Wenshday's diary on a Thurshday 7.2

Got a masshive ulsher on my tongue. Oooh, isht’s a big one. Isht’s making me schpeak funny. Imagshin the Eleshphant Man after he’sh had schpeach therapy and he’sh making shome progresh – thash what I shound like.

Wenshday 12th Augush:
7.05am Chanshe bag
11.30am Empshy bag
1pm Empshy bag
3.30pm Empshy bag
7pm Empshy bag

Meshicashion:
Brekshfasht 6 x meshalashine 400mg
Dinner 4 x azashfioprine 50mg
Bedtime 6 x meshalashine 400mg

Commensh:
Ulshers are back with a vengeansh. Owsh.

Elisabeth, UC and me

‘It brought us closer together.’

That’s how I voted in the relationship poll.

I met my girlfriend Elisabeth shortly after my first flare up with ulcerative colitis.

Although at the time I didn’t know it was called ulcerative colitis.

I just thought it was a weird-spluttery-shitting-blood-diarrhoea-thing.

I thought it would go away.

So I didn’t mention it to Elisabeth.

In case it made her go away.

A weird-spluttery-shitting-blood-diarrhoea-thing isn’t something you bring up on a date.

I wanted to make a good impression. I wanted her to think I was sexy and funny and clever.

I didn’t think telling her my shit looked like roadkill would help.

So I kept it to myself.

It wasn’t difficult, because most of the time I felt fine.

My symptoms would come and go. It was all very sporadic.

But I do remember when I stayed at Elisabeth’s house, in the mornings I would turn the shower on to drown out the phutt-phutt-splutt-splosh of my bottom exploding.

If Elisabeth or her housemates ever heard anything they were too polite to say.

By the time I was properly diagnosed and I had a name for my weird-spluttery-shitting-blood-diarrhoea-thing Elisabeth and I were boyfriend and girlfriend.

A proper couple.

And proper couples share their troubles.

So we learnt all about UC together.

And as we got to know UC better, we got to know each other better.

Thanks to the noises and smells I produced, Elisabeth perhaps got to know me a bit better than I would have liked.

But she never made me feel embarrassed about anything.

She always said she didn’t mind and encouraged me to be open about it.

She made me feel comfortable talking about, well, poo, mainly.

Colour, consistency, frequency…nothing was off limits.

Nevertheless, I continued to turn the shower on when I went to the loo.

It’s fine talking about it, but she didn’t have to hear everything.

So I know I’m very lucky to have a girlfriend like Elisabeth.

Not only is she patient and understanding, she kind of takes everything in her stride.

She’s unflappable, calm, steady.

I put some of it down to her being German. They’re a practical lot.

As well as being cool-headed, she’s incredibly supportive.

If you go all the way back to my first post on Number Twos you’ll see I had my first comment.

That’s Elisabeth.

She’s been there for me right from the start.


Reading this back I think I should write a post about how having my bag has affected our relationship, so coming soon…Elisabeth, colostomy bags and me.

Relationship poll results and a slightly glib scribble in lieu of something more meaningful that I intend to write once I’ve gathered my thoughts

How has your illness affected your relationship?
It's really put a strain on us: 22%
It's caused us to split up: 2%
It's brought us closer: 29%
It's made no difference: 31%
It's made me avoid relationships: 13%

Wednesday's diary on a Thursday 7.1

You’ll see below that I empty my bag a few times a day. It occurred to me that it might lead people to think my bag is constantly filling up, so I thought it worth mentioning that I never wait for it to fill right to the brim before emptying it. I usually empty it when it’s about a quarter full, just when it’s starting to get a bit of weight to it. I could hold on longer for a good old load of poo to build up, but I prefer to keep the bag as close to empty as possible. Psychologically it’s somehow better. I’m more relaxed if my bag is empty. And the less plump it is, the less of a bulge it makes under my clothes. And the less it feels like it’s going to burst. Or drop off like a mushy overripe pear. So I let out a little more often, if that makes sense.

Wednesday 5th August:
6.45am Change bag
9.30am Empty bag
11.55am Empty bag
5.30pm Empty bag
10pm Empty bag

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

Comments:
The ulcers cleared up.

Ben Watt book review

I have just finished Ben Watt’s Patient: The True Story Of A Rare Illness. It’s his account of a life-threatening illness that nearly killed him in 1992. It has nothing to do with either ulcerative colitis or Crohn’s. What he had is called Churg-Strauss Syndrome and is incredibly rare (only 30 cases reported in the last 25 years.) And it turns out that although he had nearly all of his small intestine removed, his large bowel was unaffected, which means he can still poo. So he’s not an ostomate. Ben tells his story exceptionally well. He captures life on an NHS ward perfectly. At times it almost felt like I was there in the bed next to him. It brought back a lot of memories. He handles his book as he did his illness – with dignity, humour and not a shred of self-pity. Bloody good bloke by the sounds of it. Might have to buy an Everything But The Girl Best of… now.

