Wednesday, 6 November 2013
I wrote this blog back in July, but didn’t post it. Somehow it felt too raw, too personal; I’d been enjoying writing light, humorous posts about language and the career I used to have writing satire. And this wasn’t that. This wasn’t me being quite healthy, and by the way I have a bag. It was more like the pieces I used to post – when the hard stuff was going on. Now, with a bit of distance, it feels ok. So anyway – here it is:
I have a hole in my stomach. I’ve had a hole in my stomach before. I had that first one for two and a half years, and finally decided to let the surgeons sort it out when it got to be the size of a kiwi fruit and a piece of chicken fell out of it. Of course, things weren’t quite that simple – when I got to the hospital, I found that where I thought I was maybe a bit thin, they were of the opinion that, at less than five and a half stone, my body wasn’t strong enough to withstand surgery. So I stayed in hospital for a couple of months while I was fed through a main artery in an effort to fatten me up in readiness for my operation. It was a kind of medical Hansel and Gretel situation, only without the cage. Or the nasty witch. And with cigarettes. This was the 1980s, we were allowed cigarettes in hospitals then, and thank goodness. I gave up smoking long ago, but one should never underestimate the ice-breaking properties of sharing a disgusting habit.
When this current hole started, I was pretty sure I knew what it was, but I decided to employ a strategy of pretending it wasn’t happening, coupled with occasional periods of deciding it was something minor. Just an abscess, or a boil type of thing. People with Crohn’s get those. I get those. But after 3 months of it not healing, my GP convinced me to tell my Consultant, who booked an MRI, which went on for an hour and a half, and during which I fell asleep. An MRI is that loud, bangy, claustrophobic tube thing. And yes, I did fall asleep in it – I’m hard, me. Last week I went to get the results and my Consultant told me to guess what it was. I guessed it was a fistula. It was. It is. A fistula, for the uninitiated, is an impressive act of the body. When a piece of intestine breaks down and starts to suppurate, the body knows that if it just allows the suppurating bit to weep where it is, lots of other bits will get affected and infected and in short order everything will go septic and the person will die. Bodies want to live, so what mine has done is form a track from the site of the suppuration to the surface of the skin, and that’s where the nasty stuff leaves the body. Through a hole in the stomach, onto a dressing that is best changed every day after a shower. And there we have the miracle that is the fistula. Only this particular miracle rarely goes away on its own. Historically, we know that on my body it most definitely doesn’t go away on its own. At this point, it’s very small, and not much of a bother, so my instinctive reaction is to do nothing. Of course, this was my instinctive reaction in 1985 and that didn’t turn out so well. This time, though, my Consultant is in agreement that no decisions need to be made just yet. We’re going to wait until late November before we make any decision. I say ‘we’, because he says ‘we’, but we both know it really means ‘I’. Me.
He tells me that he knows it’s not sexy. I point out that half an inch below it there’s a bag of poo swinging freely. That my stomach has so many scars, anybody who saw it would believe me if I told them I’d been the victim of a shark attack. On top of that, I’ve been married for 22 years. Sexy is not really an issue for me.
I’d gone to the hospital knowing I’d have to have surgery at some point. Actually, my biggest concern had been that Kate the Princess would have had her baby and left by the time of my appointment, because I go to the same hospital where she gave birth and I needed to park. But I’m digressing. Which is what I kept doing when I was with the Consultant, because the one thing I really didn’t want to do was Discuss The Options.
