Friday, May 29, 2009

Blow up

A bulge has appeared under my t-shirt on the left hand side. This means my colostomy bag has inflated. It gives me the appearance of having half a beer belly. When your bag blows up like this it feels like it could burst like a balloon at any moment, so it’s wise to let some air out as soon as possible. I make my way to some nearby public toilets. I’m in luck, one of the two cubicles is free. I duck inside and turn to lock the door. The lock is bust. Not a problem, I’ll just lean against the door to keep it shut, open my bag and let the air out. Normally a straightforward procedure, but on this occasion the gas is trapped behind the stool, forcing the poo out. Defying gravity the stool quickly rises up, filling the opening of the bag and preventing me from rolling it back up and sealing it. Great, now I have a shit Vesuvius on my hands. A generous tablespoon of crap lands with a splat on the tiles. I take this as my cue to leap towards the toilet before I cover the rest of the floor in excrement. The remaining contents of my bag drop down into the toilet bowl from a distance of about 3 feet making quite some splash. This is not going according to plan. Without my weight against it the door swings open. I kick out a leg behind me slamming it shut. The now flaccid bag brushes against my jeans leaving a dark smear of shit. I have one hand on the cistern in front of me, and a foot against the door behind me. I’m in a similar position to a ballet dancer warming up at the bar. With my free hand I grab a handful of toilet paper. I mop up the mess on my crotch before tackling the opening to the bag. There’s warm poo all over my fingers, which makes me involuntarily shudder. Five minutes ago I was enjoying the sunshine and now I’m balancing in a small cubicle surrounded by own faeces. I hear the bolt slide back on the cubicle next door. I take my chance and like one of those wooden characters you see on Swiss clocks I pirouette out of my cubicle and into the now vacant one in one seamless move. With the door safely locked I flop down on the toilet and catching my breath I take out my sandwich box containing my colostomy kit. Now I can start again. This time properly.

Thursday, May 28, 2009

Wednesday's diary on a Thursday 6.2

One minute you’re in hospital hooked up to a morphine drip vowing that if you ever make it out alive you’re going to turn your back on the bright lights and open a bookshop in Berlin, then – whoosh – the pages of your diary flip over and all of a sudden you’re up to your eyes in work, jacked up on strong coffee. This is not necessarily a bad thing. It just means I’m pretty much back to normal. Normal apart from the thingy stuck to my tummy.
Wednesday 27th May:
6.40am Change bag
11.15am Change bag

Medication:
Breakfast 6 x mesalazine 400mg
Dinner 4 x azathioprine 50mg
Bedtime 6 x mesalazine 400mg

Comments:
Nope.

Monday, May 25, 2009

Don't call us, we'll call you

"Seriously, you are guaranteed an Oscar if you play a mental."
Kate Winslet, Extras

What about someone with a colostomy bag? Recently, in a moment of sheer unbridled egotism I got to thinking about who would play me in a film of my life. It’s a fascinating casting conundrum, because as much as ulcerative colitis isn’t funny, and having a colostomy bag isn’t funny, it feels to me like a role more suited to Woody Allen than Will Smith. Tom Cruise, Harrison Ford and Russell Crowe are all fine actors, but I think their talents are better put to use battling pirates, Orcs, aliens and Nazis than UC. Likewise I can’t see Brad Pitt blogging about his bowel movements or Leonardo DiCaprio counting out his prednisolone. Now, Philip Seymour Hoffman or William H Macy, that’s more like it. I can just picture a pale, disheveled Philip Seymour Hoffman, straining on the toilet with bloodstained underpants round his ankles, railing against God, NHS underfunding and anal enemas. And I can imagine William H Macy sheepishly returning to his desk after a noisy 15 minute shitathon the whole office has heard, then totally losing it and directing his steroidal rage at a colleague who suggests it might have been something he ate. I’m not sure you’d get the same level of pathos and intensity from Vin Diesel. Now for some reason, I can only imagine slightly weird, oddball actors playing the part of me. I really don’t know why this is, because Johnny Depp would be a more obvious choice. But what about you, put yourself on the imaginary casting couch, who would you get to play you?

