About the author
Roger Bowen understands how it feels to grow up being ‘different’. Now 69, he has lived with a urostomy since childhood. As Roger shares in this blog, he’s encouraged that there’s now more understanding and support for ostomates of all ages, helping them embrace life with greater confidence.
Roger’s story
Almost 60 years ago I was faced with the proposition of having surgery for a urinary diversion. I was just ten years old, so my parents made the decision for me and I’m glad they did. Having great family support made accepting the changes that an ileal loop conduit demanded much easier than it might otherwise have been. After all, the alternative was continued severe incontinence.
I had my operation in 1965 at Newport’s Royal Gwent Hospital and was fortunate that it was performed by a surgical genius, David Sturdy. Some surgeons achieve a rapport with their patients, and this was certainly so in my case. Mr Sturdy talked to me as he would to an adult and explained just what he planned to do for me. Being treated as an intelligent person meant a lot to ten-year-old me and helped me have confidence in the doctors involved in my care.
In the 1960s there was nothing like the information out there for patients today. Now, thanks to magazines like the UA’s Journal, people know they are not alone. In the early days after my operation, I was very self-conscious about my bag and hesitated to use a urinal in case anyone commented on it. It’s not usual to strike up conversations in the gents’.
I should not have worried as one day I found myself alongside a man who also sported a bag, which he was happy to talk about. We had a brief joke about the bags while I boasted that I had a bigger one than he had – well, I do have a leg bag!
It’s that old joke about when you’re young you worry about what others think of you; when you’re middle-aged you don’t care what they think, and when you get older you realise they were not thinking about you anyway!
Changing times
In recent times there has been a real change in the willingness of people to discuss stoma issues more openly, and I know stoma charities including the Urostomy Association have played a big part in raising awareness and encouraging better understanding.
In magazines and on social media, some ostomates appear with their bags visible – sometimes with ‘smart’ covers. And it was heart-warming to see Radio One DJ and ileostomate Adele Roberts perform on Dancing on Ice with her stoma nurse looking on.
I could not have been more pleased when my GP asked if I could speak to a lady who herself was facing urostomy surgery. Obviously, my help for her was given as a lay person but the lady was all the more grateful for that.
Those of us who have had successful stoma surgery can have a real role in reassuring those new to the stoma world. Sharing from our own experience and passing on tips helps make a difference to anyone who may be feeling anxious.
Other positives are the impressive range of products available to urostomates these days, along with more accessible information on all aspects of living with a urinary diversion. While one-to-one support from a stoma care nurse is invaluable, I know not everyone is fortunate enough to be able to access this easily, which means the Urostomy Association’s helpline, website and magazine are all the more needed.
I am now 69 and life is good. My partner Gwen and I have been together for 40 years, and we live in beautiful Blaenavon in South East Wales. We are owned by two cats and being retired gives me time to enjoy writing articles for magazines. I think it was my former stoma nurse, Lisa Leamon, who first told me about the UA’s Journal, and here I am sharing my story with you. I am also grateful to my current specialist, Mr Chris Bates, and his marvellous colleagues at the Royal Gwent Hospital.
Roger’s top tips
I’d like to pass on a few lessons I’ve learned in my many years of living with a urinary diversion in the hope that they are helpful to fellow urostomates.
- When out and about, I always carry spare urostomy bags, plus wipes and disposal bags, for those unexpected times when I need to change my bag. I also take a spare pair of underpants.
- I find it easier changing my bag in a disabled toilet rather than an ordinary one. There’s more room and often a shelf, which is handy for equipment. For this reason, I carry a RADAR key, which will unlock the majority of disabled toilets in the UK.
- Never be afraid or embarrassed to ask stoma care professionals for their advice. They are trained to help you with your specific needs.
- Keep on reading the Journal as it’s full of all sorts of useful information and advice.
- It can take time but for most of us, dealing with a stoma becomes a natural part of life, just like cleaning our teeth.
Roger’s blog first appeared in the Winter 24 edition of The Journal