(stands for Another Boring Medical Update)

It's been a while since I posted anything, mostly because I've been a bit poorly for the last few weeks. Five weeks, in fact. It started with a fairly normal, if rather severe, colitis attack - stomach cramps, diahrroea, feeling completely washed out. After a fairly prolonged period of liquid poo, I felt so washed out that I decided to take some iron tablets - something which is normally pretty good at perking me up.
However.

Iron supplements do have a tendency to make you constipated - not such a problem, you might think, and even a bit of a relief. This time, though, I found myself in considerable discomfort, which got worse and worse. After a couple of days, I was having to sit quietly for five minutes after going to the loo. After five days, I was in continuous pain from my rear end, and going to the loo was utter torture. A visit to see Kindly Consultant was quickly arranged, and that same day I was able to get a considered medical opinion on my problem, which was that I had an anal fissure.

What had happened was this: my arsehole had endured such a lengthy period of diarrhoea that it had softened somewhat, and the sudden introduction of small, hard things through its little maw was too much. It tore. It was probably only a tiny cut, but blimey it hurt. And it has hurt, ever since. Not only is the area incredibly sensitive, but any scab that forms has to undergo a battery of sh1te twice (three, four, five times) a day, making it very very slow to heal.

I was given some muscle relaxant cream (which goes by the rather charming name of Anoheal) to counteract the natural impluse to clench and cut off the blood flow around the offending area, thus hindering the healing process. In addition, I've found regular hot baths (regular like, every night) and sleeping with the electric blanket on (warmth increases blood flow, improves healing) have helped enormously - as has a big foam ring-shaped cushion, which sits on my office chair at work.

I'm definitely on the mend now - last weekend I discovered I could cross my legs again! Ah, the bliss of simple pleasures. But it will be a few weeks still before I can move freely, and in the meantime I am a very sedentary bunny indeed.

For the record, at the moment I am taking: mercaptopurine, Budenofalk, Alendronic acid. That may all change in a couple of weeks, though - I'll be going into hospital for a sigmoidoscopy, and if the results show a lot of inflammation (hmmm, d'you think that's likely? Maybe?), then the chances are I'll be put onto Infliximab - even stronger magic than 6MP, although the odds aren't great - something around 60% of patients respond to treatment. Hey ho.

Realized today that I haven't really been keeping up the medical half of this journal recently, so y'all are due an update. In fact, the last post was in the middle of May, a hefty few months ago... so, let's see, what's happened since then?

Not much, really. I've been a bit hit-and-miss with the alendronic acid, but that seems okay. My colitis, however, does seem to be slowly gaining on me. After a very successful start with the 6MP, my blood tests over the last six months or so show a gradual increase in ESR (more inflammation, basically), to the point where Generic GP sent me a letter about it. As a result, GP consulted with Kindly Consultant, and I'm taking some very baby 'gastro-resistant' steroids for a bit. So we'll see what happens.

For myself, I just feel... well, pretty tired, basically. Very tired. I'm starting to get some stomach cramps again, too, and my poo is very runny and gaseous. For a while, it burned, too, like I'd spent the last year eating nothing but curry! So the prospects don't look so great right now. However, I take comfort from the fact that my stressful summer of weddings, etc., is now over, and I can relax a bit. It's cheering, too, to know  I'm being watched pretty closely by my NHS guardian angels.

...no, not that sort of floater.

I've been having some trouble with my eyes today - feels like some sort of spasm, or clot, or something, which makes the world appear to move as if you're sitting on top of the washing machine during the spin cycle - most unpleasant and not a little alarming, especially when you're operating heavy machinery at the time. Anyway, I did a bit of research, and while I was bumbling around the internet I came across the following, unrelated bit of eye-wrongness trivia:

You may sometimes see small specks or clouds moving in your field of vision. They are called floaters. You can often see them when looking at a plain background, like a blank wall or blue sky. Floaters are actually tiny clumps of gel or cells inside the vitreous, the clear jelly-like fluid that fills the inside of your eye.

Floaters may look like specks, strands, webs or other shapes. Actually, what you are seeing are the shadows of floaters cast on the retina, the light-sensitive part of the eye.

Now, I know some people don't see them, but I know that most people in my family do, and I'd always assumed that most people did and the freaks were those who lacked them. But apparently not. Have you ever come across this? It appears that things can be done about them. Not sure if I consider it sufficient a problem to ask anyone to fix it - after all, I've lived with them for as long as I can remember and they seem harmless. To be honest, I've never regarded them as a problem - in fact, it can be kinda fun chasing these things around your eyeballs. I know, I need to get out more.

