Thursday, 13 September 2012
No Appointment Required
It was mid May, my proctectomy surgery – the one where they took out my rectum, sewed up my anus, rendered me unable ever to fart again; I may have mentioned it before – had been back in October of last year, and the ileostomy had been the September before that. I’d had a bag for close to 20 months, and yes, I realise I’m doing that parents with their first baby thing. More than a year old, less than two I might say if I’d had several stomas, but I haven’t, I’ve had one, and at this point it was 20 months old and if you don’t include the aftermath of two fairly massive surgeries, I’d been healthy for all that time. Which is why I was taken by surprise when, in mid May, very late one night/early the next morning, I was woken in cramping, crippling, I’d scream if I could but it would only wake up husband and teen and they’d be grumpy and worried kind of pain. Horrible, burning, shrieking, dagger through an open, festering wound type pain. Nasty, evil, hideously familiar pain. It had only just started, and I didn’t want to jump to any conclusions, but this felt a lot like Crohn’s pain.
I knew having the bag wasn’t a cure. Crohn’s can affect the entire digestive system from mouth to anus, but I’d had a lot of that removed by now. No colon, no rectum, no working anus. I’d had Crohn’s in the ileum before now, and had the infected parts of it removed. In fact, when I’d had the ileostomy operation originally, there was a bit of ileum stuck to a bit of my stomach in what’s called an adhesion, so the surgeon had had to cut that out before he made the ileostomy. I knew my Crohn’s wasn’t limited to the chunks of intestine that had been removed, but I had hoped… I’d had nearly four years in bed before I’d agreed to have a bag (it takes a while for me to work out what’s the best way to go sometimes), and the whole of that time I’d been in various awful types of pain, all caused by Crohn’s. And then I hadn’t. I’d had a bag, which had made my life so much easier in so many ways, but the biggest of those was that I had no more pain. I’d woken from that operation with post-surgical soreness, obviously, but no Crohn’s pain. I’d hardly needed the morphine they were pumping into me; the post-op stuff was honestly so much less awful than the relentless Crohn’s agony I’d been living with for all that time. People who saw me straight after that operation said my face had changed instantly; the grey pallor gone, the drawn, stricken look now absent. Not that anybody had told me I looked pasty and miserable when they came and hung out with me on the bed that was the centre of my existence for nearly four years. And how I’d loved it, revelled in it – that new, liberating painlessness I’d had 20 months to grow used to. And how I despised this new, and oh so recognisable agony that was gripping me and my gut in the dark night.
I tried to get up, but found myself bent double and almost crawled to the bathroom to check on my bag; to see if I could find an obvious cause for the pain, something I could quickly remedy, and no, I don’t know what that would have been, but you have to understand the fear, the horror, the sheer terror at the possibility that the Crohn’s was back.
By morning, I knew it was back. It hadn’t subsided at all, and drinking my coffee hurt; eating my banana hurt. And it wasn’t just eating either – not eating hurt as well. Everything hurt. Lying still, sinking into a Pethidine haze was the only thing that helped, and that only helped a bit. With the Pethidine working, I emailed my IBD nurse, telling her what was going on, and asking if I should see my GI Consultant. Within an hour, she had written back with an appointment for the following week. I allowed myself to hope that by that time, my own prescription to myself of total, profound rest would have seen it off. I called my GP too, and she asked me to come in the next day. I did, she gave me a prescription for more Pethidine (this was an emergency, and while regular readers will know I’d been off it for quite a while, there seemed no other option at this point), and palpated my tummy while I said ‘ouch’ a lot, confirming my own diagnosis of a Crohn’s flare-up. Just a flare-up. That’s what I was telling myself, that’s what we agreed was the best hope, that’s what I’d decided I was having. A flare-up can last for anything from a few days to months on end. I was aiming for the ‘few days’ option. Given that I now had no choice but to accept that I was actually having a flare-up.
