Hello Stoma

 

The day of the operation arrived and we had to be at the hospital for 7.30am.  The teen decided he’d see me when I came round later; 7.30 is very early for most of us, but especially for teenagers.  I took two valium the night before and didn’t sleep a wink.  At about 4am I decided I should write a letter to my son in case I died during surgery.  If I didn’t write it, I would surely expire on the operating table, leaving nothing behind for my child to cling to as he grew older, no message of how I would always be watching over him and if he fucked up I’d haunt him for the rest of his days.  So the letter was insurance – if I wrote it, he’d never get to read it.  I felt a bit stupid, scribbling and trying not to get tearful at the thought that I wouldn’t get to see what he did with his life; who he became; how many kids he’d have, whether he’d impregnate somebody I approved of.  It was all ridiculous, of course; I knew I wasn’t going to die - the surgeon had told me there was a 1% mortality rate and had pointed out that they usually do these surgeries on fairly old people.  He’d as good as told me I would definitely survive but at 4.15 in the morning, as I scratchily told my son how much I loved him and asked him to make sure his dad didn’t hook up with anyone horrible, I really didn’t feel sure.

It was still dark at 6 when I finally gave up on the whole sleep thing and got in the shower.  My last shower as a sealed unit.  It should have been memorable, there should have been a sense of occasion, but in the end it was just another shower, taken with an X drawn in permanent marker on my stomach, a couple of inches to the left of my tummy button, and down a bit.  They usually go on the right, apparently, but my bumper selection of scars meant there wasn’t anywhere on that side a bag could go.

The husband had no choice about coming to the hospital so early as he was driving me there.  We didn’t have much to say to each other that hadn’t already been said, so we left the talking to Chris Evans, who was interviewing Richard Madely in a field as we drove through a virtually traffic-free north London.  Strange, the things you remember.

The surgeon greeted me warmly, asked if I’d changed my mind, and then introduced me to the anaesthetist.  I remember being in a small room with a couple of young men making me repeat the word ‘professorial’ to see if I was being affected by whatever it was they were dripping into my hand.  I do remember that it took a lot more of whatever drug it was than they thought it would.  I’m only 5 feet tall – some might argue I’m a shade under that – but when it comes to pharmaceutical drugs I’m hardcore.  That’s what happens when you take a hundred mgs of pethidine three times a day for three and a half years.  Somebody said something about an epidural, somebody else took my knickers and the next thing I knew I was in recovery, throwing up into my oxygen mask.  And I couldn’t feel my legs. 

Some time later, I was on the High Dependency Unit and my husband, my teen, and both my sisters were looking concerned – I’d been left in recovery for hours it turned out, due to a lack of available porters.  My clothes were missing and I could feel a serious and agonising pain at the top of the scar that bisected my stomach from chest to pubis.  And I still couldn’t feel my legs.  ‘We’ll get you standing tomorrow,’ a pretty nurse told me.  ‘You won’t,’ I said back, ‘because I can’t feel my legs.’  Turned out the epidural was working just a bit lower than it should – my legs were numb and the top of my stomach wasn’t.  The surgeon sent somebody to take out the epidural and hook me up to patient controlled morphine – there are definitely some positives to having major surgery, and patient controlled morphine is one of them.  No pain.  Seriously – you press the button just enough and you have no pain.  Everyone should try morphine at least once; there’s nothing like it for taking the edge off.

The next morning they did indeed get me up and I walked a few steps, which felt like quite an achievement.  And then a lovely nurse washed me and was clearly trying to hide my new stoma.  ‘Don’t look at it yet,’ she told me.  ‘There’s plenty of time and it’ll probably just upset you this soon.’  I can see why they say that; there must be plenty of people who are freaked out by having a stoma; I know lots of people end up having ileostomy surgery as an emergency and are completely unprepared for it, but I’m not one of those people.  I wanted to see this thing that was about to change my life, and I wanted to see it immediately.  I assured her I would be okay with it – I knew what it was going to look like, I’d read the literature – so she reluctantly pulled the bag they’d put on in surgery away and watched me carefully, ready to console me in my horror and sadness.  I suppose it was a big moment; meeting my stoma for the first time, and when I saw it I couldn’t help but laugh.  It still had stitches around the base, but it wasn’t the big, ugly thing I’d expected.  It didn’t look as horrible as the ones in the booklet had; I actually thought it looked quite sweet, sticking up out of my tummy, waiting to start working, for me to give it something to work on.  Maybe it was because it was mine, the way an ugly baby belongs to its mother.  Certainly, I’d have no desire to look at anybody else’s, though I don’t think I’d be repulsed either.  But my one was quite a presentable little thing, so far unsullied by poo.  And it didn’t seem to mind me laughing at it. 

