ABMU November 2012 (yes, it's been a while)

Yes, it's been a while since I posted my latest medical update, and you may wonder why. Alternatively, you may wonder why I'm posting one now, and that's probably the more interesting question. At least, that's the question I'm going to answer. The reason I'm posting one now is because I've been reviewing my medical posts and finding them quite useful. And why have I been reviewing my medical posts? Ah, well, perhaps we'd better fill in some background first.

My last medical post, back in 2009, held dark mutterings of redundancy and flat-selling and stress, coupled with a declining response to Infliximab. Looking back, I'd forgotten quite how grim things got, with the anal fissures and the inflammation round the anus. It was not a pleasant time. Happily, my personal circumstances are considerably better now, even if the medical situation is not completely perfect. I have moved down south to be with GF (now fiancée), bought a house and spent the last two years renovating it (a not-entirely stress-free experience). Over this whole period I have been on Infliximab and nothign else, and my response to it has been... okay - in general I've been getting maybe four weeks of good response, coupled with a couple of weeks of gradual decline before the next infusion. This was acceptable - the rough patches were sometimes pretty exhausting, but in general the worst symptoms were diarrhoea and exhaustion. However, over the last year or so this delicate balance has gone slightly awry. First, for reasons I don't remember ever identifying, I started getting problems with constipation. So the first week of my infusion I would get quite badly bunged-up. This would often result in quite bloody stools, and small anal fissures. I would have a week of constipation, followed by a bout of runny stuff, then go back to being constipated, etc. My bum suffered, as did I. Adventures such as taking GF (okay, let's just go ahead and give her a name at this point - she's called Lucy) to Venice for the weekend were traumatic and difficult. That was back in February. So after a few poor months, round about Easter I had a bad flareup and spent a fortnight off work. As a result (and admittedly a few throwaway remarks by yours truly) the hospital decided I was losing response to Infliximab and started talking about putting me into a drugs trial for something new.I went in for an assessment; it turns out I was only just inside the acceptance criteria for the trial - these things are decided by turning questionnaire responses into points, and essentially I managed to duck under the wire because I described my current state of health as 'very poor'. So far, so good. The only catch: I needed to be free of the Infliximab, which meant waiting eight weeks. Now I was presented with a choice - wait a fortnight (it was six weeks since my last infusion) and go straight into the trial, or have one last fling with the Infliximab. Because I basically did not believe I'd lost response to the Infliximab, I chose to have one last infusion. Sure enough, the drug pulled me back up, and I had a good four weeks. But as per the terms of the deal, I waited out eight weeks befoe phoning the hospital and re-engaging with the drugs trial process.
But here's the irony: when I re-did the acceptance questionnaire, it turns out I was too well to go into the trial! The only difference was I wasn't feeling quite so poorly, so had rated my general health slightly better. On the basis of this, I was no longer eligible. Also on the basis of this, the hjospital then decided to mave my infusions to eight weeks apart instead of six. On such tiny flaps of a butterfly's wing, great storms condense.
So fast forward, now to the present day - and I have to tell you, dear reader, the eight-weekly infusions have not gone particularly well. I have started a daily record of how much I poo each day (if you're lucky I'll publish some graphs at some point), and it shows a very steady cycle ove rth elast three months. I get between 25 and 28 days of good response to the Infliximab (by which I mean, pooing once or twice a day, with faeces of a solid nature) - and thereafter a fairly wuick decline ot the point where I am releasing a gush of liquid six, seven, sometimes even eight times a day. Having endured his since May, I have decided enough was enough and called the hopsital. So now I am back on six-weekly infusions... but they have also decided to put me on mercaptopurine, at the same time as the Infliximab.
So this brings me back to the question of why I have been perusing my old blog entries: because I have been on 6MP before, although it was so long ago I had forgotten what it was like. So when the IBD nurse at Addenbrookes asked me questions like "how did you get on with it before?" I suddenly realized I had something better than my own rosy memories to rifle through. Hence, rifling.
I say 'rosy memoies' because the blog posts suggest a slightly darker picture than I'd remembered. My recollection was that the 6MP had been good but not good enough, and I'd had a gradual decline over perhaps a year to the point where I'd ended up changing to a new treatment. However, it looks like the 6MP treamtent coincided with anal fissures... so I am somewhat nervous. Since I have some say inteh process, I am planing to delay the 6MP treatment for a while until we canget some visibility of how going back to six-weekly infusions is panning out.

