Thursday, 30 August 2012

The Drugs Don't Work

It had been half a year since my proctectomy, and still my healing and recovery dragged ever onward with neither improvement nor deterioration.  With every day the same routine of waking up, trying to find the energy and enthusiasm to shower, getting back into bed, watching telly, reading, faffing about on Facebook and, later, Twitter, and every four hours, taking 100mg of pethidine.  Pethidine (or Demerol in the US) is an opioid - the first synthetic one ever developed, in fact -which was used a lot when I was first having operations in the mid/late 80s, but is now rarely given as pain relief in hospitals.  It’s still my go-to drug when I’m in pain though; together with anti-emetics to stop me throwing up, it’s the one I like the best.  I find morphine makes me feel too nauseated and nobody’s ever offered me heroin.  Well, nobody with medical qualifications, anyway.  I’ve been on pethidine for pain many, many times over the years, and it’s never caused me any problems that I’ve been aware of.  When I asked my pharmacist uncle why it wasn’t used so much any more he said it was known as ‘The Midwives’ Drug’ and seen as something not to be used by ‘serious’ doctors.  In hospital, the doctors on the pain team were horrified to find I’d been taking it – they said it was a nasty drug, one that they didn’t use any more, but they didn’t manage to tell me why.  I kept pushing to find out, but an urgent bleep meant the doc I was asking had to go before he could give me a satisfactory answer.  I still think it was one of those ‘mate bleeps’; you know, the way you ask a friend to text you while you’re on a first date, and if it’s going badly you can claim an emergency and get the hell out.  I think that pain doc texted one of his medical pals ‘999’ or similar, got the bleep a few moments later, and managed to leg it without actually telling me why he wouldn’t use pethidine any more.  I wouldn’t recommend anybody go on a date with him; he uses the ‘mate bleep’ method and doesn’t give a straight answer to questions.  Not that any of it matters; I was quite happy on my pethidine. 

Unfortunately, not everybody else was so happy with my being on it.  To be honest with you, I’m not sure it was working any longer. I’d taken it for four and a half years before and after the ileostomy surgery, and had come off it with relative ease, but a body does develop a tolerance; a resistance to the stronger effects of a drug taken long-term, and I think mine was probably starting to do that.  I’d gone back on it after coming out of hospital after the proctectomy and by now I’d been on it for 6 months. 6 months of recovery with not much to show for it is booooring.  It’s endless and tedious and you want to escape it somehow; to take your brain elsewhere.  The constant pain of the wound that refuses to heal, the fact that you don’t find the term Barbie Butt funny any more … there has to be somewhere else to go inside your head and pethidine takes you there.  But I’m not sure it was really helping the pain any longer, and though I wasn’t about to admit that to anybody, it seemed my medical team were of one mind across the board.  My GP said it was enough now – she wanted to talk to the surgeon about my still being on such a heavy drug; the surgeon agreed with her that it was enough, and that I should stop taking it; the pain team didn’t have an appointment for me for another 6 months, so their input was non-existent, but it looked like I was coming to the end of my pethidine haze days.  My supply was about to be cut off, and short of hitting the streets and looking for a new purveyor of opiods – which wasn’t really possible for a person who found leaving the
bedroom a major source of pain and exhaustion – it looked like the diagnosis of ‘enough’ was going to stick. 

I’m lucky in that I’m not an addictive type of person.  I smoked cigarettes for years, then stopped fairly easily and without the use of self-help books.  In my youth, I experimented with any drug that was offered, and I do consider myself blessed not to have hung out with a crowd where heroin was one of those drugs.  I’m told I spent 2 days in a wardrobe once, after accidentally running away from home with my best friend to live in a bedsit in Balham with two drug dealers, whose produce I indulged in heavily.  The drug of choice for them – and by extension, me – was a form of speed known as ‘blues’, and if you’re old enough to remember them, and to have mixed in circles where people took them, you’ll understand when I say I have no recollection of that happening, and no reason to disbelieve those who tell me it did.  The point being that once I was out of the wardrobe and had been hauled off home by a particularly zealous police officer (the two things having nothing to do with each other, I might add – I didn’t grass up the drug dealers), I had no issues with not taking the little blue pills any more.

It’s not like I’d have any real trouble coming off the pethidine.  History told me I wasn’t going to suffer any withdrawals or addiction issues.  I just didn’t want to stop taking it; I didn’t want to have to deal with the endless drudgery of recovering from surgery without any extra help.  I didn’t want to, didn’t want to, didn’t want to.  I wanted to stamp my feet and shout and scream like a spoiled toddler until everybody backed down and said I could keep taking them until I was ready to stop. But I’m not a toddler, I’m a grown woman with a very good view of turning 50 and a relationship with my medical team that I cherish, so giving in to the over-indulged-brat within wasn’t really an option.  I was given my last box of 50 tablets and told to eke it out.

