Wednesday's diary on a Thursday 7.0

This week I've got mouth ulcers. I showed them to my girlfriend yesterday and she made a face. You know ulcers are bad when you show them to someone and they make a face. It hurts when I drink coffee. I can't not drink coffee. It's all I have left.

Wednesday 29th July:
6.20am Change bag
10am Empty bag
2.40pm Empty bag
6.30pm Empty bag
10pm Empty bag

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

Comments:
Did I mention mouth ulcers?

Underlying what?

'A woman has died of swine flu. It is believed she had underlying health problems.' 'A man became the latest victim of swine flu yesterday. It is understood he had underlying health problems.' Okay, I get that they died, and the cause was swine flu, but what’s that bit about underlying health problems? What is an underlying health problem? What are we talking here? Something serious? Were they on their last legs anyway? Was death inevitable? Is it a bit like saying ‘A skydiver tragically fell to his death yesterday. It is believed he had forgot to wear a parachute.’ Or ‘A man was fatally run over by a bus last night. Early reports suggest he was lying in the middle of the road disguised as a speed bump at the time.’ What in the name of Jupiter is an underlying health problem? Is ulcerative colitis an underlying health problem? If I died of swine flu would the newspapers say, ‘In London a man of 37 has died of swine flu. Doctors confirm he had underlying health problems.’ Is that what they’ll say? Then some woman sat eating her Sugar Puffs will look up from her paper and say to her husband, “Ere Pete, I see some bloke in London’s been killed by swine flu. Says here he had underlying health problems.” “Down in London, was it?” sniffs the husband, “He probably had AIDS.”

Pause

My digital watch tells me the time is 16:48:31. My right foot is poised, ready to step off the bottom of the escalator at Oxford Circus. I scrunch my eyes tight shut. When I open them the world will have stopped. Everyone and everything will be frozen. Except me. All I have to do to cast the spell is open my eyes. One. Two. Three. Open. The time on my watch is now 16:48:36. And there it stays. Time is suspended at 16:48:36. Eerily 36 seconds does not become 37. Statues now populate the London Underground. If Madame Tussauds had an exhibit of Oxford Circus in the afternoon this is what it would look like. I step off the now stationary escalator and walk amongst the immobilised commuters. It’s all very strange. I’m used to trains inexplicably stopping on the underground, but never the passengers. A man in a suit is caught mid-yawn; his lips stretched tightly over his teeth, giving him the appearance of those mummified bodies in The British Library. The busker with the 28 inch waist and Lowry-esque legs, arched over his guitar, fringe hanging down past his chin. The Finsbury Park mum clinging protectively to her daughter’s hand, both wear flowery wellies, in candy shop colours. A tall fresh faced kid in Oxford bags and tan and cream brogues turning the collar up on his vintage 1940’s Macintosh. He must be from Shoreditch. Or the ghost of someone killed in the Blitz. I step through them all. Worn out shoppers, pudgy office workers with Spammy complexions, Polish labourers with their swinging buckets and spirit levels. Leaning my back against the tiled wall, I let myself slide down into to a sitting position. Now all is still. Looking around I wonder what secrets these people have. What illnesses they are hiding. It’s impossible to tell from just looking at them. Here we all are in our Clark Kent disguises, none of us giving a clue to what lies beneath our clothes. Beneath our skin even. Surrounding me now there could be epileptics, migraine sufferers, people with arthritis, with high blood pressure, low blood pressure, bulimics, cancer patients, Hepatitis C carriers, burns victims. You just don’t know. There may even be other ostomates like me. Maybe the frowning girl in a hurry, with the hair like Shirley MacLaine in The Apartment has a colostomy bag, too? No one would know. And now I catch my reflection in one of the concave mirrors above my head. I see myself as others do. I have a colostomy bag, but no one would know. No one would know. It’s my secret. I scrunch my eyes shut. When I open them the world will have started again. One. Two. Three. Open. The time on my watch is 16:48:36. 36 ticks over to 37 to 38 to 39. Oxford Circus is alive again. The flowery wellies pass me by and disappear amongst the mish-mash of legs. The busker flicks the hair out of his eyes, hammering out a raw and juddering tune, tilting his head right back, the tendons in his neck as taut as the strings on his guitar, he sings, “Everybody’s got something to hide except me and my monkey…”

Wednesday's diary on a Thursday 6.9

Sometimes I have this recurring nightmare that a computer virus will somehow delete everything I have ever written on this blog, except the WDOAT entries. All that will remain of Number Twos, drifting around on the internet forever, are rather a lot of really quite dull accounts of my bowel movements. Shudder. What a terrifying thought.

