Thursday, 13 December 2012
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 21st 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.
Thursday, 29 November 2012
In 1988, my surgeon told me I had two years left to live. That sounds melodramatic doesn’t it? If not slightly ridiculous. I thought that at the time. I was pretty sure for the whole of those two years that I didn’t believe him for a second. Even when my mother told me he’d phoned her (which probably broke all kinds of ethical codes) and told her the same thing. Then, when those two years were up, and all kinds of tests - pinching myself, taking my own pulse, realising that my legs desperately needed waxing - proved that I was most definitely still alive, I fell into a big, black, horrible abyss. Not a real one. A metaphorical one. A Churchillian black dog (as opposed to the white one that sells you insurance) kind of thing. I was depressed. Properly depressed. Diagnosed depressed, and provided with both a Community Psychiatric Nurse who visited me at home every two days, and a prescription for anti-depressants. The nurse and I concluded that I was reacting to surviving the death sentence I was convinced I’d never believed. A bit like when you’re in a car crash and you handle it brilliantly at the scene, then go home and shake for three hours. That kind of thing. But bigger. The nurse was great; we got on brilliantly and she probably kept visiting me for longer than she needed to just because we enjoyed each other’s company. We even stayed in touch for a few years afterwards, but eventually she went back home to Sweden, where she was from, and she was out of my life. The anti-depressants were a different story.
I only tell you that tale to give context to how I started on anti-depressants; I’ve been taking them on and off – more on than off – ever since. I stopped them for a year or so when I got pregnant, then there was research that showed they were good at keeping Crohn’s in remission, so I went back on them. Then a few bad things happened – deaths of loved ones, jobs lost, that kind of fun stuff – and I stayed on them. The ones I take are currently called Dosulepin (they were called Dothiepin ‘til a few years ago); they’re part of the tricyclic family, which is the more old-fashioned, these days less-favoured group of anti-depressants. When SSRIs first became trendy in the late 90s, so did apocryphal stories of people who’d never been violent murdering their entire families after taking Prozac for a week, so my GP and I decided I shouldn’t change over to them. It probably wasn’t for that reason exactly, more that I’m an uppy kind of person and SSRIs are uppy too. Tricyclics help you sleep, which is more the kind of thing that works for me. Every night I take Dosulepin, followed by enough codeine to put Mike Tyson to sleep, and I still get regular bouts of insomnia.
I have never been depressed like that first time again, thank goodness, but I did come to the realisation that taking anti-depressants was a pretty sensible option for someone with chronic disease – not just Crohn’s, but any chronic disease. In most instances, when people feel low (that’s low – miserable, unhappy, desolate even - not clinically depressed), there’s a way out; a new route you can at least try to move your life on to, but with chronic disease there’s no escape. Whatever you do to try to improve things, you’re still going to have a chronic disease. At that time, I didn’t really know many other ill people, but nowadays I do, and I’m so glad that I do; knowing other people in a similar position, people who truly ‘get’ how you feel, is a wonderful thing. Not knowing any meant I had to come to that obvious epiphany all on my own. I know now that lots of people with chronic disease or disability take anti-depressants; we’re the anti-depressant gang.
As someone with an ‘invisible illness’, I have to take them so I don’t punch people in the face when they tell me how well I look. We all have our own pat answers to that statement; mine’s usually ‘Oh thanks, I’m really not though.’ The thing is, when you say, ‘It’s great to see you looking so well’, to an ill person, we (okay, I) sometimes hear ‘I don’t know what you’re complaining about, you’re clearly fine, you malingering fuckweasel.’ It depends whether you’re the first or the fourteenth person to say it that day. I know that’s really not what people are thinking, of course I do. Unless they work for Atos, that is.
Sometimes though, I really wish I didn’t look hale and hearty when I feel so ridiculously fatigued that buttering a piece of toast is asking a bit much. Looking fit and healthy when your bowel is suppurating and cramping and your bag is so full it’s threatening to burst and you’re going to have to buy a coffee in order to use a loo, can be a bit annoying. But most of the time I’m fine with it. If I look well, though, I’d quite like to be well. Matching insides and outsides would be good once in a while. If I wasn’t on the anti-depressants, those things could really get to me. I don’t suppose it’s completely down to them that they don’t, but they help.
I’ve been having a flare-up for a while. I was pretty sure it was gone a couple of weeks ago, and I got up and went out a bit. Met a couple of friends for coffees and lunches; ventured to Ikea with husband and son and rejoiced in the fact that we didn’t fight. Didn’t have so much as a cross word. And when we got home, I realised my gut was hurting. That it had been hurting all day and I’d been ignoring it; hoping it was just a twinge and would go away. But it didn’t, so it was back to bed for me. I did get up to go and see the GP who told me I had probably been over-confident; that I should have rested for longer; that this time, I was to go to bed and not get up until 48 hours after I feel better.
I’m still mostly in bed. It’s not as bad as it was, the flare-up, but it is pissing me off. I used to be brilliant at resting; at staying in bed. I did it for the best part of four years before I finally accepted that I needed an ileostomy and my baglady life began. Now I find it really hard. Now that I’ve had months at a time of relatively good health, I’ve become rubbish at staying in bed. I’ve become very good at thinking I’m about to be better; I’m brilliant at naively making arrangements, sure I’ll be able to keep them because I’m almost better, really I am.
Some days I find myself quite angry. I feel impotent, not in control of my own life, envious of other people’s good health – not my husband’s, or my son’s, but other people’s. Possibly yours. I see mothers outside my window shouting at their kids and I want to run out there and yell in their faces. Just sometimes. Because really I know that nobody appreciates good health until they lose it. And even then, if they’re lucky enough to get better, they only appreciate it for a while. I know because I’ve done it myself. When I first had life-saving surgery, and had yet to discover how much my Crohn’s would affect my life, I swore I’d cherish every second, enjoy every moment, fill every minute of every day with marvellousness. I must have tried to do that for about three weeks before losing that feeling; that need; that appreciation of just being alive. But lordy, there are days when I get so pissed off seeing perfectly healthy people wandering along looking grumpy. Of course, they could have an invisible illness themselves, but that doesn’t play into my scenario, so I always assume they don’t. And yes, I do know the word ‘hypocrisy’. I’m allowed a little leeway – I’ve got Crohn’s. *said in the plaintive whine of a particularly irritating 5 year old*
To be fair, my life is mostly good. Our lovely new bathroom is finally finished, we’ve got a sick-makingly cute new kitten who appears to be perfectly healthy. (You can read why that’s such a huge factor here), and my flare-up is surely coming to an end. Certainly it’s not as painful as it was at the beginning. I’m not taking any major pain killers, and not just because I only have morphine which makes me throw up if I take more than one dose in a 36 hour period. The fact is, it doesn’t hurt as much as it did.