ABMU April 2009

Okay, so I guess I've been meaning to update the Boring Medical Updates for several months now, and I see that the last one was posted in September... well, a lot has changed since then, and a lot has stayed the same.

As the saying goes.

So: at the end of the last installment, I was about to go in for my first infusion of infliximab, and suffering from a sore bum and generally feeling crap. It turned out that the sore bum was nothing to do with the drugs - it was the Crohn's inflammation which had worked its way down to my anus and was spreading onto the skin around the outside. If anything, it was worse than the anal fissure because it was always there - you couldn't make it go away by sitting still.
But back to the medication: the infliximab worked. It WORKED. Shout it from the rooftops, it kicked in and made me FEEL GREAT. Not full of beans, but you know, normal. Able to consider the possibility of doing things like going skiing, going cycling, sailing, etc. Wonderful!  It was not without its downside, though - for one thing, I was still injecting myself with methotrexate, which I absolutely hated and which made me feel slightly nauseous for days afterwards. For another, there was the matter of an annoying skin sensitivity which has hung around persistently. More on that anon.

Infliximab is administered via what is known as an 'infusion'. If that puts you in mind of soothing herbal tea, possibly handed out by nurses on some sunny verandah somewhere... well, stop. Stop it right now. In actual fact, it is better known as being 'on a drip' for a couple of hours, with a needle in the back of your hand and some beeping bit of machinery gradually introducing this new toxicness into your system. Western General does have some nice leather armchairs (courtesy of the drugs company - thanks, drug company) for you to lounge in during this period, which is another reason why the stuff is way better than methotrexate. Happily, come Christmas I was able to leave the methotrexate stuff behind - no more plunging inch-long needles into my own belly, yay! Now it's just me and the infliximab...

First, the benefits - it works. The Crohn's inflammation round my arse cleared up, my anal fissures healed in double-quick time, and everything coming out was suddenly solid! I had more energy - in fact, for the first time in a long, long time, I was able to conceive of taking on more activities of an evening! No longer was I limited to working, eating and sleeping! Whoopee!

Next, the drawbacks. Most prosaically, this sudden firmness of the stool was a bit of a shock, and my bottom struggled with it for a bit. However, feeling a bit stretched every so often was a small price to pay, frankly. The other drawback, however, is a little annoying. For some reason the infliximab makes my skin much more sensitive, and itchy. Unless I'm careful, I find myself scratching it to the point of causing a nasty rash on my arms. However, I've started taking these one-a-day anti-histamine pills, which keeps it under control - although I still find myself occasionally giving the upper arms an absent-minded rub. Just got to keep an eye on that.

There is one final problem with this wonder-drug. For the first few infusions (so, call that three months), it seemed to work flawlessly, and I was completely solid and symptom-free from one session to the next.  However, since January, I've noticed that the effects are beginning to wear off as I approach the next infusion. Now, this also coincides with the point at which my former employers started talking about a redundancy program, which I will freely admit made me rather stressed (and not just me, either - but that's a different story). So there might be an element of stress-related flare-up in there. It's not uncommon. However, over the last two infusions, it seems like the last two weeks before a session have seen me on a decline. In fact, last time I ended up in bed for the entire fortnight!

In response to this, the hospital have reduced my infusion interval from eight to six weeks. This is my first six-week interval; right now, it's four weeks since the last one and two weeks to go before the next. Right now, I feel pretty good. This is a good sign since I am in the middle of moving house, selling my flat, and finding a new job - all very stressful undertakings, I'm sure you'll agree. What's more, I'm changing hospitals - so my next infusion will (if they ever ring me back) be in Addenbrooke's, and not anywhere in Scotchland.