I also booked an appointment with the optician, before anyone asks.

Okay, so Crohn's Disease isn't ulcerative colitis, but the two are pretty close, so this is quite encouraging. I've always felt there was a genetic component, since my Mum has psoriasis and my sister has psoriatical arthritis - and like UC, those are immune system disorders. So it seemed reasonable.

Still, good news.

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.

Just realized how long it's been since I gave y'all a medical bulletin. No doubt youj're on tenterhooks; Is he still on the Azathioprine? Has he recovered from his ordeal? Will Bluebell win the 3.30 at Kempton?

Well, here are the answers: No; more or less; and, who cares - this is the present, and it is up to us to make it as beauteous as possibl. (one for you, there, Henry)

So I am no longer on the Az. Oh, no. Now I am on 6-mercaptopurine, or 6-MP as I like to call it. I got a little freaked when I first started on it, though, I must admit. I made the mistake of reading the little leaflet which comes with the pills - you know the one, it's the one which lists all the side-effects and normally reads like a complete A-Z of medical history and is specifially designed to cause heart palpitations, cold sweats, blurred vision, hairloss, etc... This one was no exception, but best of all it started with the following statements: "This medicine is a cytotoxin. It is used in chemotherapy, and the treatment of cancer."
Hmmm.... is it used for anything else? Nope, nothing else was mentioned. I got a little freaked at that point, I must admit. Luckily, although colitis wasn't mentioned in the 6MP literature, the Azathioprine leaflet mentions 6MP as an alternative, so I figured that was okay. (Eventually, I checked with my consultant and it was fine. Of course).

But anyway. I've now been on the 6-MP for about 3 weeks, and I've been perfectly fine. Admittedly, I'm still just on the tail-end of the steroid course which started way back when I was in hospital, so that's gotta help. In fact, for the moment it's enough that the 6MP isn't giving me any troublesome side-effects - I'm not actually expecting any benefit from it for at least another six weeks. They say it takes up to 3 months to kick in, but my sister was on something similar for her arthritis and it took longer than that for it to work for her, so I'm expecting it to take a while.

In the meantime, it's not as if I've been taking it easy, what with Festival stuff (and a little romance ;). So in generally, I'm a happy bunny. I seem to be keeping up with everyone, which is pretty much the only way I can find to judge my progress.

...and it's not my fault.

No, apparently, it's genetic. Wonderful.

(personally I suspect it's more to do with access, and the ease of, but if someone's willing to give me a medical cop-out, then hey, who am I to look a gift horse in the mouth? Especially when it's all new and shiny).

 

For the sake of completeness, more than anything: Had another meeting with my consultant yesterday (God bless the NHS). His theory is that I'm still feeling run-down because of the Azathioprine. Apparently, 'flu-like symptoms', as well as being meningitis, depression, flu, incipient alcoholism, flu, and pretty much anything else you can name, are also a common side-effect of the Az. Personally, I hadn't made the connection with 'flu-like' - I'd just figured I felt run down and a bit woozy, although I guess I was getting the occasional hot flush thing as well. Anyway, I'm not taking the Az for a few days to see what happens. Apparently there's an alternative pill which can avoid this problem, so we'll see what happens.

In the meantime, it sounds like I'll be off work for another week. That should be great but is actually very boring.

It's been nearly a fortnight since my last blog entry, and there's a good reason for the break (I'd hate to keep my many readers on tenterhooks for no reason, ha ha). The day after I wrote my last entry, I phoned my hospital consultant for some advice on my worsening condition. His response was to get me into hospital at once. Not a moment too soon, either - I arrived with a raging temperature (39.5 degrees C, which is...let's see...103 Fahrenheit), and by the time I was bedded down on a ward I was pretty incoherent. Turns out it was option (b) - a roaring reaction from the colitis to being let off the leash with neither anti-inflammatories nor immune suppressants (nor steroids) to calm it down. Not a little scary. I spent five days on an steroid drip, having methyl prednisolone pumped into me.

All this, I should add, on the eve of the holiday I was supposed to be taking with my parents on their brand spanking new yacht in southern France. Mum, bless her heart, flew up from the family seat in Devon and has been a lifeline - it would have been truly miserable here without her. She's been cooking and cleaning and generally tidying my flat, and sleeping on the sofa. Dad was already on the boat, so he's been stuck in France, bored to tears (no crew = no fun sailing), and we've had daily text messaging and phone calls. The rest of the family have all given their best wishes, although it's hard when we're so scattered about the country.

