On the 17th of September 2013, I made the decision. I’d had enough. I was sick of feeling sick all the time. I was sick of the pain, the anxiety, the daily struggle. I had grappled over this decision for months. Should I keep fighting? Should I persist? I know others who have put up with far more than me for far longer. Was I being weak? Was I being hasty? I had managed up until this point, but I was miserable. Was it really even a decision? To me, it felt like I had run out of options. Not for lack of trying. The last colonoscopy my gastroenterologist did he couldn’t even get a clear picture of my bowel. As soon as he wiped away the blood, within seconds more would appear. There might be new drugs down the track, but who knows when they might be available. It was now at the point, my gastro said, that there were other risks in continuing on as I was.
A week later, I was back in the familiar surroundings of St George Private Hospital ready to have it all removed! It was a huge decision. There was no turning back from this one – a pan proctocolectomy with end ileostomy. It was permanent. I already knew what living with a temporary ostomy was like, but this was something that I would have for the rest of my life, until I was hopefully old (and quite possibly senile!). After 5-6 hours on the operating table, I woke up heavily sedated with Ketamine and Morphine, minus a few pretty major body parts! Basically the whole shebang was taken, except for my small intestine, which is now redirected through a stomal opening on my abdomen where I poo into a nifty little bag, requiring regular emptying and changing.
I know this sounds crazy, but when I woke up from surgery, as well as my large intestine, rectum and anus being gone, it was if all that badness, all that inflammation and that awful sick feeling that had become so normal for me had gone too. I could feel – it was no longer there! I realise and understand that Crohn’s is a chronic condition and there is a chance that it can reappear anywhere along the digestive tract at any time – but for now, the bits of me that the Crohn’s had attacked were no longer there, and for the first time in a long time, I felt well. And let’s face it, there is not much left for the Crohn’s to attack again in the future – so steer clear of me I say!!
A NEW ME
Although for the first few weeks I felt like I’d been hit by a bus (which is pretty normal after any major surgery), within a week or so I was back home, and well on the road to recovery. After around 6 weeks I was back at work, putting on weight, taking less medication than I had in years, and eating all my favourite foods again. I was getting out and about with a feeling of freedom I had forgotten was possible, no longer checking for the closest toilet the first time I went anywhere new. I felt like a new person! Or perhaps I felt like my old self again – a person I had forgotten, and thought I had lost. Of course, having a stoma was a huge thing to get used to and wasn’t without its challenges (I will talk more about this in future blogs), but compared to how sick I had been and what my life had been like over the previous few years, for me, I was just so grateful to be feeling healthy again.
Within a few months after the surgery, we made yet another big decision! I was feeling so well, and had the green light from my surgeon, gastro and stoma nurse. It was time to take the bull by the horns. Time to make hay while the sun shines. Time to plan the trip of a life time! This time we weren’t going to live and work overseas, we were just going to travel and live life!
There was so much to organise, with 8 months (which turned into 10 months) of travelling. As well as all the normal stuff like travel documents, money and packing, we also had to move out of our place and organise storing all our things, resign from our jobs – basically pack up our lives! Plus of course there were the added things to consider travelling with Crohn’s and an ostomy – stoma supplies, medication, letters from doctors, insurance with a pre-existing condition, and getting blood tests whilst overseas.
The fun didn’t end there! I had a few scares leading up to our departure – some gynaecological issues requiring attention as well as a suspect breast lump literally 2 weeks before we were due to leave. I really thought we were jinxed for a while there, and was unsure the trip was really truly going to happen.
We got it all sorted though, and a few days before leaving Australia, even managed to get engaged! A huge shock to me as Michael proposed after 17 years together, sitting at the romantic Café Sydney with the harbour bridge as our backdrop. I said yes of course!!
At last the day arrived. Over 4 years since being diagnosed, 3 years later than originally anticipated, and just over 6 months since having major surgery – it was real! Sitting on Qantas, holding my fiancé’s hand, I breathed a huge sigh and shed a few tears as we sang “up in the air we fly” and took off from Sydney. Finally, it was happening!