Wednesday 22nd July:
6.30am Change bag
9.50pm Empty bag
2.45pm Change bag
8.50pm Change bag

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

Comments:
If you’re reading this in the year 2466 and all that’s left are a load of WDOAT’s, then my nightmare has come true, but I’d just like to say, for the record, that I did write more interesting stuff than this. Fractionally.

Relationship poll

Chronic illness doesn’t just affect the person suffering from it. Often it touches those around them as well. Sometimes an illness can make it feel like there are three people in the relationship, instead of two. This poll is about the impact it can have on our relationships. Has being sick altered things between you and your other half? It’s another very personal topic. The poll is just over there on the right.

Many thanks to Sasquatch for inspiring this poll.

That all elusive miracle cure for UC

Ulcerative colitis is one of those diseases that seems to attract myths. There’s always someone, usually a friend of an aunt of someone your mum met at a bus stop, who swears they magically cured themselves. Anyone newly diagnosed will soon discover there are plenty of walking miracles in the world of UC. The internet is full of evangelists offering advice on how to become disease free. Some of it’s plain laughable, but some is quite plausible. Like cut out dairy products. Drink aloe vera juice. Steer clear of tomatoes. Stop drinking alcohol. Start smoking. Reduce your stress. Only eat white bread baked on a Tuesday. Don’t even look sideways at a grape. Like most people, over the years I’ve spent my fair share of time clutching at straws. There was my brief encounter with a shiatsu therapist. Then there was the time I was nearly poisoned by a Chinese herbal chemist. Ah, the memories. I dabbled with diets, but nothing I did ever seemed to make a blind bit of difference. And no matter what I tried, over time my UC just gradually dug its claws deeper and deeper into me. Not that I regret anything I tried. After all I had nothing to lose. Which brings me to Mr Latif and Mr Abdul. I recently received cards through my letterbox from this pair of Mr Fix-It’s.


According to their spiel they can cure any problem in 24 hours. (Although if you need some black magic breaking or want to rid yourself of an evil spirit, that might take 48 hours.) I can’t help thinking it’s a bit late to help me. Where were Mr Latif and Mr Abdul when I needed them? They could have cured my UC overnight. Like Mr Latif modestly says, ‘Latif has the high knowledge of removing problem from people.’ Bloody hell, if he’d have been around a few months ago, I may never have had to put my faith in such backstreet shysters as NHS doctors. What do you think?

Depression poll results

Does your illness cause you to feel depressed?

From time to time: 62%
Every day is a struggle: 6%
Not really: 15%
You’ve been prescribed antidepressants: 4%
You've had suicidal thoughts: 8%
UC doesn't depress me as much as the credit crunch: 2%

Thank you to everyone who took part in the poll about depression.

As I wrote previously it’s an extremely personal subject, so I won’t comment on the actual results of the poll.

I can only really talk about how having UC and now a colostomy bag affects me.

So this is just my take on things.

In the poll I voted ‘Not really’.

Being an ostomate and having an illness doesn’t make me feel depressed.

It irritates me sometimes. It bores me. And frustrates me.

But it doesn’t really get me down.

What I do find is, if I’m having a bad day, having UC and the colostomy bag makes it that bit worse.

For instance, if I’m feeling grumpy, UC and the bag make me 10% grumpier.

If I feel gloomy, UC and the bag make me 10% gloomier.

If I feel like I want to throttle employees of London Underground, UC and the bag make it 10% more likely that an employee of London Underground will be harmed.

When I’m not feeling on top of the world, being sick and having a bag of shit hanging off my tummy doesn’t really help matters.

But if I were to write a list of all the things that get me down, UC and my colostomy bag might not even get into the top 5.

I’m more likely to get depressed about work.

Or unfulfilled ambitions.

Or the state of the country.

Also at the moment I consider myself lucky.

My colostomy bag in no way disables me, it enables me.

Before I had surgery I was very poorly.

Medication wasn’t working. I was pretty much housebound. I couldn’t work. I couldn’t go out. I was in pain. I was weak. And I rarely slept for more than a couple of hours at a time. Whipps Cross Hospital became my second home.

For three months my life was miserable. I was in a sorry old state.

But now I’m kind of fine.

I can go to work, go on holiday, go out, stay up late, sleep all through the night, eat what I like.

I can be a proper boyfriend again.

My life is pretty good.

