So I’m in a situation… and it’s one of those good/bad situations.
Since going back on the Mercaptopurine in April I’ve had a very long list of side effects. The worst being fatigue. Crohn’s comes with a healthy dose of fatigue to start with – which makes sense, it’s Auto-Immune so your body is fighting a fairly consistent fight. It makes you tired. “Traditional” immunosuppression has always increased that by some outrageous factor. Like with most things, some weeks are not so bad… and others are really, really bad.
I am kind of in that situation where my head is telling me “everyone is in the same boat, life is hard for everyone, everyone gets tired, harden up, sook”. My head has always been a hard, but fair companion. And that is honestly what I believe. Fatigue is normal with the lifestyles we all live – processed food, disturbed sleep, action packed lives, emotionally draining events… All these things = fatigue. Everyone has these things in their life. Everyone is fatigued from the simple act of living. My expectation is that I am indeed tired because I’m alive.
What I don’t expect however is to almost fall asleep at the wheel on a Monday afternoon after an ordinary weekend… and an ordinary Monday, when I did get as much sleep as needed. No, that’s not normal… and I’m sad to say that Disturbed has had a good showing the last few weeks, purely to keep me awake and from hurting another person. I usually have 1-2 coffees a day… I’ve been having upwards of 4. So sure – this is probably something more than run-of-the-mill-life-is-hard-fatigue. And after agonising over whether it was just in my head and if I really have the right to talk about fatigue, when I’m otherwise doing well… I had a frank discussion with my GI.. that started something like this:
Now you can tell me to harden up – and I fully expect you to… but I’m tired… real tired… fall-asleep-at-the-wheel-tired… and I feel kinda shit… Discuss
I believe I’m the only comic relief in that office.
I’ve never had a great relationship with traditional medication – and when you look at the drugs broken down, it’s easy to see why. They quite literally fill us up with poison.
After he got the smirk off his face, my doctor wanted to have a more serious chat about long term treatment. I’ve been on 6-MP for almost 10 years now – cancer is already a certainty in my future. I came to terms with that long ago and we’ve made changes in our routine to ensure we find it in enough time to handle it. It’s also been over 10 years since biological treatment was brought on-board in Australia. Which means there is a significant amount of data about it. Dr E ran through to numbers with me and although it is scary – Biological treatment is imperially the safer option. He also went onto say that what I’m feeling is not in my head – it’s a reaction to the drug which he reminded me I have had since day one. He also said because I was so much of a hard arse I refused to complain about it therefore the status-quo was unchanged. So yeah, my fault.
Biological treatment is about $2,500 a go. Treatments are every 6 weeks. So that is $22,500 a year if I was to elect to have this treatment and it wasn’t covered by the Australian PBS.
Fuck. I’m so lucky.
One of the factors in PBS approval is a reaction to Prednisolone. Check: see earlier story on insanity. Surgical intervention. Check: see my surgical adventure in 2013. And a reaction to traditional immunosuppression… which I refused to document because I thought I was being a pussy. So this week I documented it. Check.
We ran through the results of a recent Colonoscopy which actually put a smile on his face. I am one of the few patients to make it to the 5 year mark… and one of very few to exhibit something called Mucosal Healing (which even I need to read more about – so no detailed explanations in this post).
Basically they are medicating me with poison to treat a condition that’s totally asleep. They are making me sick right now with no benefits…
Very long meeting short – he wants to pull me off the maintenance drug that I have leant on like a crutch for the last 10 years. And the thought is absolutely terrifying to me. He never tells half a story (unless something serious is wrong and I need to be admitted before I panic) so I got the numbers. 1 in 6 patients will have recurrence in under 12 months without the intervention of medication – that number increases to 1 in 3 in under 24 months. One third of all people peeled off the medication will have recurrence in under 2 years. That’s a big number – and it’s a wakeup call not to be complacent. I’m in remission because we ALL worked hard to get me there – yes even me. But that remission is very fragile – and I am talking about giving it up for what? Because I’m tried? Do I need to harden up? It sure sounds like it to me….
Biological treatments do not come with the side effects or the risk – they just come with a higher travel insurance premium and some inconvenience. Well not really – they would just bundle it with the usual iron, B12, D infusions – so not much changed I suppose. There is only good to be had… almost.
The last criteria for biological treatment is I need to be out of remission.
This is an impossible choice for me – because trust me I remember how bad it was. I remember not being able to eat… I remember almost signing my own death certificate because I fought surgery… I remember it all. By stepping off the maintenance drug I’m electing to have a better quality of life, but I am also electing to become sick again, voluntarily.
It’s my wish that people didn’t have to make decisions like this anymore… no more “take this to fight your [insert name of illness here] and we’ll give you cancer for your trouble” or “stop taking the rat poison that’s making you feel like you’ve been run over and you’ll get sick again so we can fix you… again… with better drugs”. I’m not asking for a cure… I’m just asking for an option “c”. Better and more consistent treatment that’s kinder to the people who need a little kindness. I know that’s what everyones working towards, I know that. I also know that it’s my conditions rarity that means it’s not a priority and I’m thankful that it’s not widespread enough to need special funding… because that would mean more people would hear the things that I hear, and need to make the decisions that I make… and I don’t want that, for anyone.
My decision? I’m rolling off. I’m rolling off because I’m scared of hurting someone else due of the depth of my fatigue and other side effects. I’m not saying that for dramatic effect… I’m saying that because I really did have a micro-sleep a few weeks ago and was woken only by an audible road line…
So today I am maintenance drug free. It will still take 6-weeks to be out of my system. And I approach that time with quiet, optimism. I trust my doctor. If he is telling me this is the right thing, then this is the right thing.
Regardless of how terrified it makes me.