Thursday, 19 April 2012

What The Stoma Gave Me

There’s a wonderful Frida Kahlo painting called What The Water Gave Me – it’s a painting from her point of view, of her feet at the end of a bath, along with images of important people and things in her life. Florence Welch (together, I can only assume, with her machine) has written a song of the same title, though she says it was also influenced by Virginia Woolf, so who knows what she’s thinking?  Good song though. Anyway, the picture makes me think of being in the bath myself; what I see is my bag, floating just beneath the surface of the water as I bask, and when I was bathing recently, I found myself musing on what my bag has given me.  And also, what it has taken away.

You know that thing when you fancy a famous person? For me, it’s George Clooney – clichéd, perhaps, but I did first spot him when he was Booker in Roseanne, so I like to imagine that my having had a thing for him since back then gives me some kind of superior claim to everyone else’s. The point is, what we tell ourselves; we know it’s unrealistic, of course it is, but that’s kind of what gives it its thrill.  It’s unlikely that I’ll ever meet George so I can imagine all kinds of things, the biggest of these being that if he knew me, if we just spent an evening together, talking and laughing and sharing food, well then he’d realise how perfectly matched we actually are.  I can tell myself this because it’ll never happen and it’s therefore a perfectly safe fantasy (this doesn’t work with actors in British soaps, nor with members of the boy band Blue).  I can watch George in movies and heroically getting arrested for trying to draw attention to atrocities in the Sudan, and I can feel like we share something – or we would, if our destinies were different. At least, I used to be able to do that.  Before I had a bag.  Only now I realise how off-putting it would be for him to have to overcome the bag of poo that cannot be hidden when undressed, and I know our love can never be. Perhaps I do George a disservice – he was once an ER doctor, after all – but it’s my fantasy, and it doesn’t work any more.  The bag has stolen my impossible dream.

It’s stolen lesser things too, more obvious things that I’ve mentioned before – the tight dresses; the lithe silhouette; the knowledge that I am unlikely to have poo running down my stomach - but age steals those things in time anyway. It’s the fantasies that I really miss.

And then there’s what my stoma gave me.  Skating over the obvious things once more, there’s the lessening of pain; the ability to go out without needing to be within fifteen feet of a toilet; the vast amount of foods I can eat that I couldn’t before; the whole days of boundless energy; the free prescriptions.  I knew those things would happen, and they’ve changed my life beyond anything I’d dreamed, but there are other, unexpected things for which I’m almost more grateful.  At the beginning, in those first, tentative days, there was the huge relief that first my husband and my teen, and then my close friends weren’t actually repulsed by me.  That they didn’t mind sitting next to me, knowing what was going on just beneath my roomy top.  After that, there was the gradual realisation that nobody knew about my bag unless I told them, and the gentle easing back in to a world of semi-normality that I’d thought was gone for me long ago.  I got used to all that in time – not so much that it still doesn’t catch me unawares on occasion, but enough that I could get on with my life without thinking about my bag every 30 seconds.  After that, there were the surprises.

If I can go back to the Barcelona trip now, I can tell you one of the biggest of those surprises. 

A stoma is a private thing.  Nobody sees it except you and various medical staff. My husband has glimpsed it, but not studied it for any length of time, and I wouldn’t want him to.  My teen has never seen it – we’re close, some might say weirdly so, but there are boundaries, and that’s one of them. In short, nobody sees the stoma, and I assumed nobody ever would.  Which is why I was pretty astonished when just before dinner one night, the American announced that she’d like to watch me change my bag the next time I did it. I said no, obviously; that would be weird and wrong and all kinds of strange, but … ‘oh for goodness’ sake, I used to work in a hospice with complete strangers, I think I can handle my close friend’s stoma’ turns out to be a pretty good argument.  Difficult to contest.  When followed by a simple ‘I want to,’ it’s kind of impossible to turn down.  So I said ‘yes, okay, but if it starts to gush, I need you to leave’, and we had a deal.

She came into the bathroom with me, watched as I prepped everything, explaining as I went what was what, and then it came to the moment when I had to take off the old bag; when she would see my actual stoma.  It can be a bit mucky, sometimes there’s poo around the base of it, sometimes there’s poo in the wrinkly bits. It changes shape, seemingly at will, and that can be pretty mesmerising I think, but I had no idea how the American was going to respond to any of it. She bent toward it for a closer look, and remarked that it wasn’t nearly as gruesome as she’d expected, then watched as I cleaned it, handed me the new bag when I was ready, and we were done.  There had been no inappropriate gushing.  The whole thing was at once anti-climactic and emotional, and then we went for dinner.

