Number Twos

From there to here: my UC story at a glance

2010-04-06T21:01:00.004+01:00

I started Number Twos in July 2007, a couple of months after my first major flare-up and hospitalisation. If I had anything as grand as a founding principle it was to try to be as honest as possible. So as a record of my life with ulcerative colitis I think it’s pretty accurate. But recently I became curious about how the doctors have charted my illness, so I asked for a copy of my medical records.

For the first time I can see my journey in plain black and white. It reads like Number Twos with all the poo jokes taken out. It’s a skeleton of this blog if you like. Using my records I’ve been able to create a timeline from the very first time I went to the doctor with UC symptoms to the present day. To keep it simple I’ve omitted the various medications I’ve tried.

Two things strike me about my UC timeline. Firstly, in the very early days I continually failed to keep appointments with gastroenterology, which shows just how seriously I was taking things. And secondly, after a fairly stable period in 2008, it all suddenly went down hill very quickly. Bad luck I guess.

Finally, my medical records are a hefty 12mm thick and I agree with everything the doctors have written, apart from 7 words: Patient reports he is keen on surgery. That makes it sound like something in a lonely hearts ad, ‘I’m keen on country pubs, going to the cinema, reading and surgery.’

I would just like to make it clear the patient definitely was not keen on surgery. For the record, you understand.

5/8/05 First appointment with my GP with loose bowel movements and bleeding – my first flare-up. Referred to gastroenterology department at hospital.
8/9/05 Failed to attend gastro appointment.
13/10/05 Failed to attend rescheduled gastro appointment. No further appointments to be made.
14/2/06 Second flare-up. Appointment with my GP. Referral to the gastro department.
23/3/06 Attended first gastro appointment.
6/7/06 Sigmoidoscopy reveals extensive ulceration up to 50cm.
28/7/06 Diagnosed with distal ulcerative colitis.
26/1/07 Failed to attend gastro appointment.
13/4/07 Gastro appointment. Report 10 bowel movements a day.
24/4/07 Third flare-up. Admitted to hospital.
30/4/07 Discharged from hospital
29/6/07 Gastro appointment. Report 6 bowel movements a day. MRI scan demonstrates no evidence of fistula or abscess.
9/7/07 Blood tests reveal marked degree of inflammation.
21/9/07 Gastro appointment. Report 2-3 bowel movements a day.
11/1/08 Gastro appointment. Report 2-3 bowel movements a day.
15/2/08 Gastro appointment. Report normal bowel movements.
30/5/08 Gastro appointment. Report 2-3 bowel movements a day.
26/1/09 Admitted to hospital.
29/1/09 Sigmoidoscopy. Deep extensive ulceration with fissuring.
4/2/09 Discharged.
20/2/09 Readmitted to hospital.
26/2/09 Sigmoidoscopy. Deep ulceration and formation of pseudopolyps beyond the rectum culminating in a mass of them in the descending colon. Patient reports he is keen on surgery.
27/2/09 Colectomy surgery.
5/3/09 Discharged
18/6/09 Colonoscopy. Mildly active UC in descending colon and rectum.
17/3/10 Endoscopy. Awaiting results.

Eavesdropping, me?

2010-03-30T18:46:00.003+01:00

A couple of years ago I was freelancing for a company in Spitalfields, East London. Befitting of the E1 postcode the offices were extremely funky. In the basement there was a kitchen area and three large, red leatherette, high-backed booths. A bit like an American diner.

One day a colleague and myself were having our lunch in one of the booths. We’re quietly eating when we become aware of a conversation in the booth behind ours. We can’t see them and they can’t see us.

A male voice speaks first, “So how was your weekend?”

“Not brilliant,” a female voice replies, “I was up at my parents.”

Mildly intriguing. Both my colleague and I stop chewing and instinctively lean back so we can hear better.

“Yeah, I’m still working through some issues with my dad,” continues the girl, “Stuff from my childhood.”

My eyes widen and my colleague pulls an ‘eek’ face. I flap my hands, meaning ‘shhh’, even though he hasn’t said anything.

“It’s only recently that I’ve been able to forgive him. And my mum, too, for letting it happen,” says the girl.

Letting what happen? Cripes, she must be one of Fred and Rose West’s kids. This is terrible. There’s a long silence.

Then the guy speaks, “Do you mind me asking…?”

“God no, it was all a long time ago,” she says.

I hold my breath. No way I’m missing this. I sit up as straight as I can, tilting my head so my ear is as close to the rim of the high-backed booth as possible. My colleague does the same. It looks like we’re hanging from invisible nooses.

The girl’s voice is now tinged with regret, “A friend from school’s parents were going away for the weekend and she had a party, but my dad wouldn’t let me go.” She let’s out a sad little sigh.

