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...