A new mindset

My Crohn’s journey began later than many, just before I turned 32. While on an out-of-state work trip, I noticed I was passing blood and mucus, and I thought I’d picked up a bug or was possibly reacting to dairy.

Years prior, my sister had been diagnosed with ulcerative colitis, but I didn’t put two and two together. My symptoms quickly worsened and following a scope I was diagnosed then sent home with steroids. A month or so on, my symptoms got dramatically worse: in the bathroom 20 to 30 times a day, quickly losing weight. I barely had the energy to get up. I had to leave my job as I ran out of sick leave and the company I worked for wouldn’t allow me to take leave without pay.

One day – about a month after my diagnosis – I had a horrible bout of vomiting and diarrhea and passed out in the bathroom, ending up in emergency. It was a scary experience. Several weeks prior I was interstate at a football grand final and now I was laid up in a hospital bed.

I was in hospital for about two months and one day woke up to surgeons surrounding my bed talking about an ileostomy. I had no idea this was even a consideration. I thought this was a temporary illness – now they were talking about a very permanent treatment. I assumed this was a sickness that I’d just recover from as normal, and that would be it. If it wasn’t for the care of my doctor and IBD nurse, now friend, this would have been a lot harder to deal with.

During this time my anxiety levels spiked dramatically. It’s a story all IBD patients know well; I scanned everywhere I went to know where the bathroom was, constantly had to cancel on people. Additionally, I’d developed a bad relationship with food as not only was I on a very restrictive diet, but I also knew food-in means food-out, and that meant pain.

I thought more and more that a stoma would be a good solution and chatted with the IBD team. The idea was to give me a diverting ileostomy, intending to calm things down and stop food passing through the inflamed area. My friends and family were amazing throughout this time, taking me to and from hospital, being there when I woke up; doing the grocery shopping, making me meals. I also can’t express how much having my dog Sumo with me – alone and sick in the house – kept me company and kept me sane.

The day came and I went in and had the operation. I hadn’t had an operation before – plenty of little procedures, but overall, nothing major. And then I woke up with a bag! It was a little bit of a shock, even though I knew it was coming. But I took comfort that it was to allow my bowels some recovery and hopefully would be reversed. Unfortunately, very quickly the abscesses and fistulas got worse and worse, causing more visits to the hospital and eventually a vacuum dressing. Now this was something that was hard to take; a vacuum dressing involves a machine that adheres to your bum and removes any fluid to stop infections. My gut was still incredibly inflamed, so even though all my waste was going into the bag I still needed to go to the toilet to pass blood and mucus.

Not long after this, I moved to Queensland to be closer to family. Over the next six or seven months, I progressively got worse, needing to fly down from Hervey Bay regularly to receive treatment. I was on some incredibly heavy medication and my weight dropped considerably. To be honest, I don’t remember a lot of that time, due to my gut not working. I needed to be on transdermal pain patches, which hit me pretty hard. I was only really able to walk the dog maybe 10 minutes a day. And I had to sit down for easy daily tasks like making toast.

My IBD team in Brisbane were amazing – they helped me to understand that permanent surgery was really the only option. The dilemma was that I was scared and holding on to outside hope or possibilities. What if tomorrow a cure was found? What if a new drug was released the week after my surgery?

Over the course of a month or so, I concluded that if these what-ifs occurred, I was ok with that. And we scheduled in the surgery. Due to the severity, the surgery was an incredibly long and arduous 12 hours. I had a full proctectomy, removing my lower colon, rectum, etc – with a permanent colostomy in place – and my middle abdominal muscle was used as a reconstructive flap. I spent another month in hospital, only being able to lay down so as to not pressure the muscle flap. Slowly my gut was healing, which was amazing. But the abscesses had done so much damage that while the muscle flap stayed intact, the outer wounds broke open. Once again, the old vac dressing came out! This did not do the job, however, and I can’t tell you the amount of pain involved in removing the adhesive to re-attach. WOW.

My doctor recommended hyperbaric oxygen therapy as well as wound care. Over eight weeks, I went up to the Royal Brisbane Hospital and spent two hours in the tank. And it worked. After nearly three years, things started to really look up. I engaged with an exercise physiologist and a personal trainer, who started to get me healthy and mobile again. After nearly a year of light exercise and lots of rehabilitation, I was able to get back to a sense of normality!

I enrolled in TAFE and started training in Brazilian jiu-jitsu (BJJ)! While a lot of this was a pretty rotten time, it has really opened my eyes to what life is all about. Before, I was just plodding along, working a job I hated and not really living. Now, the experiences I have endured have opened my eyes to what is important. Some medical professionals told me to mourn my old life, to accept that parts of my life would never be the same, that there would be things I couldn’t do. I refused to accept this – I joined a BJJ gym and thankfully ended up with one of the humblest, most patient gyms and coaches I could have asked for. For the first 12 months or so, I had to train light and be careful. After that time, though, I was allowed to train hard. In the last 12 months, I’ve competed a handful of times, winning my most recent competition. Not only am I happier than before this all began, but I’m also fitter, stronger and more fulfilled.

For a while I saw my illness and especially my colostomy bag as a burden or something to be embarrassed by. I don’t feel that way anymore – in fact, it restored my life and has allowed me to have a better life than I knew possible.

I can’t thank my support networks enough. My family, friends, doctors, therapists, trainers and coaches. And even my newer friends, who accept me as is, with love and care.