I needed the toilet, but just couldn’t go...By Tia Castle
In a hospital gown, I looked down at my swollen stomach and sighed.
‘I just can’t go,’ I said, frustrated.
Throughout my childhood, I’d suffered with terrible urinary tract and kidney infections, even having to have my right kidney removed.
Now 23, I’d been admitted to hospital with sepsis in my urinary tract.
As I sat with my partner, Steven, by my side, I explained to doctors that I couldn’t go to the toilet.
In fact, I didn’t even feel like I needed to pee, but it was clear from my swollen stomach that my bladder was full.
‘You’re holding more than two litres of water,’ doctors said, shocked.
Over the next few days, I was taught how to use a catheter – inserting the tube into my bladder, allowing me to urinate.
For the next nine months, my life revolved around doing this every few hours.
‘It really hurts,’ I’d complain.
With the pain becoming unbearable, doctors fitted various permanent catheters, including one that was inserted in my lower stomach.
I was losing hope, until…
‘Have you heard of Fowler’s syndrome?’ a friend asked me one day.
Researching it, I learnt that Fowler’s syndrome occurred when the bladder couldn’t relax to release water, resulting in being unable to wee and urinary retention.
At my next appointment, I was diagnosed with the condition.
It was a relief to finally have an answer, but scary too, as it was incurable and very rare.
Doctors tried various treatments.
Wires were inserted into the base of my spine to stimulate the nerves in my bladder.
I was even offered surgery to remove part of my bladder, to create a new path for the urine to flow.
But nothing worked and I was in constant pain.
I was often bed-bound and still suffered with chronic infections.
It was then I made the big decision to have my bladder removed completely, and have a stoma fitted.
My stoma – which I’ve nicknamed Ariel after the Little Mermaid – has given me a new lease of life.
But I’m still struggling with constant infections, and I’m also developing antibiotic resistance, which makes them more difficult to treat.
Now, I’m waiting for experimental vaccine trials, which I hope will help.
I want to tell my story, so anyone else with Fowler’s syndrome knows they’re not alone, and so that those with a stoma realise there’s nothing to be ashamed of.
Ariel has saved my life.