Another Fine Mess

 

It’s been an embarrassment of months since I last blogged. The truth is, the longer I live with a bag, the less I notice it, think about it, remember how very different it is to be pooing from a bit of intestine that hangs from my belly, instead of through the hole my butt used to have. The hole most people’s butts have. I apologise for over using the word ‘butt’, not for the frequency, but for the Americanism. As a Brit I should be ashamed, but I’m long past shame and discomfiture (there’s a British word for you). At least, I thought I was.

I’ve taken a while to write this down, for reasons that will become obvious. I used to post hugely intimate blogs once a week, but having got out of  that habit, I find myself suffering from the aforementioned discomfiture at the mere thought. But here goes:

Just before Christmas, I was taken to the theatre by a very lovely person. I know this person from Twitter and though I absolutely consider her to be a friend, we haven’t actually met more than a handful of times due to our living many miles apart. On this day, she had to be in London, she offered to take me to the theatre, and in the spirit of fairness, I forced her to let me take her for lunch first. The lunch gave us a chance to catch up and when she pointed out that I rarely wrote my blog these days, I said that I didn’t really have anything new to say about living with a bag. That I felt I’d said it all, and that it was there to hopefully be accessed by anyone who needed it. That I was lucky that I’d never had a leak anywhere that was difficult, and that I’d just had a scary five minutes on the tube when it got stuck in a tunnel and I’d feared my worst nightmare was about to come true. We laughed. We finished lunch. We went next door to the theatre.

Usually, my food goes through me and out into my bag very fast. I had plenty of time to empty it before the play began, and that was my plan. My body’s plan, as it turned out, was quite different, and my bag remained stubbornly empty right up to and beyond the curtain rising. All the way through the first half, I was vaguely conscious of my bag, noticing when it finally started filling, not worrying too much as I was watching and enjoying the play. And being out with a friend. And appearing normal.

At the interval, my friend went to the bar as I moved unusually fast in order to be the first to the ladies’. In a tiny cubicle, I checked my bag and saw that it was creeping towards leaking. A small amount of output – which is the euphemistic term we ostomates use for poo. Ostomates is the euphemistic term we use for people who poo into bags – was forming a line at the edge of the flange which surrounds the bag itself. In time, this would be followed by more output. More poo. Which would eventually build up into an uncontainable amount and lo, I would be at leak point. Fortunately, I had a fix-up; a strip of latexy stuff that I could put around it and thus increase the area of the flange, which would hopefully hold until the play ended and I left the theatre and got onto and off of the tube. But wait, I thought to myself. I’ve never changed a bag in a public place. I should do that now. I’ve had my bag for more than four years, I’m a veritable veteran; this should be a piece of cake. But not here, not in this tiny cubicle with no sink and barely room for my legs, while an ocean of ladies wanting to pee huff and tut outside the door. So I left that loo, washed my hands, and found someone who worked at the theatre to tell me where the disabled loo was.

‘We don’t have a disabled toilet.’ He smiled. And that should have been it. I should have left it there and maybe done some digging later about the legality of a huge theatre with no disabled toilet. But I had made a decision. And I am an idiot.

‘I need space,’ I said. ‘a good sized cubicle with a sink in it.’

‘We have an access toilet,’ he said. ‘Two floors down (we were in the circle), but it doesn’t have a sink.’

The interval was coming to an end, but I was on a mission now.  I legged it down to the ‘access toilet’, which was indeed large, and ripped off my bag before realising that my kit – my emergency kit of spare bags and minimal accessories – had been packed four years earlier and not so much as looked at since. I didn’t have any of the accessories I now use – no powder, no mouldable ring to ensure a proper seal around the base of my stoma, not even the kind of bags I now use – but I was standing there, bagless, my stoma unfettered, and I had no choice. Ancient bag duly stuck on, I  headed back into the theatre, feeling not entirely secure. My friend was already seated, complete with drinks for both of us, and I tried not to feel too embarrassed about disturbing the rest of the row two minutes into the second half. A quick whispered assurance that I was ok probably didn’t bother anyone, and we settled down to find out whether Prince William was going to try to usurp his father. 

