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.

Party Bag

 

I’ve gone slightly off-piste with the last couple of blogs – talked about nurses and their importance, and I’m glad I did, but I should go back to the chronological adventures of having a bag, and if I remember correctly, and I do because I just read back and checked, I’d just got to the point where I was getting over the surgery.  And now it was time to go home and start my new life.

My son was about to turn 18.  And when I say about to, I mean seriously about to – like, less than a week after I got home, and I felt ill-equipped to celebrate.  Clearly we weren’t going to be able to go out anywhere; I’d just had major surgery and anyway, leaving the house with my bag was a huge, scary thing that I was absolutely not ready for yet.  He asked if he could have a party.  Actually, I lie, he pretty much told us he was going to have a party, and though we could have forbidden it, it didn’t really seem fair.  He’d been through a lot; his mother had a bag that she’d promised she was never going to have, and he’d been coping with 6^th form, preparing for A levels and dealing with fears about his mum for such a long time, how could we not let him have a party to celebrate getting to 18 relatively unscathed?  Of course we said yes.  He could have 20 people.  And although I wasn’t much looking forward to being stuck in my bedroom waiting for my husband to come home from his gig while my teen and 20 of his teenage friends partied downstairs, I felt it was fair enough and I would just have to shutup and cope.  I felt a bit panicky about bumping into one of the teens in the loo.  I didn’t want anyone walking in on me as I was emptying the bag; I’d have to remember to lock the door, and then there were all the accoutrements, I didn’t want to leave those lying around for teens to wonder at.  He’d only told his closest friends about what was going on, and I didn’t want to open him up to questions he wasn’t ready to answer.  But I’d cover all that.  Now that I’d thought of those things, I’d head them all off.  It wasn’t going to be my idea of fun, but my son would be having a good and celebratory time, and that was what was important. 

Within 24 hours, 20 people had more than doubled, and when I expressed a bit of concern over logistics, what with me and the bag and all that, he looked at me aghast. 

‘You can’t be here.’ He said.  ‘I’m 18.  It’s my party.  I can’t have my parents here.’  He said it with such assurance that I didn’t even question him.  Of course I couldn’t be there.  I had to go somewhere else.  I’d have been out of hospital for 8 days on the day of the party, and I had to leave not just my bedroom but my actual house so that a teenage party could occur.  I wasn’t worried about the party – these teens are an unusually lovely bunch and were guaranteed to only throw up into some kind of receptacle, smoke nothing more than weed (we’d have to hide ours), and I was pretty sure a few of them would stay behind and help clear up – no, I was worried about me. I’d foreseen several weeks of lounging in my bed, getting used to my new plumbing, venturing out for the odd lunch after a month or so had gone by … but now I had to go out on a Saturday night in less than a week.  I was scared.  And I couldn’t lay that on my son, so I moaned to my husband and my friends and the guy who rung up to offer me a great deal on a new phone contract.  I have a very good friend who lives around the corner – our children are close, and her daughter was coming to the party.  She’s a very forthright person; you don’t mess with her, and when I finally got around to complaining to her (she has a proper job and isn’t always available for moaning at at irregular hours, like some of my other friends) she told me that I would go to their house.  Her daughter would come to my house to party and I would go and hang out on her sofa with her and her husband and my husband would join us when he got back from work.  I still felt a bit scared; I love my friend and her husband, but I didn’t want to leave the house without a husband of my own, so my one cancelled his gig and together we left the house on Saturday night as what seemed like hordes of teenagers dressed in the party’s theme of ‘the 90s’ (does that make you feel as old as it made us feel?  Nostalgia about the 90s, for goodness’ sake) streamed up our street.  There were Spice Girls and characters from the first Toy Story film; there was Princess Diana arm in arm with Uma Thurman from Pulp Fiction.  As we got into the car – yes, to go around the corner; I was just out of hospital, you know – we nearly ran into the Powerpuff Girls.  I took one last look at the house and off we went.

It was lovely at our friends’ place.  I lay on the sofa, we watched movies and ate dips and pitta bread like we were at a very small, low-key party of our own.  I even had my first joint since surgery, which interacted quite amusingly with the pethidine but I won’t go into that now.  And all the while I was aware of my bag slowly, quietly filling up.  At about 11.30, I could feel it expanding, and I placed my hand over it, acutely aware of it getting fuller and bigger and I hadn’t been at this long, what if it burst?  What if I got poo all over our dear friends’ sofa?  Their 20 year old son was with us too, and though he was aware of what I’d just had done, he was 20 and he didn’t need to know any details; he certainly didn’t need to see an adult he’d known most of his life with the contents of an ileostomy bag gushing all over her skirt, and onto the sofa he was used to lying on as he watched telly. And besides, I like him; I didn’t want to put him through that.  I didn’t want to put me through that.  And yet I said nothing.  I moved about a bit, thinking of the best position to be in when the inevitable bag bursting happened, and finally blurted out to my husband that we needed to go home as my bag was really full.

