Sometime after I’d had the first surgery, a friend who’d had
a temporary bag in the past suggested I look into joining the Ileostomy
Association, which is – well, you don’t need me to explain; it does what it
says on the bag. It’s an association
for people with ileostomies. For
many years I’ve been a member of a similar Crohn’s (and ulcerative colitis)
association but all I’d ever done was read the newsletters; my Crohn’s has
always been pretty severe, but I live with it, and I really never much fancied
the idea of hanging out with loads of other people with inflammatory bowel
diseases, talking about being ill. Particularly when I was likely to be sicker
than most of them. So I kept up
with the new drugs and read the odd story I could relate to, but other than
that, I stayed away. This was
different though; when it came to ileostomies, I was a newbie. I could learn from those more
experienced than I, so I found the website and joined online, which is when I
noticed a button marked ‘forum’. I
clicked it, and my life changed. I
know that sounds dramatic, but suddenly I was speaking to people in the same
position as me, people way more experienced than me, and everything in
between. When it comes to it, the
doctors and surgeons and nurses can tell you a lot, but nobody knows the
experience of having an ileostomy like people who’ve got one. And while I was very lucky to have a
couple of friends with permanent bags, and a couple more who’d had them
temporarily, those people aren’t always available, and this forum gave me
everything I needed at the click of a button. My first post was about leakages and the advice I got on
there was the advice that finally solved my initial leakage problem. After that, there were a few people I’d
‘chat’ to on there regularly; I felt like I had a safe place to go when I
needed ileostomate advice. A
virtual community I could hang out in when I needed help. And after a while, I found myself
helping other people too, which I have to tell you is far more satisfying. When the proctectomy first reared its
head, I posted on there about it and got lots of advice and opinions, all of
which helped in some way.
Including a piece of terminology I shall treasure forever.
To reiterate, and if you don’t remember or don’t know, I
shall tell you exactly what the proctectomy entails. It’s the removal of the rectum and the sewing up of the
anus. That means your bum is sewn
up. There is no longer any exit
site between your buttocks. Hence
no possibility of reversing the ileostomy and going back to a ‘normal’ pooing
routine. As I’ve said before, it’s
the finalisation of the post of baglady.
Or bagperson. It means it’s
all forever. It means you have
what the people on the Ileostomy Association forum call – and here it comes;
the fantastic terminology - a Barbie butt. For obvious reasons.
It’s great though, isn’t it?
I guess for men it’s a Ken butt, though clearly that doesn’t sound as
good, which makes this one of those cases where it’s far better to be a
chick. Because you get to have a
Barbie butt. I was going to have a
Barbie butt. And I found this out
on the forum. My safe place. The place I was bound to go to with
whatever questions I might come up with about the operation that would end with
my having a Barbie butt.
My question was about waxing. As a woman of a certain age, I have hair where I’d hoped I
never would, and a surgeon was about to sew up my anus. Wouldn’t it help if maybe I had my bum
waxed, I wondered? It’s not as if
I was gorilla-like, you understand (and apologies for over-sharing here), but
there are hairs and I was concerned that they might get in the way. In my post, I said all that, and asked
if anyone had thought the same, or even had it done? Usually on that site, you get a reply pinged back within an
hour or two of posting. I
didn’t. I didn’t get a reply for
the next two days, and I was mortified.
There were people on there – complete strangers, I know, but still –
with whom I’d discussed the most intimate of things. I’d seen younger women, not yet in serious relationships,
discussing the best sexual positions to get into when you have a bag, and how
to bring it up with prospective partners.