Of course some mornings I wake up and look down at the bag and my heart sinks a little.

That’s normal, I guess.

Mostly though I just try to deal with things the best I can.

Don’t for one minute think I’m one of those happy-clappy-waggy-tailed-look-on-the-bright-side-of-life-glass-half-full types.

Far from it.

A lot of the time I’m an irascible old sod.

And I’m not without my darker periods.

But that’s just me, the way I am, and nothing to do with UC.

Sign on the dotted line

Before any operation you have to sign a consent form. It’s a written agreement between you and the surgeon saying that you give permission for them to do the operation. Just for the record I never read anything I sign. On being handed a document to read before signing, I just pretend I’m reading it for as long as I think it would roughly take to read something of that length. Towards the end of the charade I may even add a few quick successive nods of the head and in my most serious voice, which I reserve for moments such as these, say something along the lines of, “Yep, all seems fine.” Then I sign. So back in February this year when I signed my consent form, I did so only after a full two and half minutes of solid pretend reading. But now I’m beginning to wish I had paid more attention. I’m just wondering if there was anything in the consent form about pubic hair. More specifically the removal of it? Because when I signed that document I did so in good faith that the only thing the surgeons would be removing was a section of my large colon. I didn’t know they were going to give my privates a short, back and sides. I didn’t sign up for that. It took me a good 14 years to grow pubic hair the first time round, and now it looks like it’s going to take at least that long again to grow it back. Seriously how slowly does pubic hair grow. Are you meant to water it twice a day and give it plenty of sunlight? Because if that’s the case, my neighbours are in for a shock. Thankfully I’m out of the scratchy stage, but it’s been nearly 5 months now, I was kind of hoping I’d be somewhere near approaching full bush. At this rate, by the time it’s all grown back to its full-bodied best, it’ll be time for my next operation and they’ll shave it off again. And I’m not sure I consent to that.

Travels with my RADAR key: Number 1

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

Lord’s Cricket Ground
The two men occupying the seats directly behind my colleague and I will be instantly recognisable to anyone familiar with British sitcoms of the 1970’s. They are caricatures cast in the same mould as the Major in Fawlty Towers and Captain Peacock in Are You Being Served? You know the sort, blazer, regimental badge, old school tie, speak like they’ve got a live quail in their mouth. Another distinguishing feature is they often have no volume control. They just bellow. The two colonial codgers behind us are waffling on loudly about business and money. Especially money. Big money. But this is Lord’s, spiritual home of cricket, and natural habitat of the moneyed toff. If anything they add to the whole Lord’s experience. The sound of leather on willow wouldn’t be the same with the accompanying drone of a merchant banker or two. I have to admit I’m not much of a cricket fan. For me it’s a little like watching tropical fish in a tank; I don’t really know what the point of it is, but it’s quite a relaxing way to pass the time. I’m just about to ask my colleague if he fancies an ice lolly, when his phone rings. He answers and less than 20 seconds into the call, one of the toffs leans between the two of us and says, “Can you go outside if you’re going to be on the phone.” My friend squeezes past me to leave the stand, and I just happen to remark quietly that there’s very little difference between his conversation on the mobile and their 100 decibel blathering. If anything they’re making more noise. I turn my attention back to the game. But unknown to me I’ve planted a seed in my colleague’s head. I’ve lit his fuse. It takes roughly 11 seconds before he explodes back onto the stands, all wild eyed and gingery menace. Clattering over the plastic seats he gets right up in the faces of the toffs, “We’ve just had to listen to you pair wanging on for half an hour!” Oh God here we go. It’s all kicking off. The peasants are revolting. The old boys stiffen, their moustaches visibly bristling. They’re not intimidated in the slightest. Their sort have been dealing with our sort for centuries. “There are no mobile phones to be used in the stands. Read the sign,” one of them says. My colleague, who unbelievably has had his phone pressed against his ear all throughout the hostilities, realises the battle is lost and speaks into the handset, “Call you back.” The two victors shake their heads and glare at my friend as he takes his seat next to mine. After a minute or two I break the silence, “Lolly?” and he replies with the smallest of nods, like a chastened child on the naughty step. “I’ll get you one of them Magnums,” I say, hoping to lift his spirits. Before I buy the ice cream I go to the disabled toilet and let myself in with my RADAR key. A few minutes later, as I emerge from the toilet I step right out into the path of the two toffs. They look at me incredulously, then they look at the disabled sign on the toilet door, then they look back at me disapprovingly, for a really long time. They already think my colleague is an unlawful oaf and now they’ve got me pegged as an oik. I could tell them I have a special key, but why should I have to explain myself? I may well be an oik, but I’m an oik who is permitted to use disabled toilets.

