Thursday, 29 March 2012
If you’re not sure what ileostomy bags look like, just move your eyes to the right a little. Or the left. Or indeed, up or down. You may not have noticed or taken in what those funny little pinky coloured things are on this page before now; they’re bags. At least, they’re the bags I use – the Sensura maxi one piece drainable, since you ask. The arrangement for getting them is second to none – I call up my supplier, tell them I need a couple of boxes, and they deliver them to me. At the same time, somebody else at the supplier sends out a prescription for my GP to sign, but fortunately they don’t have to wait for that to be done before sending out my bags; I get those within 24 to 48 hours, depending on what time I remember to call them. It’s a fantastic system, and I fear for its survival when the NHS gets sold off in bite-sized chunks to people with no previous experience of whatever bit they buy. For now, though, it’s still working, and for that I am grateful.
With just a week to go before my trip to Barcelona, my brain chose to take a rest from being neurotic about flying and started to stress about how many bags to take; how to transport them; what other supplies I’d need. My first realisation was that I only had ten bags left in my last remaining box; they come in batches of 30. Ten would generally be enough for another 20 days, assuming everything went perfectly, but I was going away; I would need loads of spares to cover every eventuality, and what about when I got back; I’d need plenty for then, too. Which is why it’s so brilliant that I can just call and order. Except that by the time I realised that, it was after 5 on a Friday evening. The bags wouldn’t arrive ‘til Tuesday. I was leaving on the Wednesday. Which meant everything would be fine and I could go back to being scared of other things. See? Insane! And every time I started being insane and my husband saw me, he’d remind me of the moment I would get to see my friends; my girlies. Of how I’d be in Barcelona airport and the Australian and the American would walk through customs and we’d see each other and we’d all be squealing like teenagers; I should be getting excited about my ‘Waah!’ moment, he told me. After that, it just got reduced to him walking past as I was frantically writing notes, or counting bags, or checking my passport and he’d just wave his hands in the air and say ‘Waah!’ and that was supposed to remind me of the wonders that were ahead and ergo relax me completely. It didn’t, but it did help.
I took 14 bags in the end (over five days I should only need two. Three at the most), two tubes of paste (I’d need less than a quarter of one tube) and countless wipes and disposal bags. I took them all as hand luggage.
And fuck, what about swimming? I hadn’t swum since I’d had my bag. I was terrified of the obvious – what if the glue dissolved in the water (why on earth would it?) and the bag came off and there was liquid poo all around me; a trail of it behind me as I swam; far worse than that stuff that goes blue when someone pees in a pool; this would be mortifying. So, despite having a perfectly nice public pool literally yards from my house, and despite swimming being about the safest form of exercise for someone whose body has been hacked about as much as mine has, I hadn’t swum. Actually, I hadn’t even had a bath. But there was a pool at the hotel – the Australian had insisted on it. And the pool was on the roof, probably with an amazing view, and how lovely it would be to all swim in it as the sun went down. So I had a bath. A long bath. And the bag was fine – more completely stuck after than it was before, if anything – so I decided I’d be prepared to swim and duly packed a swimming costume with a strategically placed green streaky pattern down the left hand side, the effect of which was that I just looked like a fat bird in it, rather than a fat bird with an ileostomy bag, which may well put people off. Off of what, I have no idea, but you know what I mean.
And so we drove to the airport, the husband, the teen and I. Heathrow Airport, which is a bit of a schlep, especially when one of you – me – is mostly silent and trying not to think of anything at all, and every now and again one of the other two goes ‘Waah!’ With slightly less conviction each time. ‘There are shops at the airport’, the teen reminded me. Which helped for a moment or two. I could buy books. And a Puzzler. I love a Puzzler on a plane journey. And in hospital, as it happens. The rest of the time, I am barely aware such a publication even exists.
All too quickly, husband and teen had eaten bagels as I looked on, not in the least bit hungry, and I was waving goodbye as I made my way to the departure lounge. It was horrible. I couldn’t bear it. I shouldn’t go. ‘Waah!’ said husband. Teen smiled wryly, and a man took my passport and boarding pass and gestured me through. Nobody even looked at my hand luggage and the man I tried to show my doctor’s letter and ‘certificate of travel’ that explains all my ostomy supplies just waved me away as though irritated by my attempts at responsible citizenship.