I do have to keep cancelling things, but that’s my own fault. I shouldn’t arrange anything until I know for sure I’m well. It can get a bit tiring, or at least repetitive, having to explain to people that yes, I did have two massive surgeries and my intestines replumbed to help with the Crohn’s, but that’s all it was ever going to do – help. It wasn’t going to make it go away. It wasn’t going to cure me. The doctors and surgeons told me that, and I’m pretty sure I told my friends and family the same thing. But here’s the secret; the truth – I think I really thought it would. In the same way as I never believed I was going to die, I kind of did believe that although there were no promises being made, having a bag, and then going the whole hog and having my rectum removed and my Barbie butt created (bum sewn up – see posts passim), probably would make me better. Not cure me exactly, but make things so much better that I’d be just a person with a bag. Not a person with serious Crohn’s and a bag. I think I thought I’d have mild Crohn’s. It does happen; it’s happened to people I’ve met, and I was pretty sure it would happen to me. If I’m really honest, I still think it could – there’s a part of me that believes, once this flare-up has truly gone (my second since the last operation), I’ll be quite well. I always think things are going to be ok; I assume they’ll turn out perfectly fine, and I’m always taken aback when they don’t. Every time. It’s probably not a particularly intelligent way of existing, but it works for me. I’m mostly a glass half full kind of person; I like being that way. And when it does turn out the glass isn’t half full, but just has a nasty quarter centimetre of sediment on the bottom and is badly in need of being washed, well then I cope. I always cope. Partly that just seems to be who I am. And partly, I expect, it’s thanks to those little red pills I take every night.
Thursday, 8 November 2012
In a week where the world breathes a sigh of relief at the Americans making a better voting decision than we in the UK did last time round; where the cuts in our country are so bad that a disabled man went on a hunger strike outside his local DWP office; a week when a woman with Crohn’s disease, seemingly unfamiliar with the concept of remission, claims to have cured herself by eating tree bark (she has a secret recipe which she now wants to sell for millions to a pharmaceutical company)… In such a week, I feel I should be writing about something big. Something important. But there are people with more knowledge than I doing that. About all these things. So I’m going back to what I know best: my own story. Though I am quite cross about the tree cure thing…
This week, we are having our bathroom done. I say this week, we were also having it done last week and the week before. Workmen actually ripped out our entire bathroom, with a view to putting in a new one, three weeks ago. It was going to take a week. For the first few days, I was going to stay here and busk it – we have a tiny, unheated downstairs toilet – and then I was going to spend a week at my mother’s, coming home to a bright, shiny, perfectly functioning new bathroom. I should add that, all this time, I was having a horrible, painful, evil flare-up of my Crohn’s. I was on morphine which made me sick, then started eking out the few pethidine I had left from my last surgery, and which my GP has been told not to give me any more of. It’s a mess that I will only be in a position to sort out when the flare-up is long gone and I am well and strong enough for the fight. One of the ironies of chronic disease in today’s NHS. Maybe I should just go out and chew on a few branches.
A new bathroom is a lovely thing for anyone. For me, it was kind of a necessity. Our old bathroom worked – well, mostly. The toilet was old and tired and the flush took about 5 goes before anything significant would disappear into the waste pipe, and the tiles had swans on them. You know the kind of thing, white tile, white tile, white tile, swan. Then every so often, a series of tiles depicting a couple of swans on a lake. Horrible, hideous, chocolate boxy stuff, but not exactly dangerous. Just aesthetically unpleasing. Oh, and all the metal bits were faux gold. Faux gold taps on the sink and bath, a faux gold shower and attachments, faux gold hooks on the back of the door where we hung our towels. Nasty and tacky but again, not exactly functionally problematic. It wasn’t the prettiest of bathrooms – it was actually the ugliest one we’ve ever lived with – but it had been kitted out professionally enough and we’d lived with it for 11 years so we barely noticed it any more. Every now and again, the horror of the swans would upset one of us and we’d shout a bit, but then it would pass and we’d laugh and remember how much worse things could be. At least everything worked, if you don’t count the multiple toilet flushing thing.
And then I got my bag. And every two days I have to change my bag. It’s not horrible or upsetting or nasty or – usually – even particularly pooey, but it is a bit of a faff. And in that bathroom it was a lot of a faff. I hadn’t really thought about it much; it was just the way it was, and we weren’t in a position to do anything about it, then one day my mother was over and generally criticising. It’s ok, she’s my mother; it’s allowed. Sometimes criticism can lead to positive change, and this was one of those times. She was telling me how dusty it is in our bathroom, and asking how we cope with it (we live on a main road; it can’t be helped) and then she said, looking around the golden room of swans, ‘How do you change your bag in here?’ And out it came; a monologue of moaning about how difficult it was. How I had to perch the waste bags on the closed toilet seat, along with the dry wipes, how I put the fresh bags (always have more than one ready in case of error) on the side of the bath or, when it was on, the radiator (heating them up makes them stick more easily), how the sprays, powder and seals had to be laid out on the toilet cistern, and how, if my stoma decided to gush in the midst of a change, I had to sweep everything off the toilet seat sharpish so I could angle my stoma over the bowl and let it do its stuff. It was less than ideal. In fact, saying out loud how less than ideal it was made me feel a bit upset. A touch helpless. A few weeks after that, we found ourselves in a position to get a new bathroom.
Two days before they ripped the old bathroom out, I woke at 6am in a panic. I couldn’t stay in the house without a bathroom; what if I had a leak in the middle of the night? A bad one? It rarely happens these days, but it was bound to happen when I had no means of sorting it out. No shower. No heat. Just the tiny, freezing downstairs loo with half a sink in it. I had to go to my mother’s sooner. I had to go the day before the bathroom was no more. I would have to spend 10 days at my mother’s instead of a week.
Husband’s brother is a plumber who lives near Wales. He came to stay for a week, to do the plumbing. For free. Because he’s a good and lovely brother and knows we’re not exactly rolling in money. Unfortunately, the contractor who was doing everything else took to not turning up, and at the end of the week, brother in law had to go home with the bathroom barely started. He felt terrible. We felt angry. Each morning, waking in the warmth of my mother’s house, I’d tentatively ring home, nervous of what the answer to my ‘has anyone turned up?’ question would be. So many mornings, the answer was ‘no’. It seems, ‘I left my phone at a job/my girlfriend’s/the pub’ is the new one size fits all excuse. For 3 days, the contractor was ill. Then he went on holiday for a week. Then, when he got back last weekend, he told us his aunt came off her bike, which necessitated him not working for a couple of days. Perhaps he’s a part-time doctor. Who knows?
After two weeks, I came home from my mother’s. We’d got on fantastically well, but we’re a mother and an adult daughter; I didn’t want to push it. And, most importantly, the sink was plumbed in by then. So was the toilet, but it’s the sink that was everything to me. I chose the sink carefully; I didn’t care too much about everything else in the bathroom, but the sink … oh, the sink is the sink of my dreams. It’s wide. Really wide. The sink itself is normal sink size, but on either side there is space. Masses of space. It takes up almost an entire wall – it’s not a huge bathroom – but I had to have it. Because of all that space.