And to help get you in the Hollywood mood, here’s a list of UC themed films:

Close Encounters of the Turd Kind
The Armitage Shanks Redemption
The UC Suspects
Forrest Dump
No Colon for Old Men
Poop Fiction
Fartacus
Brokecrack Mountain
Pred-ator
Assablanca

Friday, May 22, 2009

Sigh

Friday night.
Friday night in.
Friday night in on my Jack Jones.
On my Todd.
Friday night in.
On my own.
Nothing wrong with that.
Don’t have to go out.
Don’t have to see anyone.
Nearly quarter to eight.
I’ll wait ‘til nine before I put my pyjamas on.
Might wear a fresh pair.
Treat myself.
Bank Holiday and all that.
A fresh pair of jim-jams.
That’ll be nice.
Nearly quarter to eight on a Friday night.
Still light out.
Hope it gets dark soon.
Don’t want to be in my pyjamas when it’s still light.
Oh.
Now it is quarter to eight.
Just check I’ve got enough milk for the morning.
Weetabix for breakfast.
Yep, just enough milk.
Quarter to eight and I’m already thinking about tomorrow’s breakfast.
Nothing wrong with that.
Don’t have to go out.
Not everyone goes out Friday night.
Why is it so light?
Them windows need cleaning.
Vinegar and newspaper.
Might put the telly on in a bit.
Put my pyjamas on first, perhaps.
Not until nine.
I absolutely will not put my pyjamas on before nine.
Not on a Friday night.
Is it too early to pull the blinds down?
What will the neighbours think?
Pulling the blinds down on a Friday night.
And it’s not even eight.
They’ll think I’m odd.
They’ll think what’s he doing pulling his blinds down and it’s not even eight?
They’ll think I’m up to something.
They’ll think them windows need cleaning.
I can’t be cleaning my windows on a Friday night.
Not on a Friday night.
Best stay away from the windows.
No one needs to know I’m in on a Friday night.
If I keep still.
If I keep the lights off.
And don’t put the telly on.
They’ll think I’m out.
I don’t care if it’s still light out.
I’m putting my pyjamas on.
Better to be comfortable.
Now what time is Jonathan Ross on?
Ten thirty-five!
Sweet Mary Mother of Christ!
It’s only ten past eight.
On a Friday night.
On my Jack Jones.

Thursday, May 21, 2009

Mittwochs Tagebucheintrag am Donnerstag 6.1

Mittwoch, 13. Mai:
6.50 Uhr Beutel gewechselt
14.00 Uhr Beutel gewechselt

Medikation:
morgens 6 x Mesalazine 400mg
abends 4 x Azathioprine 50mg
nachts 6 x Mesalazine 400mg

Bemerkungen:
F├╝hle mich ein bisschen deutsch heute, vielleicht liegts am Wetter?

Tuesday, May 19, 2009

Don't lump me in with elephants and donkeys

Yeah, true.

But some of us do it slightly differently.

Monday, May 18, 2009

The wrong room

An urgent knock at the door interrupts me from my task. I am naked from the waist up in the baby changing room at Spitalfields Market in London’s East End. Knock-knock-knock, there it goes again. I freeze and hold my breath. A man’s voice calls through the door, “Can you come out?” It sounds more like an order than a request. I’m midway through changing my bag. My colostomy kit is neatly laid out in front of me. In my right hand I hold a scrunched up wet-wipe over my stoma. Now is not a great time for me. “Come out, please,” demands the voice beyond the door. For some unknown reason I’m still holding my breath, like I’ve suddenly found myself in a game of hide and seek. Another round of brisk knocking rattles the door. “Hang on,” I cry out. The sound of my voice seems to have the same effect on the man outside as a twitching line has on a fisherman. The knocking becomes faster and more agitated, “Open. The. Door,” spits the man. By this time I’ve guessed he probably doesn’t need to urgently change a nappy and he’s most likely some sort of security guard. He must have spotted me on CCTV going into the baby changing room without a baby. This would have aroused his suspicions: man + baby changing room – baby = drug user/terrorist. Pushing aside his KFC bucket he would have sprung into action, hoping to catch me red-handed. And so with all the tenacity of a man who thinks he’s cornered Osama bin Laden, he continues knocking on the door. I decide to ignore him and make him wait. Taking my time I change my bag to the steady beat of his knuckles on the woodwork. Once I’m all tucked in and zipped up, I open the door and as I suspected, I come face to face with a security guard. He takes a step back, assessing the situation, ready for combat. I swear he thinks he’s Boba Fett. “That’s the baby changing room,” he says nodding at the sign on the door. “I know,” I reply. He lifts his head slightly and narrows his eyes, peering at me down his nose. I raise my eyebrows inquisitively, enjoying the game. “It’s for changing nappies,” he tells me with more menace than the words deserve, “You cannot go in there.” “The disabled toilet was locked,” I say. The security guard glances over his shoulder at the disabled toilet, and retaliates with, “You need to phone the number to get it opened.” “Right. I didn’t know.” We stand staring at each other in silence. Stalemate. Seconds pass. “Can I go now?” I ask. The guard nods at the baby changing room again, “Why’d you go in there?” Okay, Columbo, you asked. I lift up my shirt. This’ll show him. This’ll make him squirm. The security guard takes one look at my belly, and like he’s seen a million colostomy bags he simply shrugs, “You still can’t use that one. Next time use the disabled toilet and ring the number.” With that he gives me a parting look as if to say ‘you’ve been told’ and leaves me standing there like a plonker with my bag blowing in the breeze.

