Total activity
The young people’s disease.
My disease.
I was 17, starting my final school holiday break ever. Year 12, the biggest schooling year. The foundation for my future. Abdominal pains had come and gone all year, without a trace of other symptoms. Doctors had thrown their hands in the air. I had put it down to stress… until the pain was unbearable. I travelled an hour out of town for a colonoscopy. The doctor said it would most likely be IBS (Irritable Bowel Syndrome, the non-cronic diagnosis which I would have much preferred). Fast forward to post-procedure… It’s Crohn’s disease.
But what is Crohn’s disease? I had never even heard of it before…
Well, it’s quite simply; an auto-immune disease which causes the inflammation of the bowel. The disease presents as flare-ups, which can consist of diarrhoea, constipation, bloody stool, abdominal pain, fever, loss of appetite, fatigue, weight loss, anaemia and other complications such as perforations of the bowel, ulcers and strictures.
My disease did not present any symptoms other than abdominal pains, until after about 8 months. The pains would last a few days, then disappear… Making diagnosis extremely difficult.
After the colonoscopy, my disease reached breaking point, I came down with fevers and the pains were worse than ever. Off to hospital… for the first time in my life. Luckily for me, the children’s ward wasn’t so scary.
5 days of antibiotics and tests and more tests, they finally found the cause of the pain. The disease had wreaked havoc in my colon, causing major inflammation and a perforation. I was taken in for surgery on the 2nd of October, the day before the AFL Grand Final. They removed 20cm of my colon, but luckily the surgery went well and I didn’t require a stoma bag.
At 17, before my year 12 exams, I don’t think I could’ve coped with any more. I missed out on my dance exam and had to apply for special consideration. My marks suffered, but I had more important exams ahead. I spend 1 week after hospital focussing on recovering. I managed to make an appearance at my muck-up day, but missed the farewell assembly in place of a follow up doctor’s appointment.
One week until my English exam. I spent that week going over everything I could and focussed solely on English. I had just one day after that to study for the maths part 1 and then a weekend to study for maths part 2. I didn’t finish either maths exams. Luckily, my next two exams were two weeks away and I had plenty of time to catch up for them, they were my two highest scoring subjects in the end.
At the end of exams, it was time to start trying the medication that would hopefully stabilise my disease for years to come. Imuran. An immune-suppressant that has a myriad of possible side effects… So you go from one tablet for two weeks, then two, then three. The first two were fine, no major symptoms. The third step up was horrible. I had lost so much weight over the 6 months prior, the third dose was too much. Unfortunately I went up to the third dose just before New Year’s Eve, which involved a camping trip over two hours away from home. Nausea, fevers, loss of appetite, generally feeling terrible… I had to come home and stop the medication for a week and then go back to the lower dose. Luckily this dose worked.
With my medication working for me and no huge complications, I was on my way to starting University and commuting 3 times a week. I think I spent that first year with a false idea of what my disease would be. I believed that I would be able to live just like anyone else. But that’s simply not true. I didn’t dance for a year, I was depressed, I had no one that understood what I was going through.
This a shot of the winter sunrise on one of my train rides commuting to Uni.I ended up changing my course to study closer to home, I moved in with my boyfriend and I started to build a consistency in my life that finally saw the depression fade away. I studied hard, I enjoyed Uni and I enjoyed working and I danced again. I realised that my disease is there, it always will be… but I can work with it and it doesn’t have to be an unbreakable barrier.
Since being diagnosed, I have been in excruciating pain, had endless nausea, constipated for weeks on end, felt alone, felt isolated, felt scared, felt like it wasn’t worth it.
But I’ve also travelled for Uni, been to the snow for the first time, taken up dancing again, scored Distinctions and High Distinctions in my classes, I have been inspired, motivated and determined. I’ve felt love, felt like the world is full of possibilities. I’ve come to know… that it is all so worth it.
There is so much more that happens that no one hears about, it’s the reason I want to share my story and continue to share my stories and connect to others with their own stories…
Because Crohn’s disease is an invisible disease. It’s invisible to others.
Unless we talk about it.