The night I got home was a bag change night. There was no radiator yet, and the hole where the extractor fan will go was open, leading directly to the cold outdoors. But the sink was in. My dream sink. And I was desperate to give it a try. I gathered all the necessary accoutrements, including the radio (I hate to do a bag change in silence) and entered what will, one day, maybe soon, be a fine bathroom. It was just me, a loo, an unplumbed bath, and my beautiful, working, huge sink.
On the left of the sink, I put the sprays, the seals and the powder, leaving space to stand over as I powdered and sprayed the stoma itself. The bags I put on the right, along with dry wipes and the waste bag, open and ready for discarded bags and used wipes, and I was done. Everything I needed was on either side of my beautiful new sink, just as I’d fantasised. The toilet was unencumbered, the bath was full of workmen tools, but that was it. I didn’t have to perch anything on the edge of anything else, because I had my dream sink. I apologise if this doesn’t mean anything to you; if I’m wanging on and on about this sink and you’re thinking that perhaps spending 2 weeks with my mother hasn’t left me unscathed at all, but mentally scarred in the weirdest of ways. If, however, you have ever had a bag, or have one now, or just know enough about it for whatever reason, then you’ll get it. You might even be a bit jealous; craving a dream sink of your own. I can tell you where to get one if you want, but you’re not having mine. I’m keeping mine forever.
As I write, the bathroom is still not finished. Every morning, husband gets out of bed stupidly early for a man who works at night, to be ready for the workmen to arrive at 8.30 as they always promise. And rarely do. We’re getting closer. The tiling is done, the bath is plumbed in, but not yet sealed, the shower is in over it, but not the screen door; plumbers – the plumber we have to pay for because our free, husband’s brother one had to leave when nothing else had happened – plumb, you see. They don’t put in doors, or seal joins. This one did put the radiator in though, so now the bathroom is unfinished but warm. And the toilet still works.
It’s annoying, and it’s irritating, and I have only had to live with it for a week, whereas husband and son have been coping with the aggravation and living in a house full of dusty tools and alien lumps of metal for 3 weeks now.
But it will be done, and it will be lovely, and in the meantime, I already have my sink. I have changed my bag at that sink four times now, each time more glorious than the last. And that flare-up? I think – whisper it – that it is almost gone. A bit of residual pain, but I have energy and I’ve been out during the day for hours at a time without having to pay for it in agony and tears. You know how I did that? It’s not a secret I need to sell to Big Pharma; it’s quite simple and often works on a flare-up if it’s not too serious – I rested. I was never tempted for even a second to try sucking on a tree.
Thursday, 25 October 2012
I’m now well into week 2 of this flare-up and I can’t say I’m enjoying it terribly much. It hurts when I eat, it hurts when I don’t, and I feel sick half the time. The morphine makes me feel sicker, no matter how many anti-nausea meds I take, so I’m eking out that tiny stash of Pethidine I had left and hoping the doctors might change their minds and give me some more one of these days. So, that’s where I am. Basically, a long drawn out and frustrated ‘Oooooowwwww’ covers it. Should’ve just gone with that. (I’m way too verbose to go with that.)
After my last blog got an unprecedented number of hits, thanks largely to the Guardian kindly linking to it, I was a bit thrown. I felt like I had some kind of responsibility to continue to report ‘weighty’ stuff like my take on the Atos scandal; I was worried that my little blog about poo had outgrown itself and wanted to be something else; something important. Like I should start researching things and making profound political points every time I post. And then I remembered that nobody’s paying me to write this; and while being paid for writing is always nice, not being paid means you should be able to write what you want. So, whilst I will probably stay angry with the likes of Cameron, Osborne and Hunt (oh my) for as long as they - and I - are alive, I’m also gonna stick with my original mission and talk about living with a bag and what it’s like and why I love it, and why I’m grateful for it, and when that naturally leads to fury about this hideous, heartless, unelected coalition, then that’s what I’ll write about. But it doesn’t always. Sometimes it’s just about the minutiae of life with a bag. Sometimes it’s just about the poo.
But not this week. Because I didn’t see that Atos stuff coming; I really didn’t. When I was awarded my DLA ‘indefinitely’ some years, ago, I took it as read that I wouldn’t need to worry about it again. That of all the things that concerned me, my fortysomething quid a week from the government, and the blue disabled badge that went with it, were two things that were guaranteed. That they were as dependable as the Crohn’s itself in that they would be with me always.
Of course I didn’t vote for Cameron – very few people did – but neither did I imagine, when he took the reins that nobody had given him, that his over-privileged background and commitment to the bank balances of his equally privileged pals would make for such a cruel regime. It really didn’t occur to me that his government would attack the weakest, sickest and poorest as though – in a creepy parallel with the odious Mitt Romney – they didn’t matter, because they – we – were unlikely to vote for him.
I was a fool. Like so many of us. And I don’t want to be a fool again, so I’ve found myself, as I’ve been gripping my stomach and trying not to wail, thinking that we need to be ahead of the game. We need to predict what he’s going to hit next – the NHS is being destroyed already, benefits are being slashed by people who wouldn’t know the difference between a blister and a blastoma, and whatever comes next should not be any surprise. But I would like to know what it will be. How he next plans to wipe us out of existence, ignoring the masses who march and sign petitions and shout and scream for some kind of justice, as he closes his soundproof door and takes a look at Sam Cam’s newest range of eight hundred pound notebooks. (Yes, really – look!)
Having been caught unawares by the Atos horrors, and specifically how it would affect me and my fellow chronic diseasers, I find myself looking around in the paranoid fashion of a teenage girl at a 70s DJ reunion, for the next coalition target. The next area they can hit and simultaneously screw us over and claw back a few billion quid.
I think I can safely assume that neither Dave nor any of his pals read this little blog of mine, but if you do see him, please keep the following theory to yourself. Though to be fair, if I’ve worked it out, I expect someone far more callous than I will have done, too. And here it is: you know that several billion they’re looking for so they don’t have to get the bankers to pay for their own mistakes? I give you free prescriptions. Or rather, I imagine they will take away free prescriptions. And not just in Scotland (if they stay in charge there), and Wales, where everyone is entitled to them, but here in England too, where far less of us get that privilege.
For years, I didn’t qualify for free prescriptions; the list of chronic diseases that do qualify is fairly arbitrary and IBD organisations have been campaigning for bowel diseases to be on that list for at least 25 years, to no avail. Cancer only got on the list in 2009 – it’s a pretty exclusive list. Crohn’s and Ulcerative Colitis still aren’t on it, but luckily for me permanent stomas are. So, phew! Thank goodness my disease was so bad that they needed to hack out my entire colon, bits of my ileum and a small piece of my stomach, resulting in my needing a bit of intestine being brought out of its natural habitat inside my body, so that I could poo through it into a bag. Lucky, lucky me. But then I thought that when I got DLA too – this time I’m not going to be so confident; so sure; so relieved to have a huge expense mitigated.
Free prescriptions obviously go to children, pregnant women, people on certain benefits, and the elderly, but those aren’t the ones that cost the money. I can’t find an exact figure (I told you, research really isn’t my thing), but I did learn that a) despite the limitations of that list, 88% of prescriptions dispensed are free and b) the NHS paid more than £9billion in prescription costs last year. That’s quite a lot of money. I’m sure Dave would like that back, and I’m pretty convinced his lap dog Jeremy would be delighted to present him with a way of getting it.