I spent the second half a little less engrossed than the first, which is by no means a review of what we were watching, but rather a sign of my complete neurosis. Like an old perv in a XXX cinema, I sat with my hands up my own dress, groping around both sides of the bag, hoping like hell I would feel nothing. And for a while I didn’t. I was fine. I’d got away with it. Only I hadn’t, of course. 5 minutes before the end of the play, I felt a gushing from either side of the bag. As I stood up, my friend asked if she could do anything – she’s a doctor; if anything had needed doing, there would be no better person to do it, but this was down to me. I annoyed everybody in our row one more time, apologising, holding my dress away from my body to avoid it getting wet and all but running as I pushed past the female theatre usher sat cross legged on the floor by the door.

I raced back down to the larger loo, noticing, this time, that I was passing a huge landing lavished with two sumptuous sofas – hello, big West End Theatre, you have no disabled toilet; maybe one less sofa?  Having the presence of mind, on this second occasion, to grab a handful of paper towels as I headed for the cubicle, the first thing I did once in there was rip off most of my clothes in an attempt to keep them from getting icky (a euphemism for ‘covered in poo’). It was horrible. Mortifying. I stood there, shaking, hanging over the loo while my stoma spewed for what felt like days, but was really less than a minute. I’d brought a small, stylish handbag with me that day, rather than the big sack-like thing I usually carry. A sack-like thing that has clean clothes, dry wipes and a spray can of water in it. I took off everything that had got pooey, wrapped it in a plastic bag and threw it away. I put another bag on, and ran out to the sink to clean up, wearing just my tights and a bra, hoping like hell nobody would come in and find me there. Back in the cubicle, I toyed with ringing Husband, but knew that speaking to anyone at that point would just make me cry, so I put all the stain free clothes back on and took a deep breath. I shook for a while longer, then gathered up my things and found I’d missed the end of the play. People were leaving. And then, like an unexpected cheque the day before your tax is due, there stood my friend, holding my coat and scarf, smiling. We were on the landing with the huge sofas, and we sat on one of them. (They don’t need two; they really don’t.)

When I’d sat at lunch saying how I’d never had a leak in an inappropriate place, I might as well have stuck a fork in my bag there and then. My friend had a different view on it.  I couldn’t have been with a better person during that experience – perhaps because she’s a doctor, but probably just because she’s her - her combination of compassion and lack of hysteria was exactly what was required. She pointed out that my worst nightmare had just happened and here I was, looking fine, complete with fresh bag, and it was ok. I was ok. Nobody was pointing and laughing. Nobody but the two of us knew what had happened.

She was right, of course, I knew that even at the time. It’s taken me a while to actually get there is all.

Incidentally, I have googled like an obsessive, but I can’t find any answer to the legality of having – or not having – a disabled toilet in a major West End theatre.

Don't Feed Us This Crap

Yesterday morning, Dr Sally Mitton, a gastroenterologist at a London hospital, said on BBC Breakfast that Crohn’s Disease is caused by eating junk food and being over prescribed anti-biotics. This understandably made a lot of people angry. Namely, those of us who have Crohn’s Disease, yet did not grow up eating burgers and washing down anti-biotics with diet Coke for dessert, followed by a doughnut chaser. Everyone I have ever known or spoken to with Crohn’s Disease, in fact. Certainly, the very very many of us who took to Twitter to decry this nonsensical, offensive theory, and to ask BBC Breakfast to apologise. (I didn’t ask them that, but several people did.)

Having had Crohn’s since I was about 4 – when I was diagnosed at 19, I was told that the advanced state of my disease meant I had had it for at least 15 years – there was little time for me to have downed anywhere near enough junk food, or ill-prescribed antibiotics to cause such a terrible disease. I prefer the general understanding in the medical community, which is that it is a genetic disease. Factually, it is an autoimmune disease, which basically means the body attacks itself. I know Kentucky Fried Chicken can be seen as evil, but I don’t accept it has that kind of power.  As for the others – McDonalds and the like – they weren’t around yet, so we can’t blame them at all.

In the many years that I’ve had Crohn’s I’ve seen a few theories come and go – toothpaste was one. I do brush my teeth, so I wondered about that for a while; I even used a toothpaste from the health food shop for a week or two, but it tasted disgusting and I wasn’t convinced it was cleaning anything, plus I already had Crohn’s, so the whole exercise seemed a tad pointless. Another one was cornflakes. I hate cornflakes. I hated them as a child, I hated them as a teenager and I still don’t like them – not even covered in chocolate and stuck together in a gooey lump. So cornflakes didn’t cause my Crohn’s. Add to that the cures that show up every now and again – milk thistle, quinoa, most recently tree bark, though there’s only the word of one woman for that, and she’s not telling what the tree was. In the way of the truly altruistic, she will only tell Big Pharma, and then only for a considerable sum of money. Bless her. They’re all bollocks, of course. There is no known cure for Crohn’s and no known cause.  This is what research is for. This is why those of us with it want to raise awareness.

