Thursday, 28 June 2012

The Stoma and The Hag

After surgery, I tend to have retching sessions.  It’s not very pleasant, for me or for anyone around me.  When it happened after the first surgery, when I was on the ward with the lovely, supportive women, they did everything they could to make me feel better about it.  They were warm, and lovely, and helpful and soothing.  When it happened late one night, the woman opposite me came over and soaked a flannel in cool water, which she held against my forehead.  Another night, when I couldn’t stop retching and my body started involuntarily twitching as well, while everyone was asleep, I called the night nurse.  She was an agency nurse, and I hadn’t met her before.  She told me to relax.  When I told my surgeon the next day, he said it was impressive that I hadn’t punched her.  Relax.  When you’re retching and your body is twitching like you’ve got St Vitus Dance, you can imagine how helpful it is to be told to relax.  As though you hadn’t thought of that yourself and had instead chosen to put your entire being through a series of hideous spasms just because it was late at night and you were bored.  I’ve met very few nurses who I didn’t think were complete, devoted, extraordinary angels, but the few I have have always, without exception, been agency nurses.  I should add that I’ve also met plenty of lovely agency nurses.  Bad nurses are, thank goodness, and at least in my experience, a rarity.  I didn’t call that particular nurse again, but fortunately another of my gorgeous room-mates had woken up herself and seen the mess I was in.  When the nurse had gone, she came over and tried to talk me down, and when that didn’t work, she slipped me a diazepam.  That’s wrong, obviously; wrong and naughty and I don’t condone it at all, or suggest that anyone else do similar.  I wasn’t prescribed the diazepam; I was on plenty of other drugs that were prescribed, but I’m also an experienced pharmaceutical user, as was she, and we both kind of knew it would be all right.  And though it’s wrong, wrong, wrong – I can’t stress that enough – it worked, and I was finally able to fall asleep.  I tell you all of this, so that you are clear about how lovely fellow patients can be.

Another thing I should mention is my stoma.  What with my eye, and the butt wound, and the re-re-re-opened scar that bisected my torso, I hadn’t given much thought to my stoma, but even regular readers (and I’m told there are some) may well not remember that some time earlier it had prolapsed.  This basically meant it got very, very long, which was more than a little disconcerting.  Special underwear and constantly worn waistbands had sorted it out on a day-to-day basis, but the surgeon and I had discussed whether it could be fixed properly during my proctectomy operation.  Unfortunately, to completely fix it would involve resiting it, and as my stomach is scarred like some kind of constantly rewritten road-map with none of the earlier routes erased, that wasn’t an option.  My stoma is sited on the only little bit of tummy I have that isn’t lumpy and bumpy with scar tissue.  In fact, my surgeon decreed that the only place he could possibly resite it was on my forehead and for obvious reasons he wasn’t up for doing that.  Instead, he told me, he would refashion it.  That sounds good doesn’t it?  Kind of swanky; like he was going to make it into some sort of cool, radical stoma that all other stomas would envy and wish they could emulate.  Like I was going to have the fanciest stoma in town.  That wasn’t what it meant, as it turned out; I think he just fiddled with it a bit and pulled what he could back in, and rebuilt it slightly in a kind of cut-price six million dollar man way.  Though I didn’t realise it was different at first.  At first, I just panicked.

I should fill you in on my bag changing routine, as it was before the surgery.  It took a while, up to thirty minutes or so, on a bad day.  I had to take off the old bag, wash the area, wait for it to dry, spray with barrier stuff, wait for that to dry, sprinkle with powder to stop the skin breaking, tap off the excess, then smear paste all the way around the base of the stoma; that was the bit that would take a while, but it was also the bit that prevented leaks.  I’d found the best way to do all of that was lying on the floor, with my neck and head leaning against the bath tub.  Not exactly a simple process, but I’d tried lots of different positions and techniques and that was the one that worked.  The most important part for me, though, was getting the paste right. If the paste was right, there would be no leaks and all would be right in stomaworld.  You can imagine my horror then, when, on finally remembering the stoma’s existence, I looked and saw through the completely transparent bag they put on you in hospital, that my stoma had no paste around it.  It was early on the second day post-op and I was panic-stricken.  I demanded to see the stoma nurse at once; there was no paste; I was going to leak; life was hard enough on this damned ward; I didn’t need the runny stoma output that came from not eating dribbling all over my belly on top of everything else. 