It was actually better once I was through all that. I bought some Bendick’s mints, a bottle of water to take my valium with and made my way to the departure gate. I was just swallowing the second pill when I realised I hadn’t bought a Puzzler. Fuck. If I didn’t have a Puzzler I’d have nothing to focus on during the flight except the flight. I walked very fast back to WH Smith, bought a puzzler and reached the departure gate for the second time feeling sweaty and stressed. And aware that I had no time to go to the loo and empty my bag before the flight. Luckily, the valium had kicked in by then so I didn’t much care.
On the plane, I was relieved to find myself sat next to two lads not much older than the teen. They smiled at me and then proceeded to completely ignore me, which was fine. A nice steward offered me nuts and when I said I didn’t want to eat anything asked if I was a nervous flyer. I said I was, and he said to call him if I needed anything and squeezed my shoulder reassuringly. As soon as we took off and were safely in the air, I tore myself away from the Puzzler and went to the loo to empty my bag. As well as the valium, I’d taken several codeine, which work as a constipator, and my bag barely needed emptying. I returned to my seat feeling pretty good. The flight was actually uneventful until the last fifteen minutes when it turned into some kind of horror film. Loud bangs and horrible juddering that I managed to cope with at first, soon had me feeling like icy water was running down my spine. I clung on tight to the seat arms, as did the guy next to me while his friend stared at us both, trying not to laugh. ‘For fuck’s sake!’ I squeaked, involuntarily. ‘Exactly’, said the young man next to me. His mate just shook his head in despair. When we landed, the steward from earlier came over to make sure I was all right. I wasn’t really, but at least it was over and we had landed safely. In Barcelona. And I hadn’t covered anyone in poo.
In the arrivals hall, I waited for the others, still shaky from the end of the flight, but so excited. Waiting for my ‘Waah!’ moment. I saw their flight had landed from Amsterdam and waited anxiously for their familiar faces to appear; for them to come running towards me, happy and shiny and all of us ecstatic to be together again, about to embark on an adventure.
I saw the Australian first. She looked stressed and worried. Then I saw the American, who looked – well, she looked like a zombie; barely awake and not focused on anything. What the hell was happening? Surely they hadn’t fallen out in Amsterdam? It turned out the American had had a horrible flying experience of her own; feeling panicky she’d taken a Xanax (like valium but, from the evidence, a fair bit stronger) and then, when it hadn’t worked within a few minutes, she’d taken another one, finally ending up practically comatose. The Australian wasn’t used to prescription drugs and had been worried for the rest of the flight, particularly when she couldn’t wake the American on arrival. Somehow she’d dragged her off the plane and got her into a seat while she’d had to get both their luggage off the carousel herself; she’d then yelled loudly to the American to follow her through customs, reasoning that nobody would suspect them of smuggling drugs from Amsterdam and being that overt about it. The plan seemed to work, and despite her barely conscious companion, they didn’t even get their luggage searched, but they were both a mess, albeit in completely different ways.
I took the American’s arm, reassuring the Australian that I knew how to handle this and we made our way to the taxis.
Things could only get better, right? Just so long as my bag didn’t leak in the taxi, we were going to be fine. We were all together for the first time in 20 years, and we were in Barcelona.
Thursday, 22 March 2012
I had two things to consider; the trip to Barcelona to be with two of my dearest friends in the whole world, who both live on different continents from me, and the proctectomy - the operation to remove various other bits of gut and sew up my anus. I realise that sounds like one fantastic thing and one awful and scary thing, but for me there was almost as much fear involved in the trip to Barcelona as the operation, possibly more. Because I hate flying and although the flight to Spain is only a couple of hours, I would have to be awake for them, whereas the several hours of surgery I would spend asleep. Not that there was exactly a choice between the two, you understand. I was probably going to have to do both of them, but I wasn’t sure; I hadn’t exhausted all the possibilities yet.