I found that if I didn’t take it for a couple of days, it worked better when I did take it again. More like it had in the early days.  So I did that for a while; I spaced it out, promising it to myself like a kind of reward. I had no physical withdrawal symptoms of any kind, it was all psychological stuff and I like to think I can get on top of that easily.  I also wanted to have a few left in case of any pain that might show up later, when this bit was over.  I started getting up now and again; getting dressed, going downstairs.  As well as coming off the pethidine, I decided to try to come off the being ill and in bed thing a bit as well.  I realised the pain had actually improved and now that I wasn’t going to be asking for more pethidine prescriptions, my brain was allowing me to notice that.  So, yes, it was a good thing they did, making me stop taking them, and while doctors don’t always know best, in this instance they absolutely did.  Bah! 

Then one day, after seeing the GP, and letting her look at my butt wound to confirm it still hadn’t healed, husband and I went and had a coffee in a local café.  A café where we’d had many ‘big’ moments – we’d waited there for two home moves to be confirmed; we’d gone there after we’d found I was pregnant with teen; we’d gone there regularly with teen from the moment he was born. It seemed like the right place to go.  And it was fine.  I was on the mend.

One last thing though; I feel I may be being a bit disingenuous with all my claims of being a non-addictive personality.  Since 1985 I’ve been taking codeine, not as a painkiller, but to regulate my bowel.  If I didn’t take it – and I take a lot of it, by normal standards – I’d be a constant pooing machine. That was true before my bag, and it’s still true now, with it.  Without codeine, I might as well move into the bathroom and set up my bed, telly and computer in there.  Or just move the toilet into my bedroom, whichever would be the most efficient option.  Codeine is also an opiate, and one time, many years ago, when I was having a colonoscopy, I stopped taking it for 24 hours to ensure my bowel was completely empty for the procedure.  That night, I woke feeling like a lunatic.  My hair was itching, my body was twitching, and I had an extraordinary urge to rip my own head off.  Fortunately, I’m not physically capable of such a thing, or I would surely have done it.  I didn’t take a moment to seriously consider what might be causing such madness, assuming only that I really didn’t want to have yet another colonoscopy.  They hurt when you have active Crohn’s, and I’d had hundreds of them (at least, that’s what it felt like). That night went on for too many hours, and in the morning I pootled off to have my colonoscopy, sighing with relief as the doctor put an iv in my hand and midazolam flowed through my veins. 

It was only when I was back at home, lying in my bed, and reaching for my codeine bottle that it all came together.  That I realised I am actually addicted to something, and it’s codeine.  I was worried for a moment; film stars are in rehab for less, but then I talked it over with my GP and we realised it didn’t matter.  It’s not like I can ever stop taking codeine, so being addicted to it isn’t the problem for me that it would be for, say, Robert Downey Junior. (I’m just using him as an example, no need to sue me or anything.)

So, maybe I am an addictive personality, if I take something for more than 20 years, but otherwise it’s not exactly a problem.  And if you need proof of that, you just have to look in the drawer next to my side of the bed.  There’s still half a box of pethidine in there - and it’s not in a shrine, or a locked box or anything; it’s just there.  In case there’s more pain.

Thursday, 23 August 2012

Pain In The Butt

Once I’d established I was one of the 27% of Crohn’s patients who have their anuses sewn up and take ages to heal, you’d think I’d have let it go at that.  And maybe I would have, if the healing had followed the traditional pattern one expects such things to follow – ie gradual improvement. Even if this improvement came in the smallest of massively spaced out increments, I’d have been happy. I’d have kept swallowing the pethidine on a three times a day basis, but I’d have been aware, at least, that things were on the mend.  Getting better.  I’d have believed that some day this would all be over and my Barbie Butt would be the complete, sealed, happy and non-bothery thing I’d been expecting it to be all along.  The surgeon did warn me about the 27%.  He even pointed out that things often went wrong for me, and that I would probably be one of them, but I never believed him.  Looking back, I realise I never do believe the worst will happen, not right up until the moment that it does.  Probably later, actually; at the moment it happens, I usually assume it’s something else, something lesser; only when there is unequivocal evidence, over a protracted period, that the worst has actually already happened, do I start to accept that perhaps it has.  As I’ve said before, my glass is a strange kind of thing that persists in trying to convince me it is half full, no matter how much evidence there is to the contrary. 

Which is why it took me a long while to accept that the pain in my butt wound was getting worse.  It was bleeding a lot, it was weeping copiously, and it hurt.  Wow, it hurt.  The pain was extraordinary.  When I was a small child, I sat on a cactus whilst wearing a bikini, which was extraordinarily painful; I remember lying on a sunbed in the back garden as my mother pulled the spikes out of bum, one at a time, and to add insult to that injury, I remember the mortification I felt as she chatted to the man next door over the garden fence while she extracted said spikes.  This pain was worse than all of that.  It was constant, for a start, and while the pressure cushion helped, I still felt like I was sitting on a bed of burning rusty nails that took it in turns to adjust themselves, each one sticking further into my sewn up anus than the last. Like there were tiny evil nymphs running around between those burning, rusty nails, swivelling and pulling them into bent and twisted positions as they penetrated my poor, sad, battered wound, drawing yet more blood and nasty serous fluid to the surface.  I tried to ignore it, but it only got worse. Each day, I woke up earlier, and in more pain, and finally it occurred to me that I should see the surgeon. And not just for a regular check-up as I was supposed to, but sooner, specifically to tell him just how bad it was.

