Pyoderma Gangrenosum

Da-da-da - doesn't it sounds horrible? Pyoderma Gangrenosum. You may remember that, after my colectomy and ileostomy formation, I had wound dehiscence, where the stitches in my stoma came away from the skin - gruesome, and left me with a big hole.

Well, this had been healing up relatively well, but when the 'bottom' of the hole reached surface level, it refused to grow skin - and then, seemed to grow. Gruesome, as I say. So, this yellowish, ulcer-y looking zone needed some attention. I was whisked from my lovely stoma nurse to the specialist IBD nurse, to the GI registrar, up to dermatology consultant. After about four hours of sitting around feeling sore and trying to mop up Mr Stoma's protestations, PYODERMA GANGRENOSUM was mooted. It turns out the way dermatology works is you sit in a room and various different dermatologists come and look at you and mutter gently to each other. I remember a family friend who was a Dr always said that Dermatology was the nicest specialism to go into because it basically involved looking at things and writing prescriptions for creams.

True to form, I ended up with a prescription for a cream - or rather, a very greasy ointment - Dermovate. Now, I only connected later on that this might be a bit of an issue:

a) because it's actually quite hard to apply a greasy ointment to a slimy ulcer

and

b) a greasy ointment doesn't exactly promote ileostomy bag adhesion.

Ho hum. I'm starting to get that thing that chronically ill people get where they end up with so many different specialists, and no-one really gets an overview - the dermatologists aren't experts in stomas (stomae? ostomy?), and the GI consultants aren't experts in skin problems - so basically I'm the one who has to try and be informed about everything. And of course, the problem with being an outpatient is the slowness of everything - you're not lying there in bed all day, ready for doctors to whisk around every morning and check on you. Instead it's a case of 'try this, come back to clinic in a week or call if anything goes wrong in the meantime' - but of course I'm never sure how 'wrong' is 'wrong'.

S0 - after a week of using the Dermovate ointment, I returned to the Dermatologists - who, in the vein of each department at Chelsea and Westminster having a specific ethnicity, seem to be of Indian extraction, though of the cut-glass-accent variety in which C&W specialises. In the meantime, they'd done some investigation of treatment of peristomal pyoderma gangrenosum, and ta-da, there were issues with adhesion when using a greasy ointment. The solution was apparently an using Orabase paste with mixed-in steroids - hooray. I'd used plain Orabase to pack the original dehiscence wound - it's a plainish paste that promotes healing, and sticks to mucous membranes. I rushed down to the hospital pharmacy with a prescription for 'Adcortyl in Orabase' in my hot little hand, only to find, after a nervous wait, that the product had been discontinued in March 2009.

Oh well. So I'm back on the Dermovate for the moment, awaiting news from the dermatologists. Meanwhile, I have to say, this is really one of the most gruesome things about this whole op so far - I've got used to a lot of really gross things over the last few months, but this looks like a horribly realistic special effect from Nightmare on Elm Street or similar - there's a massive, gruesome ulcer all around the stoma, with some strange kind of strings of flesh and small pockets around the outside. Not so pleasant. So perhaps that's the downside of dermatology - all you have to do is look at things, but they might not be very nice things.

Operation plus two months

Well, it's now two months post-colectomy. How do I feel about it?

1. Physically - hmm, well I still essentially have a big wound on my tummy, where the dehiscence (stitches coming apart, for the non-medically-vocabularied among us) is still working its magic. At least, from what looked like a bottomless pit around the stoma is now just wobbly, bloody flesh surrounding Mr S. Slightly joking, I asked the stoma nurse at C&W how the body would know when to grow skin. She got all concerned, and now I have to douse myself in 'stoma powder' as well as all my other gubbins. The result has been an increased amount of stinging-type pain - hooray. Sneezing and coughing etc feels like poking yourself in the stomach.

I'm much weaker than I was, still. I went back to work this week, which was mostly fine, though I realised how completely exhausting a simple half-hour commute really can be. Sitting down once you're there - that's fine. Driving, housework, shopping - everything needs a 'nice sit down' afterwards. And the dehydration! Christ, I thought I drank quite a lot of water, but then there are the times when you just forget - when you're on a long drive, or engrossed in something for a few hours - and then suddenly, everything goes a bit wobbly, and I need a 'nice sit down' quite urgently, along with a couple of pints of water and maybe a Dioralyte for good measure.

So that's all good fun.

2. Psychologically. Well, this is a bit trickier. I remember when I first got Ulcerative Colitis, lying in a hospital bed at 2am while a very pleasant doctor said 'I'm sure you'll be fine, but I have to let you know there's a faint possibility we'll have to remove your colon this evening' - and feeling absolutely petrified about it. Or rather, horrified, I suppose, once I learnt the details a bit more - a bag! External bowels! It's rather beyond your frame of reference when you're a 25 year old cool dude.