I decided to pay one more visit to the surgeon. I wanted to confirm that I was definitely going to have the proctectomy, and see when he wanted to do it; I’d have to abide by that decision, obviously; if he wanted to do it in, say, June, when I was supposed to be going to Barcelona, then I’d just have to go along with that, wouldn’t I? And if you think I’m being mad, and can’t imagine why I’d be trying to get out of such an amazing trip, then you’ve clearly never been afraid of flying. I suppose it’s not flying I’m afraid of, if I’m honest; it’s crashing. It’s just not the way I want to die, and every time I set foot on a plane I feel one step closer to that happening. I know all the arguments; I realise it’s like rolling a dice, and that every time you do it, the odds are exactly the same. And that those odds – the odds that everyone on board will die a painful, fiery, terrifying death – are very, very small. But I can’t help it. People say it’s irrational, because we know about those tiny odds, and that statistically aeroplane travel is the safest form of getting from one place to another, but I think it’s rational because what the hell makes sense about being inside a heavy chunk of metal that soars safely through the sky without plummeting to earth? I do realise I’m being ridiculous in the face of overwhelming evidence that I’ll be perfectly fine, but I can’t help it and nothing and nobody so far has managed to convince me otherwise. And also now if I die in a plane crash, I’m likely to die covered in poo. I duly made another appointment with my surgeon.
‘I definitely want the proctectomy,’ I told him. ‘I thought we decided you’d take the summer to decide’, he told me. ‘I don’t need to,’ I assured him. ‘I know I want to have it.’
He asked if I was sure I’d really given it enough thought; told me to think about how I’d felt when I first got home with the stoma, so I did think about that. And I remembered that it was not dissimilar to going home with the teen when he was first born. Going home with this tiny little creature who was totally dependent on us; who couldn’t function and wouldn’t survive without our input. It wasn’t totally the same, obviously. I didn’t have to breastfeed my stoma and, as I’ve said previously, I didn’t choose to name it either. And it wasn’t both of us it depended on; it was just me. But I did have to change it regularly – not as regularly as we’d had to change the baby, but then not for a finite amount of time either; I was going to be changing my stoma forever. The thing that really felt the same was that unreality. You probably only feel it with your first baby, but then I never got beyond just one – that odd feeling that this probably won’t be forever. That somehow, within a short, unspecified period of time, things will change; the baby won’t be there any more and things will go back to how they were before and you’ll just have that memory – that ‘hey, remember when we had that baby in the house?’ thing. It’s nonsense, obviously, but the profundity of having a new baby and the reality of having a new stoma truly shared that unreal quality for me. At first. Gradually, I got used to both, and I was now as prepared to live with my stoma forever as I am to live with the fact that I have a son. I prefer my son, but I’m fully prepared to keep my stoma around as well. I told the surgeon all this, and it seemed to convince him that I’d given it enough thought.
‘So, when shall we do it?’ I asked. ‘Soon?’ He pointed out that being in hospital in the autumn or winter was probably a sensible idea, given that I was probably going to need a few months to recover afterwards. We might be in for some good weather any moment now, and I hadn’t been ‘healthy’ for that long, had I? ‘I think we should stick with what we said, and you should enjoy the summer.’ He told me.
It looked like I was going to be getting on that plane.
I called Australia and told my friend I wouldn’t be having the operation ‘til later in the year, so perhaps we should start looking into places to stay in Barcelona. Our American friend was definitely coming too, and there was a glimmer of hope for me there – what if she came to London first? We could fly together – I wouldn’t have to do it alone. If my bag did something weird, and it could, couldn’t it? I mean, air pressure and a bag of poo – bursting balloons and flying faeces sprung to mind, and that would be so much less embarrassing if I had someone to share the horror with. Not to mention that I wouldn’t be flying on my own so I wouldn’t be so scared of that bit. I let Australian get on with researching hotels and apartments while I called American to suggest she stopped off in the UK.
