Thursday, 1 March 2012

It Had To Happen

I have often spoken of leaks.  Of worrying about them.  Of fearing them.  I’ve casually skated over maybe having had one here and there, and then quickly changed the subject.  As though speaking of poo would be a post too far.  But I did warn you that it could happen, this talking of poo.  It’s a necessity, given the subject matter; I couldn’t avoid doing a post that is almost entirely about poo forever, and now that day has come.  We’re going to talk leakage.  Leakage from the bag, and we all know what is in the bag.  It’s Poo Day!  I should’ve done it yesterday perhaps, on February 29th, and that way it would only come round once every four years.  Instead, I appear to have chosen March 1st, which from here on out will be known as Poo Day.  And St David’s Day, of course.  I wouldn’t want to oust anybody who already feels they have a right to this date.  In fact, my twitter feed tells me it’s International Peanut Butter Appreciation Day too, but you can take these things too far.

Nobody had told me about leaks.  Really.  You’d think it would be something you’d be given a little warning about; maybe some kind of pep talk, telling you it happens to everybody and you mustn’t worry when it happens to you, because it will, and it’s horrible and upsetting, but really, you just have to be pragmatic about it and remember that it happens to everyone.  Everyone with a bag, that is.  But no; nobody did – not the surgeon, not the stoma nurse, not the nice pretty lady with a bag who came to see me before I had mine.  None of them. 

What you should know is that with Crohn’s Disease there’s a danger of ‘accidents’.  A possibility of literally crapping yourself at inopportune moments.  And that had happened to me.  On more than one occasion.  Most memorably when I was recording a radio play at a studio in the centre of London.  The studio was in the basement; I was there, watching the actors speak my words, thoughtlessly drinking strong coffee, when suddenly I needed the loo.  I needed it urgently.  It was up a flight of stairs and round a corner and as I hurtled up those stairs I felt the worst happening, and by the time I got to the loo I had to flush away my knickers, wash the top of my jeans and dry them with the hand dryer, wash my hands about a hundred times when I’d finished and then spend the rest of the day swallowing enough codeine to stop an elephant ever going to the toilet again, convinced I smelled faintly of poo and that everybody was just too polite to mention it.  And I couldn’t tell anyone – not the actors, not my friend the producer, nobody.  Because poo is in its own category when it comes to other people’s.  If someone pees themselves, we mostly feel concern – are they okay?  What happened?  If a woman’s period starts unbeknownst to her and she’s wearing white, other women at least will be sympathetic, but if someone has poo on them, we all just recoil in disgust.  My teen says that’s because it’s disgusting and that kind of sums it up. In the light of this tale, it won’t surprise you to know that one of the things I was most excited about when I decided to have a bag was that I would never have to deal with a situation like that again.  Never.  Ever.  That was one of the big fat positives that I focused on when I made the decision to have my plumbing rerouted for ever more.  To never use the toilet like a ‘normal’ person ever again.  The fact that I would never have to worry about soiling myself in a public arena was a definite plus.

So you can imagine, my first leak, when it happened, was quite a disappointment.  It kind of crept up on me, or the realisation of its existence did.  I was out shopping with my teen.  We were having a laugh; I’d been trying on clothes, for heaven’s sake!  We were going to stop off for a coffee but the two places we fancied going to were full up; it was snowy and cold and we decided against heading for a third and got into the car and came back home instead.  I sat on his bed, both of us nursing hot drinks, when my hand drifted, as it often does, to my bag area.  Which was wet.  I was confused; had I spilled my hot chocolate?  No.  Then what on earth … oh.  Shit.  Literally.  It was a leak.  My bag had leaked.  How could that be?  I dashed to the loo and saw that the side of the bag was coming away and some of the contents had leaked onto my stomach.  I ripped off my leggings, my waistband, my underwear and changed my bag.  It wasn’t nice, but it was no big deal.  And one of the best things about it compared with my earlier, pre-bag experiences, was that the stuff in the bag doesn’t smell.  I don’t know why, but I’ve had several incidents since then, and it never smells, which is one hell of  a positive.  Nobody had warned me about this leak thing, but it wasn’t the end of the world.  At least I was at home, a change of clothes was to hand and it’s not like it had gone everywhere.  Not that time.