My friend looked at me like I was insane.  ‘I thought the whole point of this was that you could empty the bag.’ She said.  I nodded, yes, that’s right.  But I needed to empty it now, so I should go home and do that.  ‘Why can’t you empty it in my toilet?’ she demanded to know.  And she made a fair point.  An obvious point.  A point that in my distracted madness, I hadn’t even entertained.  Of course, I should empty my bag in her toilet.  I could empty my bag in any toilet; it didn’t have to be the one next to my bedroom at home, otherwise my life was going to be as compromised with a bag as it had been without one.  Except that the pain was gone; that was good, but not great if I was still at home all the time.  My blinkered stupidity is somewhat excusable if you remember that I’d been home in bed for three and a half years; that I’d only had my bag for less than a fortnight; that the concept of going out was still slightly anathema to me, and though I’d got my head around that enough to finally leave my bedroom, go through the actual outside and hang out at a friends’ house nearby, the whole toilet thing was something else.  But she was right, my dear friend.  I could empty my bag in her loo.  So I did.  I went upstairs to her toilet and emptied it and of course everything was fine and I no longer needed to lie on the sofa wondering how bad it would be when my bag emptied itself all over it.

Back downstairs, with an empty bag, I felt a huge sense of accomplishment, and happily went on to laugh and hang out with my friends like everything was normal.  Which I suppose it kind of was.  And when we finally went home in the early hours of Sunday morning, the party was just breaking up, a few kids had stayed behind to help with the tidying, as anticipated, and only one girl had been sick.  Luckily, she’d had no problems doing it in our loo.

And On The Subject of Nurses

 

I feel bad. I talked about nurses last week; not in general, specifically the heroic stoma nurses.  And they are heroic.  I do feel my life would be poorer without access to them.  But I have done that terrible thing of overlooking another specialist nurse.  One who is also important, and offers a more longterm kind of support.  A nurse who’s been there for me since long before the bag, and who will doubtless still be there long after I’ve exhausted my need for the stoma nurse.  As long as Lansley’s NHS doesn’t cut her, that is.  I am talking about the IBD – that’s Inflammatory Bowel Disease - nurse.  The nurse who backs up both my gastroenterologist and my surgeon.  And not just mine.  She works alone – the days when the NHS could afford to pay for anyone to help her are long gone.  I expect there’s someone with no medical knowledge in charge of coffee procurement for some middle manager somewhere who has the money that could be better spent on an IBD nurse of a lower grade, but if I go into that too much I’ll explode, and it’s not exactly talking about the bag is it?  Though that has its own version of exploding, which I’ll go into another time if you’re not too squeamish.  So, my IBD nurse works alone, and she works with every doctor and every surgeon, at every level, remotely connected with the bowels.  She’s the only IBD nurse in the whole of this large London Teaching Hospital.  She has hundreds of patients who turn to her, and if she treats them all as well as she treats me – and I’ve no reason to suspect she doesn’t – she deserves at lot more than a salary and the odd thank you.  She deserves a medal, a full-time servant and a golden carriage. 

Doctors and surgeons aren’t easy to get hold of; when you need to ask them something, you feel like you shouldn’t somehow.  But I do have my IBD nurse’s bleep number and email address, so when I do need to ask something, like ‘can I see the consultant please, I really need him to look at my aching wound’, I just email her and she sets it up.  When I had to have a liver biopsy (more horrible than major surgery as it turns out – if you’re ever offered one, decline), and found myself on the ward where I had a bed, but no appointment for the liver biopsy, it was my IBD nurse who sorted it out and got me seen, biopsied and home within 24 hours.  When I decided to have the ileostomy it was my IBD nurse who liaised between my gastroenterologist and consultant; who talked to me about how it would feel, and if I was sure I wanted it; who arranged all the tests that were needed to find out why I was in the pain I was in and to see if the ileostomy would help.  In short, she’s invaluable.  But I do tend to forget about her until I need her.