Remember I said I’d seen both of them several times while they hadn’t seen each other for twenty years? Of course nobody was coming to London first. They were meeting each other in Amsterdam for a couple of days before coming on to hook up with me in Spain. I tried not to sound whingey when I pointed out to American that I was a bit scared of getting on the plane with my bag; that I’d never done it before; that even going through customs was daunting, because what if they wanted to know what that lump was under my clothes? All the people in the queue would see … But she wasn’t to be swayed – she was just so damned excited about this whole trip. There was one good thing, though – they were both going to come to London afterwards, so maybe we could all do that journey on the same plane. Of course, I’d have to book that. To make sure it happened
Within what seemed like a very short space of time, we were booked into a three person room in a hotel that my sister had recommended, Australian and American had reservations organised for the Amsterdam leg of their trip and I was left with the task of booking the flights back for all of us. And the one there for me. I wasn’t getting out of this. I was going to have to take that first step of getting on a plane with my bag and being petrified and hoping like hell nothing happened and that I didn’t end up pooing on some stranger who had the misfortune to sit next to me.
Have you ever tried booking tickets one way from Barcelona to London for people with three different nationalities, only one of which is British? It’s not easy. My advice is don’t. Ever. I spent three and a half hours on my Mac one afternoon, got precisely nowhere, and had nothing but tearful frustration and a very full bag to show for it. The next day, I opened three different tabs, all with a website based in Spain (and yes, written in Spanish), and hoped like hell I was doing the right thing. When I clicked ‘reservada’ on all three in rapid succession and actually ended up with us all booked on the same flight, it was like some kind of miracle. I squealed with joy and danced around the room shouting ‘Yes! I’m so clever! I’ve done it!’ feeling quite dizzy with my own success for quite some time before the husband and the teen came
in to see what all the noise was about. I boasted of my successful endeavours and gave them a blow by blow account of just how I’d managed such a marvellous and complicated thing.
‘Wow,’ said husband. ‘Yeah,’ said teen, ‘You’re really going to Barcelona.’
He was right. The hotel was booked, the flights were reserved, everything was paid for. Fuck. I was really going to Barcelona.
And so was my stoma.
Thursday, 15 March 2012
I’m drinking a salty lassi; you know what that is, right? An Indian drink you can get at most establishments that will supply you with curry and nan breads. One of the things about having a bag is that you have to take in extra salt; the usual amounts get washed away or diluted or something, and we have to top it up. The advice is to eat a packet of crisps a day, but I’m not a big fan of crisps and when I was lamenting this fact to my lovely IBD nurse, she asked if I liked lassis. I love lassis, as it happens; and it’s the salty ones that I really love, but neither husband nor I had a clue how to make one. It was an occasional exotic treat when the husband and the teen had a takeaway curry – the thing the restaurant made that I could have. Luckily for us, my IBD nurse knew exactly how to concoct a lassi and so it has become my daily drink. Luckily, I’m a bit obsessive like that, and can easily eat or drink the same thing every day for years. There usually comes a time when I completely go off it, but it does take a while, and so far I’m doing okay. We’re over 18 months in and most days I’ve drunk a lassi. There is a reason I’m telling you this, I promise.
And on that subject, I have somewhat of a confession to make. You know that three and a half years I spent in bed before finally agreeing to have an ileostomy? Well, four weeks of it was spent in Australia. I should explain – we have very dear friends in Melbourne, quite a few of them, and we try to get out there to see them every few years if we can. We have close friends who have a place at the end of their garden that we stay in. There was a point, after I’d been in bed for two and a half years, when we felt kind of desperate for a way out; thought maybe, perhaps, there might be something kind of mad we could do that would help things. For some reason, we decided that thing might just be a trip to Oz.