Wednesday's diary on a Thursday 6.8

Wednesday 15th July:
6.30am Change bag
11am Change bag
5.15pm Empty bag
8.55pm Empty bag

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

Comments:
Nothing to report.

@rtinloo

In today’s Metro there was a little piece on something called @rtinloo. It reminded me of Loodles, which is something I tried to get started a while back. Loodles is definitely a better name.

Wednesday's diary on a Thursday 6.7

Dull, predictable, virtually identical week in week out, and featuring a load of old bags, WDOAT is becoming a lot like Last of the Summer Wine.

Wednesday 8th July:
6.30am Change bag
12.45pm Empty bag
3pm Empty bag

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

Comments:
Worth mentioning I hardly ever have leaks now and there's very rarely any smell either. Which is a VERY good thing for everyone.

Coffee mornings

My favourite time of day in Soho is early morning. At around eight or eight thirty Brewer Street is still quiet and before the intrusions of modern life flood into these narrow streets, turning the area into a jabbering media nerve centre, it’s easy to imagine Soho as it once was when the smog of industry loomed umbrella like over the skyline, brewery draymen did their rounds replenishing the public houses by horse and cart...and my daydream is rudely interrupted by my friend’s hand thrust out to greet me. Still with a firm grip of my hand he takes a seat opposite. We often meet in this Italian café before work to catch up over a coffee or two. Mostly we talk shop and bounce random ideas off each other. Not much ever comes of them, but if you ever see a range of t-shirts in the shops called Divorcetees, with slogans like ‘Our kids like me more than you.’ and ‘You’re dependent on my child support, you whore.’ then now you know where they were conceived. But this morning we’re not talking stupid t-shirts, we’re talking about another mate of mine who works in Singapore. He was in town at the weekend and I met up with him in a pub in Kensington. During the course of the afternoon, my friend told me if ever I fancied a change of scene he could probably wangle me some work in Singapore. Great, as a freelancer, it’s always good to know these things. So this morning in the coffee shop I’m relaying all this to my friend about how if work starts to slow down in London I could always give Singapore a shot, and I notice he’s looking at me a bit strangely. So I ask him what’s up and he says, “Can you go to Singapore? Haven’t you got to have another operation?” Oh. That. I’d totally forgotten the small matter of my health. My friend has a point, until some sort of decision is reached on what the next step is with my colostomy reversal, I can’t very well go swanning off. That’s okay though. I’m not in any hurry to leave London. For the time being I’m happy to enjoy a few more early morning coffees in Soho. And reflect on the fact that occasionally I feel so well that I forget all about UC, hospitals and my colostomy bag and it actually takes a friend to remind me.

Things like this don't happen when you've got a colostomy bag

You can always spot someone with ulcerative colitis in a shopping centre. We’re the ones who don’t look entirely at ease. We’re the ones constantly scouring our surroundings for toilet directions. That’s us with the twitchy, squinty eyes. We may say we’re just looking to see what floor HMV is on, but don’t be fooled, we know what floor HMV is on. What we want to know is what direction to run in if we have to. No sooner have we passed a direction sign for the toilets than our eyes start darting about looking for the next. We are nervous rabbits and the toilets are our burrows. We don’t like to stray too far or we become jittery. The reassurance of well signposted toilets is appreciated. We like arrows that point us in exactly the right direction. When we’re on the verge of crapping ourselves outside WHSmith on a Saturday morning we need simple, clear instructions. We don’t want to be left in any doubt as to where the precise location of the loos are. We don’t like signs that are open to interpretation. The worst direction signs are the ones where the arrow points diagonally up to the left or the right. What does that mean? Veer to the left? Up the escalators? Up the escalators and veer left? Come on, what does it mean? Time is running out. We may have to plump for the escalators. It’s a guess. But what else do we have to go on? So we start running. We’re tearing off in the direction of the escalators. Whoever we came shopping with is now wandering around Topshop talking to themselves. We’ve gone. How slow are escalators? They go the minimum speed required to legally qualify as moving stairs. A fraction slower and they’d just be metal stairs. We’re bounding up the metal stairs two steps at a time, fully prepared to shit ourselves before we reach the top. And then up ahead we see the obligatory old lady preparing to get off the escalator. She’s spreading her legs wide for balance and bending her knees, shopping tucked high under her armpits, she does a few practice semi-squats. You’d think she was readying herself to do a sky dive, rather than step off an escalator not moving in excess of 0.2mph. Just step off woman! Step off! We’re pooing our pants back here. Too late, we push her square in the back and trample her into a 1981 Charles and Di memorial floor tile. Breathing heavily we think. Think. Think. Veer left the sign said. There are some double doors. Brilliant. We sprint off, already unzipping and unbuckling things. We crash through the doors – no toilet – we’re in the car park. Shit. Things are going to get messy if we don’t find somewhere soon. Then we see it, rising head and shoulders above all the other cars. It’s a big 4x4. A big 4x4 that could just give us the cover we need. It’s the best plan we’ve got, so we position ourselves behind the 4x4 and squat, one hand on the wheel arch to steady us. As soon as our legs bend it acts like a trigger and spewwwwwwweuggghhhhh. Oh, that does feel good. Phutttphutttphuttt. It’s surprising how echoey these car parks are. We start to feel a little better though. Well, as good as it’s possible to feel for someone having a dump behind a 4x4 in a shopping centre car park. And we’ve got our Handy Andy’s in our coat pocket. Looks like it’s all worked out in the end. We may have got away with it. Then we hear the beep-beep-clunk of the remote central locking and the lights on the 4x4 flash on and off. Oh no. Shit. We haven’t got time to finish. We hear footsteps approaching. And children’s voices. Slowly and silently we bring our coat hood up over our head and remove our supporting hand from the 4x4. Hugging our knees and rocking gently we await the screams.