But if you were to read that somewhere - that free prescriptions for the chronically ill are being dropped - if you’re not getting them yourself, you may not realise exactly what that means; how it would impact sick people. Let me give you a clue.
I can’t speak for anyone except myself here, so I’ll tell you my rough costs – a box of 30 bags costs £90. Allowing for user error –that would be my own stupidity; lack of attention for whatever reason - and the occasional faulty batch, let’s conservatively say I go through one box every 6 weeks. That’s (gets out mobile phone, tries to find calculator app) about £780 a year. Then there’s all the stuff that goes with it – removal spray, barrier spray, seals, powders, pastes and creams add up to roughly £40 each time you purchase them, and that’s all before you hit complications and require special underwear, belts, support garments and stoma protectors.
Then of course, there’s the medications. Which probably cost way less than the £7.65 per prescription that I would be charged if I didn’t get them free, but because they’re not available over the counter, that’s what has to be paid. All in all, I probably save well over a thousand pounds a year, which is a fair old sum. And there are people who save a lot more. People who need oxygen tanks and line feeding and injections (I was on injections before I had the bag that cost £357.50 a shot. I had to give myself one shot a week – see Dave, I’m saving you money! Lots of Crohn’s patients still need that injection.) and infusions and so many other things that I know nothing of. All adding up to that £9 billion plus that could be snatched back.
See? It’s a good idea isn’t it? If you come from a world where money doesn’t matter and you’ll never be short of it whatever you spend – like Dave and his friends do – it seems an obvious solution. I’m not telling him though, and I’d appreciate it if you didn’t, either.
Short of making the bankers pay for what they did to our economy, and if the benefits cuts don’t make up for the ridiculous resultant national deficit – which they won’t; no matter how many people end up destitute – this free prescription thing seems a sensible way for a heartless, ignorant, greedy government like ours to go. Not good for the nation, but then that’s quite clearly not an issue for them. Obviously, they’ll also have to cut the prescription prepayment certificate (PPC) option as well; where you pay a nominal sum – not that just over a hundred quid is exactly ‘nominal’ to people already struggling without their benefits – and all your prescriptions are covered. That’ll have to go.
It’s also clever, because a lot of people wouldn’t be able to afford the actual cost of their drugs and medical supplies – my husband works, we’re doing ok, but we’d find it tough – and would then either slip through the cracks or worse, and end up not voting at all, which would be great for the tories. It’s win win for them. Lose lose for the rest of us.
There is another option, obviously – a bit of work on shutting those tax loopholes that make it easy for all Dave’s fat cat mates to avoid paying the billions of pounds in taxes that would more than cover the cost of these ‘essential’ cuts. That’d do it. That’d put us happily back into the black and we could still subsidise the disabled, sick and poor. But that’s not the tory way.
Well, that’s my anger for the week purged. It’s exhausting though, and I do have a few Pethidine pills left, ready to take me away from the physical pain. Off to the world of unicorns and fairies and a decent, caring government. Opioids are grand – I think I’d even be happy to pay for them. But don’t tell Dave.
Thursday, 11 October 2012
This week, we are firmly in the present. In this particular present, I am in bed with a very painful gut and problems eating. I have hardly any energy and none of this is helped by the pneumatic drill outside my bedroom window that is redoing the work it messed up when it was last outside my bedroom window just a couple of weeks ago. I’m having a flare-up and Haringey council is having a fuck-up. This is not my best day. Fortunately, my pain will be under control when I take the requisite drugs later on, but that’s probably not the best way to write, so I’m doing this first. Thanks to the NHS, my pain will be relieved; if the flare-up continues for too long, I will go and see my lovely GI Consultant at the hospital. The IBD nurse has already called this morning to make sure I’m ok and that the pain relief is adequate. I love the NHS and I’m going to resist my usual political rant about this corrupt and morally bankrupt government selling it off in bite sized chunks to the likes of Richard Branson and Cameron’s pals from Eton. Yes. Resisting that. Because I’m actually going to vent my – strangely healthy – spleen on a different, though related subject.
I’m going to talk about Atos. It’s risky, I know, not least because I’m yet to have my DLA reassessment, but that’s also exactly why I need to do it.
I first got ‘awarded’ DLA in 1992 – I don’t remember the date with any clarity, but I know that’s when it was first brought in, combining mobility allowance and attendance allowance, neither of which I’d ever received. I do remember the day the doctor was sent round to assess whether or not I was eligible. At this point, I was pretty sick, though also pregnant. My Crohn’s had been up and down, but my energy and stamina were mostly down. When the doctor came round, I was in bed. Husband sat next to me, on the bed, and the doctor sat in an armchair at the foot of said bed which was, to be precise, a futon, so he was actually looking down at me. At us. Without having discussed it previously, husband and I found ourselves doing a good cop/bad cop routine. I was saying things like, ‘Oh, it’s not so bad, I still have a pretty good life,’ after which he would look at me, aghast, and say words to the effect of ‘Are you insane? You can’t even lift a pan of vegetables off the stove.’
The thing is, I don’t like that; I don’t like talking about what I can’t do. I never have liked it. I much prefer to focus on what I can do; that seems to me a healthier and altogether more positive way to live. But in this climate, with this unelected government, with that bastard Osborne promising this very week to cut benefits by £10 billion (and don’t get me started on Cameron), I have a feeling it’s what I’m going to have to do. What I should do, if I don’t want to lose my teeny tiny share of what will be left of that benefits pot. I don’t hold out much hope; we’ve all heard the horror stories of the ESA reassessments.
Of course, if my reassessment was today – if one of the Atos lackeys was to knock on my door and come in to make sure I’m not conning anybody this afternoon, I might stand a good chance of keeping my benefit. Or rather, getting the new one – the PIP, or Personal Independence Payment. It’s not a reassessment according to the government, of course – it’s a completely new assessment for a new benefit that replaces DLA (Disability Living Allowance) but isn’t the same. Clear? No, me either. And there’s no chance of them knocking on my door today because Londoners aren’t due to be reassessed, assessed, checked up on or pushed off of DLA/PIP until June of next year. So until then, I’m safe. Which is kind of annoying, because on days like today it’s all I can do to lift a hardback book. If I needed to get to the hospital or the doctor’s, I’d have to either drive – which I probably couldn’t, and obviously shouldn’t once I’ve taken my pain relief – or be driven; either way I’d be grateful for my blue badge that means I can usually park near enough to these places to manage the walk in without wanting to lie down on the pavement and cry. This is one of my very bad days.