I did fine for the first couple of weeks – I was probably flying high on the fact that we were there. we spent Xmas in the sun for the first time ever, which I have to tell you was weird; I will never forget walking around a supermarket in 34 degree heat, listening to ‘Let It Snow’ playing through the speakers. Though I did feel a wee bit smug knowing it actually was snowing back home. I wasn’t being like a totally healthy person, you understand. I was injecting myself with a drug for my Crohn’s once a week, resting a fair bit, but I was managing – with the help of mouthfuls of opiates – to get out and about. To walk in the sun, visit the beach, swim in the sea. And then it all started to go wrong; the third week was tough – I was fighting hard; saying yes to invitations and finding myself having to go straight back to where we were staying ten minutes after we arrived. By the fourth week, I was in bed, wondering how the hell I was going to cope with the flight home. When we left, I couldn’t imagine how I’d ever manage to go back – I said goodbye to people I love, knowing I might never see them again, and this included a friend I’d shared a flat with when I was younger, who was there when I was diagnosed, who lived with me and my Crohn’s pretty much at its most revolting because it was undiagnosed; unsurprisingly, a friend I consider one of my very best. Those goodbyes were probably the most horrible of my life so far, not including the ones to people who were dying. The flight back included an 8 hour stopover in Hong Kong and it was a nightmare; totally horrific; quite the worst flight any of us had ever been on. By the time we got back, all three of us doubted we’d ever make that journey again. And I was back in bed, sicker than ever.
It was several months later when I had to phone our Australian friends, each of them individually, and tell them I’d decided to have the bag. They’d all known me long enough to know what a huge change in thinking that decision was, but they were all encouraging; concerned about the surgery; all the usual things that we can expect from good friends. Nobody screamed that I shouldn’t do it, or even reminded me that I’d always sworn I never would. The calls made me think about all those ‘last’ things – the last time I’d got on a plane without a bag of poo perched on my belly; the last time I’d swum in the sea, unencumbered by any extras; the last time I’d worn those clingy summer dresses I’d sat on the beach in. All those lasts I’d blithely sailed through without a second thought to their poignancy. Why would I? I was the chick who was never going to have an ileostomy.
You know the next bit, of course; the surgery, the recovery, the fantastic new life – that’s about where we were up to, I believe. I was going to the theatre, wandering round the shops, generally acting fairly normal, if you don’t count the necessary periods of rest. Oh, and the bag of poo that had to be managed, changed every couple of days, and generally dealt with. But all those leaks and things aside, I was starting to realise I could live a life I’d thought I’d never be able to enjoy again. And that was pretty damn great.
So, you may well be able to imagine how thrown I was when my dearest friend from Australia called to say she was planning on doing a trip to Europe and wouldn’t it be great if we could meet up somewhere neither of us had ever been? And wouldn’t it be even better if we could get out dear friend in the US to come and meet us as well? We’d all been close a hundred years ago when we were young and the world was full of possibilities and we’d all lived a life of indulgence in and around London’s West Hampstead. We were all older now; married with teenage children and living far less selfish, debauch lives. It was 20 years since we’d all been in the same room, and though I’d been lucky enough to see both of them in the meantime, they hadn’t seen each other. This would be the trip of a lifetime; something none of us had ever dreamed we’d do, but here was our opportunity; I was up for it, right? Well, of course I was, in theory. When would we do this thing, I asked and she suggested early June. She was visiting her brother in Germany and then we could meet somewhere – any ideas? I’d always wanted to visit Barcelona, so I suggested there and we agreed and said we’d ask our American friend but thought she’d probably say yes, so it was a done deal; we were going to all meet in Barcelona in June.
On paper that sounds fantastic; what could possibly be wrong? Well, where do I start? There was the second surgery to think of; when was I going to have that? I was pretty sure I wanted to have it, and I don’t like waiting around when I’ve made decisions. And then there was the flight – I’d have to fly to Barcelona. Alone. With my bag of poo. Who knew how that would behave on a plane? And apart from that, I hate flying. With a passion. It scares the hell out of me; I’m one of those insane people who has to mentally guide the pilot for the entire journey and that’s after taking an ill advised high dose of valium. Also, I’d never flown alone. I was in my forties and I had never, once, flown without having someone with me. Now I was going to have to do it for the first time and I was going to have my bag of poo with me, and for fuck’s sake, what was I thinking? I couldn’t do this. It wasn’t going to be possible. But I couldn’t not do it, either.
