Small Girl, Big Tummy Issues!
Written by Jordan Lambropoulos
I get asked quite often what life was like when I was “normal”, but I never quite know how to answer that. I like to think of what life might have been like, but the truth is, life with Crohn’s disease has always been my normal. Being ill is all I have ever known.
There was no sudden onset of symptoms, no sudden point in which I fell ill – truth be told, I was sick from birth. It was simply life before diagnosis, and life after diagnosis. The only thing that came with my diagnosis was an array of medications and bowel resections.
By age 11 and living on a constant on-off cycle of prednisolone, weighing only 28kg until age 13, I was finally started on biologics. Infliximab was the first, until I failed that. Then came Humira, Stelara, vedolizumab and Remsima. My Crohn’s affects my mouth, oesophagus, stomach, small intestine, rectum, joints and my eyes aggressively. I spent most of my life in the hospital as a child and teen, teaching myself the high-school curriculum from the hospital.
Fast-forward to now, I am 24 and facing a grim prognosis with every chunk of my small intestine that is removed. I have never experienced clinical remission. My disease is currently treatment-refractory, and I am dependent on intravenous steroids. I recently started Cimzia/certolizumab which is not currently available for Crohn’s in Australia – just something we were able to get approved through the public health system due to the dire nature of my disease progression. I have had 3 open bowel surgeries (2 within 8 months of each other), and each time my disease flares I am inching closer to another resection. Each resection taking away crucial length of my bowel, a process that is not sustainable – because at such a young age having exhausted all medical options, I need to preserve every inch of my bowel so that I have enough left to last me a long life.
I have an incredible IBD Team who work around the clock to find new treatment options for me – and have reached out to a haematologists in Sydney specialising in stem-cell-transplants for autoimmune diseases. I will meet with them in a few days, and I am excited but nervous to enter this next phase of my treatment. I have always planned to study medicine once my disease is in remission, in the hope that perhaps one day I will be able to utilise my first-hand experience to make a change in the lives of young people with IBD.
So, to answer the question, “what was life like when you were normal?” I’d say my life was fascinating, fulfilling and full of adventure – just a little different to other people’s “normal”!