When Ulcerative Colitis comes and kicks my husband's arse...
Today is the second anniversary of our arrival in Toronto.
I remember riding in the taxi to the airport on a stunning, clear and sunny 38 degree day. I was desperately sad to be leaving my beloved Melbourne (truly one of my soul cities along with London), but also incredibly excited to be starting a new adventure.
I have always believed that it takes a good 2 years to become comfortable with a new city, but I honestly don’t even remember if my first 2 years in Melbourne were hard.
Toronto hasn’t been too bad, I am still a bit ambivalent about the place – I don’t really love or hate it. I enjoy living here, but mainly because I have a lovely group of friends, there is enough of a burlesque scene to keep me creatively stimulated and of course my husband and mad kitties.
There were very high hopes for 2014, and I still do. But it has presented some incredible challenges, which I think I have been able to cope with better having moved countries a few times and learning to gain perspective.
Geoff was diagnosed with Ulcerative Colitis back in 2010, and given that I also have a bit of a dodgy tummy (I regularly develop obstruction in my small bowel due to it twisting) we didn’t think too much of it. Who doesn’t have a dodgy tummy now days?
He had flares reasonably infrequently, long enough apart that they could be written off as a bad patch and something that I have always directly attributed to his stress levels. His first flare was when he moved from his first job to EA. The second flare was our wedding (and subsequently being made redundant, selling our house and moving to Canada). And then most recently during project changes at his job here.
We honestly didn’t realise how sick Geoff actually was, there was always a hope that next week would be the week that he would start getting better but it never arrived.
In late January things started to get really bad. He stopped eating, was only sleeping for an hour or two each night and eventually stopped being able to drink water.
We had gone to a walk in clinic during the week, since I was convinced that he needed oral steroid to bring him out of the flare. So I was furious when he came out with a prescription for 6 weeks of his regular medication and advise to go to A&E if he developed a fever.
Things got worse over the next couple of days, there would be times where he wouldn’t even acknowledge me asking a question. Unfortunately, I thought that he was just being difficult. Turns out he was hallucinating and he thought that we had had an in depth discussion and wondered where I had gone mid conversation.
Then he got a fever, so we went to A&E
Geoff was extremely dehydrated, technically malnourished and was in a very severe flare. So severe that his bowel could have perforated.
He ended up admitted and under contact precautions (meaning a delightful gown and glove combo each time you needed to go in his room, which when you are juicing and need to pee every 10 minutes is super annoying.
For two weeks there were IV steroids (prednisolone), after a second flex sigmoidoscopy which showed no improvement and in fact further deterioration of the colon, Remicade (Infliximab) was started.
Initially we hoped the meds would work. We both charted every part of his day looking for progress, and there did seem to be some. Unfortunately medical intervention didn’t work and the last option was to remove his colon.
Finally we got home last week after 3 and a half weeks in hospital. Geoff has a very impressive scar and a temporary ileostomy. But the best part is that he is better! He won’t have to rely on steroids, immunosupressants, TNF blockers or be at a higher risk of further flares or colon cancer.
The way that I found it best to manage all this is to organise and manage it all. My default in times of stress is to control things, so I get organised, structured and develop set routines.
So although the start of 2014 has proved to be super challenging, I’m not willing to give up on it yet. There is a lot that I am thankful for and continue to be thankful for, my husband is still here with me and we have so much to look forward to for the rest of the year 🙂