Four weeks after my surgery, I was having terrible pain at the bottom of my scar.  This was the scar that I’ve mentioned before – the one that runs from just below my chest to my pubis; the one they go in to pull out the colon.  It had healed quickly and well, but for three or four days it had been getting hard and was burning hot and I had no idea what was going on.  It was hard to sleep, despite the pethidine I was taking; that’s how much it was hurting.  One night, I finally dropped off at about 3.30, only to wake at 5, feeling strange and bleary.  I was already fairly adept at the very early morning emptying of the bag and naturally assumed that was why I was awake.  I stumbled into the bathroom, went to sit on the loo and was alarmed to find blood dripping down my thighs.  A closer look revealed the source was much higher up, my knickers were also soaked, as were my pyjama bottoms.  It was the middle of the night/early in the morning, I wasn’t really awake and my first thought was that I was having some kind of bizarre period, and then I lifted my pyjama top.  That bit of my scar that had been hot and hard and hurting was now open.  Wide open.  Freakily open.  And as the blood ran out, it was followed by something gruesome and pus-like.  Pus.  I wasn’t really in pain any more though, so I was quite confused, despite having worked out what had happened.  I cleaned myself up, dressed the open bit of the wound – I still had lots of dressings left from the op – and went back to the bedroom to wake my husband.  No point being alone in this trauma.  If it hadn’t seemed really unfair I’d have woken the teen as well, but he doesn’t wake easily and he did have school in the morning.  So I sat with the husband, worrying and not sleeping, until 7am when I called the hospital and spoke to my IBD nurse.  Within an hour, she’d called me back, arranged for me to meet my surgeon in A&E and reassured me that nothing too terrible was going on; things like this happen, and it would all be sorted.

Years earlier, I’d had an open hole on the surface of my stomach – a fistula - for two and a half years.  I’d known it needed surgical intervention but for various reasons I’d been too scared to let them do it.  One day a piece of chicken fell out of it onto my dressing and I realised I had no choice, so I’d had it operated on and fixed.  I’d been young and carefree back then and had somehow muddled through my life despite it, but now, at fortysomething, I was petrified of having to deal with something like that again.  When the surgeon told me gently that this new hole was a fistula too, he saw the sheer panic on my face and instantly assured me that this fistula was nothing like that fistula.  He drew me diagrams to illustrate the difference and explained that this was a mucus fistula, which would eventually form a stoma of its own through which the mucus that my rectum wasn’t using would excrete.  I’d have a second bag to wear over that for as long as it lasted.  He was right, of course, and though this second stoma was a horrible, hateful, smelly thing that I hadn’t signed up for, that needed changing twice as often as my ileostomy bag, and that blighted my life for as long as it existed, I did at least feel supported while I had it.  And then, after about eight months, it spontaneously healed and I was overjoyed.  But how much more horrible it would have been had I not had my IBD nurse to contact every time something about it scared me, which for the first month or so happened a lot. 

This week’s blog has turned into a bit of a pro-NHS kind of a thing, and I make no apologies for that.  Our NHS is our most valuable asset; it’s something of which we should, as a nation, be proud, and something we must protect and cherish.  Right now, it’s in more danger than it’s ever been of becoming privatised and unrecognisable to those of us who have been lucky enough to have it for our entire lives.  There’s a petition you can sign to try to stop that happening here:
http://epetitions.direct.gov.uk/petitions/22670
Nobody’s denying that the NHS needs reforms, but not the ones that are currently being proposed.  This bill needs to be dropped and a new one drafted that protects the true ethos of the NHS and, by extension, all of us.

And while we’re at it, we could take on a couple more IBD nurses here and there, because the one I rely on really deserves s a holiday.  

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 ….

Hello Stoma

 

The day of the operation arrived and we had to be at the hospital for 7.30am.  The teen decided he’d see me when I came round later; 7.30 is very early for most of us, but especially for teenagers.  I took two valium the night before and didn’t sleep a wink.  At about 4am I decided I should write a letter to my son in case I died during surgery.  If I didn’t write it, I would surely expire on the operating table, leaving nothing behind for my child to cling to as he grew older, no message of how I would always be watching over him and if he fucked up I’d haunt him for the rest of his days.  So the letter was insurance – if I wrote it, he’d never get to read it.  I felt a bit stupid, scribbling and trying not to get tearful at the thought that I wouldn’t get to see what he did with his life; who he became; how many kids he’d have, whether he’d impregnate somebody I approved of.  It was all ridiculous, of course; I knew I wasn’t going to die - the surgeon had told me there was a 1% mortality rate and had pointed out that they usually do these surgeries on fairly old people.  He’d as good as told me I would definitely survive but at 4.15 in the morning, as I scratchily told my son how much I loved him and asked him to make sure his dad didn’t hook up with anyone horrible, I really didn’t feel sure.