I’m going a bit tangential for a moment now, and I’m going to talk about showering.  There is much debate in the ostomate community about showering – about whether one should shower with a bag or go commando and let the stoma enjoy a bit of running water outside of being cleaned and changed.  I liked the idea but, as I’ve mentioned before, my stoma has no fixed timetable and the idea of it gushing poo down my leg and into the bath that my family uses is just not something I can handle.  So I don’t do it.  I shower with my bag, though not without feeling a little jealousy towards those who can go commando with impunity. 

And so we go back to the stoma, the bag, and the constant element of surprise they bring into my life.  Into all our lives.  But never (apart from the prolapse mentioned in the previous post) more than the night of the evil early hours leakage.  The night that was turning into morning when I woke up to find my bag had completely come away from my skin and all the output (that’s what we call it when we’re being polite – it’s still poo) had done just what my worst fears didn’t want it ever to do.  It was all over me.  My pyjamas were covered in it, my stomach was covered in it, and as I leapt up, squealing in horror, it did what gravity dictates it must and started to go all over me.  I ran into the bathroom, too horrified even to cry, and stood in the middle of the lino floor, dripping onto it, unsure of what to do next.  My husband poked his head around the door and said ‘Shower.  You’re going to have to shower.’  It was 5.30am.  I didn’t shower at 5.30am unless I was about to have surgery or had an early flight to catch for a holiday.  But what else could I do?  This was a huge leak.  And .. .wait a minute.  The bag.  I couldn’t change the bag before I showered; that would be pointless.  And I couldn’t shower with it on because .. well, because it was pretty much off.  And then realisation dawned – it was 5.30 in the morning; my responses weren’t up to speed – I was about to shower commando.  So I did.  I climbed out of my pooey pjs, disposed of the bag and wiped myself as clean as I could with the usual wipes, soaked the pooey pjs until they were pooey no more, ran downstairs and shoved them in the washing machine, then ran back up and climbed into the shower.  With my stoma out.  Standing proud of my stomach, pink and innocent like it could never do anything remotely awful ever.  And it didn’t while I showered.  It behaved and stayed happy and poo-free as I got clean and got dry and put on a new bag and fresh pyjamas.  I have to tell you, it was lovely.  Showering properly naked again was a joy.  I haven’t done it since – I wouldn’t dare risk it - but it’s the good bit I take away from that horrible experience and in some ways I don’t regret it happening. 

I’ve never slept through the night since then.  I always wake up twice to empty my bag – once at about 3, and again at about 6.  That’s what the problem had been; I’d just slept too long and the bag had got too full.  I’d actually been out the night before for the first time on my own.  I’d met up with a bunch of old friends and had a fantastic time; so good that I’d fallen into bed exhausted and had slept far too
soundly, not waking up at all until it was too late.  I’d had a wonderful night and a hellish early morning.  And if I could only remember the date that it had happened, I’d designate that Poo Day.  As it is though, I’ll just have to share it with St David.  And peanut butter.

1 comment:

  1. Leaks piss me off. They can really bring me down. But not for long. It only takes a moment to think of the incontinent moments I had before the bag to realise that they're nowhere near as bad. Also, leaks seem to start off as a bit of a slow, gluey ooze first which gives you warning. I've only had one really bad one, at work that would in any way have been visible.

    But I share your problem with never sleeping through. I put my tiredness down to that at one point. Then I thought it was just my snoring. Then caffeine. Now I'm starting to think that it's just a symptom of my crohn's or maybe of my shortened bowel - I was a little surprised at my recent barium follow through to find that I'm missing a substantial proportion of my ilium. I honestly had no idea.