She wasn’t allowed to go to a party? No, no, no, that can’t be it? There must be more to the story than that? Maybe she missed out the bit about being handcuffed to a radiator from the age of four to seventeen? Or how she was forced to serve drinks topless to her dad and his mates? Puffing my cheeks out I slide back down the booth. My colleague rolls his eyes. I slowly close mine, shaking my head witheringly. We continue to eat in silence.

Now I know you shouldn’t eavesdrop, but what I always say is, if you don’t want your conversations to be overheard, use telepathy. That’s what it’s for.

I recount this story because I think there’s a good lesson to be learnt from it. And it’s about the importance of keeping things in perspective. Perhaps I’ve been too quick to judge this girl, but from what I heard it seems she has taken a fairly minor adolescent grievance and fleshed it out into a full blown ‘issue’ that apparently she is still dealing with many years later. A mountain may well have been made out of a molehill. I’ve been guilty of doing the same myself.

But one thing I’ve learnt from Guru Cohen, and my dabblings into the happy-clappy world of self-help, is to keep things in perspective. And I believe it has made a huge difference to my general wellness and state of mind over the last year.

To be frank, having a colostomy bag can sometimes be a real shitter; I have to empty it, change it, it sometimes leaks, I’ve got a yucky looking hole in my tummy, you get the picture. It would be quite easy to let it get me down. Which is why I make a real effort to keep things in perspective; it only takes a minute to empty my bag, I can practically change it in my sleep, it doesn’t leak very often, 99.999999% of the world doesn’t know I have a hole in my tummy. Whenever my stoma infringes on my life, I try not to roll my eyes or sigh or grumble or whinge or let my head go down, I just deal with it as quickly as I can and then move on and forget about it. Making a conscious effort not to dwell on the unavoidable little niggles of life with a bag and to pivot my thoughts to the positives means I’m in a much happier place.

And that is why no one will ever overhear me complaining about having to deal with ‘issues’ with my colostomy bag. I’ve got it in perspective.

Oh Vienna

2010-03-28T15:06:00.008+01:00

Recently I spent a few days wearing out the soles of my new shoes exploring Vienna. If you haven’t been, and you like a bit of culture with your schnitzel, I highly recommend it.

But never mind the museums and art galleries, it’s worth a visit for the magnificent cafes alone. Tucked away in a snug booth, watching the bow-tied waiters jink between tables, in a café that has barely changed in a century is an experience you just don’t get in Starbucks, where often the only thing that can claim to be old is a muffin nearing its sell by date.

It was in one such café that Elisabeth asked me if I would be interested in going to a bar she had found in one of our guidebooks. Through a mouthful of cheesecake I mumbled that I wasn’t particularly fussed. Then she told me the name of the bar.

Half an hour later we’re in the Museums Quartier and I’m gleefully peering through a very large bumhole into the interior of Bar Rectum. As I tweeted to Arkayeff, I've made an arse of myself in plenty of bars in my time, but I've never been in a bar made of an arse before.

Anyone who has had an endoscopy will notice this bowel is UC free.

Note the Germanic attention to detail: beanbags in the shape of shit.

Badges

2010-03-27T15:36:00.006Z

On my travels I’m always on the lookout for interesting badges, which at some future date, may or may not be used to jazz up a jacket or jumper. That sentence may seem a little odd coming from a 38-year-old man, but what can I say, in my opinion a little scrap of tin can only enhance a Marks & Spencer pullover. (Of course if M&S actually started selling jumpers with badges already on them, I would take them off. I’m contrary like that.)

A badge that caught my eye a while back is the one above. It’s a Help For Heroes badge and the £3 I paid for it goes to wounded servicemen, which is very commendable, but not why I bought it. I just thought it would add a Modish touch to an otherwise plain Uniqlo jumper I have.

One of the things I find with wearing badges is they intrigue people. Quite often perfect strangers will ask me the significance of them. One badge I have is a little metal hand grenade, and when I inevitably find myself explaining to someone in the Post Office queue, that it has no meaning and that I just like it, they look disappointed, like they were expecting me to tell them I was awarded it for my part in the storming of the Iranian Embassy in 1980. The truth is sometimes badges are just badges and nothing more than a piece of whimsy.

But recently I’ve started to look at my Help For Heroes medal in a new light. I bought it shortly after my colectomy op last year and I’ve decided that from now on it does have some significance. I’m awarding it to myself for the way I’ve handled the last 12 months. Obviously many people face far, far bigger challenges than adapting to life with a colostomy bag, but I’m going to give myself a pat on the back, because I’m kind of proud of myself. And I’ve not always been able to say that, because in the past even the slightest hiccup in my life would have had me self-medicating on vast quantities of Guinness. Sadly for the landlords of my old watering holes in Walthamstow, I’ve been dealing with things with optimism and positivity, not alcohol and more alcohol.