It was still dark at 6 when I finally gave up on the whole sleep thing and got in the shower.  My last shower as a sealed unit.  It should have been memorable, there should have been a sense of occasion, but in the end it was just another shower, taken with an X drawn in permanent marker on my stomach, a couple of inches to the left of my tummy button, and down a bit.  They usually go on the right, apparently, but my bumper selection of scars meant there wasn’t anywhere on that side a bag could go.

The husband had no choice about coming to the hospital so early as he was driving me there.  We didn’t have much to say to each other that hadn’t already been said, so we left the talking to Chris Evans, who was interviewing Richard Madely in a field as we drove through a virtually traffic-free north London.  Strange, the things you remember.

The surgeon greeted me warmly, asked if I’d changed my mind, and then introduced me to the anaesthetist.  I remember being in a small room with a couple of young men making me repeat the word ‘professorial’ to see if I was being affected by whatever it was they were dripping into my hand.  I do remember that it took a lot more of whatever drug it was than they thought it would.  I’m only 5 feet tall – some might argue I’m a shade under that – but when it comes to pharmaceutical drugs I’m hardcore.  That’s what happens when you take a hundred mgs of pethidine three times a day for three and a half years.  Somebody said something about an epidural, somebody else took my knickers and the next thing I knew I was in recovery, throwing up into my oxygen mask.  And I couldn’t feel my legs. 

Some time later, I was on the High Dependency Unit and my husband, my teen, and both my sisters were looking concerned – I’d been left in recovery for hours it turned out, due to a lack of available porters.  My clothes were missing and I could feel a serious and agonising pain at the top of the scar that bisected my stomach from chest to pubis.  And I still couldn’t feel my legs.  ‘We’ll get you standing tomorrow,’ a pretty nurse told me.  ‘You won’t,’ I said back, ‘because I can’t feel my legs.’  Turned out the epidural was working just a bit lower than it should – my legs were numb and the top of my stomach wasn’t.  The surgeon sent somebody to take out the epidural and hook me up to patient controlled morphine – there are definitely some positives to having major surgery, and patient controlled morphine is one of them.  No pain.  Seriously – you press the button just enough and you have no pain.  Everyone should try morphine at least once; there’s nothing like it for taking the edge off.

The next morning they did indeed get me up and I walked a few steps, which felt like quite an achievement.  And then a lovely nurse washed me and was clearly trying to hide my new stoma.  ‘Don’t look at it yet,’ she told me.  ‘There’s plenty of time and it’ll probably just upset you this soon.’  I can see why they say that; there must be plenty of people who are freaked out by having a stoma; I know lots of people end up having ileostomy surgery as an emergency and are completely unprepared for it, but I’m not one of those people.  I wanted to see this thing that was about to change my life, and I wanted to see it immediately.  I assured her I would be okay with it – I knew what it was going to look like, I’d read the literature – so she reluctantly pulled the bag they’d put on in surgery away and watched me carefully, ready to console me in my horror and sadness.  I suppose it was a big moment; meeting my stoma for the first time, and when I saw it I couldn’t help but laugh.  It still had stitches around the base, but it wasn’t the big, ugly thing I’d expected.  It didn’t look as horrible as the ones in the booklet had; I actually thought it looked quite sweet, sticking up out of my tummy, waiting to start working, for me to give it something to work on.  Maybe it was because it was mine, the way an ugly baby belongs to its mother.  Certainly, I’d have no desire to look at anybody else’s, though I don’t think I’d be repulsed either.  But my one was quite a presentable little thing, so far unsullied by poo.  And it didn’t seem to mind me laughing at it. 

Later that day another nurse asked me if I had a name for it yet.  A name for my stoma.  A lot of people do name their stomas – some witty names like Winnie or Vesuvius, or just a friendly name like Stan or Albert.  I didn’t have a name for mine, and I still don’t; it just feels wrong to me.  I didn’t mind naming my child when he was born, but that seemed like a necessity; this didn’t.  Nearly a year and a half on, I still don’t feel any inclination to name it.  If I’m honest, I do think of it as a male thing, but that’s as far as I’m prepared to go.  One one occasion I referred to it as a ‘little monster’, but that’s not really a name is it?  It’s a Lady Gaga fan.  And I’ve never noticed it respond to her music in any way. 