And so I found myself sitting next to husband, opposite my surgeon, perched on the edge of the chair on just one buttock (I’d left the pressure cushion in the car), wincing as I told him I thought the pain might be a little bit worse than it was meant to be by now.  He agreed that even if the wound wasn’t going to heal for ages, if at all (If at all??? I wasn’t even going to think about that), it should have stopped hurting by now.  He smiled his warm, reassuring smile as he said, ‘Let’s take a look.’ Without  really thinking, I got up from the edge of the chair and went to the examination bed/table thing as he pulled the curtain around me, leaving husband sitting on the other side.

There are many indignities one has to suffer with Inflammatory Bowel Diseases, but having my anus sewn up meant a few of them were no longer applicable.  No more colonoscopies, for a start.  If I’d kept my rectum and functioning anus, I’d have had to have one of those every year because the chances of my getting bowel cancer would have been raised.  Another thing I thought must surely be a thing of the past was the rectal exam.  One of the highest things on my list of pros when I was considering whether or not to have the proctectomy was that never again would I have to hear those immortal words, ‘Just lay on your side with your knees up to your chest,’ uttered with the accompanying snap of a latex glove. Turns out I was wrong about that.  At least, it wasn’t the case yet.  Because that’s what happened as I got on the bed, quickly realising I was about to be subjected at least one more time to a lot of prodding and poking.  Oh, if only that were all it had been.

He said he could see ‘pockets’ that might be infection, or might be little blockages – he would just open them up, he said, as though what he was about to do was a benign, gentle little action.  When what he really was about to do – what he did – was hack into those ‘pockets’ with a scalpel and no anaesthetic.  If I’d thought I was in pain before, I’d been a fool.  A blissfully ignorant dope of the first order.  He did check that I was up to date with my pethidine, but that was it for pain prevention.  He cut and hacked for what felt like hours, as I tried to banter with him and make reassuring jokes for my husband to hear behind the curtain, when really what I wanted to do was cry and scream and offer him money and my first (only) born child, if he’d only, please, just stop.  It reminded me, oddly, of the first time I’d had my legs waxed, when I’d wanted to do something similar and run out with only one hairless leg. I stayed ‘til the end then, and of course I had to stay ‘til the end of this, too.  Every time I thought he’d got the last one, hacked into the last pocket of pus or whatever it was, there was just one more, then another, until finally, eventually, sometime just before the world must surely have ended, it was over, and all I’d done to give myself away was let out the occasional unbidden gasp.  I think I might even have been so impressive that he didn’t think it had hurt at all, though he did suggest I take a few breaths before I joined him and husband back at his desk.  I looked at my watch and was amazed to find the whole thing had taken just five minutes.  Five minutes that had felt like fourteen lifetimes.

Back at his desk, he told me that if this worked, if the pain was significantly lessened after his quick intervention, then I could pop in once a week at the end of clinic and he’d happily do it again for me.  Every week.  I said I’d let him know when I’d seen how things were over the next few days.

One of the ways I handle bad things happening to me is to talk to my friends about whatever it is that I’ve just been through. I phoned three of them on the way home, while husband listened to me repeat my tale of anal woe – using the exact same words, with little variation each time, apparently; which makes it quite dull for the person sitting next to you, husband says.  It was less boring for me, because I got different responses.  At least, with different words; the responses were much the same in that everyone was appalled that I could’ve undergone such a thing without even being offered some local anaesthetic.  I laughed it off; what would I need local anaesthetic for, I asked; he only took five minutes, somehow forgetting how hideously, unendingly long those five minutes had seemed just half an hour or so earlier. 

Whilst still in the car, I called my GP because I needed some more pethidine and we agreed to stop off at her surgery on the way home.  She took me into her consulting room and I told her what had just happened and, like my non-medical friends, she was quite surprised that he hadn’t used any anaesthesia.  I generally put unquestioning trust in my surgeon, but I do in my GP as well, so now I had to look at it properly, rather than just ‘bravely’ laughing it off.  I didn’t want my surgeon to be wrong, and I didn’t want my GP to be angry at him, and I suppose really I should just have been thinking about me, but who knows what would happen if I did that for too long … and I realised as I tried to jump to his defence that I did agree with him.  That if I’d had local anaesthetic, I’d have had to have countless injections around the anal area, which would have hurt like hell on their own, then I’d have had to wait for them to work, during which time I’d probably have been sent back out into the waiting room while he saw a couple of other patients which would have meant I was there for goodness knows how long, and all manner of other interruptions he’d had to deal with would have dragged that out, and all the time I’d have been feeling nervous and scared about what he was going to do to me that had required painful anaesthetic injections, and how bad it was going to be.  In the end, five minutes – and it was just five minutes, however much longer it had felt at the time – of agony and torture was far preferable to all of that.  The GP thought that was a fair point, as long as I was happy with it, and I was, so we went off home, me clutching my prescription for more pain relief and husband eager to get me back to my usual place of recovery so he didn’t have to listen to the story of the surgeon ever again.

