A woman from Paisley has shared her eight-year ordeal of being unable to urinate naturally, a condition that ultimately led to the removal of her bladder and the fitting of a stoma bag. Tia Castle, now 31, has suffered from severe bladder and kidney infections since the age of four, and was diagnosed with Fowler's Syndrome in 2017.
Fowler's Syndrome is a rare disorder that prevents the muscle responsible for continence from relaxing, making normal urination impossible. The cause remains unknown, and there is no cure. In 2017, Tia was hospitalised with urosepsis, a life-threatening complication of a urinary tract infection, with over two litres of urine trapped in her bladder.
After being trained to self-catheterise, Tia experienced severe pain and became bed-bound. She underwent multiple surgeries, including a Mitrofanoff procedure in 2021, which involved using a piece of bowel to create a channel for catheterisation. However, the channel collapsed, and after further complications, she opted for a urostomy – the removal of her bladder and creation of a permanent stoma.
Last year, Tia had her bladder removed and now lives with a stoma bag, which she has named Ariel. Despite the surgery, she continues to suffer from frequent kidney infections, experiencing around three per month. She has developed resistance to antibiotics after 27 courses this year alone.
Tia, who is too unwell to work, hopes to raise awareness of Fowler's Syndrome and reduce the stigma around stoma bags. 'I'm unable to do the things I used to enjoy and spend most of my time in bed,' she said. 'I want to raise awareness for Fowler's and stop the stigma attached to stoma bags, as it's what keeps me alive.'
