Just When I Thought I Knew What I Was Dealing With…

 

I’ve got pages of notes that I refer to before I write this blog – paragraphs of ideas and thoughts, doodles and scribbles, all of which remind me of things I want to talk about.  For this week’s subject though, I had written a mere two words and trust me, that was all I needed.

I was about ten weeks into being a woman with a bag – an ileostomate, as we are known by someone somewhere; I don’t really know who, perhaps the medical fraternity – and I was feeling pretty confident.  I was doing pretty well.  I’d been running around a bit, not literally you understand; I don’t believe in running.  Outside of a competitive arena, I really don’t see the point of it; if I want to get somewhere fast, I’ll drive and if I want to get there on time I’ll leave early enough to allow for the tardiness of the transport system.  Actually I won’t do that either; I’ll drive.  And as for other motives people cite for running – exercise and pleasure; that I can’t begin to comprehend.  So, I’d been driving around a bit if you want me to be pedantic; I’d driven to friends’ houses, I’d driven to restaurants and cafes, I’d even driven to Brent Cross which is one of my least favourite places in the whole world, but it’s very handy for shopping and potato latkes at Harry Morgan’s.  The point is I was becoming very much like a normal, well person, albeit one with Crohn’s Disease and a bag of poo perched on her stomach, and I had even got to the point where I didn’t feel I had to tell that fact to everybody I met.  I was still telling friends of course, and even acquaintances, but I’d stopped telling strangers in changing rooms and the guy in the corner shop. 

On this particular night – a Saturday – I was going to be home alone.  Husband was doing a gig, teen was going to a party and I hadn’t invited anyone over.  I was looking forward to hanging out on the bed in front of the tv on my own purely because I wanted to.  I’d spent long enough in that situation because I had to be, and the idea of doing it as a form of relaxation had me feeling mildly excited – I know, it doesn’t take much does it, but I’d stocked up on Bendick’s bitter mints and Ribena, spent the week sky plussing crappy shows only I would want to watch, and was looking forward to this particular Saturday night like no other.  I was on my seventh bitter mint (they’re very rich) and about to start my second Law and Order: Criminal Intent when I thought I’d better empty my bag; it felt oddly full and was a bit uncomfortable, which was strange.  I was no novice by now though; I wasn’t in the least bit perturbed or concerned; I knew weird things happened, and I knew I could handle them.  Ha!  I was SuperOstomy Woman and I could cope with whatever tricks my stoma decided to play; nothing could throw me off now, I’d been at this for over two months.  I was prepared for anything. 

Only I wasn’t prepared for this.  And who would be?  Who would be prepared to go to the loo, used to a stoma that protruded maybe an inch and a half, only to find the bag was full, as expected, but not full of poo; full of stoma.  My cute little nameless stoma had grown.  It was huge.  Long and fat and still nerveless so kind of flaccid and if you’ll allow me to continue with that particular analogy, a bit like a donkey dick hanging from my belly and expanding before my eyes to fill the bag.  I was already sitting on the loo when I made this discovery, which was lucky because it meant I couldn’t fall.  And I would’ve fallen.  I could feel my knees give way even as my whole body seemed to weaken and wobble with fear and confusion.  What the hell was this now?  Nobody had told me my stoma could grow.  It wasn’t supposed to

grow, I knew that; and surely if this was the sort of thing that could happen, then I would’ve been warned, and I hadn’t been, ergo I was quite possibly the first person this had ever happened to. 

I sat for a while, wondering and worrying, and thinking who on earth could I phone after 11pm on a Saturday night to find out what the hell was happening to me.  NHS Direct would be pointless; they’d know nothing about stomas, let alone rare and unheard of complications thereof.  None of the nurses or doctors who would know would be on duty at the hospital at this hour.  I didn’t know anybody with a stoma who I could call this late, which left the one thing I always tell people should never, ever be used as a diagnostic tool – the internet.  I had no choice though, so I typed in ‘growing stoma, ileostomy’ and watched to see what came up.  Possibly because there aren’t that many of us ostomates, and maybe because nobody’s thought to do it yet, there didn’t appear to be any misinformation.  There were two sites that offered me an answer, and in both cases the answer was the same – my stoma was prolapsing.  I had a prolapse.  I’d heard of prolapses of course, but only in the way we all have; only as that slightly comedic thought of organs falling out of people’s arses and vaginas, not as something that actually really happened.  Not as something that happened to stomas.  To my stoma.  The internet told me not to panic; it told me that if I was lucky, I would be able to massage the prolapse back in; all I had to do was lie calmly on the bed and gently rub it.  This thing that felt like an equine penis.  I wished there was someone there with me, to laugh at the ridiculousness of it all and make me see how silly it was; to stop me feeling terrified that I wouldn’t be lucky, and massaging wouldn’t work.  But there wasn’t, so I just had to get on with it.  Fortunately, I was one of the lucky ones and it did work.  I lay down, tried to be calm, though I couldn’t tell you what Goren and Eames were up to, even though I was watching them, and massaged it back to its normal little inch and a half format.  And then I didn’t move.  I lay still, with my usual-sized stoma, until the husband and the teen came home and I told them what had happened and how I’d dealt with it.  And very proud of myself I was, too.  They were extremely impressed; we celebrated, I think there may even have been Bailey’s involved, though I didn’t move much to drink it.

On the Monday I thought I’d better call my stoma nurse and tell her what had happened; I was almost arrogant as I announced my achievement to her, but she wasn’t that impressed.  ‘Oh dear,’ she said, ‘you’ll have that forever now.  You need to come in and be fitted with special underwear.’ Of course, I’m aware that’s no huge deal.  It’s just big pants – I’m in my forties, big pants hold no fear for me, but somehow, for some reason, this felt like the worst thing I’d ever heard.  I’d coped with having the ileostomy surgery without falling into any kind of depression or grief as many people do; I’d handled my scar opening up and forming a mini stoma that necessitated a bag of its own (I hadn’t liked it, but I hadn’t fallen apart), and I had dealt with all the little mishaps with what I felt to be considerable aplomb, but this – special underwear – this floored me.  ‘Do I have to?’ I squeaked, ‘Can’t I just keep massaging it back in?’  And when she said no, I hung up and sobbed and sobbed.  Like a weak-willed, stupid, spoiled lunatic who’d just been told something terrible was going to happen, I cried.  And the next day I got fitted for the underwear.  Which was fine, of course – like wearing Spanx, in fact.  No better, no worse, except that Spanx have that weird gusset thing and my knickers didn’t.  What they did have was enough tensile strength to hold my prolapse in and stop it coming out again.  And the more I wore them, the less my stoma prolapsed when I wasn’t wearing them. 

Eventually, to be honest, I found I didn’t like them – they held things just that bit too tight and squashed the bag in a way that caused it to start to leak, so I did a bit of research and found a thing called a waistband.  It’s exactly what it sounds like – a thick lycraish waistband that goes around my waist and holds the bag, and the stoma, in place without squashing anything too much.  It works better than the knickers did because it doesn’t cause leaks; it also holds my waist in a bit and gives me a better silhouette under dresses and we all know how important that is. 

And those two words I wrote to remind me of this particular adventure?  ‘Prolapse.  Shudder.’  It’s not like it’s one I was going to forget.