Depression poll

My knowledge of depression is sketchy. It’s an emotive subject. It’s also a very personal one, and like UC, people are often afraid or too embarrassed to talk about it. Dealing with a long term chronic illness isn’t easy and according to doctors serious medical conditions like UC can contribute to depression. So this poll is about how UC affects us mentally. How are we all feeling? The poll is just over there on the right.

Get yer tats out

A shard of sunlight narrowly falls short of my table situated just inside the café door. Outside the unrelenting sun has taken the bustle out of the market. Passers-by stick close to the slither of shade provided by the shop fronts. This is the kind of heat that us Brits usually only ever experience when it hits us smack in the face as we step off the plane on our holidays to the Med. We don’t often get weather like this. And almost never during Wimbledon. A gang of loose-limbed youths drift past, each topless, proudly displaying their tribal markings of acne and West Ham tats and as I follow their slow progress out of sight my mind turns to men’s nipples. At the recent wedding in Munich I had the pleasure of meeting a young lady who works in the marketing department of a company manufacturing breast pumps. Given that most people you meet at social functions nearly always have boring jobs, with breast pump girl I really felt I’d struck gold. Conversationally she was a keeper, so I attached myself to her very much like a breast pump to the breast. I previously had no idea breast pumps were so fascinating or indeed that I was so fascinated in breast pumps. During the course of our conversation I learnt that it is even possible to get milk from my nipples. Apparently tests have been done, and if a man uses a breast pump every day, over the course of a year he will start to produce milk. I don’t know if this is true or she’s cleverly trying to double her potential customer base, you know what these marketing types are like. More shirtless men catch my eye and I find myself staring at the spot on their stomachs where my bag is on mine. I wonder what reaction I would get if I stripped off my shirt? It seems people will tolerate the sight of endless heavily perspiring sunburnt beer bellies with fag ash and crisp crumbs caught up in chest hair and even the fish-skinned bag of bones druggies that litter the lower end of the market, but what about a colostomy bag on show? There’s a time and a place for semi-nudity and I’ve never been one to unnecessarily inflict my pallid torso on the general public. Once on a beach in India, on one of the rare occasions I took my top off, I caused near hysteria amongst the local children who delighted in pointing at me and saying I looked like an ‘egg’. Their observation being my skin was the same colour as eggshells, which apparently in India are white. Ha-bloody-ha. So never having been much of sun worshipper, it would seem perverse to want to start now that I have a danglesack of plop stuck to my belly. But it would be interesting to see how people would respond to a bare-chested man walking down Walthamstow Market with a colostomy bag on display. In my opinion it’s far less offensive than some of the tattoos you see.

Wednesday's diary on a Thursday 6.6

Regular as clockwork, and as boring as a very plain £8.99 wall mounted kitchen clock from Argos, it's WDOAT.

Wednesday 1st July:
6.45am Change bag
1.15pm Change bag


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

Comments:
Nothing to report. Seriously, nothing. Zilch.