You’re probably wondering if the procedure did work; if it did significantly relieve the pain.  I’ll tell you this – I never felt the need to go back and let him do it again.  Which isn’t exactly the answer to that question, but it’s all I’m saying.

Thursday, 16 August 2012

The Pyjama Test

Recovering from any operation is a fairly long and tedious process. Recovering from the proctectomy was longer, and more tedious than I’d ever experienced before, and it was my 9th or 10th surgery (lost count somewhere in the late 80s, and missing notes mean I’ll probably never be quite sure).  I’d expected it to be much the same as before; I’d certainly thought it would be a similar experience to the ileostomy op a year earlier.  My surgeon kept telling me this was the biggest of all operations, but I don’t think I ever took in what that might mean for afterwards. 

I have a high tolerance for crap tv – over my years in bed, I’ve watched entire series of both the X Factor and Britain’s Got Talent (oh, the shame), but there are things I draw the line at; if you ever catch me watching ‘Take Me Out’, for example, you have my permission to do just that.  Guns are difficult to acquire in the UK, so if you can’t get hold of one of those, a knife will do, but just a quick slash across the jugular please – I know I’d deserve it, but a little mercy would be appreciated.  A bit of kindness.  I’ve had a rough couple of years.

One thing that alleviated the tedium of healing was visitors, and I had quite a few. One afternoon, my forthright friend (the one who pointed out that I could empty my bag into any toilet, back when I was first bagladied up) came over, furious about a book group she’d just been to. ‘We discussed the book for fifteen minutes and then everybody talked about their children’, she complained.  It wasn’t what she wanted; it wasn’t the point, and she didn’t want to go back to that book group ever.  She wanted to come to my book group.  I pointed out that I didn’t belong to a book group and she said that I should start one. It should be called ‘Wendy’s Bed Book Group’ and only have lovely people in it and that was the book group she wanted to belong to.  It seemed like a much better idea than channel hopping and maybe finding myself waiting to be garrotted, so I agreed to sort it out.  It wasn’t as easy as you might think.  For a start, I was trying to start a book group thirteen years after it had first been fashionable; most people I asked had either tried it and hated it, belonged to one already, or found the idea totally abhorrent.  A couple of my close male friends, with whom I discuss books regularly and often, told me to fuck off, in that warm, snuggly way that only close friends can.  One female friend told me she’d been to a book group where there had been an explosion (she didn’t explain any more than that), and was quite terrified of the whole idea now, which seemed fair enough, and so elaborate if it was a fabricated excuse that she deserved respect for that alone

There was another factor that had to be taken into account, of course – I needed to be comfortable with any and all members. When I was having a particularly bad day, the book group would indeed take place on and around my bed.  On better days, I would go downstairs to the lounge, but in both instances, I would be in my pyjamas.  Ill people have different attitudes to what to wear when sick, but for me it’s unequivocal: if I’m not well, I’m in bed and in pjs.  If I’m feeling good, I’ll be up and dressed.  But to get dressed and then get back into/on the bed feels like I’m conning somebody, quite possibly myself.  Like there’s a chance I might get in the car and drive to Brent Cross, or go for a sushi lunch in Crouch End, when there absolutely, positively isn’t.  Even going downstairs to recuperate in the lounge feels odd to me. I’ll go hang out on a sofa when I’ve got visitors and it’s a goodish day, otherwise I’ll stay in bed, because I’m not well; I’ve just had big, fat, horribly, scary surgery, I can’t sit on my painful bum unless there’s a pressure cushion underneath it, and pretending to be ok isn’t something I’m going to do.  Ergo, if I wasn’t comfortable with someone seeing me in
my pyjamas, they weren’t going to be welcome in our book group. Besides all that, I’m a writer – pyjamas are my default clothing choice.

Finally, we ended up with several women and a token male.  After the first few meetings, young kids, acting roles and general untogetherness had whittled us down to four.  My forthright friend, a close writer friend who will always hold a special place in my heart for introducing Teen and me to the delights of Buffy the Vampire Slayer, the token male, and me.  It worked.  Though we did think maybe we should expand a bit; we had dissent on most books, but we worried that we’d soon be able to anticipate what each of us thought without actually having a discussion.  So token male suggested a man he knew with whom he’d talked book groups. I asked if he’d be ok with me in my pjs, and token male thought he could handle it.  So new man was invited.

