And by birds, I mean the evil ones that live in my large intestine! And by evil birds in my large intestine, I mean pain in my large intestine! What tomfoolery!
So. Here’s where I’m at, colitis-wise, at quarter to ten on November 28th, 2012, approximately two years since being diagnosed.
Get the picture?
I’m on a trial for an ‘amazing’ new colitis-specific drug (as opposed to most other treatments, which are designed more for Crohn’s/rheumatoid arthritis/etc) which ain’t doing diddly squat. The first part of the trial was uber-frustrating, because nothing was happening, but it was double blind, so we couldn’t be sure whether it was the placebo or not, though there was a 1 in 3 chance that it was, so I was hopeful that when they pulled me off the double blind and set me up for the open-label that everything would start looking up. I’ve had three doses, and it’s two weeks since that third set of injections, and really, nothing’s changed. The only good thing that’s come out of the trial so far is the extra medical attention it’s afforded me (and therefore lots of flexi-sigs and even another full colonoscopy, which, as un-fun as they sound, are useful in terms of doctor’s knowing for sure what’s up, and, truth be told, the anaesthesia drugs are pretty kicking). That, and Tramadol, which is my new biffle and actually helps get me through the work day without writhing on my wheely chair and cuts down on the number of bathroom visits, too.
As well as the trial, I’m on minimum 7 and a half tablets a day (not including the Tram capsules I pop most mornings), including 6 Asacol, which I’ve been on for nearly two years now, and one and a half azathioprine (which they also give to organ transplant patients! yay intense meds!). I try to take iron supplements and multi-vitamins when I remember, because whilst my iron levels are okay at the moment, they’ve been known to get awfully low (like, guuuurl, you are so anaemic, you need an iron infusion, come hang out in haemotology low) and the multi-vitamin is because most fruits and veggies upset my stomach (I use that as a general term, one tires of using colon or large intestine in every other health related sentence, forgive me). My vegetarian days are but a distant memory, with legumes off the table and most dairy being avoided. No soy, either. Oh boy.
So if this trial doesn’t work, and, at this stage, it’s not exactly looking good, it’s Remicade/inflixmab infusions next. Except that the trial drug has a similar mechanism to Remicade, apparently, so if it hasn’t worked, the Remicade’s unlikely to either. And then, realistically, surgery. And to be honest, if the doc said to me tomorrow that they wanted to take my colon out the next day, I think I’d say yes. Because the reality is that, if the trial drug works, or if Remicade works, I’m going to be tied into going into hospital every 4-6 weeks for the indefinite future. And the side effects of them (and the pills I take, too!) can be pretty freaking awful (bone marrow failure, higher chance of melanoma, just to name a couple). To be honest, I think I’d rather take the repercussions of a colon-free existence over that shit, so to speak. No cancer-risking medication? No chance that I’ll become immune to the meds? All in exchange for a few months with an ileostomy and then getting an internal j-pouch? Sign me up, bitches.
And now, I’m getting sleepy and incoherent. That’s what happens when you type up 600 words of colitis-talk whilst in the middle of a gas-cramp attack. Time to take me pills (and maybe some painkillers) and try to drift off into blissful sleepy oblivion.