Crohn’s disease diagnosis: Doctors told teen with incurable disease to ‘just lose weight’

Exclusive: Amelie Russell, 21, lives with a incurable disease since she was a child, but doctors refused to diagnose her for more than a decade.

First they said her stomach pain was from something she ate, and then that it was caused by that tension.

When she hit puberty, they claimed her periods or weight was to blame

The truth is that the Russell had been living with undiagnosed, untreated Crohn’s disease for years.

Crohn’s disease is a form of inflammatory bowel disease (IBD), an incurable condition that affects approximately 180,000 Australians.

Common symptoms include diarrhea, stomach pain, bloody stools, unexplained weight loss and fatigue.

These symptoms can be debilitating, but according to Crohn’s and Colitis Australia (CCA), about one in three Aussies with IBD wait more than a year for diagnosis.

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One in ten wait more than five years – just like Russell, who struggled to get doctors to take a young woman with vague gastrointestinal complaints seriously.

“They downplayed it every time,” she told nine.com.au.

She was about six years old when she first ended up in the emergency department with mysterious stomach pains and was told there was nothing wrong with her.

The doctors said the same thing the next time she went to the hospital, and the time after that.

The pain got worse as she got older, but medical professionals continued to ignore it and find new ways to explain her symptoms.

“They said, ‘It’s probably just your period, you should go on the pill and see if that works,’” Russell claimed.

Multiple doctors told her to “just lose weight and see if that would help.”

“I was bullied in high school because I was a little on the heavier side,” Russell said.

“Because that’s what doctors said…I fell into a spiral of disordered eating.”

Russell was desperate for relief from the gastrointestinal complaints that were beginning to affect her daily life.

Sometimes the pain was so bad that she could not sleep.

Her parents hated seeing her suffer while being told over and over again that there was nothing wrong with her.

Even a gastroenterologist who performed a colonoscopy and endoscopy on Russell at age 17 couldn’t give her an answer.

Fed up with hearing that she was doing well, Russell sought a second opinion about a year later.

The second gastroenterologist she saw took one look at the results of her colonoscopy and said three words that changed her life.

“There is inflammation everywhere.”

After a series of tests, including an MRI and another colonoscopy, Russell was eventually diagnosed with Crohn’s disease.

She was both relieved and terrified

At the age of 19, she had to spend the rest of her life dealing with an incurable disease – a disease that no one even believed she had.

It was a bitter pill to swallow, especially if you wanted to pay for the treatment.

There are a number of treatment options for Crohn’s disease that can reduce inflammation, ease symptoms, and sometimes lead to remission.

Even after diagnosis, almost half of IBD patients take more than five years to get their condition under control and the costs add up quickly.

“It was very expensive to pay for all this stuff, and a 19-year-old doesn’t exactly have an abundance of extra money,” she said.

And while treatment can help control symptoms, it is not a cure

“It was also very frustrating because I thought, why am I not getting better?”

Delays in diagnosis can lead to higher healthcare costs, as well as preventable complications and long-term health consequences, emotional distress, social problems and career problems.

As it stands, Aussies with IBD spend around $5,900 a year managing the disease and it costs the economy an estimated $7.8 billion a year.

Although Russell has found a medication that helps control her symptoms, she will have to pay to manage the disease for the rest of her life.

Even with medication, Crohn’s disease still impacts the 21-year-old’s personal and professional life.

Russell often has to take time off from her daycare job or cancel plans with friends when the flares make her too sick to leave the house.

“Sometimes I still get really upset about it,” Russell said.

Just telling an employer or new friend that she has the disease can be embarrassing, but she has learned to live with it.

She only wishes it hadn’t taken so long to get a diagnosis and treatment

Russell suspects she would have been diagnosed sooner if she were a man, and urged other young women and girls to be their own advocates when something doesn’t feel right.

“Just keep going to the doctor, keep trying new doctors,” she said.

“I know it can be expensive, but it’s horrible not knowing what’s going on, and the relief you get when you find out it’s worth it.”

May is CCA’s Awareness Month and this year the nonprofit is focusing on the costs of delayed diagnosis. More information on the CCA website.

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