About the author
My name is Julie Mason-Wright and I live in Northampton. I’m 54 and have lived with a urostomy most of my life, having had surgery when I was just four years old. I haven’t allowed my stoma to hold me back from being active – quite the reverse! I’ve always been a determined person, setting and reaching goals, and I’m fortunate to have a close family who’ve encouraged me every step of the way.
It can’t have been easy for my parents though, in those early days. Concerned that I was still in nappies at the age of three, mum took me to the GP several times. The answer was always the same – that whatever was going on was ‘psychological’. But when, finally, I was admitted to hospital for tests, the results revealed some congenital abnormalities. I had no bladder, only one kidney and some of my sacral spine had not formed. Years later, with advancements in technology, further tests and scans revealed other abnormalities, including a hole in my heart.
Mum recalls how after my stoma surgery in January 1975, I was discharged from hospital with just a small box of urostomy bags – and that was it! There were no local, dedicated stoma nurses at that time and mum wasn’t given details of anywhere she could turn for advice or support. We just had to get on with it.
Starting school
Initially, it was thought that I’d need to attend a special school because of my condition, but the local village school welcomed me. Everyone was friendly and I felt well supported. My urostomy bag intrigued my new friends and I was only too happy to share my experiences with them.
Being open about my condition helped me deal with it constructively and positively. It helped, too, that my parents always treated me the same as my brother Lee, not as someone with a stoma. With their encouragement, I approached life with a can-do attitude. I’d look at someone and think, “I can do that too!”
As a young child, I took ballet lessons, passing several exams, and I used to get frustrated that I couldn’t kiss my knees! But that didn’t stop me, and in my teenage years I discovered a love of horse riding too. I also joined the Girl Guides and became the first to achieve the Baden-Powell Trefoil badge, which superseded the Queen’s Guide award.
Fitness focus
I’ve maintained a good level of fitness all my life; swimming has always been a constant, and I played squash as a teenager. Each year I like to set myself a new challenge, and in 2017 I cycled coast to coast from Whitehaven to Tynemouth with Lee.
I’ve run several half marathons, and in 2021 I took on the London Marathon, inspired by Lee, who’d taken part years before.
I couldn’t join him at the time because by then I’d found out about the hole in my heart. I needed surgery to close it, but I never lost my determination that – one day – I’d follow in his footsteps. He has always encouraged me, and we’ve often swum, cycled and run together over the years.
In 2022, I tackled the Norfolk Epic, completing the gruelling challenge of cycling 200 miles in one day.
As I’m sure you’ll have gathered by now, keeping fit is really important to me. I’m a regular at the gym, where I do high-intensity classes and weights, and use the cardio equipment when the weather isn’t good enough to be outside.
In recent years, I’ve discovered Pilates, which has strengthened my back. I was so impressed with the results – it gave me the courage to train as an instructor so that I can help others improve their fitness and flexibility too.
Finding fulfilment
While I am a very active person, life hasn’t always plain been sailing. I often experience kidney infections, some more serious than others. I have learned to manage them well, and there’s there’s no doubt that adopting a healthy diet and lifestyle has helped me. On my small holding, I keep chickens and sheep, and occasionally pigs too. I also keep bees, and with a veg patch and fruit trees; there’s plenty of produce for cooking and baking. It all keeps me busy, and I feel happy and fulfilled.
Workwise, I guess you could say I’ve come full circle in my life. Thirty-seven years ago, I trained as a nurse, and I still work for the NHS now – I specialised in cardiology, before moving into management. I work at Northampton General Hospital, where I was born and had my urostomy operation all those years ago. I still remember a nurse letting me have one of the hats they wore back then. My nan was also a nurse, and I was sure I wanted to be one too.
It’s important to me to be there for people who need me. As a student nurse on a night shift, during my surgical placement, I sat with a patient who was having stoma surgery the next day. We were both 18, and I explained to her that I’d had my urostomy since the age of four, reassuring her that she could still live the life she wanted.
Surrounded by support
I’m fortunate to have a great circle of friends, including some from primary school and one I met while we were training to be nurses. I also have some lovely work colleagues. But most of all, it’s my family who’ve been my biggest supporters. I’ve always had a close relationship with them, including with my grandparents, who were very involved in my younger years.
As other urostomates know, there are sometimes bumps in the road when you live life with a bag. In recent years, I’ve experienced sores around my stoma and under my bag. I am fortunate to have stoma nurse colleagues who help me, but I do not have a local urostomy nurse, so no point of contact should I need some advice or encounter a problem. I know I’m not the only one in this situation, which makes the work of the Urostomy Association all the more important. The support and resources are a lifeline for many, and the Journal keeps me up to date with new developments and products, such as adhesive removers and skin barriers.
I hope that reading my story encourages anyone who might be feeling daunted about life with a urinary diversion. Running marathons and going to the gym may not be your thing, but with the right support and a positive mindset, you can still reach for your goals and enjoy life along the way. Go for it!