Colitis update

There's recently been a lot going on in my medical life, and I realized I should really put in an update, for all those people who really really want to know what it's like to have a long term immune system problem. You weirdos.

First off: a recap. I am currently on mercaptopurine (6MP), an immunosuppressant drug which used to be (but is no longer) used for chemotherapy. I've been on it for, I dunno, maybe six months? In that time, my inflammation has reduced to the point where my blood tests look normal, and my poo has become solid (you have no idea how good that feels). However, I've also completely lost my appetite, and left to my own devices I've become very lazy about feeding myself. I've also had very low energy levels (which not eating probably doesn't help). In general, I've experienced symptoms which look and feel like anaemia - tiredness, dizzyness, etc.

Oh, and 6MP and alcohol don't mix.

So that's the baseline situation, if you like - I've cut back on all my strenuous activities, and by avoiding anything overly active (GF is well trained now, and has pretty much given up on sex after 7pm) I can pretend I'm leading a more-or-less normal life.

However, the last couple of months I've been feeling particularly bad. I suspect this might be due to taking on the task of redecorating the bedroom; the textured wallpaper did come off, but it was a tough and wily opponent, and left me in a weakened state. A couple of stressful weeks didn't allow me to recover, and since then I've been struggling. Case in point: I went away this weekend with some friends to a hostel outside Edinburgh. We were rehearsing some choral music, so nothing particularly strenuous was planned; even so, I had to go to bed at ten o'clock, feeling rough, when they all stayed up and partied 'til 3. That sort of thing really brings home to you how things really are; most of the time, with nobody living with me to compare to, I can bumble along without worrying about it; but when you're living cheek-by-jowl with your peer group for a couple of days like that, it becomes painfully obviously how far off normal you've become. It's upsetting, and slightly embarrassing.

I was all ready to break out the prednisolone and start popping steroids, but having discussed it with Generic GP today, we came to the conclusion that actually, my run-downness has probably been a result of something post-viral rather than a flare-up of my UC, which according to my blood tests seems to be pretty normal. That's heartening; at least I'm suffering from something normal people get, and it doesn't have to be walloped with something potent and chemical.

On top of this, I've just had the results of a bone density scan. Irritable bowel illnesses (Crohns, UC, etc.) reduce the uptake of nutrients, and over a long period of time this can lead to reduced bone density. In my case, it appears that while my hips an joints are normal, my spine has a considerably lower density than normal (two - well, actually nearly three standard deviations). So now I have osteoporosis in my back. Great. Anyway, I've been given some alendronic acid to take. As far as I can work it out, the bone is undergoing a constant process of breaking down and being renewed; this stuff slows down the breaking-down part of the cycle, which kind of gives the building-up part a chance to catch up. Apparently. It's a once-a-week thing, and doesn't sound particularly scary at all, compared to some of the stuff I've been on - but I guess I'll be wary of lifting anything heavy for a while. Great; so now when I avoid helping anyone with heavy equipment, people will think I'm rude and lazy, as well as a malingerer. Hey ho.

In any case, I have another appointment with Kindly Consultant in a couple of weeks (he's a nice man), when we'll really know if the last few days (which have been much better than anything previous) have been an aberration, or whether I'm genuinely coming out from underneath something that normal people get.