Thursday, 19 January 2012

Avoiding The Bag

I’m going to enlarge on my feelings about the bag – I'll do after another time; this is mostly before.  Because when I say I spent 20 years avoiding having a bag, I’m really not kidding.  You’d be amazed at what the mind can come up with when you think pooing from the hole in your bottom is the only acceptable option.

There are varying degrees of Crohn’s; it’s actually quite an umbrella term it seems to me.  Some people with Crohn’s have one attack and never hear from the disease again.  Some have occasional diarrhoea and cramping pains, but not that often, and not that bad.  And then there are the rest of us:  the ones who have surgery after surgery, who try every alternative therapy going in a desperate attempt to ward off more surgery only to find themselves back in the operating theatre with the white liquid of anaesthesia being shot into their hand.  That white liquid is the only good bit, and the buzz it gives you only lasts a millisecond, so it’s not like it’s worth it.  My Crohn’s is of the pretty bad variety and when I was first diagnosed, I was asked how I’d feel about a bag.  I was 19 years old and still felt bulletproof; how do you think I felt about a bag?  I didn’t want one.  A few years later, I was taken down to surgery having been told I was about to get one – they drew the cross on my stomach where it was going to go, told my then boyfriend (now husband) to read some literature, assured me that I would still be able to shower, swim and have sex, and down to theatre I went.  When I woke up to find they hadn’t done it, I was jubilant.  Victorious.  Overjoyed.  And so very very relieved.  From then on, not having a bag was like a badge of honour to me.  I boasted about it whenever appropriate, which admittedly wasn’t that often; I secretly rejoiced in it when I was at home alone, and vocally rejoiced in it every now and again when I wasn’t; everyone who knew me and knew about my disease knew what an achievement I felt it was that I didn’t have a bag, and after a while my consultant stopped suggesting it, no matter how ill I got.

And then in the summer of 2010, when everything else had stopped working, when I’d been mostly in bed for three and a half years, when I was going to the toilet up to 28 times a day, eating pethidine pills by the handful and could stand it no more, I went to my consultant and brought up the bag myself.  Would it help?  Should I have one?  Because if it meant all this pain and bedridden crap would end, I’d quite like him to whip out my colon there and then, and yes, I knew perfectly well that he wasn’t a surgeon but I could see a pair of scissors in his nurse’s pocket.

The consultant was surprised, but everybody else was closer to gobsmacked.  My teenage son, who had been brought up on stories of my marvellous skill at avoiding having a bag was actually quite horrified.  And angry.  I hadn’t thought about that when I’d decided to be completely open with him about everything for his entire life.  Hadn’t thought about how he’d react when I backed down on something I’d proudly sworn I’d never do.  He was monosyllabic with me for a day or so – which wouldn’t be unusual in most teens, but was in my one - then finally admitted he was worried it would be disgusting.  That I would be disgusting.  That he’d be repulsed by me.  He couldn’t get his head around the idea that while we were sitting watching television together, I’d be pooing into a bag on my stomach.  I agreed with him; it did sound revolting, but thousands of people had done it so it must be okay and we’d have to just trust that we would cope.  He wasn’t convinced, and to be honest, neither was I.  I was terrified. 

In all the years I’d been pretending I’d never have a bag, despite knowing on some level that it was an inevitability, I hadn’t done an ounce of research.  I had no idea how it worked, what it looked like, what it really was.  I suppose some people would say I was in denial; I prefer to think I was just ill-informed. Really, I was much like most people in the world, but that was about to change.

Of course it was the superficial that worried me at first.  I was given a booklet about ileostomies and I saw my first picture of a stoma. It looked kind of like a small sausage.  It looked red and wrinkly, and more than that, it looked sore, although I was told it has no nerve endings so not only is it not sore, it has no feeling at all.  Whatever the truth was, I really didn’t want one of those on my stomach; it was ugly and it stuck out and it was my intestine which belonged inside and not out, and surely it was enough that I already had a tummy full of brutal-looking scars.  Did I really need one of those as well?  For some reason, I’d thought it would be a hole, not a protrusion. 

I’m not alone in this – I asked a few friends what they imagined it looked like and the answers varied from the hole type arrangement I’d envisaged to one friend who thought I had a metal tap-type configuration somehow imbedded into me.  The best – and actually the closest – answer was from my younger sister who was visualising a character called Cedric Sneer from an 80s cartoon called The Raccoons. I can’t seem to paste in a link, but you can google it if you’re really curious.

The operation was scheduled for September, and I set about enjoying the summer through my bedroom window and joining my teen and husband in trying to convince ourselves that everything was going to be all right.  You’re probably wondering if the teen had to wait ‘til I had my bag to find out that it was, but that would’ve been cruel.  And he might not have wanted to visit me in hospital.  Luckily, the husband has a friend whose girlfriend has had a bag for more than 20 years, and she agreed to visit us. 

She was small and very pretty and she didn’t smell and you couldn’t see she had a bag at all.  And because we are basically shallow people, that did the trick for all three of us.  We were ready.

1 comment:

  1. Hi Wendy,

    I promised I'd comment on your posts a while back and then duly didn't.

    My experience with crohn's and the bag were slightly different, though my thoughts on the bag were very similar. I was diagnosed with crohn's in 1999 and I remember being strangely relieved. Not only was there the relief that they'd finally worked out what was wrong with me and could treat it, but I was also relieved - ironically - that it wasn't Ulcerative Colitis. Because everything I read spoke of UC as the form of IBD that was "cured" with a bag. And that was obviously something that no sane person would want.

    So between 1999 and Christmas 2002 I tried all the medications that they could throw at me. I had a hemicolectomy. And I got more and more ill. Then at the end of 2002 I got an ulcer in my bum. Which turned into a fistula. Which turned into two ulcers and two fistfulas. I spent three months very ill, with three stays in hospital culminating in a six week stay. That last stay was where I decided that I wanted an ileostomy. It was the only, desperate thing I could think of that could give me some kind of life back.

    I might comment at a later date, when it's more fitting just how much it gave me back. I'll just say for now that my life actually began again, better than ever when I got my stoma.