’I was 24 when I got a stoma, here’s what I want you to know’

Jordan Lambropoulos was 10 when she was diagnosed with a disease she’d never heard of and 16 when she got the news no teen wants to hear.

Jordan Lambropoulos was 10 when doctors first told her something wasn’t right.

It wasn’t a surprise. She’d had stomach issues her entire life, and had always struggled to put on weight, but it wasn’t until she was in hospital after a bout of pneumonia that tests revealed the truth.

Jordan, now 24, had Crohn’s disease, an incurable chronic inflammatory bowel disease that impacts the lining of the digestive tract.

It led to years of health struggles, culminating in major surgery when she was 16.

“I definitely feel like in some ways, I was robbed of a childhood and adolescent experience,” she told news.com.au.

“Basically, they said to me before I was being taken into theatre there was a chance I could wake up with a colostomy bag.”

A stoma – or colostomy or ostomy bag – which is when an opening is made on your abdomen to connect a bag that is used to collect bodily waste. It was a prospect that filled Jordan with dread.

“I said, ‘if you’re gonna wake me up with the bag, don’t bother waking me up’.”

Jordan battled through another several years, before finally giving in and getting a stoma in 2022, one of six surgeries she’s had this year.

It was a groundbreaking moment for the young Adelaide woman.

Jordan Lambropoulos was fitted with a stoma this year. Picture: Instagram/Jordan Lambropoulos

She said she isn't dating at the moment but wouldn't want anyone in her life who may have an issue with it. Picture: Instagram/Jordan Lambropoulos

She said content creators helped her feel comfortable with her stoma. Picture: Instagram/Jordan Lambropoulos

Despite once thinking a stoma bag would ruin her life, Jordan is now positive about it, and doesn’t see it as a barrier, even when it comes to dating, which is many people’s concern.

“People are a lot more accepting than you think – they’re just curious,” she said.

“And I think that’s why people stare – and it’s human nature to be curious.

“I think, at the end of the day, the people who are most conscious of ostomy bags are the people living with them.”

However, her health has meant that she needs to undergo a stem cell transplant in attempts to prolong her life. She has a Go Fund Me to raise money for the procedure.

She is now going through a fertility journey. Picture: Instagram/Jordan Lambropoulos

The treatment involves intense chemotherapy to prepare her body to accept the transplant, which would leave her infertile. As a result, Jordan is currently going through the process of freezing her eggs.

“It’s a really invasive and gruelling process if I’m honest, I’m just very grateful that the doctors and repro team involved have been so thorough and supportive,” Jordan said.

“They check in often, remind you of your appointment times and dates as well as offer emotional support. I don’t know if my body will ever be healthy enough to carry a baby, but as long as I have some eggs in the freezer - I am able to keep that particular door open if I decide to have children down the track.”

Jordan now shares her stoma stories on TikTok, in order to give back to others in the community who helped her feel comfortable with her changing life.

One of those content creators was Harrison Kefford, based in Melbourne. Harrison started experiencing uncomfortable gut pain six years ago.

He initially thought he had eaten something that didn’t agree with him, but soon he was in constant pain, rushing to the toilet where he would stay for more than 20 minutes at a time. He lost a lot of weight, wasn’t sleeping well and was frequently vomiting.

It all came to a head when he discovered he had blood in his stool, causing him to go straight to the emergency room.

He was referred to a gastroenterologist and neurologist, and he was diagnosed with Crohn’s disease.

“The initial diagnosis wasn’t really scary,” Harrison told news.com.au, adding he didn’t realise how serious Crohn’s was.

“I think I was just more worried I wasn’t going to be able to go out and have fun and drink alcohol – like a normal 20-something wants to do, and enjoy food.”

Harrison Kefford got his stoma in February. Picture: Instagram/Harrison Kefford

The 27-year-old underwent five different treatments in the years following his diagnosis in a bid to help ease the impacts of his Crohn’s, but he soon became fed up as nothing was easing his symptoms.

Then, his gastroenterologist suggested they could look at a stoma.

“I didn’t have like much time to really process as the whole thing came around so insanely fast,” Harrison said.

“The whole thing was just kind of crazy in the whirlwind and very emotional and very taxing, I suppose.”

Like Jordan, Harrison’s biggest concern was how a stoma bag would affect his love life.

Harrison has been open about dating and sex with his stoma. Picture: TikTok/Harrison Kefford

Harrison has been open about his stoma online. Picture: TikTok/Harrison Kefford

”The first thought I had when getting the bag was, ‘Who is ever going to want to love me again? Who is ever going to want to see? Will anyone ever desire me again?’,” Harrison said.

“I literally say this to most people, when they ask me like, ‘What is your most honest thought to do with having a bag’ it was what’s gonna happen when I pull down my pants or a girl pulls on my pants [during a sexual encounter] and they see this bag

“And it sounds kind of silly, but it’s a very raw and genuine thought. And that was like the core of my biggest stress that I had.”

Harrison began to post about his fears on TikTok, and immediately afterwards people rushed to his comments section to ease his fears.

Eventually, after becoming intimate with someone, Harrison revealed that he “spent the last eight months worrying about having sex for the first time now he has a stoma bag only for you all to be right about the entire experience – it doesn’t get in the way”.

Many were thankful for Harrison being so candid about it, as they were about to or had been through the same fears.

“I had a stoma for about seven months and was super nervous about this. I couldn’t believe how much it stayed out of the way,” one person said.

Another said: “I needed to see this so bad today. Got my urostomy bag in July and cry myself to sleep every single night with anxiety.”

Originally published as ’I was 24 when I got a stoma, here’s what I want you to know’