Later that day another nurse asked me if I had a name for it yet.  A name for my stoma.  A lot of people do name their stomas – some witty names like Winnie or Vesuvius, or just a friendly name like Stan or Albert.  I didn’t have a name for mine, and I still don’t; it just feels wrong to me.  I didn’t mind naming my child when he was born, but that seemed like a necessity; this didn’t.  Nearly a year and a half on, I still don’t feel any inclination to name it.  If I’m honest, I do think of it as a male thing, but that’s as far as I’m prepared to go.  One one occasion I referred to it as a ‘little monster’, but that’s not really a name is it?  It’s a Lady Gaga fan.  And I’ve never noticed it respond to her music in any way. 

Before the operation, I’d been in terrible, horrible pain for a year.  The kind of pain that made me want to rip my own head off, which would be silly because it would just cause more pain, but at least it would be a distraction from the original pain that really was unbearable.  Hence the high doses of pethidine, which helped just enough to stop me tearing off any other body parts.  After the operation, despite feeling the after-effects of being cut open and having what was left of my intestines tugged and pulled in all directions, that pain was gone.  I could feel it immediately.  And in return I now had an ileostomy, which as well as putting an end to that pain also meant I never had to sit on a toilet with agonising, searingly sore diarrhoea ever again.  I know I’ve said it before, but going to the toilet more than twenty times a day took up a serious amount of work and pleasure time; I was more than glad it was over.  All in all I’d had a pretty good couple of days.

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.

In The Beginning

 

Julie Andrews says you should start at the very beginning, but where is that?  I guess it starts with the Crohn’s, the bag is in the middle, and thanks to that middle, the end should be fairly far away.

So I’m going to start with the middle – sorry Julie.  The bag.  I’m not going to go on and on about the bag, so concentrate.  My bag is called an ileostomy, as opposed to the more commonly heard of colostomy.  Because a colostomy has more recognition as a word, that’s what I claim I have when people look at me funny as I come out of a disabled toilet looking perfectly healthy.  ‘I have a colostomy bag, okay?’ I say, slightly angrily, and their own slightly angry, a bit jealous, busting for a pee look softens somewhat.  And then I lock the disabled toilet door with my special key and skip away.  Last laugh mine, I think.

I’ve only had my bag just over a year.  I’ve had Crohn’s for more than 30 years - having been diagnosed in my teens - and was very proud to get so far without a bag, and before I get ahead of myself I’m going to give you a glossary of terms.  Kind of.

Crohn’s disease is ulceration of the digestive system that can occur anywhere from the mouth to the anus, but usually – as in my case – hangs out in the small and large intestines.  As a last resort, surgeons remove the colon, leading to:

Ileostomy is an opening into the ileum, part of the small intestine, from the outside of the body, providing a new pathway for waste material to leave said body.  In other words, a bit of intestine is brought to the surface of the stomach, over which a bag is placed to catch all the poo (I told you there’d be poo).   The bit the bag goes over has a title of its own:

Stoma is the name of the bit of intestine that is brought to the surface of the stomach.  Stoma is Latin for mouth. Perhaps there isn’t a Latin word for arsehole.

So now all that’s clear, I can carry on …

I’m very happy with my ileostomy – it’s changed my life for the better; I can do things I couldn’t do for years; I can eat things I haven’t eaten for decades, and I don’t have to worry about what I used to euphemistically call ‘having an accident’, which actually meant inadvertently pooing myself in public.  My bag could leak, of course, and sometimes – rarely – does, but that’s not the same. 

My Crohn’s was very bad.  Some people are lucky and get it mildly; some people aren’t.  I wasn’t.  I tried every drug going and when they all failed, I spent three and a half years in bed, in agony, with various complications of Crohn’s as well as the Crohn’s itself; stopped writing which is supposed to be my job, and watched far too many episodes of Doctors before I finally realised I’d have to have an ileostomy.  I do love my bag now, but I didn’t exactly jump at the chance to have one the first time it was offered. 

In fact, the first time it was offered was in 1990, and I effectively said, ‘No thank you, I’ll struggle on for twenty more years if you don’t mind.’  And I’m glad I did.  A lot of people with bags say they wish they’d had them years ago; I don’t.  I think I had mine at exactly the right time. 

So, now you know the medical stuff.  I’m going to assume that knowledge from here on in, and not patronise you by giving you the same information again.  I might tell you more details, but I’ll also be trying to prove myself a normal, middle-aged, slightly neurotic writer, mother and wife.  Who poos into a bag.