It’s four years since I had my stoma operation, at Southmead Hospital in Bristol. Whenever I mention that I have a urostomy and explain what that means, people ask me how I knew there was a problem. I tell them that too many late-night visits to the toilet, coupled with discomfort and very little output, told me all was not well.
An additional factor was the uncontrollable urge to pee. This was highlighted on a ‘special trip’ to Venice, returning on the Orient Express. While walking around the Cannaregio district of the city with my wife Julie, I experienced two separate episodes where I couldn’t hold my pee in. At the age of 59, I had the embarrassment of wetting myself. Fortunately, Julie and I were on our way back to our hotel, so I could shower and change.
Ever since my diagnosis of bladder cancer, I have spoken to my male friends about the warning signs and in particular about not ignoring them; not that I did! I visited my GP and he referred me for investigations and treatment. It was scary to hear that I needed my bladder and prostate removed, but the operation went as well as could be expected.
I didn’t deal too well with the overall recovery though. Firstly, I hated the fact that I had a stoma and had to pee into a plastic bag. Secondly, with part of my bowel repurposed to form the stoma, my bowel went on strike. It was eleven days after the operation before it decided to return to work; not a great time for me!
Gradually, I started to feel better and settled into the routine of changing my bag first thing in the morning, every two days, with help from Julie.
Getting used to Stanley
For many months, I kept up regular appointments with my stoma nurses, as I couldn’t quite let go of the safety blanket they provided. And since those early days of living without a bladder and trying to get used to ‘Stanley the stoma’, there have been ups and downs. This is something I’m sure many people with a urostomy can relate to.
For me, it hasn’t been so much the daily maintenance of my urostomy or carrying supplies of stoma products, but more the mental side of having a stoma for life and getting used to a different way of living.
I can honestly say that without Julie by my side, plus the support I’ve received from my friends, my stoma nurses and other NHS professionals, my journey would have been tougher than it was.
Out and about
Like most ostomates, I’m always well equipped with stoma supplies whenever I go out. It gives me peace of mind to know I can change my bag, should the need arise. But fortunately, I haven’t had to do an emergency change for quite some time.
When I’m out and about I use disability toilets with the help of my radar key. I’d recommend getting one of these because being able to access disabled facilities usually means there’s more room, as well as greater privacy and, often, a better standard of cleanliness.
If anyone questions why you’re using a disabled toilet, don’t be afraid to tell them about your urostomy. I’m upfront with people about the fact that I live with a stoma. It may be a hidden ‘condition’ but there should be no shame or embarrassment about being someone who has to pee differently.
Walking football
Prior to my stoma surgery, I had been playing walking football; really that is football as we know it, but with running not allowed and heading the ball discouraged. Designed for the over 50s, it’s mostly played by men, but women also take part, and there are even mixed matches.
The sport is quite competitive, and regional leagues exist for those who want to play against other like-minded teams. I have been fortunate to play walking football for the past five years and won my first league medal for Clevedon Town over 60s. Initially, following surgery, I didn’t know if I would be able to resume playing, apprehensive that having a stoma would be incompatible with taking part. However, I have continued to play and can recommend the sport as an excellent option for fitness and for social reasons too.
Fortunately, I have the confidence to talk about my stoma and even display my urostomy bag when showering after a game. And I’m not the only local ostomate who loves pulling on their boots for a match – the photo above shows me with Gary from Clevedon Town FC and Derek, who plays for Keynsham Town FC. We’re proud to show what’s still possible living with a stoma.
Keep going
It can sometimes feel like a long road to travel when you’re learning to live with a urostomy, but in my experience, finding an activity you enjoy can make all the difference. And not just to how you feel about yourself but the world around you too.
I send my best wishes to you, whatever stage of your journey you’re at. Don’t be afraid to ask for support if you need it, and always try to get the best out of life.