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.