I’d seen people discussing anal-vaginal fistulas that wept copiously at
the most embarrassing moments, not to mention all the obvious stuff I’ve spoken
of myself in this blog many times – the poo, the macerated skin, the various
bizarre behaviours of the stoma itself; the stoma being a bit of intestine
which is on the outside. Intimate,
surely. Yet now, it seemed, I’d
found the question that must not be asked. The discussion that could not be had. In an age where young women regularly
wax their entire bodies (and we won’t go into that now, but yes of course I
have an opinion on it, and you can probably guess what it is), nobody was
prepared to discuss the possibility of a woman in her forties getting a bit of
rogue buttock hair ripped out by the roots. I toyed with taking the post down. I emailed the one member of the Association that I have an
‘off-site’ relationship with, and whilst she found it funny, and was of course
sympathetic, she asked me not to take it down, on the grounds that the whole
point of the site was that we should be able to discuss anything. She was right, I know, but honestly,
every time I thought about it my cheeks (not those ones) heated up as though
everyone in the world had read my post, come round to my house and was standing
outside my door, waiting for me to go out just so they could point and laugh
and judge me. Finally, on day 4, a woman of a similar age, who was also about
to have a proctectomy, replied to me.
She said she hadn’t thought of it, but now that she had, she thought
she’d probably have it done, too.
That it was probably going to make things easier when it came to
stitching. Then a second person
wrote and mentioned the possibility of ingrowing hairs, and wouldn’t that make
things worse considering what was already going to be going on down there? I
replied that I thought it might be worth it, all in all, and there the thread
ended. Nobody ever added another
post to it. And I did what I
should’ve done in the first place; I asked the lovely lady who waxes my legs
and she said she often did women’s buttocks – turns out much younger women get
hair there, too – and that she thought it was a very good idea, and why didn’t
I check with my nurse? I decided
I’d checked with all the people I could handle checking with and asked her
about the ingrowing hair situation; she said she had the perfect cream to make
sure that didn’t happen and promised that if, after that, I did get any
ingrowing hairs, she would come round to my house and sort them out herself, so
I asked how close to the surgery I should have it done and she reckoned 5 days
would give the skin enough time to recover without the hair growing back. So, that’s what I did. As well as fitting in all the lovely
things I indulged in those final two weeks before surgery on the 26th
October last year, I also had my bum waxed. And if you’re thinking of having it done for any reason, let
me tell you it hurts a lot less than the bikini one.
In my compulsion to be completely prepared for this next
surgery, I became fixated on a broken spring on our mattress; how could I rest
on a bed with a broken spring, when my arse had just been sewn up for goodness’
sake? Never mind that the spring
was nowhere near my bum, or indeed even on my side of the bed, it had to be
rectified. So we bought a new
mattress which we couldn’t afford, and I had my buttocks waxed – as well as my
legs while I was there; would’ve been churlish not to – and all of a sudden it
was the day before. It was October
25th. And when the
phone rang and it was the hospital I felt sick. Surely not another postponement? Didn’t they know I was spending the day chilling out at
home, finishing off the book I was reading, choosing my last meal for a while (sushi, thank you
for asking)? Was I going to have
to go through all this day before stuff again in another fortnight? ‘How far away do you live, Wendy?’ was
the question they asked once they’d told me they were calling from the
hospital. I told them about an
hour away by car, and they said I’d have to come in that afternoon so they
could take some more of my blood.
Apparently the blood that had been taken at my pre-op assessment three
weeks earlier had just been found to be ‘not enough’ to cross match for my
surgery the following day. It seems that years of blood transfusions meant my
blood was – and still is, I imagine – a bit of a complicated mess, and that it
would take several hours to process so that they would have the right blood
present at my operation in case it was needed. If I could get there in the next two hours, they should have
enough time to get it done by morning, when my surgery was scheduled. I started to protest; to question why
on earth this hadn’t been realised sooner? That I didn’t exactly have the time to lose a couple of
hours of my day, because I was due to have an operation in the morning, but
then I realised there was no point.
I either schlepped across town to let them draw blood, then schlepped
back, no doubt during the rush hour, and then got on with what was left of my
evening when I returned, or I didn’t have a proctectomy the following
morning. Obviously, we were going
to do the journey; my husband had the car keys in his hand before I was off the
phone. We had to go, I had to have
the surgery – I was fully waxed and ready for the off. In less than 24 hours I was going to
have a Barbie butt, and a couple of hours excised from my day wasn’t going to
stop that happening.
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