Young woman, 24, going through IVF and living with Crohn's disease

Young woman, 24, going through IVF and living with Crohn's disease

Young woman, 24, living with ‘invisible disease’ shares her emotional IVF journey weeks before crucial surgery leaves her infertile

  • Jordan Lambropoulos was diagnosed with Crohn’s disease when she was nine 
  • Now 24, doctors have ‘exhausted every available conventional therapy’
  • She’s undergoing IVF and will be left infertile from bone marrow transplant
  • Jordan said the process has been ‘very emotional’ and few eggs were collected 
  • She had to inject herself with hormones and only few eggs were collected 
  • ‘It’s been really emotional and overwhelming, but I’m grateful,’ she said  

In a race against time, a young woman is undergoing two ‘incredibly invasive’ rounds of IVF for egg collection at just 24 before she’s left infertile.

Jordan Lambropoulos, from Adelaide, told FEMAIL IVF is required because she’s having a bone marrow transplant as a ‘last resort’ to combat her Crohn’s disease.

At first glance you wouldn’t know Jordan 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.

While she’s only in her mid-20s, Jordan knows she wants to have a family one day and is disappointed she won’t be fall pregnant naturally due to the bone marrow treatment. 

Infertility and Crohn’s aren’t normally linked, but in Jordan’s case having children will be difficult.  

Jordan Lambropoulos, from Adelaide, (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

The 24-year-old will travel to Sydney next month to have bone marrow treatment that will leave her infertile. In the meantime she’ll have two rounds of IVF to retrieve as many eggs as possible. Infertility and Crohn’s aren’t normally linked, but in Jordan’s case reproduction will be difficult

Jordan started IVF three weeks ago undergoing Oocyte Retrieval and preservation – basically egg freezing to use when she’s ready to have a baby – and the treatment which involves injecting her stomach with a ‘maximal’ dose of hormones each night for two weeks.

This helps her ovaries to mature a ‘much greater number of eggs’ during her cycle, which were then retrieved in day surgery.

‘Fertility treatment is such an invasive process especially at such a young age and in such a tight timeframe like this,’ Jordan said.

‘It’s been really overwhelming’.  

She would inject herself every night between the hours 7pm and 9pm and needed to keep on top of medications. 

‘As I already have low ovarian reserves, I was given a maximum dose of the hormones but still only had five eggs successfully frozen – three were mature, two immature but still at a stage where they were able to be frozen,’ she continued. 

‘For someone my age, we were hoping for 10-15 eggs.’ 

Due to this low number, she’ll undergo another round of egg retrieval next month before she heads to Sydney to begin her transplant process. 

‘Each egg only has about an eight per cent chance of a pregnancy,’ Jordan said, and the eggs will only be used when she’s ready to have kids. 

At first glance you wouldn’t know Jordan 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

Jordan started IVF three weeks ago undergoing Oocyte Retrieval and preservation – basically egg freezing to use when she’s ready to have a baby – and the treatment which involves injecting her stomach with a ‘maximal’ dose of hormones each night for two weeks

Over the last six months alone she has had nine surgeries due to Crohn’s and suffers from regular abdominal pain. 

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

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

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.

‘Each egg from IVF only has about an eight per cent chance of a pregnancy,’ Jordan said, and the eggs will only be used when she’s ready to have kids. So far the IVF has been a ‘very emotional’ process for Jordan who says it’s like she has ‘PMS x 1000’

So far the IVF has been an emotional process for Jordan who says it’s like she has ‘PMS x 1000’.

‘I find myself crying about the smallest things, the hormones just heighten everything emotionally. It’s also really hard seeing others having babies, knowing that I wanted children already,’ she said.

She’s also had a number of side effects, including skin breakouts, bloating, and menstrual-like pain.

‘I still find it difficult to leave the house as my skin makes me feel so self-conscious and sad,’ Jordan said.

‘My health has been pretty poor during the process, and is probably the reason my egg retrieval number as on the low side. Things won’t improve until after my transplant though, so we have to work with what we’ve got. And that’s okay, I’m okay with that.’ 

Jordan has come to terms with the fact that she’ll be infertile in less than one month and is ‘grateful for the opportunity to freeze some eggs’. 

‘I don’t know that my body will ever be able to carry a pregnancy anyway, my abdominal trauma is insane from dozens of invasive surgeries. But like I say, there are so many options these days (to have kids) so I am very lucky,’ she said.

‘I don’t know that my body will ever be able to carry a pregnancy anyway, my abdominal trauma is insane from dozens of invasive surgeries. But like I say, there are so many options these days (to have kids) so I am very lucky,’ she said (pictured in hospital aged 16)

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

When she was younger Jordan lived a ‘normal life’ as much as she could but over the years her symptoms from Crohn’s 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’

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.’

Now she’s not only raising awareness about Crohn’s via her social media accounts, but also IVF. ‘I think there’s a real stigma around bowel diseases because people don’t want to talk about it – but they should!’ Jordan said

In one year Jordan aims to study medicine to become a surgeon and hopefully assist those suffering with the disease. After her IVF and bone marrow treatment she’s wants to travel to France and Canada 

Now she’s not only raising awareness about Crohn’s via her social media accounts, but also IVF. 

‘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. After her IVF and bone marrow treatment she wants to travel to France and Canada. 

If you’d like to contribute to Jordan’s GoFundMe page, click here. 

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