SA woman living with Crohn’s disease says it makes her feel dirty or unwanted

Jordan Lambropoulos thought she was suffering from coeliac disease. Instead, the young SA woman has been diagnosed with Australia’s leading invisible disease.

Over the past six months alone, Jordan Lambropoulos has had nine surgeries.

At first glance, you wouldn’t know the 24-year-old has been unwell for a majority of her life, suffering from Australia’s leading invisible disease – Crohn’s disease.

At just nine years old Ms Lambropoulos was diagnosed with the incurable inflammatory bowel disease and for the past 10 years doctors have “exhausted every available conventional therapy” to try to help her.

“(Crohn’s disease) is all I’ve ever known,” Ms Lambropoulos, from Adelaide, told the The Advertiser, from her hospital bed.

“I group my life into two parts, pre-diagnosis and post diagnosis but it wasn’t like I suddenly felt ill or anything like that — I’ve always been the way that I was, the symptoms I now know are symptoms of Crohn’s disease were things that I basically have had since birth.

“There was never a normal beforehand, this has always been my normal.”

The young woman is open about her health struggles on Instagram, encouraging other young people to openly discuss their symptoms, regardless of how “embarrassing” it might be.

When Ms Lambropoulos was diagnosed she knew “nothing about Crohn’s” or the severity of the condition but says she remembers her mum crying after being told the devastating news.

“I knew that it wasn’t great, it wasn’t a good thing, but I didn’t know how bad it would it but I just put it into the back of my mind,” she said.

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

Having the disease increases the risk of bowel cancer due to the ongoing inflammation of the intestines.

For Ms Lambropoulos, her form of Crohn’s diseases is considered aggressive and she has never been in remission.

Within the first year of her diagnosis she was place on intensive medication most Crohn’s sufferers take years to be given.

The disease has meant she is hospital-bound so often, studying or working is out of the question.

While Ms Lambropoulos attempted to live a “normal life” as much as she could, her symptoms worsen over time.

Jordan Lambropoulos was diagnosed with Crohn's disease when she was nine. Picture: Instagram.com/jordydarian

When she was 16, she had open bowel surgery to ‘clean’ her bowel and remove any infections.

The surgery kept her in hospital for 10 days but despite the efforts, the disease returned within four weeks leaving Ms Lambropoulos requiring emergency surgery to remove another section of her colon.

Another five years later, at 21, Ms Lambropoulos had a bowl resection and another two open bowl surgeries to remove part of her small bowel that had become “too thick” from inflammation.

“It’s been an ongoing battle,” she said.

Jordan Lambropoulos is living with Crohn's disease. Picture: GoFundMe

The 24-year-old lives with a colostomy bag outside her abdomen, which she hides under her clothes.

“I have an ability to deal with intense levels of pain now. I have severe abdomen pain, issues with the colostomy bag, pain in the rectum area and agony from 1000 cuts in my mouth.”

Today, Ms Lambropoulos has a “restrictive diet” and doesn’t drink any alcohol.

“Most of the time just getting food down is a struggle,” she said.

Ms Lambropoulos sticks to potatoes, milk shakes, cheese and crackers, chicken and limited red meat and coffee.

Certain foods irritate her mouth ulcers like legumes, wholegrains, vegetables and fruit.

Seeing her friends and family live without the health struggles she has to deal with makes Ms Lambropoulos “envious” at times.

“I do see other people out there living life and yes I do envy that but then at the same time I also recognise that just because in my life, my struggle is my health I know that everyone else has struggles they are overcoming whether that be their health or something else,” she said.

“Living with a disease that has the potential to shorten your life makes you put into perspective what you do have in life.

“Being so restricted, in terms of being hospitals all the time and what not, you become grateful for the small things in life, the little things, like sitting outside and having the sunshine on your face,” she said.

Ms Lambropoulos has her colon "cleaned out" every four to six weeks. Picture: Instagram.com/jordydarian

Ms Lambropoulos now has her colon “cleaned out” ever four to six weeks to remove any infections.

In January she’ll travel to Sydney to have a bone-marrow transplant, which has been described as a “last resort” treatment for Ms Lambropoulos.

“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 regimen for a period for time before the bone marrow transplant. It’s essentially designed to kill every cell in the body, whether good or bad. Your immune system is reset to zero.”

While Ms Lambropoulos is excited for the outcome she is “petrified because it’s an incredibly intense treatment”.

Because of her health struggles, Ms Lambropoulos will likely consider freezing her eggs as she wants to be a mum some time in the future.

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

“This (Crohn’s disease) is not just a pooing disease, it’s so much more than that, it’s so much more widespread in the body and that’s not something that people should feel ashamed to talk about.

“It’s not something that should stigmatised because at the end of the day, it’s a disease that we didn’t choose to be given — nobody chooses to live with a bowel disease

“The best that we can do is to talk about it and raise awareness,” she said.

Ms Lambropoulos dreams of one day being able to study medicine so she can become a surgeon and hopefully assist those suffering with the disease.

To help with the costs of heading to Sydney for her surgeries, Ms Lambropoulos’ friend, Chloe Robinson, has organised a GoFundMe page.

Originally published as SA woman living with Crohn’s disease says it makes her feel dirty or unwanted