Crohn's disease is an invisible illness that cripples 100,000 Aussies with a host of symptoms including severe abdominal pain. Effective treatments are limited but research has begun on a new diet-based approach.
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In every 250 Australians, aged five to 40, there's one person with Crohn's disease and that statistic is increasing, Monash dietician Jessica Fitzpatrick said.
The chronic disease also has serious ramifications for the way patients can interact with the world, with friends, romantic partners and work.
And access to essential specialists is rare in regional and rural areas, Ms Fitzpatrick said.
Ned Wurf, a participant in the Monash research, lives in regional Victoria and has been managing the chronic disease for almost 20 years.
He struggles to make and keep plans because of the unpredictability of the condition.
"Your days can change at the drop of a hat - you can be feeling great and then your whole body can turn," he said.
He cancels more plans than he attends, he said.
The symptoms "differ so much from day-to-day".
The disease is an inflammation in the gastrointestinal tract that causes abdominal pain, diarrhea or constipation, fatigue, nutritional deficiencies and affects patients' quality of life and wellbeing.
"Your gut runs everything in your body and if it's playing up, everything else is as well," Mr Wurf said.
Mr Wurf experiences brain fog, anxiety and confusion along with the mental health knock-on effects of withstanding chronic pain.
"It's sucky, it really is. I don't know how to put it in better terms," he said.
"A lot of people don't know what Crohn's is and you have to explain it, which can be a hurdle in itself because it can often not be the nicest thing to describe."
Options for treatment are limited.
"The traditional treatment for Crohn's disease is life-long medical immunosuppression or surgery, for people who are usually diagnosed between the ages of 15 to 30," Ms Fitzpatrick said.
Young people prescribed with life-long immunosuppression often leads to side effects, risks and medication failure, she said.
A nutritionally-balanced liquid diet has been available to treat Crohn's for around 30 years but is "not a permanent solution", she said.
Mr Wurf said during his diagnosis and treatment, nutritional advice was "never really offered, it was always medication".
He's learnt to "lessen the pain" through his own experiments and the trial and error of avoiding certain food and drinks.
Some of his diet experiments included vegetarian, vegan, meat only and raw food only diets.
Each diet had it's own strengths and weaknesses and but only worked for a period of time, he said.
Ms Fitzpatrick's PhD research centres on a sustainable and wholesome diet for the effective treatment of Crohn's.
While she's not able to disclose the specific diet until her research has finished, Ms Fitzpatrick said the meals are freshly-made healthy food.
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Flare-ups are often connected to food - so a suitable diet could help, she said.
Ms Fitzpatrick aims to increase the academic rigour behind dietary treatments of Crohn's disease with her research.
She's searching for 60 willing participants with active Crohn's disease aged between 18 and 60 years to join the study for four weeks.
All meals are provided for participants who must be willing to travel to Melbourne's Alfred Hospital with an esky to collect the freshly-made and vacuum-sealed food over two study appointments.
Participants would need eat the study food only and have two blood, urine and stool tests and an intestinal ultrasound.
Anyone interested in participating should contact Ms Fitzpatrick at jessica.fitzpatrick1@monash.edu