New man was fine; he arrived early the first time he came, and I found myself alone with him (in clothes – I lost my nerve about the pjs thing) feeling awkward. I asked what books he liked, and we disagreed on about three before anybody else turned up. But it was good to have a new book brain in our gang; one we couldn’t anticipate. In fact, so much could we not anticipate him, none of us foresaw that one day he would turn up with somebody else in tow.  A pretty woman, dressed as if for a garden party (the rest of us women were dressed as if for a front room discussing a book on a Sunday afternoon), who arrived with new man, clutching the book we’d been reading for this particular meeting. The book was Jennifer Egan’s A Visit From the Goon Squad.  It was the first book all of us were agreed on – we all loved it; loved its daring; its brilliance; loved that we could relate to all the characters, felt like we knew them.  I should tell you, I’m not usually good at being warm and welcoming to uninvited people in my home – I have been known to turn away uninvited party guests in the past, but I’m trying to change that; I decided I’d be completely open to this person, despite none of us having any real idea why she was there.  New man didn’t explain; she introduced herself by her name, ignored husband when he brought tea for all of us, and still I tried to keep a welcoming demeanour.  I doubt I was very convincing.  And she hated the book; she said she couldn’t relate to any of the characters, had never met people like them in her life.  And still I smiled. My forthright friend asked her what her favourite book was and her answer was a children’s book about a bunny that died. By now, I wanted to laugh and point and ask her what the fuck she was doing in my house, but instead I was just grateful not to be in pyjamas.  She wasn’t horrible or anything; she just wasn’t the kind of person any of us could relate to.  They left early; we looked at each other in silence for a moment, then all started squealing at once – ‘who was she?’ ‘Did anyone know she was coming?’ ‘He must have invited her ages ago – she’d read the book!’ It was all too weird.

Token male was charged with asking him what he’d been thinking, and the next day he did; new man replied that he thought it would be a nice surprise for everybody.  The woman herself facebooked token male thanking us all for making her feel so welcome.  It makes you wonder how she feels in other company.  Or maybe we were better at acting than we’d thought. 

A couple of days later, I found myself in a kind of retrospective panic.  I was ill; these were strangers in my home – what if I’d had a bag leak in front of them? What if they’d even glimpsed my bag and wondered about it? How had this situation occurred?  They must have seen my pressure cushion; what had they thought? Probably that I’d had haemorrhoids; I hate people thinking I’ve got haemorrhoids; they’re so ordinary.  I’m much more complicatedly and fascinatingly ill than that, and now these two virtual strangers, who didn’t even get one of the best books any of us had read all year, might be thinking I was one of those haemorrhoid people. I didn’t want them back; either of them.  I spoke to my Buffy loving friend and she agreed; she said she’d not enjoyed the group so much since new man had joined anyway.  I spoke to my forthright friend and she agreed – actually she vacillated a bit; she liked the challenge of new people, but agreed that if the rest of us were uncomfortable we needed to ask new man and his garden party friend to leave.  And of course token male would have to do it; he’d invited new man in the first place.

I got really paranoid as I waited for token male to do the deed; they knew where I lived, what if they were furious at being chucked out of the book group and threw bricks through my windows? What if they started parking outside and just staring at the house? What if I remembered that new man was essentially a perfectly decent guy and stopped being such a paranoid loon?

As it happened, new man didn’t see what he’d done wrong by bringing an uninvited person to the group without asking first; didn’t get how carefully we’d chosen our little band of readers, or why.  But he didn’t want to smash my house up either. He actually wrote a very nice email saying he’d asked another friend who agreed with us that he’d done a weird thing, and thanked us for inviting him in the first place. He wished us well in the future. He was the nice guy he’d been all along, if a little misguided.

I learned a lesson though – it was one I knew already, but it was reinforced, and I think it’s a good rule for life.  If you wouldn’t be comfortable with someone seeing you in your pyjamas, you probably shouldn’t have them as a friend.  You might think it doesn’t apply to people who are only in their pjs at night; or those who sleep in the nude, but give it some thought.  It just might be a good rule for you, too.

Thursday, 9 August 2012

Duck, Soup!

After last week’s leap into what was a particularly horrible bit of the present, in which we lost our lovely baby cat and cried a lot, it is quite a relief to take this week’s post back into the comfort of the past and return to the chronology I originally set up all that time ago.  Given that I’d been home for just about a week by this point, it is really the discomfort of the past, if I’m honest, but in it our little cat Luka was still alive and appeared to be healthy, so I guess it’s swings and roundabouts.  Which is a stupid phrase, as most kids enjoy both, and most adults find the two make us feel equally nauseated.  Surely the point is that one should be good and one not so much – maybe swings and serial killers would be more appropriate.  Anyway, whichever you choose, it’s pretty much that.

I’d settled back into my routine of pethidine three times a day, sleeping (with the cat on my lap) every few hours, sitting perched on my pressure cushion when I wasn’t in a lying down position, and having food and drink brought to me, without much complaint, by husband and teen at regular intervals.  It was winter, it was cold, and good telly is scheduled at that time of year, so all in all, things could’ve been a lot worse.  The one thing I did have to do on my own, without anybody’s help, was get to know my new stoma.

