Behind The Spoonie Society



As it's Crohn's and Colitis Awareness Month, we had the chance to talk to Jordan Darian Lambropoulos, Australia’s First Crohn’s Disease Stem-Cell Transplant Recipient. She shared with us her story and answered questions about her journey.


When were you diagnosed with Crohn’s disease?

I was diagnosed when I was 9 years old, but was symptomatic from birth. A lot of symptoms we passed off as being ‘normal’ because that’s how I’d always been!

There was never really a point in my life where I suddenly became ill, I guess all of the symptoms I was experiencing were all I'd ever known and my only sense of normalcy. I was always an unsettled, colicky baby with reflux - I guess that's where it all begin, and I never knew anything different. It wasn't until my diagnosis that it occurred that these things may not be 'normal'. 

I was severely underweight my entire childhood and was unable to gain weight, but I come from parents with a slim build so we just thought I'd 'fill-out' through puberty. Just before my diagnosis, my growth started to become stunted and my peers were all growing taller than me despite me previously being on the taller side. From the age of 3, I had these severe mouth ulcers that made eating, drinking and talking difficult - my entire lower face and mouth would swell beyond recognition, and my lips would split and crack from the swelling. Unfortunately, no specialist was able to determine the cause until my Crohn's diagnosis. 

Another symptom I experienced was feeling full and bloated after small amounts of food, and having to rush to the toilet soon after eating. I was always tired and ''feeling sick', but these were things that most kids experience and can sometimes be mistaken for laziness.


What symptoms do you experience on a regular basis?

At present, I’ve just undergone a stem cell transplant so it’s hard to differentiate my recovery symptoms from that and my Crohn’s symptoms - but for the most part I have experienced intense pain for most of my life. 

I continued to get mouth ulcers and ulcers all throughout my digestive tract (oesophagus and stomach included) meaning anything and everything I ate or drank would hurt from the moment it entered my mouth downwards. 

I had Crohn’s around my stoma which caused a great deal of pain, and due to constant structures causing narrowing in my small bowel, pain from daily bowel obstructions were very much a thing!


How do you manage your symptoms?

Usually, I would use a local anaesthetic to numb my mouth so I could eat - and for the belly pain, I just learnt to deal with it. Most days I could function fairly normally with a bowel obstruction and that just came down to having learnt to deal with it after a long time!


Can you tell us about the surgeries related to your Crohn’s disease?

I have undergone a number of open bowel resections (where a segment of the bowel is surgically removed via open surgery) since age 15 and in 2020 alone had 2 feet of my small intestine removed. Since April last year, I have undergone 11 or 12 surgeries. Most have been on perianal fistulas - where I have 2 permanent seton drains in place in my rectum at present. 

I also underwent colostomy surgery in August of last year, and in November underwent a revision of my colostomy as my Crohn's unfortunately attacked and ate away at the skin surrounding my stoma. I then had another bowel resection in late March this year which presented a bit of a setback for my stem cell transplant which I was due to be flown to Sydney for. 

Essentially, I have failed every conventional therapy available and short of a stem cell/bone marrow transplant (that I recently underwent, 13 days ago) my doctors were left scratching their heads.


How has Crohn’s disease affected your quality of life?

When I was younger, I guess the whole thing was a bit foreign to me and it impacted my quality of life a little bit more as I had less control over my life. As an adult, technically it has impacted my quality of life significantly more but I have more control over my life now so am able to find little workarounds. Pre-transplant (too hard to guess what it’ll be like post, as I’m only Day +12 and have a very long way to go), I was in pain and unable to eat or enjoy food. I became unable to work, unable to study. 

I have always wanted to study medicine - and am determined to do so very soon, but Crohn’s has prevented me from doing so. There were times when my mother or my grandmother had to help me do the basic things like getting myself dressed. I was spending more time in the hospital than at home - with my admissions being 30+ days at times. While it has impacted my quality of life in every aspect and essentially diminished it, I still find joy in the areas of life I do have control over!


Have you made any changes to your diet since being diagnosed with Crohn’s disease?

I guess I’ll answer from a pre-stem cell transplant perspective as my diet has changed a lot over the years but at present it’s fairly normal. My diet for years was pretty restricted as all foods caused pain - and oftentimes lead to intestinal obstructions. 

For the most part, I don't eat anything with 'colour' or 'wholegrains', sticking to bland, plain foods like soups, rice, milkshakes and nutritional supplement drinks. Every now and again I say 'screw it' and allow myself to enjoy a nice meal though. Speaking of meals, I can't eat a full meal anymore these days, I can only graze throughout the day. I’m hoping that post-transplant this will be something that I no longer have to deal with though, at present, I can eat just about anything but also don’t want to push it!


How do you cope with the emotional impact of living with Crohn’s disease?

I used to really dwell on it, nowadays I kind of just shut off to the emotional impact. One of my biggest helps is taking care of my mental health - and if that means I get in my car every morning at 6 am in my pyjamas to get a McDonald’s coffee and drive by the esplanade to keep a routine, then so be it. 

Also, having a very strong emotional support network that consists of my family & friends. I’m very lucky to have my mum, my grandmother and my younger sister as my best friends in life - the people who I can count on the most, and that in itself makes the emotional aspect easier.


What kind of medical treatment have you received for Crohn’s disease?

Since diagnosis, I have spent the last 15 years on immunosuppressive medications, and on and off high-dose steroids. I was put onto biologic therapy within a year of diagnosis - which these days, can take people years to access, so it was evident how aggressive my disease was from such a young age. I have since tried Exclusive Enteral Nutrition, nasogastric feeding, chemotherapy tablet and injections, as well as over 7 biologic immunomodulator therapies. 

Biologics are heavy medications, but my body has failed all of those available in Australia, and an additional one granted under special circumstances. The only option for me eventually became a stem cell transplant, because despite being steroid dependent, steroids eventually started losing their effectiveness. Meaning the disease was running rampant, causing irreparable damage with no mechanism to stop it.


Have you found any alternative therapies or treatments that have helped you manage your symptoms?

I haven’t found any alternative therapies as such, but I will say that taking good care of your emotional well-being and mental health plays a big role in the disease. While it can’t physically make you better, it can certainly make your outlook on life that little bit easier.


What advice would you give to someone who has recently been diagnosed with Crohn’s disease?

I would tell other young people recently diagnosed with Crohn's Disease to rise above the stigma society has perpetuated around the topic of 'bowels', and to never let their disease define them. Our disease already takes up so much of our time, why should it have to take away our hopes and dreams too?


Thank you Jordy for taking your time to talk to us! Let’s #FlushTheStigma around inflammatory bowel disease this May and spread awareness.

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