But there are other days – more of them since I had the bag then there used to be – days that are amazing. Days when I can walk to and then around my local park, watching kids play and parents shout at them. When I can touch trees and feel grass between my toes if I take my shoes off. I’m thinking of summer days, obviously – they’re the ones I like the best. And I had a few of them this summer. I went with son to Waterlow Park and we walked and marvelled and watched geese on the lake (pond? Is there some kind of body-of-water delineation system? A size thing? It’s probably a pond) and then we sat down on a bench for a while and just people-watched. I loved those days, but I feel I can’t and mustn’t talk about them. I certainly shouldn’t write about them on a public forum like this. I should keep them a secret, possibly even lie and pretend they didn’t happen, for fear of being seen as that guy with the bad back who works off the books as a window cleaner, shooting up ladders, and then plays a round of golf, all while claiming a massive rate of sickness benefit. You know the guy – the Daily Mail and the Sun are always finding him. He lives down the road from that healthy bloke who has claimed enough benefit to buy a huge house with a pool and a villa in Spain. No, wait, isn’t that the politician who cheated his expenses – it can get so confusing sometimes…
Anyway, I’m not one of them. I’m not a scrounger or a politician – I’m not actually sure I know the difference between the two, except that one gets pilloried and the other gets a Cabinet position – I’m not one of the mythical 30% cheating on benefits either. I’m not even one of the 0.5% the DWP itself says is the real figure for people who are genuinely making fraudulent claims. I’m sick. Chronically ill with an incurable disease (see, just saying that is depressing – it’s not how I like to think of things; it’s certainly not how I like to think of my own life) that acts like most chronic disease in that it varies in severity from one week to the next.
Also, DLA – and the PIP that comes after it – is a benefit for people who work as well as people who don’t. It’s the only benefit I’ve ever claimed. I could’ve claimed sickness benefits at many points in the last decade or two – there have been years at a time when I couldn’t work, when I was too sick, when I was having or recovering from surgeries, but it never seemed right. I didn’t ‘need’ the money, in that we wouldn’t have been destitute without it, and for a while there I was still getting sizeable repeat fees from tv shows I’d written; husband had a lot of work, there were people who needed that money a lot more than we did. Those things have changed now, but I haven’t. I’m sick, but I’m well enough to write as long as I’m not having a flare-up like I am today. Today this post is as much as I can write and I shall probably fall asleep after I’ve typed the last sentence. After I’ve typed the last sentence and taken my morphine.
Ultimately, I refuse to buy in to this Atos-inspired way of thinking. I won’t accept that I should wallow in my disease and take to my bed for ever more so that they’ll give me a fairly small amount of money every week and allow me to keep my blue badge. What kind of a society is this that this Coalition is building? A society where those of us who are sick or disabled should be defined by those things? I will not do it. I’m not going to play. I’m going to carry on celebrating my good days – I’d shout about them from the rooftops if I didn’t have a fear of heights. And ladders. (Nobody’s going to catch me cleaning windows.) I will continue to cherish going out and having coffees and lunches with friends; I will carry on getting stupidly excited about using public transport and marvelling at the Oyster card system. I’m still going to get a buzz out of walking to the corner shop just a couple of hundred yards from my house – I say walking, it may look like that from the outside but in my heart it’s still so much of a novelty for me that I feel like I’m flying to the local Londis. After a couple of decades of not being able to do those things at all, I’m grabbing my right to love doing them with both hands and anybody who thinks I should do otherwise can go join the Tory party.
Is Atos really going to punish us for doing this? For trying to be well and ‘normal’, instead of sick and crippled and downtrodden? Is this what Cameron’s big society wants from those of us who aren’t completely able-bodied? Because if it is, there’s something far more rotten and insidious going on than anybody is admitting to, and certainly there’s more than enough horrors that we already know about. Like an inverse Robin Hood, this government is taking from the poorest and weakest and giving to the rich fat cats, and how can that be right? This isn’t meant to be a rant about government, though I suppose that’s an inevitable by-product; it’s meant to be a spleen-vent about the impotence forced upon those of us who just want to work and have that bit extra we need to live on, so that we can. Those of us who want to be well and functional and a useful part of society. Most of us, really, when you think about it.
It used to be that when DLA was assessed and reassessed – before I was granted it ‘indefinitely’, as I was some years ago now – they would ask about your worst day. If that’s still the case, then we might be okay. I might be all right. I – and thousands of others like me – might actually get PIP. But somehow, I suspect it’s not going to be that easy.
I’m going to take my morphine now and think about fluffy wuffy clouds for a bit. Goodnight.
Thursday, 4 October 2012
A while ago, I wrote a post about a bad nurse I had to contend with while I was in hospital last October. It got quite a lot of attention, and a few people wanted to know if I’d ever had a bad doctor. In terms of causing me physical harm, the answer would have to be no, but in other terms … well, there’s this:
For a short while, when my Crohn’s was behaving quite well, I thought that going to a hospital nearer to where I live in north London might be quite a good idea. It’s not that driving for 45 minutes to west London is a terrible ordeal or anything; it’s not, of course, though parking when you get there, knowing you’re gradually getting later and later for your appointment as you drive around and around the hospital, desperately seeking somewhere to put your car where it has a good chance of not getting either a ticket or towed away, can lead to a mild panic disorder. And yes, it would be easier in many ways to go by public transport, but in those days I didn’t have a bag and the possibility of my bowels deciding to evacuate without giving me any notice, let alone asking permission, was huge. The hideous embarrassment of that happening on a tube or bus, in front of an array of disgusted strangers, was a pretty regular subject of nightmares for me, and I wasn’t about to put myself in a position where it might actually happen. As it was, there were more occasions than I care to relate when I had to dash from my finally parked car into a hospital toilet and change all the clothes I had on below the waist. I’d fill myself up with codeine before every trip, obviously, but sometimes my bowel wouldn’t care. It would override all manner of bunging up precautions and just blow – I think it was begging me for an alternative route; trying to force me into agreeing to allowing it to come out through my stomach, to convince me I should have a bag, but I was in no mood to listen to it back then. Not for years and years, in fact.
Anyway, the brief sojourn at the north London hospital came to an end when they put me through a colonoscopy without any sedation. It was horrible, and I still have the hideous sense memory of a nurse snatching the gas and air mask (the only relief I was offered) from my hand and snapping at me that I’d had quite enough of that.
Soon after, I wrote a nice letter to the surgeon who’d looked after me for years at my original hospital, asking if I could go back and he quickly set me up with a GI Consultant there, who I happily went to see. The happily bit didn’t last long.
At my first appointment, this new Consultant was fairly brusque; he asked me how I was, I told him, he suggested I have a bag, I declined, he clearly thought I was an idiot. He didn’t tell me how well I was doing, considering the extent of my disease, as doctors usually did; rather, he sneered at me and told me I had to have a serious think about how ill I was. I held my own during the appointment, but left shaken and a bit upset, hoping that next time would be different.
There were a couple more appointments in a similar vein, during which time I started writing on a show that meant I had to spend a fair bit of time in Manchester. I felt quite well enough to do the work, and I was proud of how I was managing the schlep.