Anyway, as it turned out, I didn't have to have the big op that time, or again for the next year. For the whole time, the spectre of the op hung over me (well - I say the whole time, I think I only ever thought about it when I was having a bit of a colitis-y patch and started looking at websites etc). People on forums who'd gone for the op seemed quite happy with it, and assured others that 'it's not so bad', 'it's better than having the disease'. But. Somehow doesn't seem very convincing. And besides, it still seemed like the bogeyman option - perhaps to happen far in the future, if at all.

This was never helped by my mother doomily warning 'Oh - OH - you don't want to get a bag - make sure they don't operate on you! How terrible!'. And all the dreadful experiences her friends-of-friends' had had with stomas (stomae?).

I suppose this sets the scene for how I was going to feel about having a stoma. Well - it's not too bad, you know, those people are right. It's a bit of a pain, but it's not too bad. In the first day or two, I could barely look at it, but then it all had a slight air of novelty, and the lovely stoma nurses made it all seem quite bearable. Then, there's been a long period of moving from being basically an invalid smooching around in tracksuits and pyjamas - when having a bag attached to you feels as natural as having a drip or a blood pressure monitor plugged in - to being a real, functioning adult who goes to work, and cooks, and makes love - when to be honest, a bag feels quite alien - an uninvited and rather boorish guest.

So - what do I find difficult? Clothes is one thing - though the fact I've lost about a stone has given me a momentary thrill - but finding clothes that are comfortable, stylish etc is interesting. Especially as I tend to like things relatively close-fitting and sleek. Still, thankfully autumn is tickling at the fingertips, so with plenty of layering, I've done OK so far. I don't exactly feel comfortable or sexy though. And so my sex life has taken a hit. I'm not sure really how to restart it, either. Despite this, my partner's been completely amazing, thankfully. It's me who doesn't feel quite right.

And occasionally it strikes me - that no one else has to deal with this. Well - that's obvious, I suppose. But what I mean is that, occasionally, it feels a bit unfair, to have all these bloody health problems, and to have to spend so much time in and out of hospitals, and to feel so infirm and unwell when I'm really, actually, quite young. But it's the classic thing - if you try not to let it get to you, it usually doesn't. Just glimpses, every so often - when I remember something I used to do with ease, or see someone my age leaping about - or just sometimes, when I catch sight of my sort-of-emaciated body with a little medical appliance attached - I feel a twinge of self-pity. Ho hum.

Still - this is two months out of a whole life. Let's see what the next two months brings me.

Roadblock

So, the Stoma nurses and my 'ostomate' (I was trying a pun with the word 'mate' there, which didn't work that well) Fiona had told me about blockages, those rare but unpleasant occurrences that blight the be-stoma-ed.

Anyway, Friday lunchtime, I daringly had some peas along with my lunch. About half an hour later I started to feel nauseous, then after half an hour in bed feeling sorry for myself, threw up - a lot. About six hours later I'd decided it was some kind of blockage, and we toddled into Chelsea and Westminster A&E for a late night Friday dash. Annoyingly I'd booked a table at a posh restaurant to have a kind of belated anniversary dinner with my boyfriend, so I was most cross about that, rather than any impending health problems.

Thankfully I always seem to get sped through any kind of A&E waiting room queues, so I was in there being poked and prodded really quite quickly. I got fluids and bloods were taken (never quite sure what they're actually checking in these). I had chest and abdomen x-rays, and had a doctor's finger poked in the stoma - quite an unusual experience. Mr Stoma seemed to slightly burst to life, and I was able to keep a glass of water down, so I was sent home, feeling about 80% better.

I zonked myself out with lots of sleeping pills that night but woke at about 5am with a great pain - no sickness this time, at least. Oh God. My first instinct was to try and go back to sleep - not that rational, perhaps, but I was quite chemically subdued at this stage - so I necked a few Tramacet and pressed 'snooze on', mentally. Waking at about 9 I didn't feel much better, so after umming and ah-ing a bit, we got a taxi back to hospital. Despite the lack of nausea this time I felt physically much worse, and the pain was quite excruciating - I can't think of a correlative in everyday life. I suppose it felt a bit like painful constipation I got once when I was about 9 years old.

