Aussie woman with life-threatening Crohn's disease shares the 'hallmark symptom' that led to diagnosis

Jordan Lambropoulos - images with her ostomy pouch on display
Jordan, 24, has severe Crohn's and lives with an ostomy pouch. She is waiting for a possibly lifesaving bone marrow transplant. Photo credit: Jordan Lambropoulos / Via Instagram: @jordydarian

A young woman has candidly detailed the devastating realities of living with an "invisible illness" that has forced her to put her life on hold. 

As a teenager, Jordan Lambropoulos from Adelaide, South Australia, never imagined she would be fighting for her life at the age of 24. She had pictured herself with children and studying medicine at university, plans that have been put on hold for the foreseeable future as she battles a rare case of Crohn's disease: an incurable and chronic inflammatory bowel condition where the body attacks its own digestive system.

Speaking to 7News, Lambropoulos - who was diagnosed at the age of nine - opened up about the realities of living with the disease, which she refers to as an "invisible illness". 

"I feel defeated," she told 7News from the hospital. "My quality of life at present is diminished, but it takes hard times like these to truly appreciate the better times in life."

According to the outlet, Lambropoulos' case of Crohn's is incredibly rare, causing her to develop deep, painful cuts and ulcers throughout her mouth that make it difficult for her to eat, drink and speak.

"My diet is pretty restricted as all foods cause pain at this point," she told the outlet. "For the most part, I don't eat anything with 'colour' or 'wholegrains'; I stick to bland, plain foods like soups, rice, milkshakes and nutritional supplement drinks.

"I avoid certain foods, particularly legumes, vegetables, fruit and red meat because they are too hard for my bowel to digest and result in severe pain and intestinal obstructions - where my small intestine becomes blocked. This can become an acute emergency.

"I also avoid certain foods - crunchy, gritty things when my mouth and oesophagus are affected, as even opening my mouth and swallowing can hurt during these times."

The severity of her disease means Lambropoulos is no longer able to eat a full meal and instead can only stomach snacks and small bites throughout the day. She also cannot drink alcohol - which she says doesn't bother her - and hasn't had a standard drink for roughly five years. 

As Lambropoulos suffered symptoms of the disease from birth, she told 7News the impacts of living with Crohn's have become her "normal", adding she "never knew anything different".

At the age of three, Lambropoulos began developing severe ulcers in her mouth, which caused her face to swell so significantly, her lips would split and crack. Despite her parents' efforts to investigate the issue, doctors said they had no answers. 

Throughout her childhood, her parents also noticed her growth appeared "stunted" compared to her peers, and despite only stomaching small amounts of food, a young Lambropoulos continually complained of feeling full, bloated, and needing the bathroom after every meal. 

When Lambropoulos developed pneumonia at nine, a doctor suspected she was suffering from Crohn's after he noticed the ulcers in her mouth - leading to a diagnosis after years of being left in the dark. 

"It turns out the mouth ulcers were always a hallmark symptom - and were one of the things that stood out most to my paediatric gastroenterologist," she told 7News.

Lambropoulos noted that her mother - who is a coeliac - had long suspected her daughter was also allergic to gluten and had prepared her for the possibility of cutting the likes of wheat, barley and rye from her diet. However, the diagnosis of Crohn's was not one her parents had been expecting, although her father recalled his great-uncle had also suffered with the disease. 

Throughout adolescence, Lambropoulos spent much of her time in and out of hospital, making it difficult for her to maintain friendships at school. Eventually, she realised her desire to study medicine was not feasible, and she was forced to put her "dreams on the backburner".

"It is hard getting older and seeing people my age in their dream careers, when my study phase hasn't even started yet."

At 24, Lambropoulos said she has tried every conventional treatment for Crohn's in the book to no success, as well as undergoing multiple surgeries - including the removal of part of her bowel and recently, a revision of her colostomy, as the disease ate away at the skin surrounding her stoma. Now, she has had to come to terms with the severity and aggressiveness of her condition. 

"Learning to live with an uncontrollable, treatment-refractory disease that will cut my life short has been an incredibly difficult challenge," she told 7News.

The future isn't looking promising, with Lambropoulos' remaining hope lying in a potentially lifesaving bone marrow transplant, which she hopes to undergo in January. 

"At present, the disease is currently attacking my skin, lips, mouth, oesophagus, stomach, small intestine, rectum/perianal region as well as other extra-intestinal manifestations.

"Fortunately, a haematology team in Sydney has agreed to take on my case and perform a bone marrow transplant in order to completely 'reset' my immune system. It has been successful overseas, so we hope this will be the treatment for me."

As she awaits the transplant, Lambropoulos said she hopes her life-threatening diagnosis will raise awareness about the realities of Crohn's disease - and that it's far more than "spending a little too long on the toilet".

"Talking about these topics, talking about bowels and bowel diseases, could very easily save a life. I cannot stress the importance of keeping this conversation open, no matter how awkward it may be."