Getting a permanent stoma was the best thing I’ve ever done.
For all my life, I’ve either had a stoma or wished I had one. I was born in 1968 with a birth defect called Hirschsprung Disease (HSCR). This is characterised by the absence of nerve cells in a segment of the bowel and was complicated by an overactive thyroid which had to be removed.
My parents were informed that 15 to 20% of people with the disease will end up having a stoma. Naturally, this wasn’t an outcome they wanted for me. It was a huge relief for them when the surgeons operated and gave me a temporary stoma. It wouldn’t be the last.
The perfect excuse to get out of P.E.
By the time I was 4 years old I was on to my second temporary stoma due to a fistula. Again, this was reversed, in time for school. Amazingly despite pooing myself more times than I care to remember and missing at least two days a week at home, I look back on my school days fondly. I made great friends and I do believe every cloud has a silver lining – mine was a get-out card every time I didn’t fancy P.E.!
The best reversal was getting my stoma back.
After school, I joined a youth training scheme. It should have been the start of my adult life and an exciting career. But it was impossible to learn any new skills when I was barely ever there.
I was in and out of work placements until one day in 1985, when I was 17 years old, I made a decision that was to affect the rest of my life.
I asked for a permanent Colostomy. It was the best decision I have ever made and in truth one of the easiest. I hadn’t been to the toilet in weeks and even electric shock treatment couldn’t jump start my bowel! Things couldn’t get any worse. Luckily for me, they got a lot, lot better.
Body and mind, as one.
I’ve always been a very positive person. But for the first 17 years of my life, my body had been holding back my mind. All the things I imagined myself doing had been put on hold by my bowel problems. Now, it was as though my body and mind were perfectly aligned.
I could work, socialise, travel, meet new people and get active. I could enjoy foods that I wouldn’t have dared try before. I could jump out of a plane – I never have – but I could!
Life was brilliant. And it would get even better the day I met my wife Suzanne.
and we had out daughter Jessica. Today, our family has grown to include two cats Alfie and Tommie and space for a sausage dog (yes, my wife had her way!) called Winnie.
Helping, sharing, volunteering.
My life changed for the better when I got my permanent Colostomy and I want to show other people how they too can live a full stoma life.
For the last 7 years, I’ve been helping out at Colostomy UK volunteering as a telephone counsellor, talking one-to-one with people about their stomas. I know not everyone sees their stoma in the same positive way that I do, but if I can share some of my tips and advice and help change someone’s life for the better, well that’s amazing.
Life with my stoma, 35 years and counting.
I’ve always been really open about my stoma, at work and in public places such as the beach. So, when I talk to people on the phone I’m more than happy to share my experiences and advice.
Find the bag for you:
Living with a stoma is all about confidence and you can get a lot of that from a good bag. I’ve always used ConvaTec. I’m pretty active, and I find that the more I sweat, the more the baseplate sticks which is fantastic. My bag has never leaked when I’ve been running or any other sports. I’ve ran marathons with no issues. I encourage people to go to an open day and find lots of different products to try until you find the right one for you. This is what I did and I am very happy with my products.
Whatever it is you enjoy doing, just get out there and do it. I love my sports. I run marathons, cycle, play football and cricket. You could say I like to keep busy! I can honestly say my stoma has never stopped me from doing what I want to do.
I have run marathons where I’ll change my bag at the side of the road and just throw it in the bin on the way round. When I play football, I always wear a belt for that extra bit of support, and it means nobody can grab on to my bag!
Just take it easy at first, build up gradually and listen to your body. That’s what I did and now I’m planning my first ever double Ironman!
I think there’s nothing more heart-breaking than speaking to people who’ve had stomas for years who are afraid to travel because they worry about having an accident or being too far from home.
I advise people to start slowly. Book into a hotel about 20 miles away. Pack a bed pad in your case if it gives you more confidence. Or ask for a disabled room.
Airports are really starting to me more stoma-sensitive now, but if you do get pulled to one side for a chat, you are within your rights to ask to go to a private room.
Of course, you don’t have to go abroad to travel. I love camping and going to music festivals. Never having to queue for a port-a-loo is bliss! You can even apply for disabled camping – you get toilets close by, nice big showers, plus it’s usually quieter and people are more tolerant as you have a disability.
Eat well and stay hydrated:
I once spoke to a gentleman on the phone whose diet consisted of biscuits. He simply hadn’t ever wanted to risk anything else. It was very sad, but luckily I was able to reach out to him and convince him to try other foods. The trick is to keep a food diary and make a note of what works for you and what doesn’t.
Personally, I eat pretty much everything in moderation. Curry, baked beans, garlic – so long as you’re prepared to empty your bag a bit more often, you’ll be fine.
Who you tell is up to you:
Everyone is different. I am completely open about my stoma and never try to hide it. Sometimes I actually want strangers to notice it and ask me about it, just so I can raise awareness. Equally, I have a very good friend who is much more private – even his mum doesn’t know!
Enjoy a good night’s sleep:
I always make sure my bag is empty before I go to bed, so there’s less chance it will balloon.
I once spoke to someone who told me that he dare not sleep in the same bed as his wife. I think this is a real shame as leaks can be avoided if you have the right bag and just take the right steps before you get into bed.
My top tips:
My top tip for anyone with a stoma, whether you’ve recently had surgery or you’re quite far down the line, is to just get out there and try not to worry about what other people think. People will always have opinions whether you’ve got a stoma or not.
I’d also tell people to try different products at the start, and don’t stop looking until you find the right one for you, and trust me, it will be out there somewhere. I’d also say to try and ease your way back into your old life, don’t rush, but definitely don’t hide away. There’s always a light at the end of the tunnel.
Best of luck,
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