People don’t talk about Crohn’s, because it involves talking about poo. It’s not sexy, it’s not polite, and it’s not dinner table conversation. Those of us who have it would love people to be discussing it, wondering about it, forcing more money to be put into researching and preventing it. Curing it would be great, too, but one fantasy at a time.

I missed most of the drama yesterday, because for me, yesterday was one of my good days. In more than three months of a horrible flare, yesterday was a day when I got up and went out.  I went into town with my son, and we wandered around shops, ate lunch in Covent Garden – mussels, not junk food; I’m not sure I could’ve found junk food in Covent Garden, had I wanted to, which I didn’t because I don’t eat junk food, and yet I have Crohn’s; go figure.  I had a delightful, normal day, and when I came home, I felt like crap. And then I opened my laptop and saw a couple of comments and questions about Dr Sally Mitton. So I googled and I watched the BBC Breakfast package, gobsmacked, and then I went on Twitter and got angry and saw that Carrie Grant, she of the lovely singing voice and fabulous hair, who also has Crohn’s, had written a brilliant letter to Dr Mitton, very politely suggesting she should have had media training before going on television, and graciously assuming that she hadn’t meant for her interview to leave the nation’s press with this nugget of misinformation – a theory at best, with no proof offered – which all but blamed some 250,000 people in the UK for causing their own debilitating, sometimes fatal disease.  You can see it on her timeline on Twitter.

Never mind that David Barker, CEO of Crohns and Colitis UK was on the same broadcast to talk about the very real problem of fatigue in Crohn’s and Colitis patients. That wasn’t interesting enough for the BBC, or indeed the Telegraph, whose science correspondent came up with this yesterday afternoon. Check out the first paragraph; looks like a statement of fact to me. It isn’t, of course. It’s a parroting of what Dr Sally Mitton – and nobody else that I have heard, ever – said.

Today, The Daily Mail (unsurprisingly) and The Times are running similar pieces, with screamy headlines claiming the junk food theory as fact. The Independent ran the story too, but they had the decency to put the theory in quotes.

I tend not to shout  too much about Crohn’s. For me, it has led to my ileostomy, and raising awareness of that seems more urgent in my world.  To normalise the fact that some of us, as a result of various diseases or medical needs, have a bit of our intestine hanging out of our stomach, over which we stick a bag, into which we poo.  That whole running to the loo up to 30 times a day in screaming agony thing is in the past for me. I still get the pain, but I don’t have to run to the loo with it. Except when my bag needs emptying. Other than that, I can howl with pain wherever the hell I want. But I do still have Crohn’s, and it does impact my life, and those of my family and friends, on a daily basis. I haven’t been cured by having a bag, but I have definitely had my life made easier.

And then a thing like this happens.  A doctor says a stupid thing that she probably didn’t explain properly, or her speech got cut to make it look like it was the only thing she said, but whatever the reason, the result is a whole load of backward steps for Crohn’s information and for those of us who have it. A Twitter pal from the US told me the story was even making news over there – that’s how powerful the media is. That’s how irresponsible it is to present a theory as though it is a fact, whether you mean to or not.

You don’t have to be a doctor to spout a meaningless theory of course; over the years I have had ‘friends’ whisper that I have Crohn’s because I am a) Jewish and b) was brought up in a house that was too clean, so I wasn’t exposed to enough dirt. These ‘friends’ didn’t know me when I was a child, but I can promise them my parents weren’t the insane, bleaching everything that stayed still kind. I ate dirt in the garden just like every other kid born in the ‘60s. But people still have these ideas, and someone put them there.

Dr Mitton’s interview lasted but a few minutes, the repercussions of it are now on to their second day. Before long, it will be another stupid thing people think.http://www.telegraph.co.uk/news/science/science-news/10908884/Crohns-disease-in-teens-jumps-300-per-cent-in-10-years-fuelled-by-junk-food.html

Gut Reaction

 

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.

Bagrophobia?

 

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:

@chiller - How to survive being wrong on the internet

@melissa_fix - Privileged Problems

@PME2013 - Criticism: Telling People Off on Twitter 

A Matter of Trust

 

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.