Ok, so The Options. I thought there was only one. I was prepared for that one. The operation. But, as it turns out, there is another choice – the biologic. Biologics are new-ish, and powerful, and nobody knows their long-term effects because, you know, the new-ish thing. I have taken the two biologics that are used most often. The first one worked for a bit then sent me into anaphylactic shock – fortunately, I was in the hospital at the time, so a crash cart was handy, as was a nurse who acted swiftly enough that the crash cart served only to make me think I was in an episode of ER without George Clooney. So I stopped that one. Then the second biologic came out, and I got a ‘compassionate dose’ before it was actually passed for use in Crohn’s. That worked quite well for 4 years, and then it stopped working, and then I got the bag, and then I thought I probably wouldn’t need any more operations, and I certainly hoped I’d seen the back of biologics for the foreseeable future. There’s a new biologic now, and I can take that. In case the fistula has been caused by active Crohn’s. Except that I had a flare-up a while ago and it’s gone now, but the fistula hasn’t. That doesn’t mean there isn’t any active Crohn’s, but it does mean it can’t be that bad, as it’s not affecting me in any noticeable way. The fistula might also be caused by an adhesion – a common post-operative issue with bowel surgery. The MRI couldn’t tell what’s causing it. We don’t actually know why there’s a hole in my stomach. I told the Consultant I’d prefer the operation please, thank you very much. I found the biologics very debilitating, I don’t think I’m having a flare-up, and if I do have one bad enough to need biologics one day, it would be better if I haven’t exhausted all those available. Also, I’d be on them for an unspecified amount of time. An operation will be big and all that, but I know how to do them, I recover from them, and it’s over. It’s a finite kind of an issue. And anyway, we don’t have to even think about making a decision until the end of November, we’ve already agreed that. With The Options discussed, I left and drove home.
At home, I was on my own. Husband was working in Manchester and Son was staying at a friend’s overnight. Son had come to the hospital with me, we’d gone for a milkshake afterwards, and I’d gone home while he’d gone to his friend’s place. He knew I was fine, I was smiling, everything was good. And I wasn’t really on my own because there’s the cat.
And anyway, I was fine. I had dinner, I watched telly, I went on Twitter and didn’t mention the hospital, and then I went to the bathroom and sunk onto the toilet seat, sobbing. Crying like a toddler does – big, abandoned wails and howls. I wasn’t fine at all. I don’t want another surgery, and I certainly don’t want to put any more powerful biologics into my body. I don’t want to be sick any more, and the sudden realisation of that that was making me bawl from the pit of my soul. And then it was over and I was fine again. Maybe 5 months of a hole in my stomach had needed to be purged. The next morning the sun was shining and I danced around the kitchen with the radio on, emptied the dishwasher, had a coffee and a banana, and then I got in the shower and did a full on Glenn Close Big Chill sliding down the wall sob-fest all over again. I think maybe I’m not fine. And what is it about the bathroom? I was alone in the house, I could have howled like a werewolf during a full moon in the living room and only the cat and the goldfish would have heard me. As it was, I left the bathroom door open both times I fell apart and the cat looked at me with something like disdain as I made ridiculous noises and my face grew puffy. He couldn’t help looking at me like that, I suppose - he is a cat. And I don’t think he meant it, because he spent a good part of the next two days dropping half dead frogs at my feet.
Oddly, the hole in my stomach is where my tummy button used to be. Before my scar kind of healed over it, so that it almost looks like it was never there. Now it looks like it is there, as if my body didn’t like that it went missing. It was born with a tummy button, which is, when you think about it, a physical reminder of how we survived through to birth in the first place, so it’s not unthinkable that my body would want it back. It doesn’t, of course – it just wants to let the pus out of my body without it killing me.
I’m fine with that. I’ll deal with the other stuff in November. And take a deep breath every time I go to the bathroom.
Monday, 20 May 2013
There’s been a lot of anger on the internet lately – particularly on Twitter – about people’s use of language. Mostly I don’t mind what language people use as long as they’re not being stupid about it. Ultimately though, I’m unlikely to be the person tweeting you and claiming to be the arbiter of such things. There are 3 pieces written by people I like a lot that cover this subject brilliantly, and to which I don’t need to add anything.* Except to say that, as a writer and believer in free speech, I’m mostly happy to let people use whatever language suits them.
But a few nights ago – might be longer, might be a week or two; I’ve been taking pethidine a fair bit lately - I saw a tweet that I really did object to. Someone I follow was discussing somebody who had done a bad thing with somebody I don’t, and I read the whole thread, only to find the person I don’t follow – and never would now –had tweeted that this ‘bad’ person was ‘a colostomy bag filled with hate.’ Actually, I should put that on a line of it’s own; it’s that infuriating.
