, to see what works and what doesn’t. Other than that, it’s a balance between staying hydrated and knowing which foods thicken my output.
Unfortunately I was not allowed back into work due my cancer and I so I'm currently working from home as I am still classed as clinically extremely vulnerable. To top all this off, I was due to go into hospital on November 10th to have my bowel repaired but unluckily for me I managed to get COVID-19 and tested positive the day before 9th November.
I have since had that surgery on the 8th December but unfortunately the operation didn't go to plan due to the damage the scar tissue had caused to my large bowel.
This is more than likely looking like I will get to keep my bag for life stoma now and add another twist in my journey. I'm still not sure what the future holds with regards to my stoma, but I face it all with a positive attitude as normal.
Once we come out of this horrible pandemic, I’m looking forward to getting back to work, going on holiday with the family, playing with the grandkids and of course, spending more time in my bar!
I hope by sharing my story and experiences, I can help other people who have a stoma. Yes, I go to the toilet differently, but that’s a small price to pay for something that’s saved my life.
If you’ve been inspired by Mark’s story and would like us to pass a message on, simply email firstname.lastname@example.org or if you’d like to contribute your own stoma story, just get in touch the same way.
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