You may recall that as well as tearing out my rectum and sewing up my anus as I slept the sleep of the anaesthetised, my surgeon had also refashioned my stoma.  It’s not that it was out of fashion before, but it had prolapsed and did occasionally grow to the size of a donkey dick.  He couldn’t fix that without major problems and a lot more surgery, so as a compromise measure, he’d opted for the refashion in the hope that it might help.  In the hospital, it had appeared a little bit miraculous; I’d not needed the whole palaver of bag changes that I’d got used to, and I’d got a good day or two more out of each bag. Of course, when I was in hospital, I wasn’t eating proper food; all my nutrition went directly into my body intravenously, so my bowel – or what was left of it; more properly, my ileum – didn’t have a whole lot of work to do, or any variety of foods to deal with.  My skin was clear and untroubled by the seemingly completely benign effluent that trickled gently from my stoma and into the bag.  I had the best behaved, most beautiful, lovable stoma in the whole of ostomyworld.  Or so it seemed.  And then I went home.

For the first few days, I ate carefully – I didn’t feel particularly hungry, and all tastes seemed harsher and stronger than they should.  I mostly ate shepherd’s pie, because it was mashed and mushy and appeared to be mostly harmless.  I ate it every day for the first few days.  Except for the odd meal where I ate chicken soup that my mother brought over for me, as Jewish mothers should.  She’s not generally a stereotypical Jewish mamma my mother, but in this case she was, and I was very happy for her to be so.  She even convinced me to force a bit of chopped liver down.  You’d think my stoma would’ve been happy with such offerings; certainly, the rest of my body was. 

My first bag change had been easy – I’d literally managed to whip off the bag, wash, dry and spray the area, then put on a new bag.  No pastes, no powder, no waiting for creams to dry.  I was in a whole new world, and I liked it.  The second bag change was a bit different.  My skin started to itch, which we ostomates know is a sign that things aren’t completely right.  It can be the warning sign of a leak, or it can just mean the skin is suffering.  In this case, it was a bit of both.  My skin was getting red and a bit bloody; it was most definitely sore.  I did a quick bit of online chatting with fellow
ostomy folk and decided my best option was to order seals.  Washers, they’re called actually, and that’s kind of how they work – like plumbing washers.  Only they’re not metal, they’re soft and rubbery and made out of a substance I couldn’t name if my life depended on it.  You push them down over the stoma and stick them to your stomach, then you put the bag over that, and lo your skin is protected.  This seemed to work, and was still a lot less hassle than all the faffing about I’d had to do before.  It wasn’t as simple as the ‘hallelujah’ moment I’d had in the hospital, when it had been so easy, I’d almost felt the clouds part, the angels sing, and the sunshine bathe me in a ray of perfect light, but it would do.

Having a new stoma is a bit like having a new baby.  I know I’ve made the comparison before, but it stood for this refashioned one as much as it had for its original incarnation.  You’re helped with it in the hospital, taught how to manage it, and then suddenly you’re at home, alone, just you and the stoma, and you’re going to have to look after it for the rest of your life.  Except the stoma’s never going to get to a point where it can do things for itself; it’s never going to go to university, leave home, get a job and eventually look after you in your old age.  It’s just going to stay at that bit where you have to wake to make sure it’s okay a couple of times a night, and change it regularly to keep it from getting filthy.  You do, however, only have to change it every 2-3 days; if you did that with your baby, you’d have social services sending round care workers and ATOS before you had a chance to realise you were doing something wrong.  Though any child spending 48 hours in one nappy would probably have found a way to alert you to the problem before it went that far.

Another of the delights of babies is projectile vomiting.  I wasn’t expecting any parallel to that from my stoma either; I hadn’t had anything like it with my first version.  Stoma 2.0, it turned out, was a different kind of a beast.

I was eating more normally by this point, settling into a decent routine, and I’d had a lovely thick soup for my lunch.  Leek and potato, since you ask.  What I hadn’t done was fix my bag properly the day before; I’m not sure what I’d done wrong – maybe I’d changed it too close to the most recent pethidine dose; perhaps I’d been tired; there might have been a good tune on the radio as I was changing it and I’d been singing along instead of focusing on what I was doing.  Whatever it was, something had been askew, or not stuck on properly, or just basically screwed up, and shortly after my soupy lunch, the cat (in his capacity as my bag puss) had agitated me to the point where I’d finally thought maybe he was trying to get me to check things out, and I realised an imminent bag change was necessary.  Unless I wanted to wait a bit and change my pyjamas and bedding as well.  Actually, I wouldn’t have done that – I’d have changed my pyjamas, but husband would have done the rest.  Which neither the cat nor I thought was a good idea.  Very unselfish of the cat, now I think about it – he loved it when we changed the bedding and he could leap in and out of the duvet cover, doing textbook, tv advert cute stuff.  Just one more thing we’re going to miss.