But anyway.

It's funny, but there seems to be this assumption that as soon as you're out of hospital, you're fixed and fine and ready to go again. Well, I'm not. I'm still on humungous doses of steroids, and I will be for weeks to come. Doctor's orders are to take another week off, and then ease back into work slowly. And at the moment, I'm definitely feeling the effects of over-exertion, even now. But I feel like I'm on the mend, and my poo is wonderfully, satisfyingly solid. You have no idea how good that feels. I can only hope that it stays that way when the steroids drop away and the Azathioprine takes up the slack...

Well, once again it's official. I'm ill. Stuck in bed for the last two days, with just about enough energy to make myself soup. All the usual - dizziness, the usual digestive rebellion, etc. And earlier on today, I get a phone call from the doctors' surgery saying that they want me to come in because they've had my blood test results back, and the latests set have an unusually high ESR.

A high ESR suggests that there's a lot of protein bonded to my red blood cells, which in turn (don't ask me how) indicates an increase in inflammation. Which means, as if I hadn't noticed (hah), that my gut is going ballistic. Again.

Don't know what they'll say on Thursday, when I see the doctor, but there's basically two possiblities, and I reckon they'll have about as much of a clue as I do. Either (a) this is a bad (and fairly sudden) reaction to the Azathioprine (please no - I'd like something to work, please), or (b) I'm falling between two stools - the Az isn't supposed to kick in for three months or so, and I'm not taking any other medication, so hopefully the mice are playing while the cat's away, in a manner of speaking.

On the plus side, I'm watching the Space Shuttle launch. From about T minus four hours. Which is kinda interesting - we're now a T minus one hour, and the astronauts are all safely tucked up in their overblown space truck. Hope none of them need to poo. IBS would be a hell of a thing in free fall... my God. that's a scary thought. Lends a whole new meaning to the phrase 'explosive decompression', hah. Meanwhile, I can only watch in envy. To me, the space programme is just the sort of greater cause that I'd like to be able to devote myself to -  so watching all these guys has something of a religious feel. I'm probably too old and broken down now - but it was something which has stayed with me since college - the conviction that it's important in life to know that your effort has been devoted to something you really believe in.

Well, it's been kind of an up-and-down month or so health-wise. After the debacle of the drugs test, I had a couple of great weeks on prednisolone... but you can't stay on steroids forever, and as soon as I came off the drugs I was back to square one - not passing anything solid, feeling run down, stomach pain... not fun.

So last week I had my latest appointment with my consultant, and now I'm on Athazioprine, which is strong magic indeed. (see here for a bit about how it's used in ulcerative colitis) It's an immunosuppressant, so it's damping down my immune system's responses generally which is kind of alarming (what happens if I catch something else while I'm on it?!), but I'm assured that in cases like mine it's pretty good. And little sis is on something similar for her arthritis, so I'm hopeful that there won't be any problems. Nonetheless, I still have to go in for blood tests every week for a bit, until everybody's happy that there are no serious side-effects.

The main downer about this new voodoo is that it takes up to 3 months to actually start working. In the meantime, I'm not allowed to take my balsalazine (anti-inflammatories), nor any steroids (already had three courses in the last six months), so I'm feeling pretty dreadful - tired, occasional stomach pains, and diarrhoea. And (I think it's because I'm getting dehydrated from all the liquid going out the other end) I'm getting quite a bit of cramp if I even get slightly cold. It's all very depressing, and I feel like I'm really not much fun at all. Went to a party last night, but really didn't feel particularly sparkling - "so what do you do for hobbies?" "Not a lot, at the moment." ... all a bit of a bummer, really.

Got to look to the future, that's all. Hopefully the Az will have kicked in in time for the festival in August...

This is a little out of date - I wrote it a couple of weeks ago but I've been moving house, so I never got round to posting it. It completes a little cycle of blog entries, though, so I'm sticking it up now.

Well, so much for that. It is with.. Well, with mixed feelings, frankly, that I can announce the end of my career as a medical guinea pig. It lasted a month, less two days.

