My name is Lorna. I was 16 when I was referred to a urologist as I was experiencing recurrent UTIs, and GPs struggled to discover why.
When my urine test results kept coming back clear of infection and my bladder wall showed no issues on the camera, it was very hard to hear, making me feel as if my symptoms were all in my head.
Desperate for answers I’d spend hours combing the internet, until – finally – I came across an article about interstitial cystitis (IC), also known as painful bladder syndrome. Reading it was like a light flicking on.
After many years battling to get answers about my health, being armed with this information helped me get a diagnosis of IC after chronic UTIs were eventually ruled out. It was such a relief to put a name to what was making me so unwell and, at last, to be on a path to what I hoped would be recovery.
With IC, some people can control their symptoms through medication and diet while others find this doesn’t work for them. In rare cases, like mine, bladder removal is the only option to get back quality of life.
I was 28 when I was offered the surgery by my urologist, welcoming it with open arms. Even though I knew the operation meant I would never urinate the usual way again, the prospect of being without pain and able to get back to living my life gave me the hope I’d been craving.
In February 2022 I went through seven hours of major open surgery where they removed my bladder and almost all of my urethra, before creating my urostomy with part of my small bowel. Afterwards, as the numbing effect of the epidural gradually wore off, I realised that the pain of IC had gone.
Of course, it took time to recover after such a big operation. Plus, I had the not-so-small matter of getting used to my bag. It was my stoma nurse who recommended naming my urostomy and so we decided to call her Stella.
Now, when I look at Stella and my scars all I see is strength. I love what they represent. That’s not to say life is free of struggles. Having a urostomy can leave people more susceptible to urinary infections, and unfortunately for me I’m part of the minority who experience these regularly.
While I’m sad it took so many years to get the diagnosis that led to my stoma surgery and freedom from the debilitating pain of IC, I have no regrets about the operation itself.
Stella the stoma has given me my life back, so I remember that and focus on the positives. If you’ve got your surgery coming up, or you’re in the early stages of recovery and wondering if you’ll ever feel like yourself again, please know that you will get there, step by step.