‘A colostomy bag full of hate’
Where to start? What did this tweeter think she was doing? Did she think she was being funny? Clever? Original? Using her 140 character limit to its best effect? Well, fuck you lady tweeting woman, because you’ve just found the bit of language I am offended by.
You’ve just reminded me why I started writing this blog in the first place, and why I shouldn’t stop, and why I should try to get people to read it from the beginning. You made me see that I’ve failed in my mission to normalise what’s happened to me and thousands of other people like me. Obviously, I realised my one little blog wouldn’t change the world, but I had hoped I was part of something bigger; a little ripple in the sea of changing understanding.
You seem to honestly think that this is a disablist bit of language nobody will mind you using. Well they will. I do. Would you say a wheelchair full of hate? A prosthetic leg full of hate? No, of course you wouldn’t. I don’t think you’re stupid. But you think this is ok. And I think I know why; I think it’s because a colostomy bag is full of poo. And poo is funny. Well yes, poo is funny. Taking the piss out of people who discharge it in a different way from you is not your place. I can do it. Anyone with a bag can do it. My friends can do it to me, but you can’t. You can’t arbitrarily use it as a term of derision. As a way to sneer. As the most hideous way you can think of to describe a person.
Obviously, I could have taken this woman to task at the time, but I don’t know her, she doesn’t know me, and it would come at her out of nowhere. Maybe writing a post about it, and not giving her the right of reply is wrong. To be honest, I don’t care; her tweet is just fuelling the fire of what really concerns me.
I’ve not blogged on a weekly basis as I used to because I felt my story was told. Every tiny scary, terrifying, gory, uplifting detail of deciding to have a bag, to having the surgery, to having a second surgery to make it all permanent, has been laid out before you, should you choose to read it. I’ve done my little bit to effect some kind of change, and I do know it’s just a tiny bit. But now I find myself wondering what the point was, because the prejudice clearly remains. The concept of a bag as something hilarious and disgusting lives on. My tiny bit is nowhere near enough.
I’m told it was cited on tv as something hideous that could be avoided by eating correctly - by a well-known celebrity doctor, no less. I didn’t see it myself, but have tweeted him many times asking if it was true, if he really did that, and he hasn’t replied. A doctor! Telling the world of people who watch his show that having a bag is disgusting. If it is true, then we baggies have a lot further to go than we thought.
A young woman I talk to on Facebook – a beautiful, funny, intelligent young woman – was being chatted up in a pub not so long ago, and as it was going so well decided she would disclose her status as a bag wearer. And the young man who was chatting her up, who clearly found her attractive and engaging, responded in the way we would all hope nobody would ever respond. He told her he thought that was repulsive, that she was repulsive, and walked away, rejoining his mates at the bar and doubtlessly telling them how very repulsive this gorgeous, brave, lovely young woman was. She, of course, was devastated. He, of course, was scum. But maybe because of ignorance. Maybe because he doesn’t know enough. Maybe because nobody he knows or cares about has a bag. Or maybe he’s just scum.
I don’t think the tweeter who used the line that caused me to write this post is scum. I think she’s just ignorant. I think she hasn’t read all the information that is out there, and why should she have? I don’t expect her to know. I do expect her to think though; to be aware that there are people out there – out here – with bags who would really rather they weren’t used as an unfunny line that the user thinks is terribly clever. It isn’t clever. It’s horribly unoriginal and really rather dated. I remember people making colostomy bag references when I was at school, and that was in the 1970s.
For me, my bag is a life-saving, life-changing, amazing, miraculous thing. Most of us who have them have had our body replumbed as a way to avoid an early death. And think about that; what an extraordinary thing medicine has created, that a body’s plumbing can be diverted - rerouted, so that it comes out from a whole other place - so that people don’t die. Not only do we not die; we go on to live lives that we’d forgotten existed. If you see us in the street, you won’t be able to tell we have bags of any kind. All you’ll see is someone apparently living a normal life. What we’ll know is that we can only appear to be doing that – actually be doing that in many cases – because of our bags. How can that be disgusting? It’s as disgusting as a new heart, or a new kidney, or … well, you get the point.
Of course, in the end, I know it’s a bag of poo. To me, it’s ‘just’ a bag of poo. No big deal. To too many people, still, it’s a filthy/comical/unthinkable bag of – euch – poo. How I’d love to see that change.