And I’m pleased to say it’s working. Life is good. I am very happy. The last year has been great. Of course, I don’t really think I deserve a medal for being an ostomate and when someone asks me what my badge is for, I’ll do what I always do, and tell them I just like the colours and I think it’s cool. Privately though, I know it means a little bit more to me than that.

Number Twos will return in the new year probably around the time I have my op

2009-11-30T17:01:00.001Z

Every UC cloud has a silver lining

2009-11-24T20:50:00.004Z

The other day I received a letter from my GP. An appointment has been made for me to have the Swine Flu Vaccination. I think I qualify because I’m on azathioprine, which is an immunosuppressant. There aren’t too many advantages to having ulcerative colitis, but getting the Swine Flu Vaccine might just be one of them. I feel like I’ve been given the last cabin on Noah’s Ark. I’m on the last chopper out of Saigon. I’m one of the little green aliens in Toy Story that get picked up by the claw. I’ve been saved. Just as long as I don’t catch anything between now and 10am on 1st December.

Does anyone know where the gents are?

2009-11-22T17:51:00.003Z

The online UC community is much bigger now than it was when I started blogging in 2007. Back then there were the web forums run by the various IBD groups and organisations, but very few blogs. As you can see by the links section over there on the right, that’s all changed. More and more of us are now sharing our experiences. Which can only be a good thing given ulcerative colitis is an illness few people openly talk about. I have noticed though that there aren’t too many male UC bloggers. Also most of the comments I get on here are from women. It’s the same with the Number Twos followers. Nearly all girls. As far as I know UC affects men and women equally, so where are the chaps? Are men just less comfortable talking about their illnesses? Do they prefer to tough it out in hairy-chested, square-jawed, manly silence? Are men too busy huntin’, shootin’ and insulatin’ the loft cavity space to be wittering on the internet? If this is the case, where does that leave me? Am I a big girl’s blouse for blogging about my UC?

Ostomy & me

2009-11-20T16:53:00.005Z

Sometimes I think I don’t blog enough about being an ostomate. This might be because I know I’m not going to be one forever. To use a footballing analogy, I feel like I’m only on loan to the ostomates. And early next year when I have my reversal I’ll go back to being just a UC person. Or if I can emulate Guy Cohen, I might even be a regular healthy person. Who knows? But right now I am a fully-fledged, colostomy bag-wearing ostomate with ulcerative colitis. I should probably talk about it more.

It was only eight months ago that I was totally floored by the flare-up that was to lead to me becoming an ostomate. I wasn’t able to go to work. I could barely get to the shops and back without having an accident. And I was often waking up three or four times during the night to go to the toilet. It was physically and mentally draining. I was also hospitalised a couple of times, but no amount of medication made a difference. Surgery started to look like the only way out. I wasn’t exactly mad about the idea of having a colostomy bag, but nor was I in love with remaining in the grip of a flare-up indefinitely. Plus I needed to get back to work. I’ve got a mortgage and bills to pay. Having the op meant if all went well I would be back at work in a month. That was the deal on the table. I took it.

Since my operation on 27th February I haven’t looked back. There were a few niggles in the early days, which I wrote about at the time, but eight months on and I’m in a very good place. Becoming an ostomate really, really isn’t the end of the world. Without wishing to sound too dramatic, the operation gave me my life back. I’ve worked solidly since the end of March. Most evenings I walk half of the way home to either Liverpool Street Station, which is 2.7 miles or Highbury & Islington Station, which is 2.8 miles. In August Elisabeth and myself completed a 12 mile hike in the Lake District. Neither of us had ever walked that far in our lives before. I fly regularly back and forth to Germany. And recently I went up in a hot air balloon, which given its lack of onboard toilet facilities would have been an absolute no-no before. Having a colostomy bag doesn’t stop me doing anything. These days if I get exhausted it’s because I’ve walked from Oxford Circus to Walthamstow or I’ve gone nuts to Eye of the Tiger one too many times.

And if for some reason I couldn’t have my reversal in the new year and I was an ostomate for life, I could live with that. No problem.

On my recent balloon trip the nearest loo was only 30 metres away - straight down.

Number Twos Productions presents...

