Crohn’s disease: Sydney student Lili Higgins reveals her nine-year battle with the invisible illness

One look through Lili Higgins’ Instagram feed and you’d be forgiven for thinking that she is a young woman who has it all.

The stunning 21-year-old’s posts are a beautiful collection of stylish outfits, exotic holidays in Indonesia and picture perfect family adventures.

But the Sydney University teaching student’s photos show nothing of the invisible illness she has been fighting in secret for the past nine years.

Ms Higgins was only 12 when she was diagnosed with Crohn’s disease, a painful and typically lifelong inflammation of the digestive tract that causes excruciating stomach pain, severe diarrhoea, exhaustion and malnutrition.

One look through Lili Higgins' Instagram feed and you'd be forgiven for thinking that she is a young woman who has it all, but her photos hide the invisible illness she has been secretly fighting for the past nine years

One look through Lili Higgins’ Instagram feed and you’d be forgiven for thinking that she is a young woman who has it all, but her photos hide the invisible illness she has been secretly fighting for the past nine years

Inflammation occurs when the immune system mistakenly attacks healthy cells in the digestive tract, believing there to be an infection it needs to fight.

Patients with Crohn’s experience periods of ‘flare-up’, when symptoms are present, and remission, when some – but never all – disappear. 

They recur suddenly and without warning.

After almost a decade of secrecy from all but her immediate family, Ms Higgins has shared her story with Daily Mail Australia in the hope of removing embarrassment and stigma about the debilitating condition that affects almost 75,000 Australians.

Ms Higgins was only 12 when she was diagnosed with Crohn's disease, a painful and typically lifelong inflammation of the digestive tract that causes excruciating stomach pain, severe diarrhoea, exhaustion and malnutrition

Ms Higgins was only 12 when she was diagnosed with Crohn’s disease, a painful and typically lifelong inflammation of the digestive tract that causes excruciating stomach pain, severe diarrhoea, exhaustion and malnutrition

Ms Higgins was diagnosed after suffering from ‘crippling’ abdominal cramps and quickly losing a dramatic amount of weight on holiday in 2011.

Her mother noticed the telltale signs immediately because Crohn’s runs in their family, with Ms Higgins’ grandmother suffering from it for most of her life. 

Ms Higgins says the debilitating condition means there are ‘endless amounts’ of things that otherwise healthy people can do that those with Crohn’s cannot.

‘Because the disease effects everyone differently, it’s hard to pinpoint one thing, but for me I find the fatigue affects everything from social life to work and university,’ she said. 

‘There will be events or activities planned with family and friends that I won’t be able to do, or will only be able to go for a short while, because I get too tired.’ 

Then there’s the agonising cramps.

Ms Higgins says the debilitating condition means there are 'endless amounts' of things that otherwise healthy people can do that those with Crohn's cannot

Ms Higgins says the debilitating condition means there are ‘endless amounts’ of things that otherwise healthy people can do that those with Crohn’s cannot

Crohn’s disease explained

Crohn’s disease is a type of inflammatory bowel disease that causes excruciating stomach pain, severe diarrhoea, exhaustion and malnutrition.

Other symptoms include ulcers, fatigue, constipation, inability to absorb nutrients from food, loss of appetite, nausea and vomiting, iron deficiency and inflammation of the skin, eyes and joints.

It occurs when the immune system mistakenly attacks health cells in the digestive tract, but the exact cause remains unclear.

While stress and poor diet are known to aggravate the condition, research has shown they do not cause it.

Family history, environment and issues with the immune system from birth are thought to play a role in its development.

Up to 20 percent of people with Crohn’s disease also have a parent, child or sibling with the condition, according to the Crohn’s & Colitis Foundation.

People with Crohn’s are also more likely to develop intestinal infections from bacteria, viruses and parasites, as well as life-threatening complications.

Inflammatory bowel disorders like Crohn’s have been linked to an increased risk of colorectal cancer.

Despite advances in treatment over the past three decades – including the prescription of immunosuppressant drugs – no cure has been found.

Source: Healthline and Crohn’s and Colitis Australia     

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‘If I wait too long to eat, my stomach pains increase to the point where I can’t function. I have to go home because the only thing that will ease it is laying down with a heat pack on my belly,’ she said.

