A NEW DIRECTION

When she was 16, Jordan Lambropoulos told her surgeon she'd rather die than wake up with a colostomy bag. Today - 10 years, countless operations and 14,000 Instagram followers later - she's proof that a colostomy bag is not the end. In fact, it can be the beginning of a whole new life

A lot of people have this distinct point in their life when they go from being healthy to suddenly sick, and then everything changes. But I was pretty much unwell from the day I was born.

We tested for absolutely everything you could possibly think of from when I was about four, but couldn’t find a cause. I was sick with a lot of things that could easily be passed off as other things. There was nothing really distinct except that I spent years on and off with these mouth ulcers – my mouth would be full of them and I’d even get them on the outside of my mouth. Not many people know that ulcers are a [major] symptom of Crohn’s disease.

It got to a point where teachers in school were asking my mum if I was eating, and they were bringing food to school for me. I have an olive undertone to my skin, but I went from looking healthy and vibrant to sickly pale with these dark bags under my eyes. If you think of [the comedian and actor] Pete Davidson: that’s the signature Crohn’s look.

It was only when I went to the doctor for pneumonia when I was nine or 10 that they found my iron levels were so low I shouldn’t have been functioning. My white cell count was also really high, so they sent me to a gastroenterologist thinking perhaps I had celiac disease like my mum. I fully expected to come out of that appointment doing a food-elimination diet, but instead he asked if I’d had mouth ulcers. Even though that seemed like my most minor symptom, it was the thing that made him go, “This is most likely Crohn’s disease.”

A lot of people think of Crohn’s as a bowel disease, but I would explain it as an autoimmune disease, and the bowel is collateral damage.