and habit-forming

And a quick health related post as well, because shit’s been going down! Kind of!

Well, to be honest, it hasn’t been anything that wasn’t already expected. I went in for an appointment on Tuesday, with the nurse and doc running the trial I’m on. Hypothetically, it was for my next dose of the drug, but we all went into it knowing that, unless something had happened of a dramatic nature over the weeks beforehand, there wasn’t any point continuing. So we’re not.

And I finally nodded, in moderate defeat, when prednisone was brought up. The many and varied medical staff who I deal with have all been very understanding of my reluctance to take steroids, and so I’m only on a low dose, and will be tapering after a month. I’ve been feeling a little better – I’m not sure if it still needs a day or two to really kick off, or whether the dose is just too low… I’m really hoping the former. But regardless, the slightly more major thing, kind of, since the pred is just a temporary measure, to hopefully jump-start my feeling better (although to me it feels sort of like a bigger deal, since I’ve been saying ‘…no, thank you’ for the past year, almost) is that next week, I have my first infliximab (aka Remicade) infusion. Fiveish hours on the IV. Hooray.

I mean, I’ve had an iron infusion before, so I kind of know what’s up, but still, megadrugs! Problem is, the trial drug I’ve been on is a TNF blocker too, and I had minimal – if any – response to it. So it stands to reason that the infliximab (I’m getting used to calling it that, even though most of the internet does refer to it as Remicade, because my medical folks all do) may well not work for me either. But in the positive column, it has a proven track record – been around since about 1999, I think? – as opposed to being in phase II of a trial.

So we’ll see. Maybe I’ll even liveblog (or livetweet, more likely, let’s be honest) the whole exciting experience next Wednesday! It is fun slightly freaking out one’s Facebook friends list with sassy bathroom mirror pictures of yourself attached to an IV… oh wait, here’s one I prepared earlier!

What a sexy face, n’est-ce pas? And that bedroom hair! Oh, stop!

But yes. So, we continue the quest towards Successful Medication Ideally Without Total Colectomy. Which currently means that I’m taking upwards of 15 tablets a day, in addition to the soon-to-occur infusions. What an exciting life I lead. Oh, and this whole starting infusions thing at the same time as starting meds with possibly super-duper fun psychological-and-other-stuff side effects? All at the most stressful time of year for me as a textbook buyer for schools. SWEET AS.

gollum and government

It seems appropriate, given the current Hobbity furore (which I’m something of a part of, I’ll admit – hard not to be when you were a die-hard LotR fan as teen in the early noughties), that my intestinal word association of the morning as I’m lying in bed writhing (even though I popped Tramadol two hours ago) was of a Hobbity nature.

As I moaned to myself ‘take it OUT, don’t want it,’ some constantly fantastical corner of my brain piped up ‘We don’t… neeeeeed you.’ Granted, if it gets to the point where ‘jpouch looks after us now’, then I won’t even have any angry colon-gollum to talk to (and with its grumbles and gurgles, perhaps it is talking back… bitch). ‘Go away’, ‘leave now and never come back’… bro, those are my vocabulary almost every morning.

The pain for the morning is slowly – very slowly – abating, but this is really just cementing the fact that I really want off this stupid trial. I wouldn’t even care if they decided to skip infliximab/Remicade entirely and just took the damn thing out. That being said, I really can’t take an extensive period of time off work until April (working in a uni bookstore means WEIRD periods of business. March and July are the ‘yeah, you want leave? time to resign, buddy’ months, whereas December is, for most people – except for me, since I deal with the orders for several schools which start back in January, huzzah – our quietest month of the year. The possible problem with Remicade is that typically government funding wouldn’t cover a large course of it for me since I only (at last check) have left-sided colitis, even though the left-side in question is super bad. A long course of Remicade would normally require pancolitis. But, given that I have exercised every other possibility, including way too many months on this damn trial, I think the docs are fairly confident that an exception could be made for me – the hospital has additional funding for situations such as this, or something. Things like this give me the tiniest glimpse into the hell that the US healthcare system must inflict on those with an IBD or any serious/chronic disease really. From what I can tell, it looks as though a single infusion of Remicade runs about 6000USD, and even people with insurance seem to be having to pay a thousand dollars or so towards that.

That blows my mind. It won’t cost me anything, in effect. I know that taxes pay for it, but it’s not like having higher taxes on my hardly noteworthy salary makes me incapable of carrying out day to day work. It sickens me to think that a purportedly first world country can have so many people who think it’s acceptable to maintain such an ‘every man for himself’ mindset, to be so anti tax. No government is perfect, and for sure there are things that they do or say that aren’t to my liking – hell, I can’t stand our current PM or his party – but at least we don’t have to worry that getting sick will bankrupt us. If I had one of these ‘deductibles’ or ‘out of pocket payments’ or whatever the hell it is that the terrifying insurance companies make you pay in the States, I don’t know what I’d do. It would make what is already a horrific thing to deal with so much worse. My prescriptions cost me $3 for a three month supply, regardless of what they are. Because Remicade would be administered in a hospital, it wouldn’t cost me anything.

But, like I say, at this point, I’d almost rather they just take my damn colon out. It may have had 18 or so years of reasonably perfect function, but for the last 3/4 years it has just shut down shop. It’s about 2 years since I was officially diagnosed. And despite going through the rigmarole of Pentasa, Colifoam, Asacol, azathioprine, and now several months of trial injections, not to mention an upper endoscopy, two full colonoscopies and five (I think?) flexible sigmoidoscopies, I’m pretty much as bad as I’ve ever been, if not worse.

So, take it. I don’t want it anymore.

things to do while stuck in the bathroom

Reading the backs of shampoo bottles can only get you so far when you’re on intimate terms with the bathroom. Here’s a handy list of ways to wile away the agonising hours (if you add up colitis bathroom time, it gets a little scary!) in the loo.

  • do your nails. Only applicable when you’re not in writhing pain.
  • put on moisturizer. Nothing like a bit of tearing up to help it soak in!
  • listen to music. Especially good if you’re worried about unseemly noises, just bring along a iPod dock and crank it. Although, let’s be honest, if you’re at the point where you’ve been diagnosed with an IBD, noises are probably the least of your concerns. But you can choose music to suit your pain/movement mood! O Fortuna is best reserved for special occasions.
  • wail in pain. Because sometimes it’s all you can really do.
  • sing. Not just for the shower anymore! Serenade your flatmates with your musical prowess!
  • cry.
  • read. A Kobo or Kindle is your best friend. Best thing is trashy teen novels that you secretly want to read, but don’t want the perceived shame of carrying around the book itself. Plus they are generally fairly straightforward when it comes to reading comprehension, so you’re unlikely to miss anything crucial is your eyes glaze over during particularly bad waves of pain.
  • internet. Whip out the old smartphone. Read up on the news, or check out a colitis/Crohn’s forum or support group. I’m a particular fan of IHaveUC.com and both the CrohnsDisease and IBD subreddits on everyone’s favourite Front Page of the Internet.
  • text people. I’m terrible at remembering to contact people, so the bathroom is sometimes my go-to for responsible daughter text messages to my mother.
  • ponder. Eg. when will the drugs work / should I just get surgery / should I just get surgery NOW by myself with a kitchen knife / was the cheesecake worth it
  • philosophise/theorise. If Archimedes could make scientific discoveries in the bath, why can’t you do it on the loo?
  • or just think about how delectable those painkillers are going to be when they start kicking in.

angry birds

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.

OW.

FUCK.

BLOOD.

OW.

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.