Sunday, May 17, 2009

An agony aunt replies

I don’t feel like a woman trapped in a man’s body, I don’t suspect my girlfriend of having an affair with the meter reader from British Gas and I haven’t developed strong feelings for next door’s Cocker Spaniel, but a couple of days ago I did feel compelled to do something I’ve never done before. I wrote to an agony aunt. Virginia Ironside is the agony aunt for the Independent, and whilst trawling the internet for ‘celebrities with colostomy bags’ I came across this article she wrote about own experiences of UC, surgery and having to wear a bag. Yes, that’s right, someone in the public eye actually speaking openly about wearing a bag. Refreshingly Virginia tells it exactly like it is and deals with the subject with humour. So I thought I’d write to her to see if she would be willing to answer a few questions for Number Twos. She got back to me straight away and was up for some Q&A. I’d like to thank Virginia for her time and honesty. Clearly I’m no Parky, but Virginia was brilliant…


Agony aunt Virginia Ironside


As a public figure, did you ever consider keeping your colostomy a secret?

No.

The media, internet and reality TV means celebrities are pretty much under the spotlight 24/7. It seems we know who they’re sleeping with, what drugs they take and how they like their coffee – but if any of them have colostomy bags they’re keeping them well under wraps. Why do you think this is?
Sadly it's because people think that anything to do with lavatories is quite disgusting. It's odd, because they can talk about sex and weird practices, even anal sex and everyone thinks it's fine, but there's something about colostomy bags that makes people feel squeamish. Having had ulcerative colitis before having a bag, I find nothing remotely revolting about poo... it's just part of life. And anyway, I've changed enough nappies in my time to be immune.

You once wrote that before you had surgery you thought you’d rather commit suicide than wear a colostomy bag. If more people had spoken openly in the media about wearing a bag, do you think you would have thought differently?

Yes, I do. I wish Cliff Richard came out about his (if he has one, of course - none of us know!) and I wish the Queen Mother had come out about hers (again, who knows, maybe she never had one.) There must be dozens of public figures with them, and I think they should all come out and show everyone they can still wear very flattering clothes and look sexy - no one has to wear baggy trousers.

Do you get many letters from people who have had colostomies? What are the most common concerns?
No, I rarely get any letters except from people like you who say nice things about my "coming out”.

And finally, any embarrassing moments you’re willing to share?
The most embarrassing moments came BEFORE I had a bag because I had ulcerative colitis and often had "accidents". I've only had two accidents with the bag and that was in the early days - both on people's carpets. But with an enormous amount of scrubbing and apologising and being left alone with a cloth, a bucket, and a scrubbing brush, their carpets have looked cleaner after I've been at them, than before.