So right now, we stand on the eve of great changes, and only time will tell...

ABMU the next

ARGH! I just wrote a pretty epic Boring Medical Update which X has lost. Dagnammit. %$&%*$! %*$&%*^^^^^!
I seethe.
So, the short version now, as I am thoroughly pissed off. A lot has happened since October. The anal fissure that seemed to be on the mend persisted, and persisted, and persisted, until EASTER. At that time my colitis was so bad I spent the Easter weekend in bed (at my girlfriend's parents - great impression, huh). So, a change of medication was called for, and I've been on methotrexate, which makes me feel nauseous two days every week, and requires some considerable time off work for getting the necessary blood tests done (every week) and going to get The Jab. Even better, the anal fissure RETURNED after about a month. Even better than that, the skin around what the hospital staff rather charmingly persist in referring to as my 'tail end' has become very swollen and sore. Since there is no sign of an abscess or fistulae, my current theory is that this might be to do with the methotrexate, which can apparently be detected in patients' rectal mucosa (whatever the heck that is), and is also a skin irritant. So I'm thinking, either due to the fissure or my own deliberate attempts to keep my botty relaxed (trying to keep good blood circulation), there might be a small amount of discharge which is getting onto the bumskin and making it go bananas.
The main alternative theory is that it's an infection of some sort, which would suggest infliximab treatment can't start until it's fixed.
Tomorrow I go into hospital for my first infusion of Infliximab, which may or may not work, but sounds rather scary anyway. Right now, though, I feel like I've hit a bit of a low point. Frankly, the bottom soreness eclipses both the anal fissure and the colitis (which is actually Crohn's Disease, according to the latest colonoscopy). I don't know how I will manage when I go back to work on Tuesday, because I just feel so low and feeble. To top it off, I've been back from holidays for a couple of days, the weather is miserable, and half my windows are obscured by scaffolding, making the flat a very dingy and dispiriting place, especially for someone whose sore bottom really means they should just stay at home.
All in all, pretty miserable.

ABMU (2)

    (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.

A medical update

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.

Genetic telltale identified for Crohns Disease

http://news.bbc.co.uk/1/hi/health/6724369.stm
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.

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.

Iritis

And I was doing so
well.

It's been what, six
weeks?, since I started taking the 6MP immune suppressant ex-chemo-drug, and
it's been going pretty well. As ever, still taking it pretty easy (um.. well,
except for a weekend of dashing madly around London trying to see everything)...
so no lacrosse or sailing. In fact, one choir rehearsal a week is proving a
sufficient challenge right at the moment. But I've been putting on
weight! I haven't done that since I was...um... I dunno, fifteen?
Maybe? And in the last month I've put on about 7 kilos, which is unheard of.
Admittedly, I've been pretty tired, and felt slightly queasy, which may or may
not be normal - but it's still better than the alternative. So I've been pretty
happy.

Until last Saturday,
that is. Last Saturday my left eye started to feel slightly sore, as if I'd been
wearing a contact lens for too long. Over the weekend it got gradually worse,
until yesterday I could stand it no more, and took myself off to the eye
hospital, where it turns out I have Iritis. Yup, it's not a made-up word ("I
have eye-itis?!"), it's a real illness. Personally, I always thought the iris
was the name for the hole in your eye, and I was wondering how that could be
inflamed - but that's just me showing my ignorance. Apparently iritis is often
linked to ulcerative colitis - your eye gets very red and irritated (just like
leaving a contact lense in for a couple of days too many), and bright lights
hurt.

So anyway, now I
have two sets of eye drops and an ointment to stick in as well (not as bad as
I'd thought), and my pupils are two different sizes. And it sounds like I'll be
that way for a couple of weeks. Really not sure if I should be driving (probably
not).

