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What is Crohn's disease? Young woman shares her struggle battling an incurable bowel disease

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At first glance you wouldn’t know Jordan Lambropoulos has been unwell for the majority of her life, suffering from severe abdominal pain and cuts in her mouth.  

She was diagnosed with Crohn’s disease – an incurable inflammatory bowel disease – at just nine years old and for the last 10 years doctors have ‘exhausted every available conventional therapy’ to try and help her.

Over the last six months alone the 24-year-old has had nine surgeries and this week she met with a specialist to discuss IVF to discuss fertility options. 

‘I can’t remember a time when I felt healthy – before I was diagnosed doctors thought I had pneumonia,’ Jordan, from Adelaide, told FEMAIL.

Jordan is open about her disease on Instagram to encourage other young people to voice their symptoms, regardless of how ’embarrassing’ it might be.  

Jordan Lambropoulos (pictured) suffers everyone from the 'invisible illness' that is Crohn's disease. The inflammatory bowel disease isn't curable and Jordan was diagnosed when she was just nine years old

Jordan Lambropoulos (pictured) suffers everyone from the ‘invisible illness’ that is Crohn’s disease. The inflammatory bowel disease isn’t curable and Jordan was diagnosed when she was just nine years old

Over the last six months alone the 24-year-old has had nine surgeries and this week she met with a specialist to discuss IVF to discuss fertility options

Over the last six months alone the 24-year-old has had nine surgeries and this week she met with a specialist to discuss IVF to discuss fertility options

'I can't remember a time when I felt healthy; before I was diagnosed doctors thought I had pneumonia,' Jordan, from Adelaide, told FEMAIL (pictured in hospital aged 16)

‘I can’t remember a time when I felt healthy; before I was diagnosed doctors thought I had pneumonia,’ Jordan, from Adelaide, told FEMAIL (pictured in hospital aged 16)

Because she was so young Jordan knew ‘nothing about Crohn’s’ or the severity of the condition but remembers her mum crying after being told the awful news.

‘I had no idea what to expect at that point and at first it was quite overwhelming but I put it to the back of my mind,’ she said. 

While Crohn’s disease isn’t usually fatal, it’s incurable and can cause life-threatening complications if left untreated. 

The disease increases the risk of bowel cancer due to the ongoing inflammation of the intestines, so close management is key.

‘The form of disease I have is considered aggressive and I’ve never been in remission,’ Jordan said.

She also isn’t working or studying because she is always in and out of hospital.   

‘I think there’s a lot of misconceptions about Crohn’s, and it can definitely be life-threatening if not treated properly.’ 

What is Crohn’s disease?

Crohn’s disease is an inflammatory bowel disease that causes painful swelling and redness (inflammation) inside the digestive tract

Common symptoms include diarrhoea, abdominal pain and cramping, reduced appetite and weight loss

Symptoms tend to vary between individuals and come and go over time, as the inflammation flares up then eases again

Source: Healthdirect

Jordan lived a ‘normal life’ as much as she could but over the years her symptoms worsened.

At age 16 in 2014 she had open bowel surgery to ‘clean’ the bowel and remove any infections. 

She remained in hospital for 10 days following because her bowel had to be ‘woken up’.

Unfortunately despite the surgery, the disease returned within four weeks and she needed an ‘acute bowel obstruction’. She then had emergency surgery to remove another section of her colon. 

At age 21 she also had a bowel resection then in 2020 she had another two open bowel surgeries to remove part of her small bowel that had become ‘too thick’ from the inflammation. 

‘It’s been an ongoing battle,’ Jordan said. 

At age 16 in 2014 she had open bowel surgery to 'clean' the bowel and remove any infections. She remained in hospital for 10 days following because her bowel had to be 'woken up'

At age 16 in 2014 she had open bowel surgery to ‘clean’ the bowel and remove any infections. She remained in hospital for 10 days following because her bowel had to be ‘woken up’

In 2020 she had another two open bowel surgeries to remove part of her small bowel that had become 'too thick' from the inflammation (pictured at 21 in ICU after a bowel resection)

In 2020 she had another two open bowel surgeries to remove part of her small bowel that had become ‘too thick’ from the inflammation (pictured at 21 in ICU after a bowel resection)

She also lives with a colostomy bag outside her abdomen, which she had to carefully hide under her clothes. 

‘I have an ability to deal with intense levels of pain now – I have severe abdomen pain, issues with my colostomy bag, pain in the rectum area and agony from 1,000 cuts in my mouth.’  

Today Jordan maintains a ‘bland diet’ and doesn’t drink any alcohol. 

‘I stick to foods that are incredibly bland, like potatoes, milk shakes, cheese and crackers, chicken, limited red meat and coffee,’ she said. 

‘I have to always steer clear of legumes, wholegrains, vegetables, and I don’t eat fruit because it hurts my mouth. 

‘When I’m not feeling as sick I may enjoy the odd cocktail once a month but for the most part alcohol just makes my symptoms worse.’

'I think there's a real stigma around bowel diseases because people don't want to talk about it - but they should!' Jordan said

‘I think there’s a real stigma around bowel diseases because people don’t want to talk about it – but they should!’ Jordan said

She now has to have her colon ‘cleaned out’ every four to six weeks to remove any infections. 

In January she’ll travel to Sydney to have a bone barrow transplant, which has been a ‘last resort’ type of treatment for Jordan. 

‘Doctors have tried everything to keep this disease at bay, but nothing has worked. It’s as if my body always becomes used to the treatment it’s give, almost like I’ve become immune to it,’ she said. 

‘So next year I’ll start an intense chemotherapy regime for a period of time before the bone marrow transplant. It’s essentially designed to kill every cell in the body – whether good or bad.’ 

Because of this Jordan will likely look into freezing her eggs as she wants to be a mum someday later in life.

In one year Jordan aims to study medicine to become a surgeon and hopefully assist those suffering with the disease

In one year Jordan aims to study medicine to become a surgeon and hopefully assist those suffering with the disease

‘I think there’s a real stigma around bowel diseases because people don’t want to talk about it – but they should!’ Jordan said.

‘As a young woman living with the disease it can be really dehumanising and it constantly makes me feel dirty or unwanted. 

‘But from all of this I’ve come to find my voice, my purpose, and want to educate others living with inflammatory bowel disease.’ 

In one year Jordan aims to study medicine to become a surgeon and hopefully assist those suffering with the disease. 



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