Regular readers will know that I have an ileostomy, and not a colostomy, but even good friends frequently get that wrong; many people don’t know the difference, and that’s fine – I want to normalise bags of poo in all their forms - you don’t need to know the detailed differences between the two. I do, obviously, or I’d end up ordering the wrong supplies and the results would be very messy indeed, but otherwise I couldn’t give a toss. I don’t mind if you don’t know the details of what it does, or how it works and I really don’t care what you call it, as long as you don’t use it as some form of insult. If you’re going to use it in a joke, and you don’t want to offend anyone, there’s only one rule, and it’s the same rule that I’d apply to any joke – for fuck’s sake, make it funny.
*links to those three excellent pieces about language on the internet, complete with twitter names. Recommended reading:
Thursday, 14 February 2013
In the mid-90s, having found myself on a hiatus from surgeries where huge chunks of my bowel got hacked out, and having survived giving birth to a very small boy, I was writing quite a lot for radio. A producer asked if I had any series ideas, and I came up with Trust; a satire on the NHS. Remember satire? It has a long history, and was still alive and well during the Tories’ last, endless reign, and then it seemed to disappear. It’s not gone exactly, I think it just hides, masquerading occasionally as drama, when we’d expect it to be comedy. Certainly, we have to look a lot harder to find it. The dictionary describes satire as ‘the use of wit, especially irony, sarcasm and ridicule, to attack the vices and follies of humankind’. I think we’d all agree that’s a good thing.
Anyway, I digress – whatever satire is or isn’t, and whether it is or isn’t represented adequately on television or radio today, is not my point. My point is the story of Trust. The simple premise of Trust was that a corrupt hospital manager was brought in to do a kind of top-down reorganisation of the hospital he was charged with running. Sound familiar? Maybe so, but bear in mind the first series went to air in 1995. This nonsense of which I wrote was made up. Silly. Satire, with the emphasis on the ridiculous.
An aside, at this point. I, like many other leftie types, have often acknowledged that Labour was to blame for the first wave of the ludicrous amount of managers, without any medical knowledge or expertise, brought in from the business and industry worlds to take charge of the NHS and its treasures. However, looking back at Trust - which I wrote, but clearly don’t remember all that well - I have to accept that that’s wrong. I’m wrong. All of us who admit to Labour’s part in starting the regime that is now becoming the end of the NHS, are not quite right. I was and remain no Blair fan, and he did definitely make things worse on that score, but clearly – and apologies for sounding like Cameron in reverse - the Tories started it. I may have had my own vision of where it was going, but I certainly didn’t make up NHS trusts and hospital managers. I extrapolated from what was there. And it was put there by the Tories.
It wasn’t the greatest writing in the world, I don’t imagine. It was quite knockabout with scenes of total lunacy at times. The basic premise was that the hospital manager – played by a brilliant actor, whom I won’t name, because I never do in this blog, but it’s easy enough for you to find out – met up every week with the managers of other hospitals to bid for surgeries; the hospital offering the cheapest deal got the operation and the aftercare that went with it, and made their profits from that. Our evil manager took to undercutting the other hospitals on surgeries for patients who might not make it through their particular procedures, then didn’t do the surgeries and ‘let them’ die. The relatives were told their loved one had died on the operating table, and our ‘hero’ made the hospital finances look good, whilst pocketing a nice chunk of change for himself. He managed to blackmail enough of his staff for the scam to work, and from that seed grew a whole series with, as they say, hilarious and horrifying consequences. Hopefully. Certainly, the reviews were good, including – and this may well have been the highlight of my career so far – one in the British Medical Journal, which was quite long, complimentary in parts, and ended with the warning that such a hospital manager as the one I’d invented may well turn up at the reader’s place of work any moment. (You can read a bit of it here.)
Back then, some of the things that ended up in the series I thought were completely ridiculous. There were drug companies bribing staff to use only their products; we had wards running out of syringes and dressings and having to make deals with other wards to get the apparatus they needed. When I was in hospital in 2010 I saw that actually happen. Only it wasn’t syringes or dressings, it was giving sets, which are used to give patients fluids intravenously. There weren’t any on the ward and they had to swap something they did have with another ward to get them, so that patients waiting for iv fluids could get what they needed. In Trust, we joked that the NHS would become all about money.
