the peculiarities of ‘remission’

Remission. It’s a word I always see thrown around on IBD forums, along with flare. It wasn’t until the last six months or so that I even heard the word ‘flare’ used by any medical professionals I deal with… mostly because it was a foreign concept to me. The internet seemed to be full of IBDers who experiences ups and downs – and whilst I certainly had days that were worse than others, the fact that post-diagnosis (December 2010) I never had more than a couple of ‘good’ days meant that there just wasn’t any point talking about these supposed swings and roundabouts. I had active disease, and it wasn’t going anywhere.

I don’t know if I’d be labelled as being in remission yet, but it’s certainly the closest to it that I’ve ever been. My insides aren’t 100%, but that could be more of a lingering IBS type thing, rather than full-blown UC. The strange part is, it seems so hard to imagine the really bad days now. Time heals wounds, as they say, and when I think about my disease, I have to remind myself that actually, yes, it is very serious, and more to the point, I need to seriously remind myself that there are absolutely no guarantees that my current course of medication will continue working for a protracted period of time. A few months ago, I was convinced that I would be getting a colectomy some time in 2013. Succumbing to prednisone – and possibly the effects of infliximab, hard to say yet – has turned all of that on its head.

But, as I say, it’s not necessarily forever, and whilst I’m therefore less likely to be telling myself to mentally prepare for it, and trying to visualise what my stomach would look like with a stoma, trying to remind myself that I’m in a position where I’ll be cared for, loved and looked after regardless of whether or not I have a large intestine… I have to keep it in the back of my head. I can’t let myself stray into the potentially false sense of security that my medication is giving me, because whilst I’m currently down to 3/4 BM a day, and everything seems to be fairly healed inside (my inflammatory markers are looking good too, first time I’ve ever heard that!) all it takes is for something to go slightly off kilter, and I could be thrown into one of these flares, and if that happens – if infliximab and prednisone stop doing their thing – that does mean surgery, and that does scare me, despite what I may project.

For now, though, it does feel nice, being able to leave the house and not worrying about which route I decide to take, or whether or not I have enough energy to walk fast enough to save myself from potential intestinal trauma. The psychological side-effects are hopefully going to get under control (I’ll post more about that in a day or two). In a month and a half, the worst stress for the year at work will all have passed, my boyfriend will long since have returned from his travels. And, more to the point, I should have some idea of whether or not everything’s going to keep working for the next while.

So KBO, I suppose!

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Basically, I deal in words.

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