Before the operation, I’d been in terrible, horrible pain for a year.  The kind of pain that made me want to rip my own head off, which would be silly because it would just cause more pain, but at least it would be a distraction from the original pain that really was unbearable.  Hence the high doses of pethidine, which helped just enough to stop me tearing off any other body parts.  After the operation, despite feeling the after-effects of being cut open and having what was left of my intestines tugged and pulled in all directions, that pain was gone.  I could feel it immediately.  And in return I now had an ileostomy, which as well as putting an end to that pain also meant I never had to sit on a toilet with agonising, searingly sore diarrhoea ever again.  I know I’ve said it before, but going to the toilet more than twenty times a day took up a serious amount of work and pleasure time; I was more than glad it was over.  All in all I’d had a pretty good couple of days.

Avoiding The Bag

 

I’m going to enlarge on my feelings about the bag – I'll do after another time; this is mostly before.  Because when I say I spent 20 years avoiding having a bag, I’m really not kidding.  You’d be amazed at what the mind can come up with when you think pooing from the hole in your bottom is the only acceptable option.

There are varying degrees of Crohn’s; it’s actually quite an umbrella term it seems to me.  Some people with Crohn’s have one attack and never hear from the disease again.  Some have occasional diarrhoea and cramping pains, but not that often, and not that bad.  And then there are the rest of us:  the ones who have surgery after surgery, who try every alternative therapy going in a desperate attempt to ward off more surgery only to find themselves back in the operating theatre with the white liquid of anaesthesia being shot into their hand.  That white liquid is the only good bit, and the buzz it gives you only lasts a millisecond, so it’s not like it’s worth it.  My Crohn’s is of the pretty bad variety and when I was first diagnosed, I was asked how I’d feel about a bag.  I was 19 years old and still felt bulletproof; how do you think I felt about a bag?  I didn’t want one.  A few years later, I was taken down to surgery having been told I was about to get one – they drew the cross on my stomach where it was going to go, told my then boyfriend (now husband) to read some literature, assured me that I would still be able to shower, swim and have sex, and down to theatre I went.  When I woke up to find they hadn’t done it, I was jubilant.  Victorious.  Overjoyed.  And so very very relieved.  From then on, not having a bag was like a badge of honour to me.  I boasted about it whenever appropriate, which admittedly wasn’t that often; I secretly rejoiced in it when I was at home alone, and vocally rejoiced in it every now and again when I wasn’t; everyone who knew me and knew about my disease knew what an achievement I felt it was that I didn’t have a bag, and after a while my consultant stopped suggesting it, no matter how ill I got.

And then in the summer of 2010, when everything else had stopped working, when I’d been mostly in bed for three and a half years, when I was going to the toilet up to 28 times a day, eating pethidine pills by the handful and could stand it no more, I went to my consultant and brought up the bag myself.  Would it help?  Should I have one?  Because if it meant all this pain and bedridden crap would end, I’d quite like him to whip out my colon there and then, and yes, I knew perfectly well that he wasn’t a surgeon but I could see a pair of scissors in his nurse’s pocket.

The consultant was surprised, but everybody else was closer to gobsmacked.  My teenage son, who had been brought up on stories of my marvellous skill at avoiding having a bag was actually quite horrified.  And angry.  I hadn’t thought about that when I’d decided to be completely open with him about everything for his entire life.  Hadn’t thought about how he’d react when I backed down on something I’d proudly sworn I’d never do.  He was monosyllabic with me for a day or so – which wouldn’t be unusual in most teens, but was in my one - then finally admitted he was worried it would be disgusting.  That I would be disgusting.  That he’d be repulsed by me.  He couldn’t get his head around the idea that while we were sitting watching television together, I’d be pooing into a bag on my stomach.  I agreed with him; it did sound revolting, but thousands of people had done it so it must be okay and we’d have to just trust that we would cope.  He wasn’t convinced, and to be honest, neither was I.  I was terrified. 

In all the years I’d been pretending I’d never have a bag, despite knowing on some level that it was an inevitability, I hadn’t done an ounce of research.  I had no idea how it worked, what it looked like, what it really was.  I suppose some people would say I was in denial; I prefer to think I was just ill-informed. Really, I was much like most people in the world, but that was about to change.