Then came the appointment with the pills. I hadn’t yet told him about my Manchester trips, sensing he wouldn’t approve. At this particular appointment, he did his usual lecturing, then pushed a bottle of pills across the desk at me and told me to ‘take these’. I asked what they were, and he answered – and I swear on everything that matters to me that this is true – ‘they’ll make you better.’ I told him that if there was a pill that could do that, I rather thought I’d have been offered it before that moment. He asked me if I was going to take them or not, and I said not if he wasn’t going to tell me what they were, what they’d do, and why I’d never had them before. He didn’t seem keen on doing any of that, so I looked at the label and saw they were Metronidazole – an antibiotic that has been known to help Crohn’s sufferers in some cases. I’d tried it before and it had made me throw up. I always felt constant diarrhoea was quite enough without throwing vomit into the mix, and anyway, they hadn’t done anything positive alongside the puking they caused, so there was no way I was going to take them again. He told me I had quite an arrogant attitude (with no sense of irony) and I left. This time I was shaking with fury and impotence. I called husband and told him what had happened, then cried all over the steering wheel, eventually pulling myself together enough to make the drive home.
You’d think I’d have stopped seeing him after that, but I didn’t. I don’t like to admit defeat; I determined that I would charm him on our next meeting, and make him see that I’m an intelligent person, well used to managing my own disease, and happy to work with any doctor. I wouldn’t mention that all the GI docs I’d seen in the past had been quite open about the fact that they didn’t know enough about Crohn’s to make any definitive statements; that they liked to listen to the patient’s experience and work with us to find relief. I’d dazzle him with how marvellous a patient I could be. That was my plan.
I walked into his office and sat down. I told him how well I was doing; that I was regularly taking the train to and from Manchester, going to day long meetings and getting scripts written. How I was balancing it all out with full days of rest every time I came back to London, and sat back awaiting his warm response to my honesty and pride in how I was coping. Ok, I didn’t expect a warm response from this cold fish of a man, but I did expect some respect; some acknowledgement of my attempt to live a relatively normal life despite having such a chronic condition. I didn’t get any of that. Instead, he told me I was ridiculous. ‘You’re a very sick young woman’, he said, ‘Why are you pretending not to be? I don’t think you can be doing all this travelling to and from the north like you say you are.’ Apart from taking a brief millisecond to recognise that it was nice to be called ‘young’ when I was in my 30s, I was gobsmacked. I didn’t answer. I just stared at him, which he took as his cue to continue berating me for … well, I’m not sure for what. For not taking to my bed and lying there with a hand on my forehead whimpering for the rest of my days, perhaps. For not bowing and scraping to him whenever I saw him, maybe. I had no real idea, but I left soon after for what I swore to myself would be the last time. Back in the car I kicked the doors, shouted in fury, not caring what I must look like to anyone passing by, and finally threw myself across the passenger seat, sobbing. I couldn’t and wouldn’t go and see that man again. I’d rather not see anyone, ever.
Back at home, I composed a very long letter to my aforementioned surgeon describing in detail how this doctor had treated me, stating that out of respect and gratitude to him for saving my life so many times, I was writing to him rather than complaining directly to the hospital, and asking what he thought I should do next. If he could perhaps arrange for me to see a different consultant, or if I should in fact write to the hospital. He wrote back a very apologetic and flattering letter, enclosing an appointment with a new GI Consultant for two weeks later.
I went to that appointment with not a little trepidation. I’d never feared meeting a new doctor before; I like meeting new people, hearing new thoughts, and until that last unpleasant experience, I’d never met a doctor I hadn’t got on well with. But that last guy had me shaken and unsure and so I was a bit of a wimp of a person when I walked into the new Consultant’s office. He stood up to say hello, took my hand, and smiled warmly. I glanced at his desk – the letter I’d written to my surgeon was sitting there in all its glory; with all my furious and disgusted comments about a man who must surely be his colleague. I was mortified. I had to say something. ‘I didn’t realise you’d be seeing that.’ I said, quietly. He laughed. ‘It’s fine,’ he assured me. ‘What’s not fine is the four volumes of notes you’ve got..’ He indicated the teetering pile. ‘Can you give me a brief rundown of what’s happened so far?’ I sat down, feeling comfortable; I liked this guy already. I told him how many surgeries I’d had, pointing out that he might have to check with my surgeon to make sure I hadn’t missed any – there were a few years that were a bit of a blur. ‘I had my last op in 1990,’ I told him, fairly sure I was right about that, ‘Then, against all the odds and quite a bit of advice, I had a healthy son in 1992,’ I paused, feeling quite proud of myself as I realised the enormity of that statement and he smiled back. ‘Name?’ he asked. I was confused; he’d forgotten my name? Really? He could see I was struggling, ‘Your son’s name..’ he said. And I felt a warm glow. Instead of a Consultant who thought I was some kind of stupid fantasist, I was now sitting with one who cared about what I’d named my child.
As I left his office feeling relieved, happy, slightly adoring, I said, ‘Thank you so much; you’re way better than ..’ and I named the other – evil – Consultant. He laughed as he shushed me, saying, ‘He’s in the next room.’ I didn’t care.
11 years later, I still see this lovely Consultant and sometimes, when I’m sitting in the waiting room, I watch people go in to see the evil Consultant and marvel when they don’t come out of his office in tears. I suppose they’re behaving unwell and self-pityingly and therefore pleasing him. I like it my way better.
Thursday, 27 September 2012
Last week I just about brought you up to date – I didn’t give you the results of the MRI, because I haven’t had them yet. I can only imagine that if they were serious in any way, I would’ve been called into the hospital; I always have been before. In the meantime, my next appointment isn’t ‘til December. As I’ve said in previous posts, admin’s not the NHS’s strongest point. If I do have any problems, though, I know I can just email or call my IBD nurse and I’ll be seen within a few days – no admin, you see; just a nurse with a proper understanding of Crohn’s Disease and an extraordinary commitment to what she does, and the patients she helps. She’s like some kind of superwoman, and I can depend on her totally. At least I can for as long as the NHS realises how important she is and continues to employ her, but I shall resist repeating that rant this week. The point is, we don’t need to worry about the MRI for now.
What I thought I’d do is take you into the past. Make like Dr Who, only with a very linear selection of destinations and no tardis. To give you an idea of just how hard I fought not to have the bag that I now cherish and with which I couldn’t be happier. What treatments I tried in order to avoid having to undergo surgery. Like many sufferers of inflammatory/immunosuppressive chronic diseases, the default drug for me, for several years, was prednisolone – the king of all steroids. Evil little bastard of a drug, but so effective in its way. When it works, it works fast and efficiently, but boy does it give payback. At the beginning it’s kind of amusing – when I first took it, I ate continuously for 8 hours one night, much to the delight of my then flatmates. A decade or so later, I was on it for 7 years’ straight, then off and on for months at a time. I was lucky not to lose bone density, but I have had most of my teeth crumble and fall out, my hair is thin on my head, and thick everywhere else, which is not what any woman wants, and I have extra weight hanging around my body, thus negating the one benefit of Crohn’s I used to enjoy – a slim silhouette. These days I’m more Reubens than Modigliani, though I don’t imagine either of them would be in any hurry to paint me. And not just because they’re dead.
