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.


  1. Hi Wendy, pain.....I thought to myself when I read your blog, how lovely to be in a opiate haze now and then - as Simon Amstall suggests, it's like being hugged from inside! But clearly it wasn't helping you any more and you were lucky not to hallucinate with such high doses. But I digress -your blog once again opened my eyes to reconnect to the fact we constantly, day to day, suffer discomfort and temporary lesions but our clever brain desensitises - we muddle through somehow. But this strategy is no bloody good with pain like you endured over months - crikey the thought of it is bad enough for me! Once again, you can rightly allow your head to swell as I bow to your enormous courage and determination. Much admiration and love Rich xxxx

  2. Hey that was a good read :)
    I have been taking Tramadol 100mg four times a day for 20years now. It used to be Pethidine when I started in and out of hospitals too! They don't use it so much now in UK either though they will still offer it if you are in pain in hospital. I prefer to go right to Diamorph, or Heroin as its also known. It is the only one of the strong injectable pain killers that helps the pain without making me feel as mad and anxious as ever! The thing is I don't actually like the nodding/confused/am-I-dreaming-or-am-I-awake feeling from a strong opiate but the diamorph seems to have some ability to smooth out that anxiety too. Obviously not something I's want to take for long but I have had withdrawal from long hospital stays in the past. Like you, if I have to come off or reduce a narcotic type drug, I just do it.
    Not easy, but you know you must and you know the facts etc. around your symptoms and whether you NEED to take it any more and sometimes you have to do it so I just steel myself and cold turkey myself all the way to freedom hehe. Or that is what it always feels like to me - a returning of the old me, the real me...I get my personality back during those sweating shaking nauseous hours of withdrawal and I always come out the other side as fresh as a daisy!
    Hehe, well, not quite but maybe you get what I'm trying to say.
    No strong narcotics for me at the moment, just the decades long Tramadol (and Zopiclone) addiction is all.
    Now that WILL be fun stopping that.
    I plan to, just waiting for a day when the pain stops.

  3. Well done!

    I had such an awful awful withdrawal from Tramadol, zopiclone amitriptiline and when pain was very severe oramorph.. We went cold turkey and it was the worst weeks of my life! Scary hallucinations etc too! Horrid thoughts, sweats, didn't sleep for a week ( I was in hospital doin this) my consultant says you can get narcotic bowel syndrome or something, I believed him.. Thought it was worth a shot but ithe miracle he made out would happen sure hasn't! More pain now I have rheumatoid arthritis and scared about painkillers after what happened