Happily, a second series was commissioned, and we had to come up with a new scam. This time we went with organ harvesting. Illegal organ harvesting, where patients were kept alive, when that wasn’t exactly their care plan, and their organs harvested without the relatives’ consent or knowledge, and before they knew their loved one was ‘dead’. The organs were then sold on, and again, our hospital manager and his accomplices profited, despite the accomplices’ many attempts to bring the whole situation to a halt. None of this sounds funny, I realise that. Back then though, it did seem crazy and impossible, and led to the requisite jokery its time slot demanded.
And then, halfway through the airing of series 2, Trust was pulled. There was to be an election that year, you see, and the BBC couldn’t be seen to be transmitting anything that may influence the way that election would go. Infuriating, obviously. Stupidly complimentary in a way; the merest suggestion that my writing could be that powerful. That someone lying in a late night bath would hear my words coming from the mouths of wonderful actors and think, fuck me, I’ve voted Tory all my life but I’m not going to any more because of this comedy, satire thing I’ve just half listened to. That they would then wash their armpits with renewed vigour and a whole different take on life, thanks to our little late night show. Nonsense, of course. But it happened. Which was okay, we thought. The producer and I, both of whom had grown to love our programme and all who worked on it, worried slightly that listeners would be doing other things over the summer when the series returned. Things like going on holiday, or spending balmy nights in their gardens listening to music, rather than words. We needn’t have worried, though, because Trust never did return. I still have a letter somewhere from the then controller of Radio 4, telling me that now that Labour had got into power, the destruction of the NHS was no longer a concern. Not a worry. It would all be fine now, because Labour were in charge. I did honestly sneer back then; I’d like to think it was because I didn’t believe it; because I knew Labour under Blair was nothing like the Labour of old, but it was a long time ago and I might just have been cross that I wasn’t going to get another series.
Fast forward 15 years and my son, 20 years old, is at the wrap party for an indie film he worked on. Coincidentally, and somewhat age highlightingly, the director’s mother and I had worked together in an advertising agency a hundred years ago, and our children – I’m not even going to think about how old this tale makes me feel - were talking about said coincidence with a couple of the actors. One of the actors is dating the son of the brilliant actor who played my evil trust manager, and my son tells this actor of this similar coincidence. My son tells her his mother also worked with her boyfriend’s father. On a radio series about the NHS. She looks at him, and says, ‘It wasn’t Trust was it?’ My son confirms that it was, indeed, Trust, and she tells him that her boyfriend plays it to her often, citing it as his father’s finest work. Which kind of brings the whole story into a nice circley thing, makes me feel very old indeed, and gives me the comfort of imagining that if I ever write something about kids in their 20s, I could probably get a couple of this country’s most promising young actors to be in it.
I don’t know if Trust was that actor’s finest work; certainly I’ve seen him be extraordinary in many things, but I’m just happy that somebody who knows a lot about him would think that it might be. I occasionally worry that it may end up being my finest work, but l should probably talk to a therapist about that.
I’d love to have another crack at a satire on the NHS. I’d love to revive Trust, if I’m honest, and find out what these characters would be getting up to now – older, wiser, and way more experienced at the evil they can do. Now with added legislation to help them, and influential people happy to turn a blind eye in return for a favour or two. I’m not sure I could come up with anything more outrageous, more horrific, less compassionate, than what is actually happening, though. I’m quite sure I never would have dreamed that responsibility for universal health care would no longer be a government duty.
I’m not sure if we can save our NHS. I am pretty sure it will never be the glorious thing it was when our generation was growing up, and I seriously doubt our children will get healthcare free at the point of use for the rest of their lives. I fear for people who, like me, have chronic illness and use the NHS and its services on a daily basis. For the terminally sick, the disabled, and the old. And never would I have imagined that such an important institution would slip through our fingers so quietly, so unnoticed, so unreported as it is. (See a an excellent overview of what is happening here, by committed campaigner, Marcus Chown)
We have to keep fighting, protesting, signing petitions, writing to MPs, screaming at Cabinet Ministers, doing whatever the hell we can to halt the demise of our NHS. I hope we can. I hope we will. I know it’ll take a lot more than a bit of satirical radio.
