In the depths of his illness, Zane Warrell would go to the toilet up to 20 times a day.
The Mackay father of three was in his 20s when he became so malnourished that doctors warned his family he may not survive.
“I’d lost 23 kilos, that’s how sick I was,” Mr Warrell said.
“I just looked like a bag of bones.”
For Mr Warrell’s wife Taylor, who had not long given birth to their third baby, the news was like a sledgehammer.
“In that moment I just remember … looking at him. I was just like, ‘I don’t know how you’re alive’,” she said.
Lifelong condition
Mr Warrell had been diagnosed with ulcerative colitis – one of two main types of inflammatory bowel disease (IBD), which also includes Crohn’s disease — three years earlier in 2013.
There are currently 100,000 people in Australia with IBD and Crohn’s, and Colitis Australia expects that to rise.
Ulcerative colitis is a lifelong autoimmune condition that causes inflammation and ulceration in the large intestine and is the body’s response to injury or irritation.
North Queensland gastroenterologist James Daveson said most people diagnosed with IBD were aged between 25 and 45.
“Instead of being nice and smooth and absorbing fluids, [the colon] becomes quite gravel rashed and inflamed, and can’t function the way it normally does,” he said.
Before his diagnosis, Mr Warrell said he’d never heard of the disease.
“It felt like someone had a knife in my stomach just screwing it around,” he said.
“It was pretty debilitating worrying about pooing yourself basically everywhere you went.”
Besides regularly missing work, Mr Warrell said what hurt the most was sacrificing quality time with his young children.
“It broke my heart,” he said.
“The biggest thing with this condition is you don’t look sick.
“They [the children] did get to an age where they didn’t understand why we couldn’t go here or why dad didn’t want to go there.”
‘Inundated with this disease’
Now 35, Mr Warrell has spent more than a decade trying to find the best treatment to manage his symptoms.
He’s taking part in a worldwide study of a clinically trialled drug for patients who aren’t responding to standard medication.
Until recently, Dr Daveson’s private clinic in Mackay was the only gastroenterology service available within a 400 kilometre radius.
The gastroenterologist led a study published in 2022 in the Internal Medicine Journal of the Royal Australasian College of Physicians that revealed some startling findings.
It identified 56 new cases of IBD over the 12 months to May 2018 in the Mackay-Isaac-Whitsunday region – the highest crude incidence rate recorded in Australia.
“We were just inundated with this disease,” Dr Daveson said.
He said more cases were being diagnosed nationwide.
“By 2030, it’s estimated 1 per cent of Australians will have this disease,” he said.
The cause of ulcerative colitis is unknown but, according to Crohn’s and Colitis Australia, “it seems to be related to genetics and how the environment affects the immune system”.
“If it isn’t treated and it progresses, then that’s when people can end up with complications like strictures in their bowel or fistulas or abscesses or having to have surgery for the disease,” Dr Daveson said.
Better care for regional patients
The Warrell family said more regional specialists would help people manage the disease by saving time and money.
“It took for us to go to Brisbane to get a diagnosis,” Taylor Warrell said.
“There’s probably so many people who have this that go untreated because they don’t have that access.”
A Queensland Health spokesperson said attracting gastroenterologists to regional areas was a nationwide challenge due to a chronic shortage of specialist skills in the field.
In a statement, the spokesperson said that IBD telehealth services had recently been implemented in “underserved regions”, which included Mackay district.
“Mackay Hospital and Health Service is establishing a specialised gastroenterology service, which builds upon their existing dedicated IBD service, staffed by a part-time gastroenterologist and a full-time clinical nurse specialist,” they said.
Dr Daveson said exploring novel ways of delivering care in the regions would help patients navigate their way through the disease.
“The most important thing is that if people feel they have problems with their bowel, particularly if they’re young people, that they should try and talk to people about it and access care,” he said.
‘Back to being a family’
Mr Warrell said treatment options for IBD had come a long way since he was diagnosed, and he was finally responding to a new medication.
“I honestly don’t know if I’d still be here if we hadn’t had someone that knew what they were doing,” he said.
“We’ve got back to being a family in the last three or four years.
“[To] just go fishing or go for a walk on the beach. It’s the best quality of life we’ve had in the last decade.”
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