Anyway, back to the past – to the bathroom, to be precise, where I switched on the radio, filled the sink, got all the accoutrements set up and started to change my bag.  It all went fine at first.  You probably don’t remember, but the newly refashioned stoma has its mouth on the underside, so I can’t see if and when it’s going to eject anything.  Up to this point, that hadn’t proved much of a problem.  I’d check regularly, time things carefully, and nothing much had gone amiss.  This time too, everything was going to plan – I’d taken the old bag off, washed the area, cleaned the stoma, let everything dry and had got the washer stuck down.  What I hadn’t thought about - and why would I? - was that once the stoma was surrounded by the washer/sealy thing, it was being supported and held in a different position.  The mouth no longer faced downwards, but was raised and, as the stoma itself stood proud, the mouth pretty much faced front.  Which I only became aware of when a huge, powerful, projectile vomit of a jet of soupy poo shot out like my stoma was some kind of power shower.  It went all over the sink, and as I moved in shock, it went all over the toilet (which had its lid down, and stoma stuff on top of it) too; it covered the clean dry wipes and when I stupidly turned to grab the kitchen towel I keep in the bathroom for just such emergencies it sprayed the bathroom wall, too.  Fortunately, the walls are tiled, and obviously the sink and toilet are easily wipeable.  My instinctive response to this madness was to laugh, somewhat hysterically.  I wanted to call out for teen to come and see, because I knew he’d think it was funny too, but there are boundaries and some things a child should just never see coming out of his mother, so I laughed alone.  I laughed as I wiped everything down, I laughed when I realised my stomach, body and washer were completely poo-free, and I was still giggling as I put on a fresh bag and cleaned up the bathroom properly. 

If it ever happens again, I’ll be ready.  I’ll lift the toilet lid, ignore everything that falls to the floor, and aim my stoma at the bowl; but I’m kind of glad it happened once.  And though I wouldn’t have wanted to cover him in my poo, I feel kind of sorry the cat didn’t see it.  He’d have found it almost as much fun as changing the duvet. And I’d have one more bag puss memory.

Thursday, 2 August 2012

Bag Puss

Usually I’m pretty good at seeing the positive side of life. I like to think I’m a glass half full kind of person when I’m asked questions that require clichéd replies. This week though, I’ve been forced to conclude that sometimes life is just crap.

We’re cat people, husband, teen and I.  As you’re reading this on the internet I’m assuming you’re not averse to the delights of the feline yourself.  That you’ve had a few laughs at the kitties that resemble Hitler and have delighted in at least one or two of the endless cute pics that stream onto our screens, almost unbidden, on a daily basis.  If there were no kittens, the internet would only be half the size, and a lot more work would get done. 

Our first cat was a majestic, magnificent lion of a creature. He was king of the local cats and master of all he surveyed and we adored him, right up to the day he stupidly ran in front of the car that killed him on the street he’d roamed confidently for the previous 8 years.  The pain his death caused us was shocking in its intensity, particularly for teen, whose cat he really was. Teen had chosen him when he was just 9 years old himself, had named him Tweety (in the vain hope that we’d buy him a bird he could call Sylvester) and had been the go-to-person for all Tweety’s trials and tribulations. His death broke all our hearts but most particularly teen’s.

So it was with some trepidation that we dared to love again. This time it was Luka. He was a teeny, tiny little thing, as timid as his predecessor had been brave.  He never left the house by the front door, and he never went further than the confines of our garden when he went out of the back one.  He was the perfect next cat for a family who’d lost their previous one under the wheels of a car.  And he was a people cat. From the day we brought him home, probably a little early, at 6 weeks, he liked nothing better than to be with us. I don’t want to be a cat twat here, but I’m  afraid I’m going to be – like most cat owners, we thought Luka was a bit special. He loved to hang out with whichever of us was at home – he was a bit bonkers, a bit unpredictable, totally adorable. He didn’t seem to favour any of us; it was almost like he wanted to share himself equally between us, with a little bit more attention for teen, in whose room he’d lived for the first few weeks. And then things changed a little. 

I had my second surgery – the proctectomy (you know, the rectal removal, the sewn-up anus; I think I’ve mentioned it a few times), and when I got back, Luka seemed to love me almost as much as he loved teen.  More than that, he became my little stoma assistant – my bag puss.  He didn’t change it for me or anything – he was a cat – but it was like he tuned in to something.  He took to sleeping with me at night; he’d snuggle up along my thigh, his head on my tummy, just next to my bag.  And in the early mornings, some time between 5 and 7am, he’d walk up and down my body, sometimes leaping on my chest.  Almost every time, I’d curse him – ‘For fuck’s sake, I’m trying to sleep … what the bloody ..?’ (I’m not good much before 11) and he’d just keep going until I’d think to feel my bag and realise it needed emptying.  I’d get up, and together we’d go to the bathroom, where he’d sit on the sink – always in the same spot – while I ran the tap for him to drink from as I emptied my bag. Then we’d both go back to bed, resume our sleeping positions and head back to the land of dreams.  Sometimes, instead of coming back in with me, he would go into teen’s room and spend the rest of the morning nuzzled up to him until he woke, but most often he came back with me.  He wasn’t totally committed to anyone though; obviously whichever family member woke up first would be the one he’d follow downstairs, being ridiculously cute in return for food. That’s what cats do – we know this.  Food over everything. 

