A couple of years ago, Kathy Daly was using a disabled toilet in Dundrum Town Centre in Dublin to empty the ostomy bag that had been fitted following colorectal surgery in 2015.
When she came out, a woman with a child in a wheelchair tapped her on the shoulder.
“She told me I’m an absolute disgrace using a disabled toilet, and how dare I,” she says. “So I literally just lifted up my top and I showed her [the bag]. And I was like, but I have disability — just because you don’t see it ... In fairness, she nearly died.”
Daly is happy to talk about her health, her surgeries and the bag she now wears and empties three times daily. It is a conscious push to raise awareness.
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“That’s kind of the stigma that’s attached to inflammatory bowel disease. Because it’s an invisible disease. You always look well on the outside but inside you’re dying.”
Daly did not have cancer but her condition, ulcerative colitis, also led to a surgical removal of her larger bowel and, later, her rectum. These big operations transformed her life for the better.
The symptoms first emerged in 2007. Daly was very sick and noticed blood in her stool. Despite attending an emergency department, she was sent home, where the illness persisted. Later, at a different hospital, she was so ill she was kept in isolation for a month before a scope eventually diagnosed her illness.
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Living with the condition became unbearable, she says. Five years on, and just weeks after the birth of her first daughter, Laoise, Daly suffered a serious flare-up and was in and out of hospital.
“In 2015 I got so bad that I just had enough,” she says. “I [said I] can’t mentally do this any more, I can’t physically do this any more. I was wasting so much time. My daughter was growing before me and I literally couldn’t sit and play with her because I was in so much pain.”
Further drugs failed and she decided to undergo subtotal colectomy surgery, which removed all of her large bowel. She had her second child, Cadhla, 11 months later. “I actually don’t think I’d have my second daughter without the surgery.”
Finally, in 2020, she had a proctectomy, removing her rectum. The procedures mean she will live with a permanent stoma, attaching part of her bowel to a fitted bag, for the rest of her life. But it rid her of the disease and the health complications she had endured for years.