My year on Mercaptopurine and where I’ve been

So it’s been a while between posts, life got in the way and my UC flared up… twice! That hasn’t been fun, but I just graduated from university and now I hope I’ll have more time to come up with ideas, stress about them not being any good, and eventually write more than one post a year 🙂

One year ago I got sick again. From what I see most people with UC seem to blur the line between flaring and okay on a daily/weekly/monthly basis whereas I am either 100% perfectly normal or 100% feeling like I could die at any minute. My flare came on a little bit weaker than the first, and my GI specialist gave me another course of Prednisolone to hopefully get the same effects as the first time. Unlucky! Didn’t work. I got all the (side) effects of the steroids – sweating constantly, irritable, fat head disorder, sex life non-existant (yes I’m blaming the steroids) – but they didn’t work to control my UC. Next step, Mercaptopurine.

I was honestly hesitant to take Mercaptopurine as the idea of messing with the immune system seems like something out of a sci-fi movie. Generally I’m a pretty conforming individual and trust that science knows more than I do but it is still a bit scary. I consulted with people online who had used it which eased my worries a bit, along with my specialist basically telling me that whenever I felt “off” with it to tell him and we would move on with something else. In Australia the government makes you jump through hoops to get anything as each progressive step costs them more money, which is understandable, but with the amount of tax money I pay I’d hoped the process would be JUST A LITTLE EASIER! Nope, wrong again. So I started the Mercaptopurine with the mindset of “If it works – great! If I feel weird at any point – we out!” and I was on my way. Mercaptopurine took 3 months to kick in, a lot longer than I was told, but once it started working it was great. I was back to my 100% perfectly normal self and had started to finally put a couple of kilos back on. 2 months later, it started working too well.

After 5 months on Mercaptopurine I started feeling nauseated, for a week, and then I got sick again. What the hell is this about? No one knows, but it seemed that it worked so well that my body told it to piss off and brought my UC back. Great effort Mercaptopurine! And so we continue with the Australian government hoop jumping that I love so much. The next step being biologics I had the choice between humira and infliximab (remicade) – and being a wuss the obvious choice was an 8 weekly IV as there was no chance I could inject myself with anything. Here’s my process for getting on Remicade: 1. See my GI, book in emergency colonoscopy for the next day to find wtf is going on. 2. Get said colonoscopy, confirm I’m flaring up, return to see GI. 3. Fill in required paperwork for government to bless me with the drugs I need to get back to work and be a normal contributing member of society. 4. Have GI lose information, tell receptionist my choice to go on Remicade (which is not relayed to GI), wait 3 weeks for another appointment where I find out all of the above information, resubmit everything and wait another 3 weeks for the government to hit the tick of approval.

In amongst this process I had my final exams for my degree, which went swimmingly – thanks to me from 5 years ago choosing a very easy degree. So that was a nice distraction from the utter incompetence of our health system, but alas it has finally been put through and I’m set to get my first infusion next week! Yippee! I’m still on mercaptopurine despite it not working as the government (yep again) requires that you stay on it for your first year of Remicade. I’ve had 3 colds back to back with about 3 days break between each one, so I’m hoping that isn’t my compromised immune system and is just resulting from the terrible season we’ve had here – and my luck of not having a cold for years before this. Either way, I’m excited to get on Remicade and hopefully be back to normal very soon.

In other news, I have a trip to Nepal planned in November. I’ve always wanted to go trekking over there so I’ll be doing the Annapurna Circuit with a friend from high school, and thought why not tie it into a fundraiser for the Crohn’s and Colitis Australia foundation. This foundation does a lot to help people in Australia with IBD where the government lets them down, along with funding extra research to hopefully get some better treatments. You can donate to the fund here or send me an email if you’d like to donate directly. All money goes directly to the foundation, any amount is appreciated and all donations are fully tax deductible in Australia.

I’ll be back writing more soon, hope you stick around 🙂

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