Thursday, 17 January 2013
I’m not a girly girl. I’m not a girl at all, actually; in a few weeks I’ll turn an age that gives me a far more up-close-and-personal view of 50 than I ever imagined I’d get. Not because of the whole Crohn’s, lots of surgeries, given 2 years to live in 1988 thing, but more because when you’re young you can never imagine being any age other than one a few years ahead of the one you are at the time.
When my mother was the age I’m about to be, she became a grandmother to my son. Fortunately – as far as I know, at least – that’s unlikely to happen to me. Although, given that I’ve got 12 months of being that age to go, I probably shouldn’t make such predictions. I do have a healthy, intelligent, ambitious 20 year old son, and accidents can happen, as we all know. But I’m gonna’ assume not. The thing is, I thought my mother was at a perfectly appropriate age to be a grandmother when I turned her into one. Now I’m about to get that close to 50 myself, it doesn’t seem anything like old enough. None of which is my point, really.
My point is about being girly. I’m not sure what other word I can use – feminine doesn’t cover it; I’m definitely feminine. And feminist. And female. For many years, I was a girl, but I have never been girly. To me, being girly is not an age thing; I’ve met women in their 90s who are fantastically, gorgeously girly; it’s about make-up and clothes and … prettifying. Maybe that’s it – I’ve never really been a prettifier. A girly prettifier.
I usually wear lipstick if I’m going to leave the house, but not always. I sometimes just forget. In the same way that I forget to put on earrings or my watch. I’m a bit of a twat like that. I like to wear nail varnish too, but that’s become an almighty faff out of all proportion to the pleasure I get from seeing funky coloured nails on the end of my fingers, of which more later. Sometimes, when I’m going on a night out somewhere nice – fancy, or celebratory, perhaps - or if I just feel like going that extra few centimetres, I might put on a bit of mascara; at a push I’ll draw a line on each eyelid with a coloured pencil designed for just such a purpose, but that really is pushing the boat out for me. It’s as far as I feel capable of going. Show me face powder, foundation, blusher or any of those other things people put on their faces, and I’m at a loss. I feel like I don’t have enough face to fit them all on, even if I knew how to apply them and where exactly they’re supposed to go.
I’ve always been like that, except for a couple of years during my teens when I flirted with being a New Romantic. Back then, however, I went to the Blitz club in the West End, so ‘normal’ make-up wasn’t what I wore. My best friend and partner in sneaking into clubs at 15 and underage drinking crime, taught me what to do, and what we did was wear a lot of white panstick that made our teeth look green in anything but low, dark, club lighting, and a lot of black around the eyes. It wasn’t really a lesson for the future, but it was fun at the time.
Don’t get me wrong; in my head, I’d quite like to be girly. I’d like to be the kind of woman who wears heels all day, has well-groomed, tv commercial-worthy hair, looks stylish in whatever she wears, whether it’s jeans, leggings or a Prada suit. *Pauses to get back onto bed after falling off laughing at the idea of ever owning a Prada suit* and has permanently perfectly waxed pins. I’d like to be all those things if it took no effort, and didn’t make your calves ache like they’ve been stretched on a medieval rack for seventeen days. But frankly, I can’t really understand how anyone can be arsed. Even if they don’t have the obstacles I do.
My Jewish heritage has blessed me with extra hair where I’d rather there was none, whilst years of taking steroids every day, has left me with lank, thin hair where my thick, glossy mane should be. As my pubic forest creeps further down my thighs, on a journey that I’m convinced will only end when it reaches my ankles, and the hair that should be on my head finds it prefers life on my pillow, all I’m left with is an awareness of the cruelty of irony that I could’ve guessed at without such blatant evidence, thanks anyway.
