One in 30 will experience it, but few people want to talk about bowel incontinence

Hugo Toovey was the picture of health: young, fit and staring down the barrel of a long and promising military career. Like most young people, he felt bulletproof.

All this changed when, at 21, he received a prostate cancer diagnosis after discovering a pea-sized lump on his testicle.

“I was at that real vulnerable age, navigating life. I had just graduated services training and then my cohort was travelling to different parts of Australia and getting lined up for deployments at the early stage in their careers and there I was, losing all my hair, looking sick, weak,” he says.

Chemotherapy and major surgery successfully cleared him of cancer. But just two months after receiving his five-year bill of clean health, Toovey was dealt another blow when he was diagnosed with colorectal cancer.

Having grown up with irritable bowel syndrome (IBS), Toovey was used to bowel irregularities, but something told him to push his doctors for a colonoscopy, revealing large polyps.

Today, now 43, Toovey is cancer-free, but still lives with the lifelong effects of bowel cancer.

Multiple major surgeries over eight years and a Crohn’s diagnosis mean Toovey’s colon and rectum were removed, as well as most of his bowel (Toovey has 1.8 metres of bowel, compared to the average 7.5 to 8 metres).

He now lives with a permanent ileostomy, meaning his stool now leaves his body through a stoma bag.

But before the stoma, he struggled quietly and invisibly with incontinence – appearing “well” on the outside, while navigating severe bowel dysfunction.

“Behind the scenes, you’re up every single night, your wife’s running your Epsom salt baths because you’re in so much debilitating pain. Every time I’d go to the toilet, it’d feel like razor blades, and you’d just be sitting in a bathtub in tears in so much pain and discomfort.”

Having spent his adolescence in the military – a profession that has traditionally valued stoicism and physical strength – it’s taken Toovey years to feel comfortable asking for help.

“Whenever a mate or someone would visit me in hospital or check in on me, I’d always be like, ‘yeah, I’m all good. I’m cracking on’. And put up that front,” he says.

Today, this is something Toovey wants to change through his charity 25 Stay Alive, which advocates for prevention and early detection for young people.

Bowel or bladder incontinence is common, affecting over 7.2 million Australians at some stage in their lives.

Despite this, a heavy cloud of stigma still hangs over those living with incontinence – particularly bowel incontinence, which one in 30 people will e