Anyway, this time I had even more doctors come around and poke me, and in between begging them for painkillers, I could tell it was all getting a bit surgery-y - the surgeon was hanging around and they were about to put an NG tube in. Now - I'd had an NG tube in when I woke up from the colectomy, which was unpleasant enough, but I didn't realise quite how unpleasant putting one in could be when you were actually awake. While I wrestled with a chunky male nurse forcing the thing down first one nostril, then the other, I could feel myself dripping with sweat and making bleating noises, while vomiting up what looked like foamy bile. Lovely. Anyway, the surgeon came around and decided it had been put in wrongly, perhaps into the lung. I was practically crying with gratitude by the time he pulled it out, though he was threatening to re-insert straight away. At that stage I suddenly realised most of the pain in my belly had gone... The bag was also filling up at a prodigious rate, thank god. Anyway, at that point the surgeon decided that I had healed myself again - and thankfully the bag continued to fill. I was let out with some dire warnings about having to have an NG drain again, and to come back immediately should the same thing happen.

I'm sitting at home now pondering whether I'm getting another blockage - I've become incredibly paranoid, so whenever the bag has a slow patch I start panicking. I'm trying to tell myself it's just because I ate about ten marshmallows a couple of hours ago, and I've just been slowed down. Apparently it's probably some kind of adhesion left after the operation, which it causing it... But I'm going to just relax and enjoy a Sunday night Miss Marple. We'll see if I get another midnight dash to A&E or not...

Operation: Colon

Arriving back at my beloved Chelsea and Westminster A&E (ER for American readers - it's strange, but I can only really associate 'ER' with the show ER - which just seems too glamorous for the real-life thing), I was whisked straight through to get some IV fluids and paracetamol, then taken up to the impressively-named 'Acute Medical Unit' where various doctors came and went. While being wheeled up, I ran into my charming Old Etonian consultant, who looked concerned while I did my slightly pathetic lying-down act. One thing I found after three weeks in hospital - it's difficult to look dignified and, well, 'well' while you're being wheeled from one place to another on a hospital bed.

After this they parked me in a ward with a number of ancient and leaky-looking men, including a chap who threw things when he felt he wasn't being paid enough attention. This was a bit of a shock, as I still wasn't really feeling that bad, and among these incredibly ill and depressed-looking old men wasn't really where I'd have classified myself.

Anyway, doctors came and went. I was on IV hydrocortisone at this stage, with fluids/potassium and various other bits and pieces being popped down my throat or in my arm at regular intervals. I settled down to becoming slowly institutionalised. I was still running to the toilet up to 15 times a day, I suppose. But again, I wasn't feeling that bad, apart from not really eating anything.

There was something a bit worrying, though - I wasn't really feeling significantly better, either. And the doctors who made their rounds every day weren't looking that positive. I had 'levels' of things that 'weren't going the right way'. This was my CRPs (C-reactive proteins - I don't really know what this is, but it wasn't good) and, most importantly, it turns out, my Albumin, which is the protein in your blood.

So I lay there for three or four days, when the surgeons started to appear. This was, as you'd imagine, a little disquieting. The most disquieting thing was how they would creep up, and reassure you so heavily that there was probably no need for them to see you, that everything would be fine, but it was just a precaution. Then they'd flick through your notes and fire some questions at the junior doctors, and look concerned. This disjuncture between their pseudo-sunny disposition on their first arrival, and their barely concealed pity/concern as they left was pretty alarming.

A quirk of Chelsea and Westminster (which, by the way, is a great hospital) is that all the medical doctors seem to be incredibly posh English people, and all the surgeons are Greek. Now I've written that, I sound like there's an interesting anecdote behind it - but sorry, there isn't. These are the kind of things you notice when you're lying in bed for so long.

Mr Tekkis, the head honcho surgeon, came in once a day to explain how he thought I was. Bad news - the albumin was going down and down, which essentially meant I was getting weaker and weaker, and my body less and less able to heal. This was because of the steroids, the colitis, and a lovely new drug I'd been on for a few days - Cyclosporin, an immunosuppressant. He started off by saying it was '50/50' whether I'd be going under the knife. Then it became '50/50, but slightly more on the surgery side' - which I guess didn't really mean 50/50. Then, suddenly, on Friday evening, one of the junior surgeons came up and got my signature on a nasty little bit of paper saying that I was quite happy to go in for a subtotal colectomy. I suppose Mr Tekkis was away playing tennis or whatever it is that surgeons do on weekends.

It all happened a bit quicker than I thought. I didn't get much chance to think about it - which was probably all for the best, if I think about it. On Saturday, a charming German anaesthetist came and half-explained what happened. I was quite excited about having anaesthetic - I mean, come on, there's not much else to look forward to. Then I was wheeled up to the mysterious fifth floor, where the surgery happens.

Oddly, the ceilings were painted with jolly murals depicting little flying birds, blue skies and pseudo-Mediterranean tiled roofs. The nice German whispered things in my ear while I got painkillers and other bits and pieces inserted, and then said 'In a moment, you'll go to sleep'. I was at least expecting a 'count down from ten' moment, but it was quite nice, at least. Zzzzz.

