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.

A common but ‘invisible’ problem

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 experience.

Dr Shan Morrison, director of Pelvic Health Matters in Melbourne, suspects it may be under-reported due to the persistent shame it carries, more so perhaps than urinary incontinence.

She says this is particularly acute for younger Australians, like Toovey, given the condition’s association with ageing.

While incontinence becomes more common with age, seven in 10 who live with it are younger than 65. One in 50 Australian teens experience some kind of bladder or bowel incontinence.

Morrison explains there are two types of fecal incontinence: passive, which often presents as leakage, and urge incontinence, which can present as a lack of control and accidents.

She says some of the most common causes include perineal tears from childbirth, ileostomy reversals, nerve damage that might arise from paralysis or Parkinson’s disease, exposure to radiation, or bowel diseases like Crohn’s or IBD.

Morrison works first-hand with those navigating incontinence, and has witnessed the toll it can take on their lives.

“I have observed absolute social isolation, people not engaging in activities they enjoy,” she says. “It might be social, or there are people who don’t want to go into the office, because maybe the toilet is a public or distant.”

‘I appear as someone with no health issues’

Twenty-seven-year-old Anja Christoffersen has walked down international catwalks and competed in beauty pageants. On the outside, she looks like any other twenty-something.

But Christoffersen was born with VACTERL, a rare group of conditions affecting around one in 10,000 to 40,000 newborns.

“I was born with a cloaca, which is one single opening. Into that I had my intestines, my urethra, and then two vaginas with two separate uteri,” she explains.

“When I was a child, my parents explained it to me as I was born with a plumbing problem. So I didn’t really have a way to get food or water into or out of my body.”

At just five hours old, Christoffersen underwent surgery to reconstruct her food and air pipes, as well as a colostomy and vesicostomy – procedures that would allow her bladder and bowel to empty.

These were the first of many surgeries to come, including pelvic reconstruction at seven months old.

Navigating chronic constipation and unpredictable bowels has become easier with age, but was particularly challenging growing up.

“I appear as someone with no health issues. So especially around school camps and sleepovers and things like that, it would be difficult,” she says.

Christoffersen speaks of the incongruity of working as a model since her teens in an industry that prioritises physical appearance over health, recalling the lengths she once went to for a swimwear show.

“It was terrifying, and I just had to do it and trust myself. I had really bad gastro for weeks and I had this runway coming up, and I went to my doctor and asked, ‘how do I guarantee that I’m not going to have diarrhoea on the runway?’,” she says.

“He said the only way you can guarantee it is by not eating, and they meant that as a joke, but I was like, ‘perfect’.”

Dating has also come with its challenges. While she’s had mostly positive experiences, not everyone has been understanding.

“So obviously wrong partner, but it is challenging because people don’t necessarily understand, and they can be really intimidated by a lot of medical stuff,” she says.

“It can be seen as too much or a burden.”

Alongside being a staunch disability advocate, Christoffersen is editor of In Crowd, a new magazine launching on Monday dedicated to shedding light on the typically invisible experiences of those with incontinence.

‘This isn’t a way to live’

Two years ago, lawyer Jolly Duong was cycling with friends when his life changed forever. Failed brakes and a collision with a rock, landing on his spine, left him paralysed from the nipples down.

“I remember lying in the emergency room and telling my friend and auntie that I couldn’t do this. I was like, ‘I don’t want to do life as a vegetable’,” Duong, 32, recalls.

“The first three weeks was just that narrative of, ‘how can I function when I can’t even go to the bathroom on my own?’”

But a conversation with a nurse whose partner was quadriplegic changed his outlook.

By August, Duong, who had always been a keen athlete, was competing in the City2Surf in a wheelchair.

He went on to found Second Chance Support Services, an organisation devoted to helping people with disability heal and connect with others through sport.

For Duong, who suffers from constant and severe nerve pain as a result of the accident (he likens the sensation to “feeling like it’s on fire”), physical activity – including archery – is a means of release.

Medication is available to treat the pain, but Duong says one of the side effects is lowered mental capacity.

One of the most challenging adjustments for Duong was losing the ability to control his bowels and bladder.

He also has ulcerative colitis, a type of IBD, which was made worse after the impact on his spinal cord.

“At the time it was humiliating, but I’ve also come to terms with it,” says Duong. “It also allowed me to come to terms with the fact that it’s not within my control, but there are means of addressing the issues,” he says, drawing the analogy of navigating the world with a disability as akin to solving a puzzle.

Today, Duong manages incontinence with the “irrigation method”, which involves flushing out his bowels.

“It gives me about 24 hours, which is really helpful because it just gives me a bit more confidence, you know? You’re not going to soil yourself throughout the day.”

Seek help

For Morrison, the most important message is that help is available – and living an active, fulfilling life with a little support is possible.

Everyone’s normal is different (as Morrison points out, anywhere between three bowel movements a day to three a week is considered within the range of normal frequency).

So how should you know when to seek help?

Morrison says any changes to frequency, inability to control urges or empty properly are all risk factors.

Ultimately, “if it’s impacting them and their life or doing things they enjoy because of how their bowels are functioning, then they should be seeking help.”

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