The stoma nurse came and assured me it was all fine.  She said we’d change the bag the next day and that, given it had lasted two days so far without leaking, she was confident it would be okay.  It had, after all, been refashioned – things might be different now.  But she wanted the bag to last three days at least, so she wasn’t going to change it; she was going to wait ‘til I was up to changing it and she would come with me for reassurance.  I agreed, but then I found I was just worrying about it leaking because nobody had put any paste around it.  So I decided to get up anyway, and do it myself.  My way.  I could put paste around it if I wanted to.  I could change it whatever way I liked; it was my stoma for goodness’ sake.

So I grabbed my ileostomy kit, shuffled painfully to the bathroom, filled the sink with water, leaned against the wall (there was nowhere to lie down, and anyway I really couldn’t have manipulated myself into that position) and set everything up to do the change.  I pulled my bag off and there was … well, not what I expected. It had looked the same through the bag, but this little stoma was one I hadn’t seen before and I felt weird.  Almost betrayed.  I’d got to know the little guy quite well and though I’d stopped short of naming it, I’d felt like we were pals, of sorts.  And now that stoma I’d known and grown to love was gone and in its place was this smaller, pinker thing that lay in a completely different position and whose ‘mouth’ I couldn’t see.  On my old stoma, the ‘mouth’ – the bit where the poo came out – was facing front so when I was changing, I could see if it was about to start working.  Now it faced down, like a tap.  Which would probably make leaks less likely, but I felt a kind of bereavement about the whole thing. I decided to see if this new stoma was truly different.  I wouldn’t put paste around it; I’d just put the new bag on and leave it at that.  I squirted the barrier spray and let it dry, then put the bag on.  No powder, no paste.  Now we’d see if it had worked.  If my refashioned stoma had been worth the effort.  It had only taken about six minutes to do the entire change, so if it had, then I was going to find it quite easy to learn to love the new version. 

What I didn’t love was this ward.  This ward of women who seemed to vary from silent to downright unfriendly.  And worst of them all was the hag directly opposite me.  She was constantly berating the nurses, and she put me in mind of Katharine Tate’s ‘Nan’ character.  She had the foul mouth and ugly demeanour that had been funny in a fictional creation, but was really rather unsettling in a woman in a bed across the way. 

That evening, the quiet lady opposite me, who I’d by now realised spoke no English had a few visitors around her.  Next to her, the hag seemed to me to be sneering at anyone who looked her way.  I tried not to glance at her myself, instead straining to hear the sick young woman next to me talking quietly to her husband; I wondered if she would be well enough to talk to me at some point – she seemed like my best option.  And then the retching started again. Horrible, unattractive, and louder than was polite. I had no visitors that night – husband had a gig, and teen was working on a uni project – so I was all alone, making a revolting noise, and trying not to be sick.  I was holding a kidney dish to my chin, in case I actually threw up and trying to be unobtrusive in my retching, when suddenly I heard, ‘Oh shutup’ (without the ‘t’) from across the way.  The ward fell silent.  I thought maybe I hadn’t really heard it; she hadn’t really done it; surely the hag wasn’t that hideous .  That unsympathetic to someone else who was ill.  And then one of the visitors by the bed opposite me shot her a filthy look that told me I was right.  I actually felt close to tears.  This woman was horrible, hateful and nasty, but what a thing to do.  To screech ‘shutup’ at somebody just out of surgery.

Late that night, when the retching had stopped, and the ward was dark, and I wondered if I’d imagined it all, the woman next to me called out from behind her curtain, ‘Are you okay now, Wendy?’ I said yes, thanks, and apologised for upsetting anybody.  ‘Don’t be silly,’ she continued, ‘We’ve all done it.  It was me a couple of days ago.’  So I had heard correctly.  The hag had indeed told me to shutup when I was involuntarily being disgusting.  And somebody else was sympathetic to how horrible of her that had been.  But better than that, I now had somebody on the ward to talk to.  As well as - and this was new -  somebody to hate.

1 comment:

  1. Thanks for sharing your story.It's so important to tell people about this and that we can go on and live normal lives. I have an ileostomy and had the anus removed. It took a while for the butt wound to heal but alls good now and just happy to be alive.

    Hope you are doing well now.

    Best, Mike from London (UK)