I tried to be positive. I’d be with my two best friends in the whole world. This was a once in a lifetime opportunity. I was going to see my Australian friend one more time. And we were going to be in one of the most amazing cities in the world; one I’d always wanted to visit; one that served food that was universally safe for me to eat.
Husband and teen were hugely encouraging – of course I could do it. They’d take me to the airport, I’d take my drugs, and the next thing I knew I’d be with my friends. It would be fine. I was feeling so positive about it that I actually let them convince me. I started thinking about the things I would see, the things we would do, the places we could visit. We were all laughing and planning my big adventure and then I realised there was a huge problem we hadn’t thought of – I was pretty damned sure there wouldn’t be anywhere to get a lassi in Barcelona. Either I couldn’t go, or I was going to have to eat salt. I’d done it before, on occasion – a teaspoonful of salt, gently licked at like I’m some kind of horse. It wasn’t nice exactly, but it wasn’t a reason not to go …
Thursday, 8 March 2012
I’d been living with the bag and feeling well for a good few months when I went to see the surgeon. He was pleased with my progress, I was thrilled with it and so grateful to him and his team, not to mention the NHS, without which my family would either be bankrupt with me and my bag, or a smaller family with enough to live on and no mother. It’s that simple. And if you’ll allow me a short soapbox moment, I really hope that if you’re reading this, you’ve also signed Dr Kailash Chand’s e-petition and if for some reason it’s slipped your mind or fallen off your to-do list, then you can do it now by using this link here. It was already shamefully ignored some 10,000 people ago, but Cameron and Lansley and the Tory government are determined to push through a bill that will destroy the NHS and while we are clearly not being heard, we can at least add our name to show that we want to be. And don’t fool yourself into thinking you hardly use the NHS and it won’t affect you, because one day you will, I can guarantee you that; and if you find you have to pay for it, don’t let that be because you did nothing. (A quick addendum is necessary here as Shadow Health Secretary Andy Burnham has guaranteed that the Bill will in fact be debated and voted on in the House of Commons on March 13th. You should still add your name though. The more signatures, the more of us there are to try to ignore.)
Okay, now slipping elegantly off that box and back to the story that the NHS has kept me alive to tell. So, after a few minutes of mutual admiration, ‘you’re doing so well’, and ‘thanks to your sterling work’, and ‘your stoma is so pretty’, my surgeon reminded me of something I’d been tirelessly not thinking about since I’d first realised it was an issue. There was another operation I could have. One I probably should have, but that was actually optional. It’s called a proctectomy and it is basically the removal of the rectum. In my case, it would mean my ileostomy was permanent, something we’d both already agreed upon, and so the anus would be sewn up. That’s right; my bum would be sewn up – there’d be no hole there. You’ve got to admit that’s weird. It would mean the Crohn’s that was still in my rectum, though mild now, would be gone forever, that the likelihood of bowel cancer was reduced, and that the mucus fistula that I’d had and that had necessitated a second bag, would never return. As a bonus, I’d never have another colonoscopy either. It all sounds like a bit of a no-brainer – why wouldn’t I have it done? Why didn’t I have it done in the first place? Well, the reason I didn’t have it done at the same time as the ileostomy was so that if I found the whole stoma/bag situation untenable, I’d be able to have a reversal – you know, go back to using the loo 20 times a day, untold agony, and the possibility of crapping myself in public with no warning. Some people do hate it; they can’t bear it; they beg for a reversal and although I was pretty sure I wasn’t going to be one of those people, my surgeon had only just met me and didn’t want to take any chances. The reason I was being told to spend time considering now is that it’s a big surgery. A huge surgery; far bigger than the ileostomy itself. The rectum lies deep in the pelvis and is not easy to remove, it can cause complications in other areas including the genitals, and in Crohn’s patients the anal wound can be very slow to heal, and rarely but sometimes doesn’t heal at all. My surgeon wasn’t prepared to advise me which way to go; this was up to me. And whilst I was pretty sure I was going to have it done, we agreed that I would take the summer to decide. On my way out, the IBD nurse reminded me that a good thing to do with such a complicated decision was write a list of questions that I could ask – either when I next saw the surgeon, or through her by email in the meantime. I’d done that before the first operation; I’d asked everyone I could every question I could think of, and it had helped. Maybe I should do it again.
