I was diagnosed with Crohn’s disease, late October 2012 at the age of 51. Earlier the same year I had finally gotten around to doing my bowel screening test, sent out to me by the government when I turned 50. I got a call from my GP, saying the results were in and they wanted to undertake a colonoscopy as there had been some blood in my sample. So, in May 2012 I had the colonoscopy and was given the all clear. Apart from a couple of polyps that were removed, your bowel is great, nothing to worry about, come back and see us again in 5 years.
Two months later, I started to notice more frequency of needing to go to the toilet. Then by August 2012 I could barely make the drive from Mornington to the city, where I worked, without needing to rush to a bathroom. I started losing weight and becoming unwell. I got a referral to a gastroenterologist and saw him in early October. We had booked the colonoscopy in for after cup weekend, but as October continued on, I got sicker and sicker. Everything I ate felt like it was going straight through me, I was almost scared to eat. I’d lost 25 kilos. My partner called the specialist and had the colonoscopy brought forward to the last week of October.
When I got to the hospital’s day surgery, my partner checked us in and we sat waiting for them to take me through. A nurse arrived to start her shift. Walking through the waiting room she looked at me and said “are you ok?” I shook my head and my partner replied, no, he’s not good. She said she’d just go drop her bag in her locker and quickly change and be right back. True to her word in about 5 mins she was back and took me and my partner through into a waiting bay. I lay on the bed, while they did blood tests to make sure I’d be ok to undergo anaesthetic and got an IV of fluids started. Thankfully I was ok to undergo the procedure. When I came to and saw the specialist, he showed us photos of my bowels. The whole length of them were red, inflamed and ulcerated. They admitted me to the hospital for the weekend and commenced steroid treatment as well as continuing with fluids. On the Monday, the specialist said that he felt I would do better being transferred to a hospital that had better access to more treatments.
I spent the next 17 days in hospital. They started me on stronger steroids, which thankfully after a couple of days seemed to help. Otherwise, it would have meant surgery and quite possible a colostomy bag for the rest of my life. We trialled a few different drugs, but the one that seemed to have the best effect for me was infliximab, which I still go into day oncology every 8 weeks for an infusion of to help keep the disease at bay.
I had a number of health issues in the 12 months following my diagnosis and several more hospital stays, probably the most worrying was pulmonary embolisms. I’ve suffered from bouts of depression over the years. It became much worse following my diagnosis (Crohn’s and depression share a well-known link). I’ve also suffered with fatigue, and brain fog, just to name a few of the side effects of the disease.
My partner signed me up as a member of CCA when I got diagnosed and suggested that once I was well enough maybe I could facilitate support groups for them in the future as my role prior to getting sick was a training facilitator. At first, I said no, but as time went on, I decided to give it a go as I saw it as a good opportunity to learn and understand more about the disease and how it affected others. In 2014 I started 3 support groups for CCA; Frankston, Mornington and Capel Sound/Rosebud. Sadly, after a couple of years we had to cease Frankston due to lack of attendance, but Mornington and Capel Sound/Rosebud are still running to this day….