2009-11-19T21:52:00.000Z

Sophie's Surprise

Happy feet

2009-11-18T20:54:00.005Z

My legs are bending and clacking straight again like a builders tape measure. Bend, straighten, bend, straighten, bend, straighten. This is me dancing. Well, the lower half anyway. The upper half is doing its own thing entirely. My arms are bent at the elbow. I know this much. But past the elbow it’s anyone’s guess. Some sort of twirling might be occurring. It’s hard to say. Perhaps windmilling is a better description. So, to recap – legs: bend, straighten, bend, straighten, bend, straighten. Arms from the elbow down: twirl, windmill, twirl, windmill. Sounds about right. I’m fairly certain if I ever danced like this in a club a 24hr vet would be called out and I would be shot with a sedative dart. Fortunately I’m in the privacy of my spare room. Blinds closed. As are my eyes. Clinging for dear life to my wildly bucking head is a pair of headphones, through which blasts Eye of the Tiger by Survivor. Perhaps better known as the theme song from Rocky. 3 minutes 53 seconds of pure testosterone-pumped cheddar. And I’m doing the full Travolta to it in my back bedroom. Legs: bend, straighten, bend, straighten, bend, straighten. Arms from the elbow down: twirl, windmill, twirl, windmill. Oh, for pity’s sake what now. Cripes. I’m triumphantly punching the air with a clenched fist, which is odd because a 37-year-old man rocking out to Survivor on his own isn’t anything to feel particularly triumphant about. I’m too English for this. I do feel ever so silly. But I’m possessed by the steady rhythmic beat of the drums, which sound like the pounding feet of Hannibal’s war elephants on the march. As I pirouette out of a deft little Northern Soul spin I remember Guru Cohen’s words, “Really go for it and dance and celebrate being well again, feel the joy and happiness just like you’re completely better, really get into it and feel those emotions, be grateful for being healthy.” So as my legs bend and straighten and my arms twirl and windmill and punch the air I focus my mind on what it would feel like to be well. I summon up the spirit of Rocky and imagine myself as victor. I try to visualise myself totally fit and free of ulcerative colitis. I try to feel it as if it were true. It’s a huge mental effort, but I start to smile, and for a fleeting moment I do feel something, and it feels good.

Every day after I’ve finish my hypnotherapy session I put my headphones on and dance to Eye of the Tiger. I no longer feel such a berk and I quite enjoy it now. I’m not sure if it’s having any effect on my UC, but my dancing is coming on in leaps and bounds, and I’ve been called back for a second audition for Grease: The Musical.

Prattle, prattle, prattle, prattle, prattle, oh that’s nice, prattle, prattle

2009-11-17T21:00:00.003Z

Every now and then, in a desperate bid to inject some much needed variety into this tired old grey sock of a blog, I resort to posting pictures that in all honesty have diddlysquat to do with ulcerative colitis. Though instinctively I feel a photograph of a toilet seat with some crocodile teeth painted on it (which I posted ages ago) can only lift this blog to loftier heights. Such visual witticisms add a nuance of texture. It's all about light and shade. And just as the classic Beatles album, Revolver has the acid-tinged psychedelia of Tomorrow Never Knows rubbing shoulders with the pre-school tomfoolery of Yellow Submarine, on Number Twos you will often find my inane whimperings shored up with something far more rewarding. Like this picture of a load of old bog rolls stuck up in someone’s spare room.

I think Pixar are safe

2009-11-16T17:21:00.001Z

I made another film. I’m not going to post it here because Number Twos is an extremely serious blog, with certain editorial standards that must be upheld. If you do want to watch the film you can see it here, where there are clearly no standards whatsoever.

Image is everything

2009-11-15T17:19:00.005Z

Thanks to an outbreak of flaky, head-to-toe eczema as a baby I missed out on being christened. I can only imagine my parents thought there was a danger I’d dissolve in the font. Or one of my limbs would break off like an over-dunked Hobnob. As a result I’m not a particularly religious man. But I do love a good church. I just think they’re amazing places; the stonework, the stained glass, the tapestries, the carpentry, the big organ thing with the giant set of panpipes sticking out the top. From nave to pulpit churches are flippin’ impressive. But if churches are still capable of wowing our 21st century eyes, imagine how mind-bendingly impressive they must have been to our ancestors, who in all probability would have never seen an IKEA, like we have. For the average medieval peasant, the local church would have been as sexy as hell. A bit like Harvey Nichols is to us now. In the wattle and daub landscape churches would have added a touch of glitz and glamour. The church knew how to create a good image. All that gold and stained glass was there to seduce us. And I guess over the centuries it worked.

What’s the matter with the truth? Everything comes in packages. If it’s in a package you can bring the devil in the house. People rely on packages. If you will wrap it up, they will take it.
Saul Bellow, ‘The Victim’

But as church congregations dwindle it seems more people are turning to the self-help section of their local bookshops for spiritual enlightenment. I don’t think this is any more right or wrong than being fed a Pringle by a middle-aged man wearing a purple dress. As John Lennon sang, ‘Whatever gets you thru the night, s’alright.’