The immunosuppressant drugs Ms Higgins takes to manage her condition dramatically increases her risk of skin and other forms of cancer, which means she rarely goes to the beach and never sunbakes.

This type of medication slows the rate at which healthy cells attack themselves but also weaken the immune system, leaving takers highly susceptible to infection. 

‘It’s held me back in many situations,’ Ms Higgins said.

So grave are the potential side effects that she has no choice but to repeatedly decline invitations to beach days with friends, a situation that makes her feel isolated and misunderstood.

‘I feel like it can annoy people because they don’t understand the disease or the consequences of the medication if I don’t protect myself,’ she said.

‘They’re not able to visibly see how it effects me. I find it hard to explain in a way that will be easy to understand and not in a way that sounds like I’m lazy or complaining.’

Ms Higgins is one of roughly 80,000 Australians who live with an inflammatory bowel disease, 75,000 of those with Crohn's

Ms Higgins is one of roughly 80,000 Australians who live with an inflammatory bowel disease, 75,000 of those with Crohn’s

Ms Higgins is one of roughly 80,000 Australians who live with an inflammatory bowel disease (IBD), 75,000 of those with Crohn’s.

Inflammatory bowel diseases are an emerging global disease, with Australia having one of the highest prevalence in the world.

They are becoming more common, more severe and more complex, as well as being diagnosed in increasingly younger patients.

Still, the exact cause of Crohn’s disease remains unclear.

While stress and poor diet are known to aggravate the condition, research has shown they do not cause it.

Family history, environment and issues with the immune system from birth are thought to play a role in its development.

Up to 20 percent of people with Crohn’s disease also have a parent, child or sibling with the condition, according to the Crohn’s & Colitis Foundation.

Ms Higgins has been forced to take a leave of absence from her teaching degree due to the severity of her most recent flare-up which was triggered by the stress of the pandemic

Ms Higgins has been forced to take a leave of absence from her teaching degree due to the severity of her most recent flare-up which was triggered by the stress of the pandemic

People with Crohn’s are also more likely to develop intestinal infections from bacteria, viruses and parasites, as well as life-threatening complications.

Inflammatory bowel disorders like Crohn’s have been linked to an increased risk of colorectal cancer.

In addition to stomach pain, diarrhoea and chronic fatigue, Crohn’s also causes ulcers, fatigue, constipation, inability to absorb nutrients from food, loss of appetite, nausea and vomiting, iron deficiency and inflammation of the skin, eyes and joints.

And despite advances in treatment over the past three decades – including the prescription of immunosuppressant drugs – no cure has been found.

While the pandemic has caused extraordinary distress and emotional upheaval for billions around the world, Ms Higgins’ condition means she has still had a tougher year than most.

With stress a leading cause of Crohn’s flare-up, the outbreak of coronavirus triggered the worst episode she has had since being diagnosed almost a decade ago.

Ms Higgins has been forced to take a leave of absence from her teaching degree due to the severity of her symptoms.

The side effects of her immunosuppressant medication put Ms Higgins among those most vulnerable to contracting coronavirus, leaving her no choice but to quit her part-time retail job when the pandemic was declared on March 11

The side effects of her immunosuppressant medication put Ms Higgins among those most vulnerable to contracting coronavirus, leaving her no choice but to quit her part-time retail job when the pandemic was declared on March 11

And with immunocompromised people among those most vulnerable to contracting COVID, she was let go from her part-time retail job at the start of the virus crisis – adding financial hardship to her list of stresses.

Her fatigue and stomach pain are so intense, she is often bedridden for weeks at a time. In October, she spent eight days in hospital. 

After the pandemic was declared on March 11, Ms Higgins didn’t leave the house for 52 days.

She is sharing her story to raise awareness about the far-reaching consequences of Crohn’s disease for all who live with it.

Ms Higgins says she hopes going public will lead to a greater understanding about the condition.

‘If you know someone with Crohn’s, be patient,’ she said.

‘Listen to what they are telling you and understand that this disease is so much more than just a sore stomach.’

For more information on Crohn’s disease, please visit Crohn’s and Colitis Australia. 

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