Having eye problems
does make you wonder about what would happen if you lost an eye, or worse. I did
get quite despondent; engineering and design are pretty visual careers, and right now I'm
having difficulty focusing on anything closer than about a foot away which makes
detail work doubly hard. But then, Gordon Banks managed to still be a
professional goalkeeper with only one eye, and if you can do that then pretty
much anything is possible, right?

More medical stuff

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.

Another boring medical update

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.

Please release me...

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...

Stuck in bed again

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.

Azathioprine

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...

My career as a guinea pig - fin

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!

I bought some Lego

I'm a bad person. I did a bad, bad thing.



I bought me some Lego.



(heeheehee)



I marched into ToysRUs, wandered up and down the place for a bit,
pretending to be interested in the Batman action figures (pah) before
returning to the shelves, grabbing a couple of the (bigger) boxes, and
marching out. (there was a paying bit, but that's boring so I'm not
mentioning it).



There is method in my madness, however. I have as a little pet project
the intention of making a solar-powered sweeping robot to clean the
(wooden) floors in my new flat (which I move into in two weeks). And I
shall make it out of Lego. But the lego robot unit I want to use
doesn't come out until mid-September (I'm waiting for the new one), so
I figured a radio control version would be a good halfway-house - I can
do the prototyping work on it, then build in the robot bit later.
Granted, a radio-controlled floor-sweeper won't make the job any less
time-consuming, but I figure it'll be kinda fun to zoom it round the
house from the comfort of my sofa (which I don't yet own).



Lego sure has come a long way in the last..er... fifteen years. I'm not
sure I approve wholeheartedly... but I was once again struck by just
how sublimely flexible the whole system is. And I was doubly struck by
the extreme cleverness of the people who put together these kits. All
of a sudden, some apparently-random components (which elsewhere in the
design are used for mechanical transmission, or bridging a gap)
suddenly coalesce into a pretty good-looking engine grille!



But I am feeling a leettle bit thwarted. The radio controlled car comes from a series called
'Racers', which is clearly designed to be rather meatier than the
normal stuff, and is only just barely compatible
with the regular bits. In fact, the regular Lego Technic dumper truck I
also bought looks rather tiny and pathetic next to this brute. And then
there's the tiny problem that the radio-controlled car goes about
twenty times as fast as I want my floor-sweeper to go... and
all the gearing and steering bits for the RC car are inside a
sealed unit! This is Lego built for brutality, and not for
flexibility. I disapprove. I'll just have to take it into work and open
up the sealed unit, that's all. Irritating, though.



Nonetheless - Lego! Mine! Fun! And total guilt, of course. I mean, a thirty-year-old man, playing with Lego...



On unrelated topics, the TV in my flat has died. This is very annoying,
as it's not mine, and the owner is in India and comes back in two
weeks. I'm mildly annoyed at the idea of living without TV for that
time, but what am I supposed to do? I could try and get it fixed, I
suppose - but she might want to buy a new one, and anyway, I'm
reluctant to spend my money on something which was clearly on its way
out (it's been playing up for a while).



No, you're right, I should try and get it fixed. Damn. How annoying.



And... I'm still ill. Damn these useless freakin'
drugs, they're hopeless. Look - on Sunday I got up late, I went to
ToysRUs on the aforementioned mission, I went for a bit of a drive
around for an hour or so, then I came home. I felt tired and went to
bed - at SEVEN. And I stayed there 'til NINE this morning. That is
all it took to completely exhaust me. That's not
good at all. This is one reason why I went out and bought this stupid
stuff - to make me feel a bit better about feeling tired all the time.
This really sucks.

My career as a guinea pig (3) - two weeks down

This really sucks. Two weeks down, and I've felt terrible. This vast
number of pills that I'm taking (13 pills every morning, with another
six during the day) don't seem to be touching my UC at all. I spent
most of last week off work (too ill even to pester my Multiply buddies
- how bad is that?!), and although I've managed to get to work every
day this week, that's only by dint of not doing anything else and
getting really early nights.



