Thursday, 2 February 2012

The Importance of Being Nursed

One of the most amazing things about having an ileostomy - or indeed an ostomy of any kind – is the stoma nurse.  You think ordinary nurses can be pretty fantastic, and they can, but a stoma nurse is something else.  She – and in my experience it is almost always a she – is truly an angel who walks among us.  Nursing, it seems to me, can be a thankless, dirty job, but at least there’s a bit of variety; there’s injections to give, dressings to change, blood pressure to measure.  Some of them do specialist things like ear syringing or putting on plaster casts.  But the stoma nurse just deals with stomas.  Her whole day is pretty much about poo.  There’s the urostomy, of course, which is about wee, but it seems to me the colostomy and ileostomy form the bulk of their day.  They get a change of scenery, I suppose, with home visits and stuff, but there’s no getting away from the amount and variation of poo they deal with, day in, day out.  At least with your own stoma, it’s your own poo. 

I first met my stoma nurse when she gave me the ileostomy literature and told me what to expect.  I met her a second time when we agreed on where the stoma would go and she drew the cross on my stomach so the surgeon would know what we’d decided.  The third time I saw her was the day after my operation; I had my stoma and as I lay prone on my hospital bed she changed the bag for me while I watched carefully to see how it was done.  And the next day it was my turn. 

I didn’t have to do it all – she cut the hole in the flange (yes, that’s what a flange is; it’s the bit under the bag that sticks to your skin.  You’d always wondered hadn’t you?  Funny word, no idea what it means.  I believe there’s a flange that’s to do with plumbing as well, but that doesn’t concern us here) to the right size for my stoma.  She prepared the plastic bag to dispose of the used bag in; she put the wipes in the sink full of warm water, to wipe clean the stoma before the bag went on, and she tucked paper towels into my knickers so that nothing spilled.  You can’t really bank on your stoma behaving itself just because you decide to change your bag.  You can’t know that it won’t decide to dribble, or even gush, at the most inconvenient time.  If you were a stoma, you’d be tempted, wouldn’t you?  It’s kind of irresistible. Experience would teach me a few tricks to manage such things, but this was my first go.  Luckily, my stoma went easy on me, but it was still quite a task; it’s a lot more work than wiping your bum and pulling your knickers back up, it has to be said.  It takes upward of ten minutes and my first time took me close to twenty, but with the help of the stoma nurse, I did it.  And I felt pretty confident that I’d be able to do it again, which was just as well.

Changing the bag is the biggest deal really; wandering around wearing it is something you just do, emptying it is a piece of cake, but changing it can really ruin your day if it doesn’t go well.  There have been times that I’ve spent an hour getting it right – when I’ve had to clean the bathroom floor before I’ve finished. You can’t feel when your stoma is working, so there’s no clue that it’s about to go like there is when you go to the loo ‘normally’.  There’s no build up in the gut that you are aware of, no sudden knowledge that you’re about to evacuate; it just happens.  You don’t know that it’s about to happen, and unless you are in the middle of changing your bag and therefore looking at your stoma, you don’t know that it is happening.  It’s kind of weird.  At first I found myself touching the bag a lot – through my clothes, obviously, otherwise people would notice and it would look weird in the supermarket.  Almost unconsciously, I’d be holding it, kind of comforting it like I did my bump when I was pregnant with my son.  I do that less now, but I still do it; except now I think it kind of comforts me.   I hadn’t thought about that.  I hadn’t thought about how aware or not I’d be of its existence.  After three and a half years in bed, I hadn’t thought about how much it’d change my life in so many ways. 

Another thing I’d not considered was my wardrobe.  When my mother handed me a generous cheque as I lay in hospital and told me it was to buy the new clothes she thought I’d be needing, I realised I hadn’t thought about that at all.  My tight-fitting, funky clothes that I was probably too old to still be wearing were going to have to go.  Unlike with a baby bump, it’s really not acceptable to wear clothes that accentuate your ileostomy bag.  Whilst the world is happy to think, ‘oh look – a baby’, it is not so at ease with the concept of ‘oh look – a bag of poo’.  Not a situation I feel inclined to campaign for change on.  I’m all for demystifying the bag, that’s the whole point of writing this blog, but there are limits.  So I did buy new clothes, and thanks to my mother, I managed to buy enough of them.  At the same time, my youngest sister found herself with a whole new wardrobe of her own, a wardrobe which, on her, is quite age appropriate. 

The stoma nurse is brilliant for discussing all these things with.  She doesn’t just desert you once you leave the hospital; she’s always available at the end of the phone, and although I see her less and less frequently now, it’s a hell of a comfort to know she’s there.  Skin around the stoma can get sore and bloody, and my GP wouldn’t have a clue what to do about that; ulcers can appear which my GP would normally be able to fix, but not when they’re under the flange; bags can leak, which is demoralising and upsetting and my stoma nurse is always ready with a story about somebody who’s having a much worse time, which always makes me feel better - possibly because I’m not a terribly nice person.  There are products for all these situations and the stoma nurse is the person who can advise you on what ones to try.  And then, when you leave her treatment room, she goes and looks after the next person who is learning to deal with life pooing into a bag.

Once I was on top of all the basics, was home from the hospital, and had a new wardrobe of flared dresses, baggy tops and leggings, I’d find my mind going elsewhere. Having exhausted all the obvious thoughts about having a bag, it was wandering to pastures new.  What if I was attacked, I wondered?  Stabbed?  If the knife hit the bag and there was poo all over the place, how on earth would I explain that to my attacker?  ‘Sorry – ileostomy; you really should have gone for somebody else.’ And imagine being in a bank when a robbery took place; could I use my bag as a weapon?  ‘Get out or I’ll squirt shit all over you.’  I’d be a hero wouldn’t I?  That’d show us bag folk in a good light.  Superostomy Woman!  Keeping our towns and cities safe.   Maybe I should get a costume; not the usual skintight ensemble though; something in more of a smocky style.  Perhaps a swing dress and some cool boots.  I wonder what my stoma nurse would advise ….


  1. That made me laugh as it is so true. Great blog

  2. I've stumbled across this blog from elsewhere - I just wanted to say you are both brilliant, and hilarious!

    Pip xxx

  3. I've been very lucky with my bag. No major problems except for when I started putting weight on and found that the bag would pull away a lot more. Think I was storing them somewhere too warm and dry, though.

    If it's any use to you or your readers, my routine for changing goes as follows:

    1) Sit on the toilet with no top on and your trousers and pants round your ankles - as if you were having a poo and got a bit of a sweat on.
    2) Get all your stuff ready:
    - Make sure you've cut the hole in the new bag to the right size and place it within reach (a bath, sink or shelf are goo)
    - Put the waste bag out and open around your feet
    - Get your dry wipes ready and put them somewhere handy
    3) Roll out two strips of toilet roll about the length of your leg.
    4) Fold the top bit of the toilet roll strips over and place under your bag but over the flange (at the bottom).
    5) Remove your bag (you might need adhesive remover) and put it in the waste bag.
    6) Do your initial wipe around the stoma and area that the flange was stuck to with more toilet paper.
    7) Finish wiping with dry wipes, dipping them in water if necessary - I find that it's best only to use water if really necessary and to clean "dry" if possible.
    7) Get your new bag and stretch the hole a bit.
    8) Grasp it from the other side (the side without the hole) ready to place over stoma with your fingers pointed in the direction of the stoma.
    8) Place it over the stoma, making sure it's stuck on the skin from the stoma outward. Stand up as you're doing it.
    9) Ta-dah - you're done.

    Takes me about ten minutes :)