Regular readers of Number Twos will know that recently I have been exploring alternative therapies in an attempt to rid myself of ulcerative colitis. This has taken me deep into the murky world of self-help. And whilst it continues to be a fascinating, and I think, a rewarding journey, one thing concerns me. Self-help has an image problem. It looks naff.

A majority of the books, websites and DVDs I’ve come across look cheap, tacky and poorly produced. It’s like Del Boy has twigged there might be a few quid to be made in the self-help business and has got Rodney to knock something up on his ‘puter.

Self-help looks low-rent. The moment I see faux-Michelangelo illustrations, techy brainwavey icons or dodgy quasi-religious scrolls I start to get suspicious. Much of the design and imagery is so heavy-handed and desperate to be taken seriously, for me it actually has the opposite effect. And the music in some of the films I’ve watched on youtube sounds like it’s being played on Casio keyboards rescued from the rubble of a Tandy store after a gas explosion. I assume the filmmakers were aiming for ethereal and soothing, but again, it just comes across as cheesy and bargain-basement. Sigh.

In my opinion these low production values undermine the message. Sometimes how you present something is just as important as what you present. Personally I think there are some really worthwhile ideas that fall under the umbrella of self-help, that do deserve a wider audience, but until the writers, filmmakers and designers start to consider how they package their message, many people will continue to be put off. As the church understood, get the image right and people will take notice.

Sympathy in the Workplace

2009-11-14T15:32:00.004Z

I discovered this animation site and made a little film. Hope you like it.

(If you double-click the film I think it'll take you through to the site where you can watch it in its proper format.)

Back to the future II

2009-11-07T12:25:00.005Z

I’m still drawn to this time machine idea.

Having lived with ulcerative colitis for a few years now, I’ve got a pretty good understanding of how it impacts on my life.

I suppose it’s called experience.

But just because I have all this ‘experience’ it doesn’t mean I think I know all the answers.

I really, really don’t.

Although there is some stuff I know now that I wish I’d known when I was first diagnosed.

And I suppose that’s called hindsight.

For example, it would have been good to know about Guy Cohen and some of his ideas 4 years ago.

There are lots of things that I would like to have known earlier.

But they were either not available to me or I wasn’t looking hard enough for them.

And I didn’t turn up in a time machine with a handy little UC guidebook from the future either.

So, I’m not sure where I’m going with this.

I’m just really intrigued with the idea, that if I could go back to 2005 what would I say to myself?

Or if I could give myself a notebook full of advice, what would be written on those pages?

Bloody Redgrave. Again

2009-11-05T13:31:00.003Z

Sir Steve Redgrave may be a pretty useful oarsman, but he wouldn’t be much cop as a UC blogger.

In his book Inspired: Stories of Sporting Greatness he dedicates just 5 pages to his ulcerative colitis. But maybe he’s right to downplay his illness? Some of his success may be down to not giving his illness a bigger role than it deserves.

In one of the few passages in which he actually talks about UC he says this.

Both before and after the Olympics the colitis was hard to manage and sometimes excruciating, but for a ten-week window which culminated in Barcelona I was fine. That’s why I say it was only partly the medication that helped me to my third gold and Matt to his first. The other part was something I never fully understood, something along the lines of willpower. I don’t know whether stories of women finding the superhuman strength to lift ton-weight of cars to rescue their children are purely mythical. All I know is that I’m more prepared to believe them after the Barcelona Olympics.

It’s very interesting that he credits willpower. This ties in with everything Guy Cohen believes.

It also makes me wonder if blogging about ulcerative colitis, and therefore dedicating a sizeable chunk of my time to thinking about it, may actually be detrimental to my health?

Maybe it’s time I gave my UC a smaller role?

Wednesday's diary on a Thursday 8.2

2009-11-05T13:27:00.001Z

Wednesday 4th November:
3.45am Change bag
7am Change bag
11.50am Empty bag
4.30pm Empty bag
7pm Empty bag
9.55pm Empty bag

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

Therapies:
McKenna

Noticeable improvements:
Blood.

Mood:
Still good.

Back to the future

2009-11-03T21:30:00.004Z

If you had a time machine and you could travel back to the day you were first diagnosed with ulcerative colitis, what advice would you give yourself?

This is my first stab at it:

You may not be able to control everything that happens, but you can always control how you deal with it.

What would you say to yourself?

It could make an interesting/helpful/inspiring/funny little book?

Wednesday's diary on a Thursday 8.1

2009-10-29T16:42:00.003Z

Wednesday 28th October:
7am Change bag
11.30am Empty bag
6.45pm Empty bag
9.30pm Empty bag

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

Therapies:
None.

