The long road to a Crohn’s disease diagnosis
By Lauren Sette
I was 13 when I first started to feel unwell. It started with a “sore stomach”. How much more vague can a symptom be? I had acne since I was 9 (I started puberty early – lucky me!) so, the GP I was seeing at the time put me on minocycline in hopes of clearing it up. I started to see clearer skin around the same time my “sore tummy” started to show up, however I was too young and unobservant to perhaps realise that the medication was making me unwell. Evidently the GP I was seeing wasn’t making a connection either.
The pains would sometimes get so bad that my parents would have to rush me to the emergency department in fear that something sinister was going on. Doctors always did the same thing – ultrasound. And every single time it showed nothing, and I’d be given paracetamol (yes, at hospital for my horrific pain) and sent home with no answers.
I missed so much school it was affecting my academic performance (not that I cared too much honestly because I was so unwell and exhausted), however the judgement from teacher’s bothered me a lot as they branded me a “faker” when I’d go off to sick bay constantly or fall asleep at my desk from exhaustion.
Eventually my GP referred me to a gastroenterologist who performed a gastroscopy which confirmed I had reflux (not the answers I was looking for), so he prescribed me Nexium and sent me on my way. At no point were either the GP or Specialist wondering why a 13/14-year-old had chronic reflux and severe tummy pain.
So, fast forward through my teen years and I am suffering with stomach/tummy pain and intermittent nausea essentially all the time. It just became my norm. Emergency department visits at 3am also became a more frequent occurrence, although later on, at least they started occasionally giving me morphine for my pain, so that was something. But still, just an ultrasound here and there, showing nothing and then sent on my way again.
The pain was worsening and becoming more frequent as I got older. Around the age of 20 I started passing blood from my bowels when I’d go to the bathroom. Obviously, this freaked me out enough to raise it with my GP. At the time I was seeing an entirely new GP who had recently prescribed me a weight loss pill (remember this). When I told her I was passing blood, she assured me this was quite normal and something most people experience, so I just carried on living my life as best I could, chowing down my diet pills.
Around my 21st birthday in 2009, I was living on Buscopan for my tummy pain and Anagraine for relentless nausea because my pain and nausea by this stage were off the charts. Sometimes I couldn’t get out of bed, and I’d be stuck in the foetal position just begging for it to pass.
Eventually, in December 2009 my GP went on leave, so I was forced to see an alternate doctor. He was in a total panic when he examined me and sent me straight to the emergency department, with a referral stating that he suspected I had an acute appendicitis. Before I knew it, I was in surgery, having an appendectomy. When I woke up, I learned that I didn’t have an appendicitis, and that my small bowel looked extremely angry and inflamed, indicating inflammatory bowel disease, specifically Crohn’s disease and that I’d need a colonoscopy in six weeks to confirm, once I’d healed from surgery. But I was left wondering “what the heck is Crohn’s disease?!” I vaguely remembered reading it on the warning label of the diet pills I’d been taking as a contraindication. Evidently these ridiculous (and not to mention unnecessary) pills really amped up and exacerbated my symptoms (needless to say, I stopped taking them immediately). Then I of course made the horrible mistake of Googling, which pretty much had me writing my life off and making funeral arrangements.
So, you can guess what happens next. I had scopes and I was diagnosed with Crohn’s disease six weeks later. Apart from all the cycle of emotions one goes through at the time of such an intense diagnosis, I was also so mad at myself! Furious that I’d suffered for so long and allowed myself to become so ill because I’d foolishly trusted doctors so blindly, without question. I’d assumed that they always knew best, would never gaslight me and wouldn’t ever miss anything so serious. I also didn’t suffer from the tell-tale sign of Crohn’s at the time – diarrhoea. So, frustratingly IBD was never even remotely on anyone’s radar, even though I was suffering with chronic reflux, nausea and chronic abdominal pain from such a young age (surely that’d raise alarm bells from a gastro perspective, one would think).
It took time to gradually accept my diagnosis of a chronic, incurable illness, however thanks to my beautiful support network, my amazing gastroenterologist at the time and incredible lifesaving medicine I have been able to travel the world and achieve things I never dreamed possible. However, one thing I learned from my lived experience which is truly invaluable is that we know our own body’s and should always trust our instincts. When something doesn’t feel “right” don’t take no for an answer. Always use your intuition.
Thank you for reading x