Mad March hares

Hello again. A few updates since last time.

1. I'm apparently all booked in for stage two - J-pouch creation. I went in to Mr Tekkis at Chelsea and Westminster Hospital a couple of weeks ago, and he decided I'd be ok to go ahead. I needed another two stages - one to get the pouch made, after which he'd do me a loop ileostomy (as opposed to Mr Stoma - he's currently an end ileostomy), and after ten days or so in hospital, I'd go home and rest for about two months in total. Then I'd be whisked back in to have my 'take-down' - for the unfamiliar, this is where they reconnect everything and you can start to export waste in a relatively normal way. Hooray!

2. Health insurance. It seems salient to discuss this given the exciting news in the US. After my meeting with Mr Tekkis, I toddled home to find out if my private health insurance would cover the next ops. For those not familiar with the UK health system, anyone can get pretty much anything they need for free (well, free at point of need - you pay for it with taxes etc but it seems nice and free at the time) - so you don't need private health insurance (and in fact, philosophically/politically I'm quite against the whole concept). However, I do have health insurance - my mother pays for it, which is one of the more embarrassing things that a 26 year old man can say. And despite my ethical objections, I'm more than willing to take advantage of a guaranteed private room, lax visiting hours and decent food when it's on offer. Champagne socialist, that's me.

Coincidentally - I also recently started reading Stephanie's Story, which is written by quite an amazing young American woman who has faced similar procedures to mine, and done so with an brilliantly cheery outlook, which is both excellent and inspirational. And a major concern for her had been being in between operations and illnesses but not having health insurance. Now, obviously, I'm not naive - I know a lot of people in the States are uninsured, which is what the whole legislative process that's just coming to an end has been all about. But actually reading about the different ways she's worked around this - it's completely unbelievable. Having hot showers and yoghurt in the hope of clearing blockages, because you can't go to A&E; not being able to see the stoma nurse; having to pay for medicines and stoma supplies... it's just bizarre that in the world's wealthiest country, that's happening for anyone at all!

So anyway, I give thanks for the NHS, which for all it's flaws has saved my life at least twice, kept me in free medication, free stoma supplies, excellent postoperative care and follow up, without once having to worry about whether I could afford it or not.

3. Stoma practicalities - I realise I haven't ever really spoken about the little things that make a difference to me, day-to-day. There's been a few things recently. In particular, I'd always had trouble getting the bag to stick to me successfully for a full day - I think this was partly because my stoma wasn't terribly well sited before the op, and partly because of both my pyoderma and the scarring that it's left behind. I tried an Oakmed 1-piece bag for a while, which were just super for adhesion, because they combined a tegaderm-type, really sticky, thin film type area with an ordinary yellowy zone (brilliant technical language, here - my apologies).

To be continued...

Social situations

I wonder. The thing about having a stoma is that, although a lot of my friends know about Mr Stoma, it's strange that most people don't. I look pretty much the same as most normal people.

I wonder about this because of the embarrassment that have a stoma really can cause - or at least the embarrasment that it can make you feel. I was out this evening for drinks with friends. I was having a lovely time - give me some wine, some good company and a Friday night and I couldn't really be happier. Everything was paddling along fine, until I felt a slightly familiar slippery feeling. I toddled off to the toilet to check things out and realised I'd left a small pool of shit on the bench seat, in between two of my friends. Now, the joy is that we'd ended up having a late night meal in Wagamama, which for the non-initiated in a chain of slick-but-simple Japanese restaurants here in the UK. So- and this is quite a sad, if fortunate, fact - my pool of faeces looked like a small puddle of katsu curry sauce, which the waitress cheerfully mopped up as if I'd just been a piglet-ishly sloppy eater.

But - it really was quiet mortifying nonetheless. I had to jump in a cab back home straightaway.

This is really what alarms me about the Jpouch operation. As I said, I love having a drunken evening out with friends, but it does lead to significantly more liquid output, and therefore increased leakage potential - which is embarrassing but also a logistical nightmare. So what happens when that's all going on inside you - or leaking out of your rectum (anus? all such lovely words, and I don't quite know which one it should be)? I suppose I'll have to learn to be careful with my diet, and stop worrying. But literally - I do love having a drink and a nice meal out. I'm a bit scared that I won't ever be able to get hammered like I do now - a peculiarly British fear, I'm sure. But I suppose I worry that it's a bit like growing up slightly faster than I'd like. Watching what I eat, what I drink, how late I stay up. Still - it's all saving my life; and at least not-drinking is actually better for you in the long run than drinking...

Moving on...

Well, it's been an age since I last wrote anything about colon-free existence. Still - not much to report.

I have:

• battled Pyoderma Gangrenosum back and forth - almost killed the bastard, then got complacent and it nibbled another grotesque hole in me. Anyway, it's down to a 5mm patch that I conscienciously swab with steroid paste every day. I'm determined to get it back.
• rediscovered my sex life! My long-suffering and wonderful boyfriend gave me time - a long time - to start feeling like sex again. To be honest, it's weird, because you can get out of the habit quite quickly, and when your body doesn't feel... quite... your own, it's difficult to feel sexual. I wonder if anyone else has experienced the same thing?
• worked out clothing options to deal with my slightly altered physique. This actually works quite nicely in the winter - so I've timed the whole thing perfectly...
  

Which brings me on to my next point. I went to see my surgeon at Chelsea and Westminster last week and he raised the possibility of the next step - J-pouch life!

As he led me through the options - keep the ileostomy and have my 'rectal stump' removed (I love these phrases - really makes you feel like an attractive human being) or go for the jpouch. He gave me a long explanation that involved his tie jauntily playing the part of my ileum.

Apparently he has some patients who prefer to keep the bag on the outside - one who wanted to 'go into the bush' - something I'd never do. But it also made me think - surely going out on an expedition it'd be rather harder to fiddle about with stupid little bags, wipes, glue etc. But, I digress. Perhaps it works better for some people, and as I said, something I'd never do - I get a bit itchy if I drive outside London.

It's strange really, because I was rather apprehensive about the pouch operation - not least because it was quite horrendous having the last one and I managed to have all these irritating little complications. He made it sound really quite good, claiming it offered the best quality of life.

Then - 'what did I want to do?' It's strange how doctors always ask you that, considering, really, they know a lot more about it than you do.

So, anyway, I said I'd give it a go. Watch this space.

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.