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.