Thursday, 26 January 2012

Hello Stoma

The day of the operation arrived and we had to be at the hospital for 7.30am.  The teen decided he’d see me when I came round later; 7.30 is very early for most of us, but especially for teenagers.  I took two valium the night before and didn’t sleep a wink.  At about 4am I decided I should write a letter to my son in case I died during surgery.  If I didn’t write it, I would surely expire on the operating table, leaving nothing behind for my child to cling to as he grew older, no message of how I would always be watching over him and if he fucked up I’d haunt him for the rest of his days.  So the letter was insurance – if I wrote it, he’d never get to read it.  I felt a bit stupid, scribbling and trying not to get tearful at the thought that I wouldn’t get to see what he did with his life; who he became; how many kids he’d have, whether he’d impregnate somebody I approved of.  It was all ridiculous, of course; I knew I wasn’t going to die - the surgeon had told me there was a 1% mortality rate and had pointed out that they usually do these surgeries on fairly old people.  He’d as good as told me I would definitely survive but at 4.15 in the morning, as I scratchily told my son how much I loved him and asked him to make sure his dad didn’t hook up with anyone horrible, I really didn’t feel sure.

It was still dark at 6 when I finally gave up on the whole sleep thing and got in the shower.  My last shower as a sealed unit.  It should have been memorable, there should have been a sense of occasion, but in the end it was just another shower, taken with an X drawn in permanent marker on my stomach, a couple of inches to the left of my tummy button, and down a bit.  They usually go on the right, apparently, but my bumper selection of scars meant there wasn’t anywhere on that side a bag could go.

The husband had no choice about coming to the hospital so early as he was driving me there.  We didn’t have much to say to each other that hadn’t already been said, so we left the talking to Chris Evans, who was interviewing Richard Madely in a field as we drove through a virtually traffic-free north London.  Strange, the things you remember.

The surgeon greeted me warmly, asked if I’d changed my mind, and then introduced me to the anaesthetist.  I remember being in a small room with a couple of young men making me repeat the word ‘professorial’ to see if I was being affected by whatever it was they were dripping into my hand.  I do remember that it took a lot more of whatever drug it was than they thought it would.  I’m only 5 feet tall – some might argue I’m a shade under that – but when it comes to pharmaceutical drugs I’m hardcore.  That’s what happens when you take a hundred mgs of pethidine three times a day for three and a half years.  Somebody said something about an epidural, somebody else took my knickers and the next thing I knew I was in recovery, throwing up into my oxygen mask.  And I couldn’t feel my legs. 

Some time later, I was on the High Dependency Unit and my husband, my teen, and both my sisters were looking concerned – I’d been left in recovery for hours it turned out, due to a lack of available porters.  My clothes were missing and I could feel a serious and agonising pain at the top of the scar that bisected my stomach from chest to pubis.  And I still couldn’t feel my legs.  ‘We’ll get you standing tomorrow,’ a pretty nurse told me.  ‘You won’t,’ I said back, ‘because I can’t feel my legs.’  Turned out the epidural was working just a bit lower than it should – my legs were numb and the top of my stomach wasn’t.  The surgeon sent somebody to take out the epidural and hook me up to patient controlled morphine – there are definitely some positives to having major surgery, and patient controlled morphine is one of them.  No pain.  Seriously – you press the button just enough and you have no pain.  Everyone should try morphine at least once; there’s nothing like it for taking the edge off.

The next morning they did indeed get me up and I walked a few steps, which felt like quite an achievement.  And then a lovely nurse washed me and was clearly trying to hide my new stoma.  ‘Don’t look at it yet,’ she told me.  ‘There’s plenty of time and it’ll probably just upset you this soon.’  I can see why they say that; there must be plenty of people who are freaked out by having a stoma; I know lots of people end up having ileostomy surgery as an emergency and are completely unprepared for it, but I’m not one of those people.  I wanted to see this thing that was about to change my life, and I wanted to see it immediately.  I assured her I would be okay with it – I knew what it was going to look like, I’d read the literature – so she reluctantly pulled the bag they’d put on in surgery away and watched me carefully, ready to console me in my horror and sadness.  I suppose it was a big moment; meeting my stoma for the first time, and when I saw it I couldn’t help but laugh.  It still had stitches around the base, but it wasn’t the big, ugly thing I’d expected.  It didn’t look as horrible as the ones in the booklet had; I actually thought it looked quite sweet, sticking up out of my tummy, waiting to start working, for me to give it something to work on.  Maybe it was because it was mine, the way an ugly baby belongs to its mother.  Certainly, I’d have no desire to look at anybody else’s, though I don’t think I’d be repulsed either.  But my one was quite a presentable little thing, so far unsullied by poo.  And it didn’t seem to mind me laughing at it. 

Later that day another nurse asked me if I had a name for it yet.  A name for my stoma.  A lot of people do name their stomas – some witty names like Winnie or Vesuvius, or just a friendly name like Stan or Albert.  I didn’t have a name for mine, and I still don’t; it just feels wrong to me.  I didn’t mind naming my child when he was born, but that seemed like a necessity; this didn’t.  Nearly a year and a half on, I still don’t feel any inclination to name it.  If I’m honest, I do think of it as a male thing, but that’s as far as I’m prepared to go.  One one occasion I referred to it as a ‘little monster’, but that’s not really a name is it?  It’s a Lady Gaga fan.  And I’ve never noticed it respond to her music in any way. 

Before the operation, I’d been in terrible, horrible pain for a year.  The kind of pain that made me want to rip my own head off, which would be silly because it would just cause more pain, but at least it would be a distraction from the original pain that really was unbearable.  Hence the high doses of pethidine, which helped just enough to stop me tearing off any other body parts.  After the operation, despite feeling the after-effects of being cut open and having what was left of my intestines tugged and pulled in all directions, that pain was gone.  I could feel it immediately.  And in return I now had an ileostomy, which as well as putting an end to that pain also meant I never had to sit on a toilet with agonising, searingly sore diarrhoea ever again.  I know I’ve said it before, but going to the toilet more than twenty times a day took up a serious amount of work and pleasure time; I was more than glad it was over.  All in all I’d had a pretty good couple of days.

1 comment:

  1. Hi again,

    Mine's called "Sid", which began as a hook for my now abandoned blog but has been useful when talking about it with my kids.

    I didn't feel the immediate effects of having a stoma that you did. I did suddenly have an appetite, which was pretty cool (until I had that inevitable shock 3 days after the surgery when my guts went "what, you wanted us to work?" and I was immobilised by a blockage for about 8 hours). But gradually, I just felt better and better.

    I still had issues - mainly psychological. But I most definitely had health. I had stamina and after the recovery from the surgery, I had no pain. None at all. It was only then that I realised how sad my life had been. How much it had been governed by lack of energy, fear of how I'd feel from day-to-day and the unpredictability of my bowels. I'd barely had half a life for over three years.

    People think it's hyperbole when I say my stoma gave me my life back, but it truly isn't.