When we told the Australian, she said she’d been thinking she wanted to see how it all worked, too, and asked if she could come and watch the next time. I started to protest again; was she sure? ‘I wiped my dying mother’s arse, and I feed my niece through a tube in her stomach’, she pointed out, which was just as good an argument as any the American had made, so once again I was left with no option.  Besides, I liked the idea of them both having seen it; if I was going to share this incredibly intimate experience with anyone, these were the people I would choose.  I did make the same deal again though – any gushing and she was to leave the bathroom at once.

A couple of days later, and the Australian was watching my bag change, just as the American had before her.  On seeing the stoma her response was almost one of disappointment; ‘Is that it?’ People clearly expect something so much more revolting than the actuality, no matter how clearly we ostomates might feel we’ve explained things.  I suppose I did, too.  I suppose that’s how stomas – ileostomy or colostomy – are perceived, and that’s what we could really do with changing.  But I don’t want to get all soapboxy here; this is about friendship and intimacy and how my stoma pushed that further than I’d ever imagined anything would. I thought the three of us were as close as could be, and thanks to my stoma, we now have something that makes us even closer.

Regular readers of this blog will know I was concerned about my salt intake in Barcelona; at home I drink salty lassis on a daily basis and as suspected they were nowhere to be found on our trip. Instead, we stocked up on salty biscuits and I spent the first few afternoons forcing several of them down my dry and dusty gullet with little to no pleasure.  Finally, it occurred to me at breakfast to try adding salt to a  plain yoghurt – the kind that’s available in every hotel breakfast buffet in Europe.  I did that, it tasted a lot better than dry salty biscuits and that problem was solved, which was good, as I’ve been rushed into hospitals in Spain in the past and it’s not the most fun I’ve ever had on holiday. Not to mention the fact that we only had five days and spending any of them trying to explain salt deprivation and an ileostomy to a variety of medics who didn’t speak English wasn’t on our itinerary of choice.

As a trip of firsts, there was also the swimming that I’d been looking forward to.  The pool on the roof was as amazing as expected, but it was in the middle of a very trendy bar full of rich-looking natives dressed in labels we could only ever afford at a knock-off stall in a Turkish soukh.  The idea of undressing down to swimwear as the stylish and beautiful sipped on margaritas around us would be daunting under any circumstances.  When you don’t really believe your bag of poo will remain intact in water, and you know your swimming costume makes you look like a lumpy, overweight oompa loompa to anyone who doesn’t know the bump is a bag, it’s a definite no-no.  None of us felt comfortable with the idea, so I didn’t get that first swim while we were in Barcelona.  I still haven’t had it actually, but I will.  The bag hasn’t stolen that from me; it’s just borrowed it for a while.

My perfect relationship with George Clooney, though, can never be.  When you go through life-saving, life-changing surgery as extreme as this, there are some things you just have to accept.


  1. Great post, as always. We can so double date. And I'm hopeful you'll have your first swim with me. xx

  2. For what it's worth, I believe these things we find hard to live with, in the presence of others end up defining to us how strong their love is - because the problems that seem so big to us, genuinely mean absolutely nothing to them, pitted against the relationship.

    I'll never forget a man telling me he loved me in a note that referred to an incident where a friend had repelled him with details of how she'd had really bad vomiting and diarrhoea. He'd really gone on about it at the time, but now he said - "if that was you, I'd be standing alongside you with a bucket - and if it was from both ends - I'd just fetch a second one." I've still got the note - I like to think the George Clooneys of the world would be as big about it.

    Also seen it from the other side - won't go into details, but remember waking up with someone and having to reassure them - "Seriously mate, it's ok, continence is a sliding scale at the best of times." Couldn't convey to him how little I cared about it.

    Thanks for your blog, you're an inspiration to all of us who try to live around life's imperfections!

  3. 1950's style costume,ruched midriff, possibly charming frill around hips, waterproof pouch or shelf tucked inside in which bag confidently sits? Eye popping decollatage to lead all eyes to your upstairs rather than your downbelows? email swimwear designers who are missing a trick here or get it made up yourself. another great read btw.

  4. If I had a stoma (btw I always thought that was the name for the bag but from your story I'm inferring it's actually the name for the hole itself?), assuming it can be sealed off decently, I wouldn't think twice about getting into a pool with other people. Everybody who swims in a pool has their asshole in direct contact with the water. How is that any less disgusting than a stoma in the water? Plus we all know kids pee in pools (and probably some adults too).

    Just go for a swim already!

  5. There are special stoppers for stomas and you can go swimming so once you have controlled when more or less you r going to have a poo you can wear them several hours be it in the pool or not.

  6. George Clooney has a colostomy bag.

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