So let's recap: the first day I popped the pills I was really
hyperactive - but after that, nuthin'. I had one day off towards the
end of the week. Then, at the beginning of the second week, I exhausted
myself by taking the train down to Devon (seven hours sitting still -
that's all it takes to lay me out, apparently), with the result that I
took another three days off work. Now I still feel run-down (in a very
literal, steamroller kind of way), I get horrendous trapped wind and
everything is very gurgly and liquid. This is exacerbated because my
fridge also gurgles, so we sit together in the kitchen and gurgle in
sympathy.

"Was that you, or me? Oh wait, I'm talking to a fridge."



So now, I've made it through an entire week of work, albeit by
stepping on eggshells the entire way. But the sorry truth is that I
can't do my job properly when I'm feeling this bad anyway - it's hard
being creative when your gut feels like someone put it through a
blender - so at the moment I'm just a very highly paid draughtsman.
which really, really sucks, because I hate that part
of my job at the best of times.



I don't want to drop out of the tests. I really want to help, if I can.
And even if I did, I still might have to tail off the dose slowly, so I
wouldn't be out of the woods yet.



All the same, I don't think I can take another fortnight like that. Let alone another two months.

My career as a guinea pig (2) - day 1

I've had quite an afternoon. While I was working on some design stuff
at work (which has been going very well - I think I've got more done
this afternoon than in the whole of last week), I jotted down a little
list of T-shirt slogans. Then, it occurred to me that my usual abstract
linear doodles would be interesting as stained glass, so I doodled with
that idea for a bit, trying to work out a way in which stained glass
could be made with bits of lead suspended in it (answer: it can't..
well, it can, but not without it no longer being stained glass. I think). Then I
decided that some of the simpler ones might make interesting two-colour mosaic
tiles... but I got bored with that pretty quickly.



But I was impressed. That's quite a run of creativity for a Wednesday
afternoon! And doing good work at the same time! Normally by this time I'd have had a sh1t day and be
thinking tiredly about going home, microwaving a ready-meal and
crawling into bed. But instead, I actually caught myself thinking, "The
flat could do with a bit of a tidy-up when I get back." Blimey! I
thought. What's going on?



And then I remembered. Today is Day 1 of Matt On Steroids. Oh yeah.



I'm guessing this probably means I'm taking Prednisolone rather than the newer, more targeted one. Hey ho.

My career as a guinea pig

I had a very odd phone call on Wednesday. It was clearly on someone's
mobile, and I could only work out every other word. The lady at the
other end had a proper Edinburgh accent (I'm hopeless at decoding
foreign languages), so that didn't help, but it was only when I heard
the words 'study', 'Ian' and (crucially) 'Prednisolone' that I finally
twigged.



My consultant was asking me to take part in a medical experiment! Cool.



I have ulcerative colitis (it's similar to Irritable Bowel Syndrome)
and when things get really bad then I have in the past gone on a quick
course of steroids to help my body heal. This is prednisolone - it's a
pretty common, all-purpose sort of steroid. I daresay a few of you will
have had it at some point or other. Anyway, apparently this is some
sort of study of a different delivery method for the stuff, which
should enable it to focus better on the affected region (and not make
me generally hyperactive). So, of course, I said yes. I like to help
out, and furthering the cause of medical science has got to be a good
thing, right? And my UC is pretty bad at the moment - I declined to go
for a twenty-minute walk at lunchtime today because I don't have the
energy. That's pretty awful.



My thoughts did stray to those poor people who had to be hospitalised
after their drug test went horribly wrong, but I didn't worry too much
about that. This isn't a new drug per se; it's the old one, repackaged.
It's not going anywhere it hasn't been before. So I'm not worried.
Plus, I get an electronic diary to note down all the effects! Who knew
- medical experiments come with toys (or possibly vice versa).



There were some disadvantages (if you don't know what a sigmoidoscopy
is, then believe me - it's not what you'd rather be doing on a
Wednesday afternoon), but hey, hopefully the world will be a better
place as a result.



So don't say I don't do anything for ya.

I am ill

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.