About the author
I’m Donna Watson, a retired district nurse midwife. My husband and I live in County Down, Northern Ireland, close to our daughter and two grandchildren. I think of myself as a ‘can do’ person who looks for solutions and opportunities to make a positive difference to others, which is why I chose to volunteer with the Urostomy Association.
While many people who turn to UA for support have had their bladder removed and a urostomy created because of cancer, my reason for needing a urinary diversion was completely different.
Back in 1997, I was knocked down by a voluntary ambulance at an equine event, leading to the loss of one of my kidneys and part of my bowel as well as significant damage to my bladder. The following year, I underwent further surgery to construct a neobladder, which involved taking a short length of my small bowel, shaping it into a pouch and placing it in the same area as my original bladder.
After that, I had ten fairly good years, but urinary tract infections (UTIs) and bowel obstructions took their toll. Then, in 2009, I contracted urosepsis (sepsis originating from a UTI), which triggered a debilitating cycle of recurrence every few weeks for three years, with stay after stay in hospital on IV antibiotics.
By 2013, my remaining kidney was failing, and it was a very frightening time. You wonder if you are going to see your next birthday. It wasn’t just the effect on me but on my family, who by this time were in pieces. That’s what upset me the most. I was no longer living my life and felt I was stopping them living theirs, too.
We’d lived in limbo for too long, so when I was told I needed further surgery to create a urostomy I knew I needed to go ahead. I was advised to have my kidney removed at the same time and await a transplant, but knowing the huge risks involved, this was too scary an option. My insides were a mess and I was terrified, but – thankfully – the surgery went well and I only had to spend one of my 11 days in hospital in the intensive care unit. Best of all was the news that my kidney function was amazing!
The road to recovery
Though I found recovery frustratingly slow at times, I was absolutely determined to do everything I could to ‘get back to normal’ and within six months I was – well, pretty much.
Adapting to life with a urostomy bag was tough though, especially as I received very little advice to help me adjust.
I’d never seen a urostomy or how it worked. I remember the first time out with friends my bag fell off, soaking the man sitting beside me. I hadn’t realised that if it got too full it would pull off. In many ways I was completely lost. It was while searching for help online that I found the Urostomy Association and a corner was turned. In Hazel Pixley, then-Chief Executive, I found a friendly, listening ear and someone who knew from personal experience what living with a urostomy is like.
Hazel was the first person I spoke to who understood the problems I was facing. I’ve always been active, with horse riding being a particular passion, but I really wasn’t expecting I’d be able to get back to it. It was seeing a UA Journal article about Hazel and her pony that made me believe I could and gave me the confidence to try. I haven’t looked back! Life is now different, but perfect. There’s nothing I can’t do. I sometimes forget I even have a bag!
Paying it forward
It was wanting to pay forward the kindness I received from the Association that led me to sign up as a volunteer with the charity eight years ago. It’s really important to spread awareness that will help people with urostomies. I like to be proactive, so I visited all the stoma nurses in Northern Ireland as well as many of the surgeons. I also left my business card with GPs and in chemists.
I often do pre-op visits, which I think are the most helpful because people see me looking well and the bag not being a problem. I also visit when people get home and are learning to manage things. Sometimes, I speak to someone on the phone and that’s enough to help them, but there’s also a WhatsApp group if they want to join. We could be chatting about our next holiday or discussing urostomy problems. We meet for coffee every now and again, too. If someone has a problem, the answer can always be found between us.
Thanks to our highly active group here in Northern Ireland, we have been able to identify two additional volunteers, a man and a woman, who will be of enormous help in delivering our support services into the future.
I also train airport staff, enabling them to see my stoma and what I carry in my hand luggage. We have all had embarrassing experiences travelling, so I hope that by talking to these organisations I can help improve this. I also share my story at stoma product open days.
On – or in – the water is where you’ll find me in the summer, swimming and kayaking with my bag showing. I have no qualms about that. The more honest and open we are about our bodies, the better. After all, it’s only pee!
If you’re based in Northern Ireland and would like to find out more about the support group run by Donna, you can email her at firstname.lastname@example.org.
- Donna’s story first appeared in the Summer 2022 edition of our magazine, The Journal.
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