Once steroids and the various other anti-inflammatory options had been exhausted, new ones started to show up. I tried something called thioguanine in a trial of 400 people with IBD. One day I had a blood test result that filled my Consultant’s room with research doctors all looking stressed; it seemed I’d screwed up the whole thing by being the one patient whose liver function tests had come back abnormal. It turned out to be cysts on my liver, which disappeared quickly enough when I stopped taking the drug. And then, one day when I was beginning to despair of ever feeling well again, I was told about Infliximab (Remicade in the US).
It was in the early 2000s, or at the turn of the Century as I like to call it, blocking out my generation’s vision of that as a time of empire, Boer war and the end of Queen Victoria’s reign (that’s the turn of the previous century), and replacing it with images of the internet, tiny mobile phones and disappointment that we still didn’t have jet packs. And then there was Infliximab, Which, rather hilariously, was partly made from mouse genes. Yes, you read that right. I was to become part mouse. A very tiny part, that probably wore off quite quickly, but you know – mouse genes. Weird.
I was to get Infliximab by infusion – which is not in a nice cup of boiled water like a herbal tea, but through an iv in my arm over a period of 2-3 hours. It had only recently been approved in the UK as a Crohn’s treatment, so everyone was very excited, and I’m pretty sure I was one of the first of my Consultant’s patients to try it. Lots of IBD patients use it now – these days it’s often given in combination with other powerful, toxic drugs that pretty much mean Crohn’s patients are having chemotherapy for their disease. It seems to work. Back then, my Consultant was very careful – he warned me that my immune system would be almost completely knocked out and that for a few days after each treatment I should pretty much hibernate. My son was about 9 at the time and therefore, together with his friends, a veritable germ factory, probably carrying all manner of bacteria gathered each day at school. We kept an antiseptic hand gel on the hall table that everybody had to use when they entered the house, and for those few days after each treatment, no other kids were allowed to visit. If husband or son so much as sneezed they couldn’t come near me. We took that warning very seriously. Nowadays, I understand, such measures aren’t taken or even recommended, but this was a brave new world of putting mouse particles into human bodies and caution was the name of the game.
My first treatment was boring. I lay on a bed in a day room, talking to the nurses when they had the time, listening to the psoriasis patients who were more experienced Infliximab users as they shared gruesome details with each other, grimly aware I was the only one there who had Inflammatory Bowel Disease. The second time I took son’s iPod.
I had the treatment once every two months, and it would wipe me out every time; I’d spend the next 6 days unable to do anything, then suddenly I’d feel well. Strong. I’d get up and go out and about. I took son to the Natural History Museum for the first time thanks to Infliximab. It was such a huge deal that my Consultant wrote it in my notes. It was a bit odd that son had to show me around (I hadn’t been there since my own childhood) but I can’t tell you what a joy it was as well – seeing the excitement on his face as he led me through a room full of pickled animal foetuses before skipping ahead, calling back directions to the rather impressive sight that was the (huge) blue whale. I was very happy with this Infliximab treatment, if a little disappointed that I didn’t find myself constantly craving cheese.
During my 9th treatment, I started to become breathless after about an hour. By this time, I was having the infusions on a small day ward with me usually being the only one there. I would get the sporadic attention of two nurses – one, the ward sister, was always there, together with one of a small pool of sweet, newly qualified nurses who were usually happy to chat, but not always terribly good at getting the iv in. When I had the breathing reaction, the ward sister was super-efficient, turning off the iv, calling the Consultant, waiting for instructions about what to do next. In the end, it was decided to give me some piriton and continue the infusion, only more slowly.
On the 10th treatment, I got breathless again; this time much sooner. I felt a bit odd with it too - light-headed, heavy chested. The ward sister administered the anti-histamine again and stayed with me as it flooded my veins, making small talk about nothing very much. This woman was an excellent nurse, but a tough nut to crack when it came to conversation.
And then came treatment number 11. This time I was having the piriton from the beginning, alongside the Infliximab. And something else had changed; the ward sister pulled up a seat next to me and started her usual meaningless chatter, but then she moved on to other subjects. More personal subjects. I was about 12 minutes in to the infusion when she started to tell me – haltingly – about her difficult relationship with her mother. I love it when people do that; open up and tell me stuff, and I was aware of how unusual it was for this particular person to be doing it. Which is why, when at 15 minutes in I started to feel a whole new kind of reaction, I didn’t just come out and say so. I felt it would be rude to interrupt her. Sometimes, for a mouthy Jewish chick, I can be too damned English for my own good. It wasn’t until I felt as if a huge weight – a comic strip anvil was the only comparison I could think of – had just landed on my chest, that I broke into her conversation with a hoarsely whispered ‘something’s not right’ as I fought to keep breathing. I have to say, her responses were lightning fast – she switched off the infusion, shouted something that resulted in two nurses being by my side in milliseconds, together with a crash cart; they were ripping my clothes open, sticking things on my chest, and actually charging paddles. Really. Like I was in an episode of ER with less attractive medical staff and no George Clooney. It was hard to believe or understand that it was really happening, and at the same time all I could think was that I hadn’t hugged son hard enough or long enough that morning before he went to school. How was he going to feel when he came home to find his mother was dead? He’d be so pissed off with me; I’d promised to take him to the zoo the following week. And then suddenly I could breathe again. The paddles were put back on the cart, having not been applied to my chest and everyone started to relax a bit.
The Consultant came to see me and I texted husband a not very reassuring message saying things had gone a bit wrong. I then sent him another one telling him I was ok. He’d gone into town, having dropped me off and knowing I’d be several hours, but made his way back to the hospital pretty quickly. In the meantime, the ward sister filled in a yellow form, while the Consultant sat on my bed and told me I could no longer have Infliximab. That he would do some research and try to find a way of getting me something else instead. There was a new treatment in the US, he said, that hadn’t yet been approved for IBD in the UK, but he’d see what he could do.
‘There is always the other option,’ he reminded me, as he did every couple of years.
‘Forget that,’ I told him, as I always did. ‘I’m not having a bag.’ I was a belligerent, wilful brat of a person back then. And I would stay that way for another 10 years. Only then becoming the warm, fuzzy, chilled-out sweetie-pie you know me as now.
Thursday, 20 September 2012
My flare-up was over, but there was still the MRI to get through. I decided I might as well have it, as it would tell us if there was anything going on that I should be worried about. Not that I particularly wanted to worry about anything, but I liked the idea of finding out I didn’t need to. If you see what I mean.
The day came. I wasn’t in pain any more. I wasn’t in the mood for schlepping to the hospital, drinking something horrible and hanging around for several hours either, but it had to be done. Husband drove me there, and went off to wander around Paddington for about the thousandth time since we first met. (He wants you to know there's fuck-all to do in Paddington, though the coffee buying options have improved slightly since 1988.)
