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.
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