Doctors ignored signs of Sophie's incurable disease until her legs started swelling to twice their normal size

Red welts bloomed over Sophie Muir's skin almost overnight, like huge mosquito bites covering her calves and ankles. 

They were the first outward sign of the incurable disease that had been wreaking havoc inside her body for almost a year.

"I went to GP after GP, I would turn up at the emergency room screaming in pain," Muir tells 9honey, but doctors weren't worried about her symptoms.

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Then 22 and living in London, she'd been plagued by stomach pain, diarrhoea, vomiting and fatigue for months before the marks on her legs showed up.

She was constantly calling out sick and bosses weren't sold on her vague symptoms, even though they left her in agony.

So when Muir arrived at the emergency room with her ankles and calves swollen to twice their usual size, a tiny part of her was relieved. 

"After nearly a year of rocking up to the ER, begging for help, finally someone was taking me seriously," she says.

The red welts turned out to be an inflammatory reaction called erythema nodosum and a simple blood test revealed Muir's inflammation markers were through the roof.

That hospital visit in 2012 was when she was finally diagnosed with Crohn's disease, an inflammatory bowel disease (IBD) associated with abdominal pain, frequent diarrhoea, fatigue, fever, loss of appetite and weight loss. 

About 100,000 Australians live with IBD 00and typically go through periods without symptoms, followed by periods of intense symptoms, known as a 'flare-up'. 

It's also incurable. Hearing that rocked Muir to her core.

While treatment can help reduce symptoms, control inflammation and heal the bowel, finding the right treatment is a game of trial and error and the side-effects can be frustrating.

Muir's first treatment suppressed her immune system, so instead of missing work with flare-ups, she was constantly ill with colds, flus and other viruses.

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That meant more sick days and trying to explain her chronic illness to employers who mistakenly assumed the Crohn's was the same as IBS.

A 2021 study of Crohn's patients found that almost half of respondents (48 per cent) agreed the disease "hampered" them in the workplace, and Muir felt the same.

"It's definitely impacted my development in certain jobs," she says.

"There's plenty of other people waiting to take your job if you can't do it."

Eventually she moved home to Australia and started her own business, giving her more flexibility to work around her illness though Crohn's still affects her career.

Muir admits, "I can't exactly tell a client, 'Sorry, I need to reschedule our meeting because I can't stop going to the bathroom today.'"

Though she may look healthy and successful on Instagram, the reality is that Crohn's takes a huge toll on her physically, mentally and financially - other people just don't see it.

There are days when she's so fatigued she can't get out of bed, flare-ups that leave her on the toilet for hours on end, and just managing her symptoms costs Muir over $4,000 annually – and that's in years when she doesn't need surgery.

An Australian study from 2017 found Crohn's costs patients a median of $15,648 annually, and even with expensive private health insurance it's hard for Muir to keep up with medical bills.

She was "at the mercy of the public system" for years before she could afford private coverage, and even with it she had to fork out about $7,000 in out of pocket expenses for a recent bowel resection surgery.

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"Originally I was going to do it through the public system, and the wait lists were just crazy," she says.

Doctors originally told Muir they'd have to remove about 10-15cm of her bowel in 2019.

Then COVID-19 pushed the surgery back to 2023, and they ended up cutting out 20cm of her organs.

Up to 80 per cent of Crohn's patients need surgery in their lifetime and most require more than one procedure, meaning even more medical bills.

"It's quite likely I will need another surgery within five years of that surgery, and then again," Muir says. "It's a way to manage it. It's not a cure."

Crohn's patients with active disease can spend between $2,168 and $16,471 on treatment in a single year, per the 2021 study, and it's getting harder for Aussies to keep up in the current cost of living crisis.

Muir will likely never be able to afford a home with so much of her income going towards the disease, and it's even harder on Aussies living in poverty.

Crohn's is incurable so Muir and the tens of thousands of other Australians living with it have to carry the physical, financial, professional and mental weight of the disease for their entire lives - but there is a way for everyday Aussies to help bear that burden.

Crohn's and Colitis Australia (CCA) has already invested more than $650,000 into research grants and is aiming to raise thousands more in September through its Live Fearless Challenge.

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Aussies are challenged to walk 5km a day or equivalent* during September to raise awareness and vital funds for people living with Crohn's disease and ulcerative colitis.

"Just getting up in the morning and going about your day is hard enough" during a Crohn's flare-up, says Muir, "so a 5k walk or run in a day is actually a huge achievement."

For more information on the Live Fearless Challenge, to register or donate, click here.

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