But back to the nail varnish. I’ve always felt I had that sussed. Despite my suppressed immune system, multiple surgeries and all the joys that chronic disease has to offer, my nails have always been healthy and strong. They grow fast and don’t split or break all that easily, so painting them has been a pleasure and a small joy of girliness in my otherwise mostly girliless existence. What I’ve always done is put nail varnish on late at night - after I’ve eaten and taken my full complement of codeine, meaning I have a couple of hours before needing the toilet again - and letting them dry as I watch telly/read/eat chocolate that doesn’t need unwrapping. Oddly, I’d hardly painted them much in the last couple of years, since having the bag. But I started again recently. Only to find another piece of my teeny tiny girly armoury is under threat.
I changed my bag a few weeks ago, a day or so after using a nail polish make I’d not used before. It wasn’t a cheap one either – well, it was in that I got it free with a magazine. It was the only reason I bought the magazine. But it was an expensive make; too expensive for me to buy, if I’m honest. It was a great colour; a kind of petrol bluey green. I loved it. I loved how my nails looked when I had it on –like a smaller, chubbier version of the hands of a well-groomed woman. A stylishly dressed woman. The kind of woman I’m not. It amused me that the hands of such a woman were about to get busy ripping off my bag of poo and replacing it with a clean, fresh, empty bag that would then fill with more poo.
I did the first bit – pulled off the old bag, set about cleaning my stoma and the surrounding area in preparation for the new bag, and noticed a couple of flecks of petrol bluey green on my stoma. It’s odd when you need to wipe things off your stoma – it has no nerve endings, so you can’t feel anything. You could really damage it and not know, if you weren’t careful. If you were an idiot. I picked off the bits, realising that as I did it, more little chips were appearing everywhere – in the sink, on the wipes, mixed in with the powder when I applied it; the powder that protects my skin and stops it getting red and raw and sore. I wasn’t sure tiny dots of nail varnish would contribute to that job. Manically, I wiped them from everywhere they appeared, or tried to. In the end I gave up, reasoning that if my stoma was going to be surrounded by poo, flakes of nail varnish weren’t really going to do that much harm, but it wasn’t nice. It was icky. Though it made me laugh when I saw them floating around in my bag later, giving my poo a whole new look. A kind of girly look, if you will.
I put nail varnish on again a few days ago – not the crappy, chippety, expensive free one, this time; an old, dependable, purpley one. But even that wasn’t to be. As soon as I’d applied it and settled down, I felt an itch under my bag. An itch can mean a leak is imminent. Obviously, a leak means a lot of mess - nasty, pooey, wholly unpleasant mess - if not caught in time. The itch can be seen as a warning and is ignored at your peril. In this case, I wasn’t going to get caught out, but I reckoned I had a few minutes. Enough time, certainly, to take off my perfectly applied, reliable, long-lasting, lovely, still-wet nail varnish so that I wouldn’t hamper the necessary bag change with smears of purple and horribly smudged, possibly poo-stained (who knows what happens when poo mixes with wet nail varnish? Not an experiment I’m about to embark on. If you want to do it, be my guest; let me know the outcome) nails. With a heavy heart, I removed the lot, then hurried to the bathroom to check just how urgent my bag change would be. Not urgent at all, as it turned out. Whilst an itch under the bag can often mean a leak is just moments away, it can also mean nothing. Absolutely nada. Sometimes an itch is just an itch.
So, how girly am I? Let me count the ways – lipstick, the occasional bit of eye make-uppy stuff, nail varnish if I ever dare again, and I think that’s it…
Oh wait, I’m forgetting something. Girly women love bags. They collect them, crave new ones, store them carefully. Well, I’ve got that one covered. I get a box of 30 every couple of weeks - new, not second hand. And let’s not even consider what vintage would mean… They’re not Gucci or Mulberry, but then I’m not that kind of person. If I could afford a bag that cost a couple of grand, I’d be more likely to buy a double oven and an American style fridge. Those are the kind of purchases I can get excited over.
I should point out that there are lots of women out there with ileostomies and colostomies, who look girlier than a Disney princess. They look gorgeous and pretty and perfect; I have no idea how they do it, and they have my unending respect. But I’m happy for it to remain a mystery to me; I’ve long since come to terms with not being girly. My bag’s just given me another excuse.