‘I was 21 when I was diagnosed with an "old man’s disease". For years, doctors ignored my symptoms.'

In 2012, Stephanie Kay was in the “prime” of her life.

“I was in my last year of uni in Brisbane, I’d been to Europe, I’d just celebrated my 21st birthday, and I was really on the cusp of going into this next new exciting phase of my life,” she told Mamamia. 

Then the news hit. 

“I was in the computer lab at uni with one of my friends, trying to finish an assignment, when I got the call that it was cancerous from the biopsy they'd done during the scope of my bowel,” she said.

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“I think there was a lot of disbelief because I was someone who had a very clear path of the life that I wanted, as you do when you're 21. Cancer was not even a consideration. I didn’t even know any other young person with cancer.” 

Let alone bowel cancer. 

“There's absolutely a stereotype about bowel cancer being an 'older person's disease', perhaps even an older man's disease,” Stephanie said. “And I think that that's a really dangerous stereotype. 

“It's dangerous because there are people - and not just average people, but health practitioners - who may not be as aware as they need to be.”

And maybe that’s why Stephanie had to fight to be heard. 

"I was ignored’

While the diagnosis came as a complete shock to the then-21-year-old, she had noticed a change in her bowel habits over the past two to three years. “One day I would have a really upset tummy and then other days I couldn't go to the toilet,” she said. 

Stephanie knew something wasn’t right, but each time she mentioned it to her doctor her symptoms were ignored. 

“I was told that I was just stressed with uni or busy with work or that I might have some food intolerances,” she explained. “But none of that sat right with me because honestly, I didn't find uni particularly stressful, and I was actually quite happy, living a pretty easy life.”

Image: Supplied.

So Stephanie kept complaining to her GP until she was finally put on the waitlist for a colonoscopy, which involves a tube being inserted into the rectum to examine the bowel. 

The wait took about two years because, according to the now 31-year-old, she wasn’t considered high-risk. “On paper, I was a perfectly healthy young woman,” she said. 

“When I finally got the colonoscopy, it turned out that I had early-stage bowel cancer. I had 72 polyps in my bowel, which is a lot. Most people, as they get older, will get a few polyps. But I had this huge amount.”

At the end of 2012, Stephanie underwent a restorative proctocolectomy.

“That’s where they take out your colon and rectum, so all of your large bowel, and then at the lower part of your small bowel they basically turn that into a replacement and connect it down to the anus,” she said. “So it's like an internal pouch.”

Two months later, she had another surgery to reverse it and complete the procedure. Then, after a “really long recovery process”, Stephanie tried to get back on with her life. But it didn’t go as planned. 

“I naively thought at the beginning of everything that when you have a change to your health like this, you have the surgery and you do what you're told and then everything goes back to normal,” Stephanie said. 

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“But unfortunately, like many other people who develop chronic health complications after having cancer, that's not the case. And I had, and still have, complications and some long-term illnesses from my surgery.”

Life after bowel cancer

It’s been 10 years since Stephanie was told she had cancer and she’s still suffering. 

“Every few months I have a few flare-ups of really severe inflammation in my bowel that causes me to need to go to the toilet a lot, and I’m in chronic pain,” she said. “And after having a baby, it’s definitely gotten worse. 

“I've also had a few life-threatening bowel obstructions and ended up in hospital for treatment with a nasal gastric tube. Fortunately, I think I've only had three of them, but I guess it’s been a big interruption to my life.”

“The long-term consequences and life after bowel cancer is something I feel quite uncomfortable mentioning,” she said. “Because at least I get to have a life. 

Image: Supplied.

“I guess whenever I'm in a lot of pain or having a really rough day, at the end of it I still just feel glad to be alive. I was extremely fortunate that everything was found early. Bowel cancer is not a cancer that is often detected early, so I was so, so lucky.” 

Stephanie went on to point out the rising stats around bowel cancer in young people in Australia, where it is the deadliest form of cancer for those aged 25 to 44. 

According to Bowel Cancer Australia, there has been a 266 per cent increase in bowel cancer incidence rates in adolescents and young adults (15-24 years old) over the past three decades, while 290 people under 50 die from bowel cancer each year.

Breaking the “poo taboo”

A decade on from her cancer diagnosis, Stephanie is married, living on the Sunshine Coast, and about to celebrate her son Henry’s first birthday.

“Becoming a mum has made me even more passionate about talking about bowel cancer wherever possible,” she told Mamamia. “Because we need to make it one of the cancers that people used to die from.”

She’s now on a mission to raise awareness and encourage people to “trust their gut”. 

“If you have any changes to your bowel habits and something doesn't feel right, don't be quiet about it,” she said. “Be really, really loud until you get answers or until you've investigated as much as possible.”

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Stephanie is also determined to smash the stigma around colonoscopies. 

“Having a colonoscopy is so easy and so simple and it saves lives, so people just need to go get them,” she argued. “None of that discomfort compares to the discomfort anyone would feel if they were told that their life was now going to be cut short because they have bowel cancer. It doesn’t even compare.

“We just need to keep talking about this and bowel cancer to break the poo taboo, and stop people dying from a preventable cancer.”

Images: Supplied.