Of course it was the superficial that worried me at first.  I was given a booklet about ileostomies and I saw my first picture of a stoma. It looked kind of like a small sausage.  It looked red and wrinkly, and more than that, it looked sore, although I was told it has no nerve endings so not only is it not sore, it has no feeling at all.  Whatever the truth was, I really didn’t want one of those on my stomach; it was ugly and it stuck out and it was my intestine which belonged inside and not out, and surely it was enough that I already had a tummy full of brutal-looking scars.  Did I really need one of those as well?  For some reason, I’d thought it would be a hole, not a protrusion. 

I’m not alone in this – I asked a few friends what they imagined it looked like and the answers varied from the hole type arrangement I’d envisaged to one friend who thought I had a metal tap-type configuration somehow imbedded into me.  The best – and actually the closest – answer was from my younger sister who was visualising a character called Cedric Sneer from an 80s cartoon called The Raccoons. I can’t seem to paste in a link, but you can google it if you’re really curious.

The operation was scheduled for September, and I set about enjoying the summer through my bedroom window and joining my teen and husband in trying to convince ourselves that everything was going to be all right.  You’re probably wondering if the teen had to wait ‘til I had my bag to find out that it was, but that would’ve been cruel.  And he might not have wanted to visit me in hospital.  Luckily, the husband has a friend whose girlfriend has had a bag for more than 20 years, and she agreed to visit us. 

She was small and very pretty and she didn’t smell and you couldn’t see she had a bag at all.  And because we are basically shallow people, that did the trick for all three of us.  We were ready.

In The Beginning

 

Julie Andrews says you should start at the very beginning, but where is that?  I guess it starts with the Crohn’s, the bag is in the middle, and thanks to that middle, the end should be fairly far away.

So I’m going to start with the middle – sorry Julie.  The bag.  I’m not going to go on and on about the bag, so concentrate.  My bag is called an ileostomy, as opposed to the more commonly heard of colostomy.  Because a colostomy has more recognition as a word, that’s what I claim I have when people look at me funny as I come out of a disabled toilet looking perfectly healthy.  ‘I have a colostomy bag, okay?’ I say, slightly angrily, and their own slightly angry, a bit jealous, busting for a pee look softens somewhat.  And then I lock the disabled toilet door with my special key and skip away.  Last laugh mine, I think.

I’ve only had my bag just over a year.  I’ve had Crohn’s for more than 30 years - having been diagnosed in my teens - and was very proud to get so far without a bag, and before I get ahead of myself I’m going to give you a glossary of terms.  Kind of.

Crohn’s disease is ulceration of the digestive system that can occur anywhere from the mouth to the anus, but usually – as in my case – hangs out in the small and large intestines.  As a last resort, surgeons remove the colon, leading to:

Ileostomy is an opening into the ileum, part of the small intestine, from the outside of the body, providing a new pathway for waste material to leave said body.  In other words, a bit of intestine is brought to the surface of the stomach, over which a bag is placed to catch all the poo (I told you there’d be poo).   The bit the bag goes over has a title of its own:

Stoma is the name of the bit of intestine that is brought to the surface of the stomach.  Stoma is Latin for mouth. Perhaps there isn’t a Latin word for arsehole.

So now all that’s clear, I can carry on …

I’m very happy with my ileostomy – it’s changed my life for the better; I can do things I couldn’t do for years; I can eat things I haven’t eaten for decades, and I don’t have to worry about what I used to euphemistically call ‘having an accident’, which actually meant inadvertently pooing myself in public.  My bag could leak, of course, and sometimes – rarely – does, but that’s not the same. 

My Crohn’s was very bad.  Some people are lucky and get it mildly; some people aren’t.  I wasn’t.  I tried every drug going and when they all failed, I spent three and a half years in bed, in agony, with various complications of Crohn’s as well as the Crohn’s itself; stopped writing which is supposed to be my job, and watched far too many episodes of Doctors before I finally realised I’d have to have an ileostomy.  I do love my bag now, but I didn’t exactly jump at the chance to have one the first time it was offered. 

In fact, the first time it was offered was in 1990, and I effectively said, ‘No thank you, I’ll struggle on for twenty more years if you don’t mind.’  And I’m glad I did.  A lot of people with bags say they wish they’d had them years ago; I don’t.  I think I had mine at exactly the right time. 

So, now you know the medical stuff.  I’m going to assume that knowledge from here on in, and not patronise you by giving you the same information again.  I might tell you more details, but I’ll also be trying to prove myself a normal, middle-aged, slightly neurotic writer, mother and wife.  Who poos into a bag.