“Silent warriors” – Lily’s story
Hi my name is Lily and I have Crohn’s disease. My journey to finding out I had IBD started in my final year of high school. I began to suffer some intense and concerning symptoms that a healthy 17 year old shouldn’t be experiencing. From soiling myself unannounced, to severe abdominal cramps, blood in my stool and constant tummy discomfort. I finally went to my GP who assumed I had contracted a virus or some sort of bug, but after my results came back all clear, they decided to refer me to a gastroenterologist to be safe.
At this stage I was wearing pads to school and living on gastro stop. I had been to the emergency thinking I had appendicitis because the pain was so bad. Incontinence while at school is truly such an awful and embarrassing experience. So after my first consultation with my gastroenterologist, we decided to do a scope just to be safe. I sat through my ATAR exams in extreme discomfort. I wore a pad to formal just incase and, the morning after graduating from high school and my formal celebrations, I began the prep for my first colonoscopy.
After my first scope I had a follow up appointment with my gastroenterologist. It was the day after my 18th birthday, and they confirmed that I had Crohn’s disease. We made a plan to move forward. I started on steroids to calm my symptoms down, then, after a month, I began the drug Azothyroprine, which is a commonly used and effective medication to help manage the disease in teenagers.
A few weeks after beginning the new medicine I became unwell. I was having an allergic reaction to the most commonly used Crohn’s drug in teenagers! I had a fever and was vomiting bile and blood. After a few early morning phone calls with online nurse services, my mum and I went to the emergency, and didn’t leave the hospital for a few days. I eventually got out the day before I was meant to be driving with my parents to Brisbane to begin university. Back to the drawing board in terms of my medication, with steroids to prevent further inflammation. When I finally got to Brisbane I went back to my gastroenterologist to organise a new plan.
After a few consultations we decided to do another endoscope and colonoscopy to see how my inflammation was going and to determine if I was ‘sick enough’ to be granted approval from the government to trial Stelara injections. Meanwhile, I had started a stronger steroid to help prevent worsening symptoms,called prednisone, and began the slow journey of having my face puff up. I qualified to trial the new drug. To start, they do an infusion in case of reactions. Then came the beginning of self injections every 8 weeks. One on each side of the belly button to keep me healthy.
Unfortunately I had a flare up shortly after that. I felt sick in the afternoon and by 9:30pm I was in a lot of pain. I called my mum, the Crohn’s Nurseline, a home doctor call out and then eventually an ambulance. We ended up going to hospital at 4:30am on a Wednesday morning. I was there for a few hours and finally discharged at 8am the same morning.
But it got worse.
So I ended up going back to hospital Wednesday night after losing control of myself on a friend’s couch (blood and all). I was in emergency for a day or two before getting transferred from one hospital, to another one, where my specialist was working. Due to the flare up, I got put on pain meds, a drip for steroids and an antibiotic just to be safe, and was having blood and stool tests to see how bad the flare up was. I had no energy, no appetite and was in a lot of pain.
I ended up being in hospital for a total of eight nights. I had another colonoscopy to check my scarring and then had an MRI and stomach x-ray. Because of the intense steroids they gave me to prevent further symptoms, my face blew up like a balloon and I ended up looking like a ‘fat wounded chipmunk’. Eventually I was discharged and returned home with my parents for a week to recover. It took me a long time to regain energy.
Since then, I am grateful to say I have not been hospitalised and I am responding really well to my current treatment plan. But what people who don’t have Crohn’s disease don’t understand is that my version of ‘well’ still means extreme fatigue every day, severe bloating and stomach pain after eating, the occasional blood in my stool and rushing to the bathroom (as a Crohn’s girl I always make sure I know where a bathroom is whenever I go out).
Living with Crohn’s disease is like playing a continuous game of roulette. You never know how much energy you’ll have, how many times a day you’ll need to go to the toilet, and how much pain you’ll be in. People with Crohn’s disease are silent sufferers — warriors who continue to push through every day no matter what their body is doing. They are people who sit through ATAR exams in nappies and on gastro stop, people who are determined not to let their illness stop them from ruining their dreams, people who endure so much daily just to keep going. I am proud to say I am one of those people who continues to battle this disease everyday.