Noticeable improvements:
No blood.

Mood:
Good.

Bedtime reading

2009-10-28T21:16:00.005Z

Foyles sits on the edge of Soho like a bookend. Established in 1903 it is the Harrods of bookshops. In its heyday Christina Foyle held literary lunches on the premises, attended by famous writers of the time. If ever the Oxford English Dictionary were stuck for a definition of ‘intimidating’ then ‘Foyles literary lunch’ would sum it up well for me.

Recently I did something in Foyles I’ve never done before. I went downstairs to the basement floor in search of the self-help section. It’s ironic that you have to go down to find the books that will make you feel up. What immediately struck me about the self-help section is its size. The shelves are floor to ceiling with books written by gurus of every description; businessmen, entrepreneurs, doctors, hypnotists, healers, religious leaders, celebrities, sportspeople, professors, scientists, philosophers, weathergirls (probably); the selection is mind-boggling. In fact someone should write a self-help guide to self-help guides. It would probably sell.

There clearly is money to be made in the self-help business. I’ve read a few articles recently suggesting the current popularity of the genre is largely down to the credit crunch and modern life being a bit stressy and shit. There’s probably some truth in that. A couple of journalists even go as far as to actually blame the banking collapse on self-help books themselves, which they claim are responsible for psyching up city traders and making them feel invincible. At this point it all gets a bit chicken and egg and I need to lie down.

Whilst flicking idly through various books, with bombastic titles such as Want it, See it, Get it! I surreptitiously took a peek at my fellow browsers. They didn’t look desperate, unstable, depressed or haunted, like they were about to throw themselves under a tube train. Nor did they particularly look like pumped up little Gordon Gekkos. They actually appeared an incredibly normal bunch. Although I did note we were all men. Perhaps women solve their problems by talking about them, whereas men prefer to furtively underline key phrases and scribble notes in the margins of self-help books?

There’s a lot of scepticism about the self-help industry. And when you read some of the titles, like Happier Than God and Awaken The Giant Within it’s easy to see why. The style of some of the writing doesn’t help either. A couple of books I picked up read like nothing more than extended penis enlargement ads. But I decided to hold back on my cynicism. After all you don’t dismiss John Steinbeck because he happens to be on the same shelf as Danielle Steel, do you? Like any genre, there must be good self-help books and bad ones. It may be a case of not judging a book by its cover. Or even its chest-beating, testosterone-enhanced title.

On the recommendation of Guy Cohen I bought Paul McKenna’s Control Stress book. I like it, a lot of it makes sense to me and it dovetails nicely with Guy’s therapies. If you feel stress may be an issue for you I think it would be £10.99 well spent. Since my trip to Foyles I’ve started to amass a small library of self-help books and related newspaper articles. (I’ve found quite a few books in charity shops, which perhaps isn’t a good sign.) Some of the stuff I’ve read seems a little fanciful, but on the whole I find them really useful to dip into for a nugget of wisdom or a piece of fresh thinking. A few pages a day seems to help keep me focused and heading in the right direction. For me, self-help books can be a great resource if you open them with an open mind.

One of Nena's 99 red balloons borrowed for use in Crohn's and UC song

2009-10-24T09:34:00.003+01:00

Red Balloon is a song written by Lauren Bruno and featuring Mike McCready of Pearl Jam to raise awareness of inflammatory bowel disease. It’s very inspiring to see people putting themselves out there and using their creativity to help others. Incidentally, I’m going on a hot air balloon ride next weekend. I’m not sure if it will be red though. And I won’t be singing.

Bloody Redgrave

2009-10-22T12:37:00.003+01:00

A word of advice to anyone newly diagnosed with ulcerative colitis.

Chances are until recently you’d never heard of ulcerative colitis, and as soon as you got home from the hospital you probably did what most people do and went straight on Google. Maybe that’s how you ended up here?

And amongst the flotsam and jetsam of UC related stuff on the internet you may have read that Olympic legend, Sir Steve Redgrave also has ulcerative colitis. This is true, he does. He’s one of the very few public figures who are happy for the world to know they have a bowel disease. This is to be applauded.

Now, when you come to find yourself explaining to your friends, family and colleagues what exactly UC is, it may be tempting to drop in the fact that Sir Steve Redgrave has it. This is perfectly natural. It somehow helps normalise it for people. In their heads they’ll think “Oh, if Sir Steve Redgrave’s got it, it can’t be contagious because he had to sit in a boat with other people and I’ve seen him shake hands with the Queen.” It helps people contextualise it.

It’s understandable that anyone with any sort of illness would seek out a celebrity with the same condition. I imagine Professor Stephen Hawking often told his friends, “You know that Davros from Dr Who? Well he’s got what I’ve got.”