Usually, I don’t go out at night if I’ve been out during the day. With Crohn’s I just don’t have the energy to do both. But that particular night we had tickets to see a play that a dear friend of mine had written, and I really wanted to go. Actually I was determined to go – I’d missed at least two of her new plays while I’d been ill and to miss this one, when I was healthier than I’d been in decades, would pretty much make me one of the world’s least desirable friends. It wasn’t like we were going to have to
negotiate the West End of London either; this play was on at a theatre in Watford, and we were all going so I wouldn’t even have to drive there. And once we arrived, I’d be mostly sitting down. For my first trip to the theatre as a baglady, it was a gentle ease-in. Or so I thought. We got to the theatre and realised we had to park in a nearby multi-storey car park. Horrible. It was in a part of Watford that, in contrast to the lovely street the theatre was on, seemed industrial, grey and bleak. It was dark, but I couldn’t imagine that a bit of sunlight would make it feel much safer or more exciting. We parked on a high storey and had to walk down stone steps, in a corner of which lurked a couple of white youths. To me they looked scary. ‘We’re gonna get hurt,’ I thought, trying not to let the teen see I was scared. ‘I’ll give them everything’, I decided, ‘my handbag, my phone …’ But then, I realised, I wouldn’t have my emergency ileostomy kit; if my bag needed changing, I’d be helpless. And in the middle of Watford. As we approached them I took my teen’s arm in one of my own, and my husband’s in the other and looked straight ahead. As we got closer the familiar smell of weed wafted gently into my nostrils and I exchanged a look with my husband. I wasn’t scared any more. Young men stoned on dope aren’t violent; they weren’t going to stab us or burst my bag with an unfortunately aimed punch. I actually smiled at them as we made our way past; as they politely stood aside. These guys weren’t threatening – they were sweethearts. And I was a loon. In my defence, I hadn’t been out much over a four year period – my understanding of social interaction and general outside behaviour was a bit rusty.
The play was great. There was a point halfway through the first half when I realised I was in the middle of a row in the stalls and panicked about how embarrassing it would be if I needed to get out. I touched my bag through my top and it felt full; I wanted to check it; I needed the loo. But I was just going to have to wait, and fortunately the play kept me gripped enough that my mind wasn’t screaming about the bag – just urgently nagging in a stifled whisper. And it was only about fifteen minutes until I was able to push my way out, run to the ladies’ toilets and check to see that, of course, everything was fine.
When the curtain came down, we left to join the playwright in the bar. She had a friend with her who was a designer and we all sat down to talk and drink. Well, everyone else drank; I tend not to, it just makes things a bit too runny and difficult. We spoke of the play, we dissected each actor’s performance, delighted in the sets and the play itself and wondered at the fact that the ageing audience had appeared to enjoy it as much as we had. Our friend is clearly a better playwright than she knew. Eventually I found myself alone with the designer and we somehow ended up talking about my bag. His sister had one too, it turned out, though hers was a colostomy so not exactly the same. I told him of the conversation I’d had with my surgeon that day and he wanted all the details of the operation I was considering. When I got to the bit about sewing up my actual anus he was horrified. I laughed and put it down to the fact that he was quite clearly gay. To me the anus was a source of nothing but pain and embarrassment; for years it had been the porthole for nasty, corrosive, evil-smelling poo, and ninety percent of the time it had been a sore, bloodied and horrible entity. For him the anus served a quite different purpose and just as I couldn’t imagine doing what he did with his, so he couldn’t conceive of anyone not wanting to enjoy such pleasure themselves. He leaned close and said, quietly and caringly, ‘Can’t you ask them to leave a bit open – you know, for your husband?’ I didn’t know what to say; I couldn’t think of many things that would be less fun than than backdoor sex when you had an anus like mine, but he didn’t need to hear that, so I gave him the only acceptable response and giggled conspiratorially.
of me that would’ve liked to see the look on my surgeon’s face if I had …
Thursday, 1 March 2012
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.