Some time later, I woke up in 'recovery' - a giant room that I imagine on ordinary weekdays was filled with people slowly coming round from major surgery. On this particular Saturday, there was little old me and a wailing child, who may or may not have been French - I'm not quite sure how much I was hallucinating, because I also thought I was in Le Meridien hotel - just for a split second, mind.

The nurses in recovery, as you might forgive them for being at 4.30pm on Saturday, were chatting over my prostrate body about their plans for the weekend. All I really wanted was a big hug. Instead, I got a kind of big hot lilo over me that kept me warm - this is at least called a Bair Hugger, which I only found out afterwards, but made me feel a bit better. I had vague recollections of being lifted and hauled about a bit. And feeling cold, then hot, then cold.

It's strange, because one of my main concerns when I went into theatre was that I would wet myself. No-one really explains that they've got this all figured out. You wake up to find a tube right up there - hooray! And there was obviously no issue with the rear end, given this was now non-functional.

But the weirdest part was that I couldn't really feel any of this. I didn't realise why at the time - but along with the urinary catheter and ileostomy, they'd popped in an epidural. This is a local anaesthetic in your spine - I only really knew anything about it in terms of women in labour. Still, as far as I'm concerned it was just another little box on a stand that went around with me.

Back to the ward after recovery was pretty traumatic. I had a naso-gastric tube which went up my nose and into my stomach (as you'd imagine), and gave me a voice a bit like Marge Simpson's sisters. I was obviously also basically unable to move, given the epidural kept me numb from diaphragm to toes. BBC Radio 4 kept me sane for the first 24 hours, as I listened my way through all manner of crap. Thank God for all these crazy British socialist inventions like the NHS and the BBC. So I just lay there, listening to Jenni Murray's soothing voice, depositing involuntarily into various bags, while other bags pumped the good stuff back into me.

The story so far...

Well, the basics are this: I was diagnosed with Ulcerative Colitis last August, after a few weeks of what I thought was a nasty stomach bug. I (rather excitingly, I thought, at the time) got rushed into hospital in a real ambulance, where a very swift diagnosis was made - I hadn't really heard of UC at the time and was mostly worried that I had bowel cancer. As people say, having a name for the disease - and satisfying that annoying voice saying 'pull yourself together, you pathetic bastard!' - was super, and getting treatment was even better.

So, I was in hospital for about a week, in 2008, and then had about, say, 9 weeks off work. Swallowing diminishing numbers of those little red Prednisolone pills, I got better rather slowly, but by November, life was back to normal. I spent a long time avidly reading forums and blogs about UC, but then more-or-less forgot about having it, other than taking the big red Mezavant pills every day before bed.

I gaily went about my life until the beginning of June 2009, when the strange colitis-y feelings began to return, intruding on my holiday. I was on a strange vacation with my mother and 13 other OAPs, painting watercolours of nice flowers and landscapes and things. Again, when it started off, I just felt 'not quite right' - which sounds something like an advert for thrush now I type it - and spent a lot of time in bed. Returning to England, I connected up the fact that I'd been given anti-inflammatory pills to treat my arthritis with the uneasy bowel feeling. I stopped taking them and felt instantly better.

Off to Paris for my cousin's wedding, I didn't feel quite right, but at the same time was determined to 'enjoy' myself - mostly involving getting really drunk to avoid the awkwardness of a family occasion. Being seated at a table isolated among a group of trendy Parisian 20-somethings added to my anxiety, and added to my drinking.

Anyway, I didn't feel as ill as I deserved to, but still was having quite a lot of trips to the bathroom. About three days into our trip, I realised I couldn't actually do anything. At all. So the last couple of days were spent lying in the hotel, feeling annoyed.

Back in the UK again, I arranged to see my specialist at Chelsea and Westminster Hospital, and limped into work with the liberal and expensive help of the black cab drivers of London.

I'd assumed it would be the same as before, and to start with, it more or less was - I toddled home with 65mg of Prednisolone to take every day, and began lying about in bed with a bit more medical backing. Dr Ng, one of my lovely specialists at C&W, had mentioned that I should go back in if it wasn't improving within 3-4 days. My frequency didn't really change that much, and I react pretty badly to steroids anyway - but still, I sort of didn't feel too bad. I actually ended up going into hospital - and I realise this sounds ridiculous and really quite bad writing it now - mostly because I thought it would look a bit more 'real' if I told my work that I'd been in hospital again. I was quite panicky at the time that it would end up being another three months off work, and worried that even my cushy public sector employer would start grumbling.

I feel like starting this paragraph 'little did I know...' or something else suitably portentous and cliched. But, yes, what came next was a bit of a shock.