But if you were thinking of telling people you have the same disease as Sir Steve Redgrave, don’t.

It’s not worth it. And I’ll tell you why. Next time you phone in sick, or cancel a night out, or try to get out of going to Ikea and you use your UC as an excuse, Sir Steve-sodding-Redgrave will be thrown back in your face. Gold medals and all.

You see, somehow Sir Steve managed to go and win gold at five consecutive Olympic Games all whilst having ulcerative colitis. And he wasn’t doing shooting or bowls or some namby-pamby sport, he did it in rowing, one of the most physically demanding events you can do.

Up against that your excuse that you’re too tired to go to Aunt Jean’s birthday party suddenly sounds a bit lame.

So if you want an easy life, mark my words, don’t ever, ever tell anyone that Sir Steve Redgrave has UC.

Wednesday's diary on a Thursday 8.0

2009-10-22T11:03:00.002+01:00

Wednesday 21st October:
6.50am Change bag
11.30am Change bag
3.30pm Empty bag
6pm Empty bag
8.45pm Empty bag
11.15pm Empty bag

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

Therapies:
Paul McKenna Control Stress relaxation therapy, Rewind technique

Noticeable improvements:
A smidgen of blood. Not enough to satisfy a vampire gnat.

Mood:
Unworried

Gratitude

2009-10-21T18:20:00.008+01:00

On my computer desktop there’s a Word file saved as Gratitude. It was originally called Joy, but that seemed too hyperbolic. Then it was called Whoohoo, but that felt slightly sarcastic. So now it’s just called Gratitude.

Every night before I go to bed I open up the Gratitude document and write a list of all the things that I’ve been grateful for during the day. It can be anything. If I had a particularly good cheese sandwich for lunch, it goes on the list. If someone compliments my shoes, it goes on. If I have a niggle-free bag day, I put that on the list. I work with talented, interesting people, so I put that on my list. My girlfriend goes at the top and in CAPITALS. Personally I don’t like to use too many exclamation marks, but they’re sprinkled all over my gratitude list like hundreds and thousands. I think it’s okay to be cheesy with it.

When I first started writing my daily lists I felt a bit of a plonker. It didn’t feel like something a 37-year-old supposed man of the world should be doing. It felt naff. But that feeling quickly went away. What I find now is just the act of writing the list shifts my focus away from life’s irritations and niggles. And after I type out each thing I’m grateful for, I give myself a moment to think about whatever it is. It sounds corny as hell, but it’s kind of hard to stop myself smiling.

Keeping the list also makes me more conscious of the good things in my life. It makes me seek more of them out. I look for them now. Yesterday I was walking through Piccadilly Circus, which I’ve done hundreds of times before, but just for once I stopped and took it all in. And as I looked around me I thought to myself – wow, I’m living in one of the most exciting cities in the world, on my way for a mooch round Waterstone’s Piccadilly, in a great art deco building and then afterwards I’m going to have a really good cheese sandwich. That’s pretty cool.

Now in cold black and white pixels that may sound like a load of old hippy nonsense, but just a few weeks ago I could have made the exact same journey and I would have been chuntering to myself about bloody tourists getting under my feet, the lights taking ages to change and generally being a cantankerous old git. I would have been so wrapped up in my gloomy thoughts Eros could have been replaced by Jesus the Redeemer and I wouldn’t have noticed.

And I wouldn’t say I was particularly unhappy before, or that I was a sour, miserable sod all the time. At least not outwardly, but inwardly I was perhaps dwelling on the negatives a little too much. I think I was probably like a lot of Londoners.

But just by spending a few minutes every day writing my list, littered with all those cheesy exclamation marks, I’m training myself to think more positively, to appreciate what I have and enjoy it. It makes me live much more in the present. Not in the past or the future, but in the moment.

So here’s an example of how I start my list:

Wednesday, 21st October, 2009

Today I am happy and grateful for…

1. Having the time to write a blog about my gratitude list

And then I keep adding to it until I run out of stuff. There's usually somewhere between 8 and 15 things on the finished list.

If you decide to give it a go, try it for a week and then let me know if you feel any different. I’d be really interested in the results.

It works for me!!!!

Loo roll sculpture

2009-10-20T20:27:00.004+01:00

I think these are really quite lovely.

Things I won’t be talking about in the lift at work but I will be talking about here

2009-10-20T20:08:00.003+01:00

Lift conversations should be kept light. It’s almost as if the lifts themselves can only carry conversations of a certain weight. Anything too heavy and there’s a danger the lift will grind to a halt. Or it can feel that way.