Nine days later, I had my GI appointment, and the Crohn’s was still flaring angrily. I’d done nothing but lie in bed – quite angry myself - getting up only for bag emptying and changing, peeing, and showering (not at the same time). Other than that, I lay flat, my laptop next to me so I could do Twitter and Facebook and feel like I was at least connected to the world by something, even if it was just wifi. Never underestimate the value of social media to the chronically ill; we can hang out with friends, make jokes and pretend to be ‘normal’, if we choose, campaign and rail against government, the media, and anybody else who winds us up when we need to, commune with other people suffering as we are when what we need is empathy from someone who ‘gets it’. I get all of that from my laptop, lying in my bed. It’s bloody extraordinary when you think about it. Tim Berners-Lee (no relation, sadly) is a true hero for getting it together and giving the internet to us for free. Well, except for the ‘service providers’ who have found a way to charge us for it – I don’t imagine he expected that to be how it ended up, but it seems churlish to complain about it now. And I am meant to be telling you about my visit to the Consultant.
I adore my GI Consultant – I had an awful one before him (which I will do a post about at some point, because I don’t think you can overestimate the importance of a good Consultant when you have a chronic illness) so I’m always aware of how lucky I am to have such a great one. He’s about my age, married with kids, and we talk about that stuff, as well as about Crohn’s. And politics and the NHS. It’s tedious only to talk about illness when you see someone so often. This visit was very much about Crohn’s though, so again I allowed a medical professional to palpate my pain-ridden tummy while I tried not to gasp and make him feel bad for hurting me. I’m not sure why I do that, but I doubt I’m the only one who does. He agreed that I was having a flare-up and I told him my GP was concerned about what to give me for the pain. He wrote me a prescription for more Pethidine for when my current supply was finished, said he wanted me to have an MRI and suggested I visit the pain clinic.
I was dispatched with my MRI form to the radiology unit, which had moved since my last scan and was now situated in the bowels of the oldest part of the hospital. There are labyrinthine tunnels down there, all signposted confusingly, if at all, and it took me ages to find it. First of all, I stopped at the pharmacy, which was also in one of these windowless rat runs, and there I handed in my prescription for Pethidine, showing my card which proves I am entitled to free prescriptions – for the moment. The selling off of the NHS by our current, toxic government that wasn’t even elected, is one of the more frightening things to happen to our country in my lifetime, and I fear for how this will affect those of us with chronic disease who need regular multiple prescriptions. If I had to pay for everything I need – bags and all their accoutrements, as well as the medications I am on just to get by - husband and I would be in serious financial trouble. Even more than we will be in when my DLA benefit is cut by Atos, as it surely will be. But that aside, the pharmacist was very nice as he told me they didn’t have enough Pethidine to fill my prescription. I went to the radiology unit next – remember I am in terrible pain at this point; schlepping through endless corridors trying to look ‘normal’, instead of heeding what my body was screaming at me and bending double as I walked, despite having the full complement of painkillers on board – finally arriving at a closed door with ‘Radiology’ written above it. I had to press a button to get in, and wait for the receptionist to finish a call with a patient before I was finally able to hand over my request form.
‘I can’t take that,’ she told me. ‘The doctor should have put it through the internal mail; we’ve changed the system.’ I do love the NHS, but I also agree with those who think it can be improved. I don’t, however, see how selling it to Richard Branson will achieve that. Anyway, she was nice this receptionist, and she took my form in the end, telling me not to do it this way next time. As though it had been my choice. I asked how long it would be before I got my appointment; that the doctor had hoped it would be within a week. ‘Oh no, we’re running at 4-5 weeks at the moment.’ She told me.
In the end, I was in bed for 3 weeks in total, in agony. My pain clinic appointment came through for four months later (excellent work), but my original self-prescribed rest and Pethidine technique did work. One day I felt better; I got up, I went for a coffee, the next day I did a bit of food shopping – ooh, my life was getting exciting now. Gradually, it became clear that I was on the mend; the flare-up was subsiding. The MRI did indeed come through for 5 weeks later – by the time I had it, the pain was completely gone. If that’s what did it, I’d like that appointment more quickly next time.