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Story #2 Chronic Illness

When I was 18 years old, I attended the University of Canberra. I had completed years 11 and 12 at a boarding school, and I was incredibly excited to start my university journey. I pursued a degree in Marketing and lived on campus during my first year. It was a time filled with excessive alcohol consumption and unhealthy eating habits. Eeeekkk! In my second year, I moved off campus with one of my best friends (who is still one of my dearest friends!)—we were boarding school mates as well. We still indulged in drinking, smoking, and surviving on 2-minute noodles. I’m horrified as a I look back.

However, during that time, I started experiencing health issues. I frequently had to visit the bathroom, was losing weight, and noticed traces of blood. It went on for about 10 months before I realised I should do something about it. Initially, I brushed it off because of my unhealthy lifestyle. I returned home to my parents, and I can’t quite recall how it all happened, but somehow, I managed to see a gastro specialist who conducted a colonoscopy. A few days later, I went to his office accompanied by my Dad, and that’s when I received the diagnosis of Crohn’s Disease. It didn’t make much sense to me at the time. There wasn’t much information available online, so the doctor gave me a brochure and prescribed some basic medications, including steroids. I was only 19 years old.

I went back to university and continued living a rather wild life. It took many years for me to adjust to the medications, understand their effects, and learn how they worked. I stumbled through it all (hello, steroid face) and simply carried on. I had episodes of illness, but those years don’t stand out as particularly terrible in my memory.

I got married at 22 and had my first baby at 24. The childbirth experience wasn’t great, and I believe that internally, some damage was done to me during that time. That set me on a path of abscesses and fistulas, which I’ll touch on later. Interestingly, when I became pregnant, my Crohn’s symptoms seemed to subside. Breastfeeding granted me about two years of respite from the illness. However, once I stopped breastfeeding, the symptoms returned. I was 26 years old, and it was then decided that I would participate in a drug trial for a medication called infliximab (still used today for some people) here in Wagga. The treatment went well until I fell pregnant with my second baby. Once again, during pregnancy, I experienced a period of wellness without any medication.

I quickly became pregnant with my third baby, but when I reached around 30 years old, my health began to decline. I tried infliximab again but had a terrible reaction. I’d built up some sort of resistance. Some years are a bit hazy in my memory, but I remember trying another medication called Humira (which is now widely used), only to have an ectopic pregnancy while having a Mirena IUD. This resulted in emergency surgery and the removal of one of my fallopian tubes.

Shortly after that, I participated in the TV show The Block, where I probably experienced my worst bout of illness. I lost 12kgs during the show, struggled to eat, and developed ulcers all over the back of my legs. I kept it all to myself at the time and focused on getting through the show.

Between 2012 and 2018, everything is a bit of a blur. I spent about six years battling recto-vaginal fistulas, with multiple setons in place. I dealt with incontinence, experienced septicaemia twice, had viral meningitis, and looked pale and sickly. I spent a significant amount of time in and out of the hospital. I was also a Mum to three little boys.

Eventually, a decision was made.

More on that soon!

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