An Itch In Time

 

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.

Carry On Up The Pain Clinic

 

I am now on day 3 of not having a flare-up any more, and it’s really rather fantastic. I’m tired, of course – not because of the evil Crohn’s malaise, but because I spent the last 2 days doing ‘normal’ things. I went to the supermarket and was mildly irritated by Christmas songs, I filled a prescription myself – well, the pharmacist did that obviously, but I took it to the chemist, which I hadn’t done in a while – met an old pal         on my way there, stopped and chatted with her, for all the world like an ordinary person who’d never been sicker than having a cold. The next day was my 21^st anniversary – we might not have lasted that long, but when you’re sick and you find someone who’ll put up with you, and even look after you during all the bad times, I figure you should stop looking. Plus, my husband is someone I still find funny, whose company I still enjoy, and is the owner of the face I look at every morning in wonder that I don’t hate him after all these years.  Something to celebrate, I’m sure you’ll agree. I did also have a friend visiting from a foreign land and that lunchtime was the only time I could see her, so I went out for lunch with her and another friend, and then came home, where husband and I caught up on episodes of The Killing, which seems to me a pretty damned great way to celebrate an anniversary, and then went out for tapas. It’s no wonder I’m a bit knackered after all that. The good thing is I’m not in pain. Well, not in proper pain. To be honest, there’s always an underlying, cope-withable level of pain knocking around my abdominal area, but that’s just how it is. The real pain, the pain of the flare-up, the pain that feels like hot molten lava is being poured into your gut through a gaping hole that you can’t quite find, but can feel is most definitely there – that pain is absent. Gone. I am well. My version of well. And it’s great.

I do have to accept, however, that there may be a next time, and for that I need to be prepared.  I need to be ready to hit that pain head on if and when it returns.  And if it weren’t for the tyranny of the pain clinic, and the over-management of the NHS, that wouldn’t be a problem.  It never used to be a problem. 

When I was having surgeries in the ‘80s, pain relief was a simple thing, managed and dealt with on the ward, by the doctors and surgeons who were in charge of your care. In my case, I would get a Pethidine shot every four hours. This was in the days before the pump had been invented, when there was no PCA (patient controlled analgesia), so I did end up with a rather bruised backside, but it was worth it for the pain relief.  And if that pain relief wasn’t working, a nurse would speak to a doctor and you would be written up for a higher dose. Simple. Towards the end of the ‘80s, the pump came along and the trend at that time was to fill it with a drug called Omnopon, which was a combination of Morphine and Codeine and some other stuff that I don’t recall, but it worked.

I then had a somewhat miraculous gap of 20 years between surgeries.  The Crohn’s didn’t go away, of course – no, it and its gang of complications tried all kinds of ways of fighting with me for control of my body, but none of these necessitated surgery. I did go into hospital a few times, but I always escaped uncut.  Eventually, the disease got angrier, I got less good at fighting it and by the time I was crawling to the loo 30 times a day, hoping desperately I’d make it in time, I had no choice but to make the whole baglady decision. Which put me back in hospital, back in surgery, and back into the clutches of controlled pain relief.

For the four years preceding that first operation – the ileostomy – I’d been in such bad pain that I’d been taking oral Pethidine, as prescribed by my GP, with the full knowledge of the hospital whose care I was under.  I took 100mg three times a day, which is apparently a lot, but then I was in a lot of pain.  Given my previous experience, I expected to be given the same pain relief after my surgery. But I had reckoned without the Pain Team.  In hospital, the Pain Team are quite good. I was impressed with them. They gave me Morphine by PCA at first, and a pain doctor would come and check on how it was working at least once a day. If I said it wasn’t working too well, they upped the dosage, not demanding any proof, or having any long discussion. Just upped it. After a couple of days the Morphine made me feel so sick that I just stopped clicking the button that delivered it. I hate being in pain, but I hate feeling sick more. So they took me off the Morphine and gave me various other pills and potions that I didn’t pay much attention to, hence I can’t name them here. And the routine remained the same – if I said it wasn’t working, they happily gave me more. I liked the Pain Team. It seemed like a good thing that had happened since my previous surgeries.  When I went in for the second operation a year later, the whole routine was the same - more than adequate post-op pain relief, kind Pain Team doctors, and then I went home, got over the surgery and everything was great. Until May of this year, when I had my first flare up.