So when Luka stopped eating last week, we realised something was wrong. But it was hot, and sometimes cats just decide you’re a complete bastard for feeding them the food they’ve been perfectly happy to eat for the preceding 6 months.  So we duly changed brand and tried again.  And again.  To no avail.  Then he started sitting in places he never usually sat.  He stopped following us into the bathroom, no matter how fast and loudly we ran the tap.  Then, on Wednesday morning, he was asleep snuggled up to me, husband and teen were both out working, and when I got up, Luka didn’t.  He just stayed there, on the bed, listless, lethargic and not himself at all. I took him to the vet. For three consecutive days we took him to the vet, and then on Friday night, we were all at home, back from the vet for just an hour, having let them take bloods from our little fluffball, when the phone rang and the vet told us our cat was in acute kidney failure and they didn’t know why, but we needed to bring him down at once so he could go on a drip. He might be curable, the vet said; he was in such good spirits considering the numbers (so high the machine couldn’t read them) and that he hadn’t been eating or drinking.  The next morning, the numbers were higher, but because he was so young – just 18 months old – they thought it was worth trying to save him. It was the weekend now so we had to take him to the expensive 24 hour vet in Hampstead, which (for those who don’t know) is a very posh (and expensive) part of north London. 

When we picked him up, Luka was delighted to see us. Then, when we put him onto yet another vet’s table, he turned his back to us, clearly not impressed.  It was like he didn’t even care that we’d taken him to Hampstead.  The vets there were nice, as were all the vets we saw, and they suggested an ultrasound to check how bad his kidneys really were.  We have no insurance and as any pet owner knows, this stuff is not cheap.  It makes you realise, again, just how amazing free healthcare for humans is. What a valuable and extraordinary thing one of our governments once did for us, and what a terrible thing our current government is doing in trying to destroy it.  Every dressing, every injection, every consultation for our cat cost us money.  If we had to pay anything like those costs for my NHS treatment, we’d have gone broke years ago. In truth, I’d probably be dead, thanks to the one surgery we’d have decided we couldn’t pay for.  But that’s not the point here; the point here is Luka was so young, and he looked so well; how could we do anything but keep paying out of hours Hampstead prices to try to save him?  We said yes to the ultrasound and went home and waited.  And waited.  Five hours later, with husband at work, the call came, and the news was not good.  The vet said that if Luka had been human, he’d need a double kidney transplant. Urgently. That the state his kidneys were in, he must have been born with the condition that was destroying them, and that to continue any kind of treatment would be unfair.  That if we did, and he survived, he would only have a few weeks left anyway.  Weeks that he’d have to spend in hospital, on drips, and, the vet told me, ‘he doesn’t like it here. He’s not happy.’ Of course he wasn’t. He didn’t like leaving the house, he didn’t like not having one of us there to hang out with.  Tears streamed down my face as I told teen the news.

Of all the things I was imagining writing about when I started this blog; all the adventures I was going to have with my new bag, my new life, I didn’t even consider that one of them would be watching our beloved, far too young little cat be put down.  But later that night, when husband got back from his gig, that was what we were going to do.

A friend pointed out that it’s a privilege to be able to do this; a gift to our pet of huge generosity, and something we couldn’t do for a human we loved.  She was right, of course, we’ve all watched people we love dying; raging, in agony, terrified. There are regularly court cases in the news where people whose lives are unbearable due to illness or injury want the right to end it - deserve that right, and yet our legal system won’t allow it.  With a pet, we can do that one last kindness, and we don’t have to fly to Switzerland to do it, risking a prison sentence on our return.  It’s a wonderful, unselfish thing to do, but it’s still hell.

At 10.30 on Saturday night, we spent a beautiful half hour with Luka.  He was so happy to see us and we nuzzled with him, played with him, kissed and cuddled him and one thing we can be sure of is that he was happy.  Which was both wonderful and awful.  Perhaps if he’d been skinny, clearly racked with pain and uninterested in anything around him, it might have been easier for us, but then it would have been horrible for him.  The vet had explained that because he’d had the condition all his life, he was more able to cope with it, hence his relatively perky demeanour.  In the end though, the time came.  Teen held him, the lovely vet injected him and quickly, peacefully, heartbreakingly, he was gone.  We sat there for a while, reminiscing, laughing, crying.  We came home and did the same into the small hours.  And when we woke the next morning, he really was gone.  And we really are so very sad.

This happened last Saturday.  In the intervening nights, something has woken me at the right time to empty my bag.  It could be anything doing that – my brain, the instinct borne of nearly 2 years with a bag, the ileostomy fairy - but I like to think it’s a bit of Luka left behind.  And that life isn’t completely crap.