Saturday, May 16, 2009

Colostomy needs a Jade Goody

Whatever you think of Jade Goody, the media blitzkrieg of her battle with cancer has undoubtedly raised awareness of cervical cancer amongst young women. Jade talking about her illness has saved lives. Which is a good thing. But Jade wasn’t the first and she won’t be the last celeb to go public about their particular health problem. It seems every Tom, Dick and Dom with an Equity Card is at pains to share their pain. The glossy magazines are filled with heartbreaking exclusives about eating disorders, depression, OCD, alcoholism and drug dependency. And that’s just poor Gazza. Yet for all this apparent openness and honesty, there doesn’t appear to be any famous colostomy bag wearers. It would seem celebrities are unwilling to admit to having anything other than a perfect six-pack under their shirts. Of course, colostomy bags are never going to be cool, but would it really be career suicide to admit to having one? If Lily Allen said she had a bag I’d still buy her records. Likewise if Jeremy Kyle said he had one, I’d still think he was cock. I like to think people can see past the bag. I’m not suggesting that Heat should have a Torso of the Week featuring a celebrity with an ostomy bag, but it wouldn’t hurt for someone to come out the colostomy closet. Search the internet for famous ostomates and you’ll end up with Fred Astaire, Bob Hope and the Queen Mum; a dead dancer, a dead comedian and a dead swan eater. None quite the icon I had in mind. There must be someone in the public eye with a bag and a pulse. Where are the pop stars and movie actors with colostomy bags? Even if just one celebrity talked about having a bag, it might help some younger colostomy bag wearers accept their situation better and be less embarrassed. There is a rumour that Cliff Richard has a colostomy bag, but he strongly denies it. So if you’re reading this, Sir Cliff, and the rumour is true, please could you do all ostomates a big favour; keep denying it. Colostomy bags will never be cool if it comes out you’ve got one.

Ostomate of the Week has a certain ring to it.

Thursday, May 14, 2009

Wednesday's diary on a Thursday 6.0

Wednesday 13th May:
7.20am Change bag

Medication:
Breakfast 6 x mesalazine 400mg
Dinner 4 x azathioprine 50mg
Bedtime 6 x mesalazine 400mg

Comments:
Dry skin on my face. A side effect of the medication?

As you can see, very little activity on the bag front yesterday. I put a new one on in the morning and then, well, that was it. A one bag day. Great for me, but really quite dull to read about. So if the changing of the bag isn’t quite cutting it entertainment-wise, let’s liven things up with The Changing of the Guard, a somewhat bizarre and whimsical hit for the Marquis of Kensington in 1967. And before you accuse this blog of self-indulgence and going off topic, there is a reference in the lyrics to a certain Lady Annabelle Barley’s belly. She sounds spiffing.


Contrary to belief, it is possible to sing with a plum in one's mouth.

Tuesday, May 12, 2009

Play it safe with a safety pin

It is possible to wear your bag tucked inside the waistband of your trousers, but I prefer to wear mine outside. I find when it’s tucked in the tightness of my jeans prevents the stools from dropping down into the bottom as they should. But the only problem with having the bag outside your trousers is your shirt can ride up exposing it to the world. And the last thing you want in any social situation is a plump, pink bag hanging obscenely out your shirt, like some weird Muppet scrotum. It makes people nervous. So rather than spend all day self-consciously tugging my shirt down, I use a discretely placed safety pin to hold it in place. I think it’s rather nifty. Take a look at the photographs. I think you’ll agree it’s a lot harder to spot the pin than it is the sack of cack.

Nothing to see here. With pin.

Peepo! Without pin.

Monday, May 11, 2009

Lost


I’m beginning to think that when the surgeons removed part of my colon they may have also taken out a bit of my sparkle. I don’t know what it is, but since my operation I’ve just felt a bit flat. It’s like someone has turned the brightness down a notch. I seem to be lacking my edge. The spring is missing from my step. My grrrrr has gone pffft. These words just aren’t pinging the way I want them to. I’m sure it’s just a temporary getting over an operation thing. It probably takes a while to click through the gears to 100%. But I want to be firing on all cylinders now. I just want my bloody oomph back.

Thursday, May 7, 2009

Wednesday's diary on a Thursday 5.9

For the second week running it's another two bag WDOAT. Thrilling stuff.
Wednesday 6th May:
7am Change bag
11.30am Change bag

Medication:
Breakfast 6 x mesalazine 400mg
Dinner 4 x azathioprine 50mg
Bedtime 6 x mesalazine 400mg

Comments:
A little blood from the old back passage yesterday. Nothing to fret about, but worth recording, I say.