I went to the wrong unit, of course – I went to MRI/Acute Imaging, down in the dark bowels of the old part of the hospital, when I should have gone to MRI which was at street level, with floor to ceiling windows (the reception bit, that is – not the MRI room). When I got there, they were indeed expecting me. There was one other person waiting – a young woman – and I smiled at her as I sat down. A nurse came out and told us both we were going to have to drink a litre and a half of water containing something called Mannitol, which was supposed to make the bowel easier to photograph. I’d had it before and knew it to be almost disgusting. It kind of tricks you, in that it tastes like ordinary water and just as you’re thinking, ‘ooh, that’s fine’, the sickly aftertaste hits and you realise it isn’t fine at all. It’s quite a long way from fine; it’s actually quite revolting. I smiled sweetly at the worried looking young woman and told her it was fine. I did tell the nurse I had a bag, and wondered if that maybe affected how much I would have to drink, what with having no colon and all. She agreed that I would probably need to drink less, and I tried not to look too smug as I encouraged the worried young woman to drink up. We started to chat as we sipped, and she turned out to be Portuguese. She’d recently started having bowel issues and this test was supposed to tell her if she had Crohn’s or Ulcerative Colitis. She was clearly scared, and I tried to be positive, telling her how Crohn’s could be quite benign if she was lucky, and that I was unusual in having ended up with a bag. I didn’t want her to be frightened, and I reassured her that I’d lived with Crohn’s for 28 years before having said bag, and that anyway my life was so much better now I had it. I wanted her to feel safe; not to be so frightened. She was young, with two small children, and seemed very sweet. At first.
She told me about her kids, her husband, how she’d moved from Portugal because her husband had been offered a better job here in the UK. She kept interrupting herself, giving in to her fears of bowel disease, and I kept trying to make her feel better. At one point, I was waxing lyrical about the value of a good GP, stating that mine is excellent, and she looked undecided for just a split second, before telling me that her GP was useless and clearly didn’t care about her. ‘She’s ….’ She said. I didn’t catch the second word, because she said it under her breath, almost whispered it. I leaned in closer and asked, ‘She’s what?’ This time, she was only slightly louder. ‘She’s Indian.’
What do you do? What do you say? She was scared for her health, and about to undergo a procedure she knew little of, which also frightened her, but really … how could I let that go? ‘I don’t see why that would be relevant,’ I said, after a very long pause during which I had to try to work out how I wanted to handle this. ‘My doctor’s Asian and she’s absolutely brilliant.’ You’d think that would be enough wouldn’t you? Enough to make it clear that I didn’t share her opinion and that she should perhaps move on. Apparently not. ‘She’s fine with people like herself,’ She continued, ‘But if you’re white, she’s not interested.’
I couldn’t get into a fight with her; what would the (white) receptionist think? He was alone out here with just the two of us. Anyway, I knew from experience that I was no more likely to change her mind than she was mine (I’ve met an extraordinary variety of bigots over many years of hospital internments). But a plan did occur to me. All that reassurance about Crohn’s I was doing – it was time to change tack. ‘The bag leaks sometimes,’ I told her, ‘It can happen any time, anywhere … so embarrassing.’ And I moved my hand under my top, as if making sure it wasn’t leaking now (of course it wasn’t). ‘There are some pretty debilitating drugs they’ll probably try you on,’ I added. ‘You know, as a first port of call – steroids for instance ..’ And I told her about all the side effects of steroids – the puffiness, the weight gain, the thinning of the bones, the hair loss and – contrarily – the hair growth in areas a woman doesn’t need any hair growth. The crumbling teeth and inflamed gums … the mood swings and the constant hunger … By the time I was called in for my MRI, the Portuguese racist was looking terrified. And I didn’t mind a bit. It wasn’t like I’d lied to her; I’d just decided to go with the negatives. And I’d let her off quite lightly really – I hadn’t talked to her about the endlessness of chronic disease; the days of exhaustion and misery; the frustration of invisible illness, where nobody can see you’re sick so they find it hard to accept that you are. I didn’t even get started on Atos and benefits. But I’d done enough; I was satisfied.
I’d forgotten how enclosed the MRI machine was. How they tuck you into it, like a parcel in a package that’s a tad too small. I remembered the noise – the incessant banging, the cause of which I’ve never quite understood. It’s so loud. They usually offer you headphones with music, but the only time I tried that, I could still hear the banging, which was kind of worse. This time, the headphones were so that they could tell me what to do – breathe in, hold it for 15 seconds, that kind of thing. The nurses in there were lovely, and – bizarrely – all white with blonde hair. I grimly thought to myself that Ms Portugal would be happy with that. In the machine, I tried to find a Zen place to put my brain; I noticed a digital screen with my information on it above me – my weight, my date of birth, hospital number. That was new. I tried to find the capsule womb like; the colour was wrong, but I managed it. I’m not generally claustrophobic, and I can cope with these things fairly easily. What I can be a bit neurotic about is my bag. It was probably my own fault for bringing it up with Portugal woman, but I became convinced the bag was leaking. There was a weighted cushion thing on top of it, and I was paranoid that it was forcing poo out from under the flange and onto my stomach; at times I was convinced I could feel warm poo dribbling down my belly. I didn’t mention it, because I was too busy holding my breath and trying to imagine I was in a womb, but it was winding me up no end. After a while, they told me a doctor would be in to give me an injection of Buscopan, which is an anti-spasmodic. It’s an anti-spasmodic you can buy over the counter; it’s advertised on television, so why I needed a doctor to inject it I don’t know. Of course we had to wait for said doctor and when he arrived, I couldn’t see him, but the nurse said ‘Dr Bannerjee will inject you now’ and it was all I could do not to holler with glee at the thought of Portugal woman hearing that same sentence.
A few more minutes back in the ‘womb’ and it was all over. They took the weighted cushion off of my bag, and I was relieved to find nothing had leaked out from anywhere. As I lay there being unstrapped and subsequently helped down from the conveyor belt bit I’d been attached to, the screen above me changed from my details to Portugal woman’s. The bitch weighed a full 10lb less than me. Perhaps racism’s good for your weight? More likely, she did have Crohn’s. I once went down to five and a half stone when I was very sick. Luckily for her, the NHS treats everybody in this country. Even racists. Even racists from other countries. Of course, all that is about to change, but it won’t be people’s views that exclude them from healthcare. It’ll be our finances. Thank you so much Messrs Lansley, Hunt, Cameron and Clegg.
Racists and the dissolution of the NHS aside, I was feeling awful. I felt tired and ill, and I could still taste the disgusting drink I’d had to force down. I wanted to be home and in bed.
On the way back to meet husband at the car, I passed a guy on the phone outside the main hospital entrance. ‘He just went in for a routine surgery,’ he was saying, ‘then he got an infection and they had to amputate his leg. He’s on a ventilator now, but it’s looking quite positive.’
I remembered then how lucky I am. How lucky we all are as long as we have the NHS. How very horrific our lives could become if the Tories’ plans to sell it off to Richard Branson keep on going, unchecked.
Having said which, there are flaws with the current system – I’ve said it before – and the better thing for any government to do would be to fix those flaws, rather then sell them off and make them somebody else’s problem. In my experience, a large percentage of those flaws come down to administration. For instance, that MRI was on July 6th. I still haven’t had the results. I wonder if the Portugal racist’s had hers.