I’ve spoken of this before, so I won’t bore you with details, but suffice to say it was painful. Person with metal spikes sticking out of him, running around the little gut I have left shooting poison-laden darts into every millimetre of intestine and then jumping up and down on those bits of intestine wearing burning shoes of diamond sharp blades kind of painful. I needed serious analgesia. Only my GP had the PCT looking over her shoulder and was quite rightly reluctant to prescribe Pethidine for me  - a patient already on daily high doses of codeine - without a directive from the hospital. So she made an appointment for me with the Pain Clinic. This was in May. The pain stopped in early June, having been managed with Pethidine prescribed by my GI Consultant. The Pain Clinic appointment came through for September.

I thought it was best to go to the Pain Clinic anyway, so my GP could get a letter from them saying what medication to give me if I had another flare up. The woman I saw, a nurse practitioner, was very impressive. I told her about my problems with Morphine, she told me she was concerned about the side effects of Pethidine, which we discussed; I’d never had any of them. She told me I should try a different opiate and she would work out the dose as compared with my Pethidine dose and send my GP a letter to that effect.  She also told me about Gabapentin.  Gabapentin is a neuropathic drug that is generally given to epilepsy patients but that has been found to work well in long-term pain. I pointed out that flare-ups were finite and therefore so was the associated pain, and she said that she would advise an opiate for the first 3 weeks, moving on to Gabapentin afterwards. Gabapentin takes 3 weeks to kick in, and you have to take it constantly. Forever. It couldn’t be less appropriate for a flare-up, but it was clearly the drug du jour in the Pain Clinic and I left without really having sorted that element of things out. But I didn’t mind; my GP would get the letter, and I would get the right pain relief.

Six weeks later, the evil pain monster was back. Another flare-up. I called my GP, asking her to give me whatever opiate the Pain Clinic had advised in their letter. Only there was no letter. It had never been sent.  My GP and two of her receptionists spent four days trying to get in touch with the nurse practitioner I had seen, finally getting a letter faxed from her, which said I should be having Morphine. 5mg. Completely the wrong dose. And Morphine. Which makes me feel sick. Which I’d told the nurse practitioner I couldn’t and wouldn’t and really didn’t want to take.  But by then, I was exhausted; I didn’t want to feel my GP and her staff were spending their precious time chasing up a woman who clearly had paid me no attention. And I did have some Pethidine left from the last flare-up, so I used some of that, the occasional dose of Morphine and mostly tried not to howl in pain. It was the least fun flare-up I’ve ever had.

Last week, I went to see my GI Consultant; he’s lovely and I can talk to him honestly and openly. He was not impressed with the Pain Clinic and after a long discussion, he and I came to the conclusion that trying other opiates, not knowing how I’d react to them, seemed rather silly, considering we knew that Pethidine works for me, I have no side-effects from it, and I can come off it easily.  He asked what my GP would need to prescribe it for me if I was to have another flare-up. I said she needed a letter from the hospital and he pointed out that he could write one of those. That he would, in fact, write it that very day, although given all the cuts in staff, it might be a couple of weeks before a secretary found the time to type it up.  Which was fine. I was happy. Next time I have a flare-up, with no thanks to the Pain Clinic, I will be prescribed Pethidine again. Hooray.

On Monday of this week, I saw my GP and told her the news. It’s all going to be fine; my Consultant, who has been looking after me and my disease for more than 11 years, will write her a letter saying she should prescribe me Pethidine when I’m in pain. She said that was all well and good, and she hoped it would be enough, but actually what the PCT would require was a letter to that effect from – you guessed it – the Pain Clinic. Who don’t know me, who didn’t listen to me, and who think I should be permanently taking a neuropathic drug if my flare-up lasts longer than three weeks.  The PCT will take more notice of a letter from them than they will from my Consultant who has known me well for more than 11 years.

I love the NHS, but I do wish they’d support their front line staff – the doctors and the nurses – properly, instead of spending fortunes on managers who know nothing about medicine. Managers who cut secretaries and receptionists, leaving nurses to answer phones and find patients’ notes. Who make Pain Clinics the arbiter of what drugs patients of whom they have little or no knowledge should be taking.

I will get it sorted. I will find a way to make sure I get the right pain relief if and when I should need it again. But I really wish I didn’t have to keep chasing this nonsense up when I’m feeling well. I’d be far happier going to the supermarket and sneering at their festive tunes.