Wednesday, May 6, 2009

Shit, shower & shave

The first time poo fell out of my stoma in the shower it gave me a bit of a fright. Even though I knew showering without the bag meant there would be a chance of it happening, I still wasn’t quite prepared for it when it did. Watching poo curl out of a hole in your stomach is quite an odd experience. It slips out very slowly before suddenly breaking off and landing at your feet with a soft thud. If you’re not quick enough it sometimes actually lands on your feet. Luckily you’re in the shower so it rinses through your toes in no time. Like I say, it’s an odd experience. It was my stoma nurse who recommended I shower without the bag. She had been told by a few of her patients that it was a good habit to get into. Initially the idea scared me. In those first few weeks the less I saw of my stoma the better. The thought of being naked and washing myself with a gaping wound in my belly made me feel squeamish. What if water got in it? Or even worse, what if my finger slipped in by accident? So I ignored the advice of my stoma nurse and showered with the bag on. I felt a bit of a wimp for not being brave enough to go au natural, but I figured they wouldn’t make the bags waterproof if they weren’t meant to be worn in water. It wasn’t long though before I began to notice that after a shower the adhesive flange would start to lift up at the edges, often leading to a leak. And even when the bag had dried it still smelt a bit fusty. Also keeping the bag on for long periods just felt, well, slightly unhygienic. Even though I’d had a shower I still felt unclean. So one morning I took the plunge and went bagless. After the initial weirdness and shock of watching my own shit going down the plughole, I realised it wasn’t so bad. Even the sight of my ugly stoma didn’t bother me so much. I started to gain confidence and soon I was cleaning it properly. Actually touching it and everything. I also have to shave the area around my stoma, too, which helps the adhesive stick better when you put the bag on, and hurt less when you take it off. It’s all part of my daily routine now. I would never go back to keeping the bag on. It wouldn’t feel right. It’s funny, I used to think showering with the bag off was disgusting, but now I think it’s disgusting showering with it on. And really, does it matter so much if I poo whilst I shampoo?

Tuesday, May 5, 2009

My UC family tree

Because my grandma had ulcerative colitis I’ve often wondered if it’s something I’ve inherited, or it’s just an unfortunate coincidence. As far as I know no one has ever proved for certain that UC is hereditary. But recently I discovered something that may add some weight to the argument that it is. My grandma had a sister called Eileen, and it turns out her grandson has Crohn’s. His name is Grant and he lives in Melbourne. I’ve never met him, but obviously we do share something in common. Could it be possible that UC and Crohn’s is in our genes? Is it something that has filtered down through the maternal side of our family? Admittedly it may not make a particularly thrilling episode of Who Do You Think You Are? It’s not like discovering your great-great-great-grandma was William Pitt the Younger’s bit on the side, but it is kind of interesting. Maybe our family has been plagued by tummy troubles throughout history? Below is a diagram of our immediate family tree showing family members affected by UC or Crohn’s.

Saturday, May 2, 2009

The poll results


Thank you to everyone who voted in the poll. 62% of you favoured the little white lie that is the rumbling tummy option. It probably is the best way to handle the situation, but I have one tiny problem – gas escaping into my bag doesn’t really sound like a rumbling tummy. It sounds like gas escaping into a bag. But if you’re in a meeting and politely say, “Excuse me, that’s my tummy rumbling,” it’s going to take a moron of the highest order to question you on it. So unless you happen to work for the Royal Bank of Scotland you should be safe. 14% would come clean and explain you have an ostomy bag. I can’t quite decide whether this is brave and admirable or complete madness. And I’m actually one of the 14%. But since voting I’ve started to come round to the idea that honesty isn’t always the best policy. You may feel embarrassed by the noise, but the chances are no one else in the room will be that bothered. They probably just want to get on with the meeting and get it over with as quickly as possible so they can get back to eBay. A show and tell session about colostomy bags will probably end up being as embarrassing for your colleagues, as it would be for you. I’m surprised that more than 11% didn’t opt for ignoring it. If you have the necessary acting skills and composure required to maintain a look of innocence whilst a hissy-wheezing-hubble-bubble noise emanates from beneath your shirt, go for it. I admire you. But not as much as the 11% who make up the criers. I love the criers. I think I might join you.