On the one hand, I regret not completing the course. I don't like to fail at things, and dropping out of a three month course after one month feels like failure. It feels like I let people down. I know how silly it is to feel that way, and I know that even a negative result is still aa result, but... it's just the way I'm wired, okay? I tried to stick with it as long as I could, I tried to help... and I had to drop out.

On the other hand, I AM OFF THE CRAPPY USELESS PILLS - WOOHOO! Thank crikey for that. Now, hopefully, I can get back onto something proven which works. This last month has been the crappiest of a series of crappy months where I've had NO ENERGY and NO FUN. This has to be good timing, given that I'm supposed to be moving house this week (well, moving from one house-sitting to the next) and going away at the weekend too, and I really didn't know how I was going to survive.

Let me just explain just how bad I've been. I would have second thoughts about climbing a staircase two steps at a time. This time last year, I was away surfing at the weekend; this year, I don't think I'd be able to carry the board down to the beach. This weekend, I managed to pack half a carload of boxes and get them into storage - and that was me finished for the weekend, completely wiped out. I had to rest up all that day and all the next, just to recover. Now, hopefully, I can really start on the long road back to some sort of sensible level of activity. It's been a long time.


Anyway - I am now moved into my new flat (more on that some other time), and have been taking bog standard Prednisolone for three weeks - and I feel wonderful. Last week, I managed to fit in a game of five-a-side football in my lunch hour! That would have been totally inconceivable three weeks ago. Glorious health!

Not life-threateningly ill. Not even stuck-at-home ill. But I'm ill nonetheless. I say this because I've actually been ill for more than nine years, but it's only in the last six months that I've actually admitted it to myself. I have ulcerative colitis, which normally gets lumped into the rather broad group of illnesses that get called Irritable Bowel Syndrome. It's basically an inflammation of the lower intestine, which causes pain and prevents you from really digesting food properly. It's also one of those diseases which until you've got it, you've never heard of, but suddenly when you start to talk about it you realize there's a huge number of sufferers.

One of the problems with being ill over a long period is that you forget what being truly healthy is like. I'm generally okay - a few weeks ago I went skiing, and managed to out-ski almost everybody there. When I got home, however, I crashed and burned for about two days, because unlike most people I simply have no reserves of strength; when I start to fade, I go downhill rapidly. When I had no peripheral worries and could concentrate on skiing, I was fine - but as soon as I was home, and I had all those normal niggling worries of life gnawing at the edges of my attention, I struggled. I tire easily, I get bored easily, I get emotional and fractious. I get abdominal pains - mostly nasty trapped wind, but sometimes genuinely ominous stabbing pains with no apparent cause. I have one particularly delicate point in my gut, near my left hip, which always hurts if I press it. Just recently a new and alarming symptom has reared its ugly head - anemia. I spent a week in bed, unable to do anything more strenuous than the washing up without feeling dizzy.

So what do I do to control my condition? Easy: nothing.

To be honest, there's not a lot I can do. I've tried different diets, and basically come to the conclusion that my condition is 100% stress-related. Now, the weird thing is that anyone looking at my lifestyle would assume that I am under very little stress indeed - my job is very very low-stress, I do some exercise but not an excessive amount, I sing in a choir and I play lacrosse occasionally, I drink and dance in moderation - so I have a very quiet, well-balanced lifestyle.

And yet there it is, a stress-related illness.

Partly, I can pass it off as genetic - my family suffers from a range of diseases which (this is my theory, anyway) can be put down to not handling stress gracefully. My mum has... thing with scalp, oh, damn, forgot the name... psoriasis! My sister has psoriatical arthritis (yeah, I got off lightly). I get ulcerative colitis. It's my theory that there's some sort of link between the three. But it must also be to do with the way I live my life, and that really undermines my self-confidence, because I worry about the direction my life is going. I worry about the big things: I have a professional career as an engineer, but I'm not really very good at it. I live on my own, and I've been single for a while now. I live at the opposite end of the country to most of my family. Finally, I'm not one of those people who makes friends easily.

The question is: what is my body trying to tell me? Where did I go wrong? Did I go wrong? How the hell does my body know, anyway? If I quit my job and moved back in with my parents, did a degree in journalism and started all over again, would my health improve, or worsen?

I just can't help thinking that my health is strongly intertwined with my lifestyle, but I can't find the crucial thread. The only options left seem pretty radical, and pretty terrifying. So I content myself with doing little things (current project: buying my own house) in the hope that some little extra comfort will lull my digestive system back to sleep.

But I can't help feeling that I should be doing something radical. If only I knew what.