Magic tips

Sleight of hand depends on the use of psychology, misdirection, and natural choreography in accomplishing a magical effect. Misdirection is perhaps the most important component of the art of sleight of hand. The magician choreographs his actions so that all spectators are likely to look where he or she wants them to. More importantly, they do not look where the performer does not wish them to look.

In the few months since becoming an ostomate I have learnt to hide my colostomy bag by using sleight of hand, much as a magician does. At my disposal I have a bag of tricks that help me disguise the fact I have a bag. Here are a few of them.

“The Back Turn” If I’m in public, somewhere like a café, and I stand to put on my jacket or coat, I’ll simply turn my back on the room, so in the process if my shirt lifts up, no one gets a peek of my bag. Then I can take a moment to straighten everything up down there before I turn round and no one is any the wiser.

“The Left-Handed Carry” I mainly use this one in the office. If I’m walking from A to B anywhere at work I might carry a cup of water or a notepad in my left hand, held roughly in front of the area where my bag is. It is often possible to see the outline of my bag through my clothes, but as far as I’m aware no one has ever been able to see through a Moleskine notepad.

“The Lean Forward” Again, if I’m in a café or bar, I find there’s less likelihood of the poop bag popping out if I lean forward in my chair. So that’s how I tend to sit, hunched over like I’m sat on the loo, ironically.

“The Bag On Bag” During rush hour on the tube you’re crammed in so tight you can usually tell if the person standing on your toes uses Colgate or Crest. No one has their own personal space. So to stop any short-arsed commuters seeing anything they shouldn’t, I position my manbag over my shitebag. It also helps protect it from stray elbows.

“The Larry Grayson” Left hand bent limply at the wrist, held in front of my bag. I very rarely use this one for fear of sending out the wrong signals.

“The Awkward Teenager” By thrusting my left hand deep in my trouser pocket, rolling my shoulder forward and my elbow inwards towards my body it covers up my bag, but it also makes me look like a 37-year-old trying to look like a 17-year-old. Which is never a good look, is it Bobby?

Travels with my RADAR key: Number 2

There are 7000 public toilets in the UK accessible with a RADAR key. This is my visit to one of them.

Hoxton
It’s Friday. One of those quiet days at work, so I decide to start my weekend a little early, and I pack up and go. With vague notions of walking half of the way home and catching the tube from Highbury & Islington, I leave Soho and head east. There’s a really good Oxfam bookshop near the British Museum, where I nearly always find something tucked away in a dusty corner. Today’s visit doesn’t disappoint, and for £3 I buy Ben Watt’s Patient: The true story of a rare illness. Ben Watt is one half of pop group Everything But The Girl and is, I believe, also an ostomate. So with my new book I continue on my merry way through the heart of literary Bloomsbury, stopping to relieve myself at Great Ormond Street Children’s Hospital. As with most UC-ers, my knowledge of decent, available toilets is extensive. I’ve used the ones here a few times, and seeing the poor little kids running around with tubes sticking out everywhere never fails to put things into perspective. Around about this point on my journey I should turn left and zig-zag my way towards Kings Cross, but today I turn right. Skirting the fringes of Holborn, I head towards Clerkenwell, where things start to get a bit more warehousey and interesting. Now I start to think I might walk as far as Liverpool Street Station and catch the overland train home to St James Street, Walthamstow. The cool Clerkenwell web designery folk in their limited edition trainers begin to thin out as I approach Old Street and I find myself amongst the lunchtime masses of mini Gordon Gekko’s. Judging by the numerous packed out eateries in the area, Gekko’s ‘Lunch is for wimps’ rhetoric is as dated in the financial world of 2009 as his red braces. Enjoying the sunshine, I decide to skip Liverpool Street completely and meander my way northeast through Hoxton. Behind Hoxton Community Garden I discover a row of pristine toilets looking totally out of place in the fashionably grungy surroundings. Using my RADAR key I let myself into the disabled loo and empty my bag. The key saves me 20p. Hoxton becomes Dalston and the sound of Friday afternoon prayer from a huge mosque, competes with the traffic. I buy a Magnum ice cream and as I toss the wrapper into a litterbin, an Arab looking man standing nearby says, “That’s a pound for using the bin.” Gekko would approve of his initiative, I laugh and strike out north into Stoke Newington. Clapped out afternoon drinkers huddle in pub doorways turning the air blue with their jokes and nicotine. EastEnders doesn’t even come close. A right turn takes me into the leafy suburbia of Stamford Hill, with its population of Orthodox Jews in their traditional black dress, wide-brimmed hats and ringlets. I feel somewhat conspicuous in my canary yellow Macintosh, like someone has dropped a Smartie into a bowl of liquorice. I arrive in Springfield Park café eager for refreshment. With a much needed coffee I finally take the weight off my feet and settle down to read a few pages of Ben Watt’s book. Before me the park slopes away to the River Lee and beyond to Walthamstow Marshes. Finishing my coffee I lug myself over the cricket pitch towards the river. Heavy legged I cross the Lee with this tune in my head. Like a pair of nightclub bouncers surveying the queue for trouble, two geese with puffed out chests have a good long nosey at me as I pass. I pick a blackberry and pop it in my mouth. Home is in sight.