So as a rule of thumb, the lighter the conversation, the quicker the journey. The heavier the conversation, the slower the journey. If you don’t believe me, next time you’re in a lift with someone start a conversation about paedophile tagging. See how long that journey feels.

Lifts already carry signs to tell you how many people they can take – Maximum load 10 persons or 750kg. Maybe they should also have one for conversation – Maximum heaviness of chat ‘the weather’, ‘recent football results’ and ‘the Cheryl Cole did-she-mime-didn’t-she-mime debate’. It would be a handy reminder to keep things nice and light.

Of course, I already know this, which is why recently when someone in the lift at work asked me if I had done anything interesting the night before, I lied. That’s right, I lied to their face. Because the truth would have been far too heavy for lift chat. The truth would have meant telling them I spent the evening attempting to cure my incurable disease. It is, I think you’ll agree, a little on the weighty side. There’s a time and place for telling folk you’re attempting to cure yourself of an incurable disease, and it isn’t somewhere between the ground floor and the fourth.

In fact, outside of a small circle of friends and family and anyone who reads Number Twos, I have told very few people what I’ve been getting up to in my spare time. And even then I’ve been fairly vague about the details.

But over the next few posts I’m going to share with you some of the therapies and techniques I’ve been using to wallop my ulcerative colitis into submission. After years of my UC attacking me, I’ve started to fight back. And I’m throwing everything at it. It’s quite fun actually.

So in my next post* I’ll be talking about the role gratitude is playing in the war against my UC. It’s definitely not a topic for the lift.

*Okay, the post after the one with the loo roll sculptures.

Karate Kid Part II

2009-10-18T15:55:00.001+01:00

I wasn’t cut out to be the Midland’s answer to the Karate Kid.

When I was about 14 or 15 I joined a local karate club. Naively I had assumed karate was all about flying ninja kicks and screaming ‘haaayaaah’ a lot.

Oh, how wrong I was.

Karate, I soon discovered is incredibly disciplined. It is an ancient martial art form with very strict traditions. There is a clearly defined hierarchy and you have to behave respectfully at all times. I seem to remember being made to bow an unreasonable amount of times.

Karate is far from just a bit of a dust up in pyjamas; it’s a way of life, a philosophy.

And as a young teenager prone to giggling, that wasn’t my cup of sake at all. So after I got my first belt I bowed out. Literally.

Now let’s take a flying karate kick through the years to the present day.

And once again I find myself being challenged by something I had thought was relatively simple, but have since discovered is far deeper.

I’m talking about the hypnotherapy techniques I’ve been doing recently.

When I started I thought it was just a case of popping the headphones on, pressing play and letting it all wash over me. But it isn’t. There’s much more to it than that.

It’s not like going on a sunbed where you just lie there and 20 minutes later – bing! – you’re 2 or 3 shades closer to being racially abused by Anton Du Beke.

You need to play an active role in some of the therapies. You need to concentrate. You have to work at it. It’s a learning process. It’s ongoing. And it doesn’t end when the recording stops.

Like karate, it’s a way of life, a philosophy. And the more I practice the techniques, the more effortless they will become. My thinking will go from flabby to toned and my health, too, will improve.

I just have to stay committed and disciplined and not give up on it like I did with karate.

Wednesday's diary on a Thursday 7.9

2009-10-15T18:46:00.004+01:00

WDOAT has been a long-running feature on Number Twos since 1952, when it made its first appearance in exactly the same week Agatha Christie’s The Mousetrap opened in London’s West End. And like The Mousetrap, WDOAT continues to keep audiences from around the world on the edge of their seats week in, week out. An enduring tradition of WDOAT is that readers are asked not to reveal the surprise ending to anyone, to ensure it isn’t spoiled for future readers.

Wednesday 15th October:
6.45am Change bag
11.20am Empty bag
2pm Empty bag
5.50pm Change bag
7.30pm Empty bag
10.15pm Empty bag

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

Therapies:
Paul McKenna Control Stress relaxation therapy

Noticeable improvements:
Bit of blood.

Mood:
Disappointed. (Don't tell a soul.)

Are you a West Ham supporting ostomate who doesn’t work Wednesdays and has at least two friends?

2009-10-13T20:20:00.004+01:00

If so you’re in luck.

I received this invite today, but I won’t be able to make it.

If you would like to go, email me your address and it’s yours.

(Nice of them to design an invite that matches my blog so well.)

UC, diet, health, recipes and a girl called Penina

2009-10-09T07:59:00.009+01:00

You may remember a couple of weeks ago I wrote a post called ‘Why me?’ Well, amongst the comments was this one from someone called Penina:

I agree. I used to think "why me" when I was first diagnosed with Ulcerative Colitis, but getting "sick" helped me discover my passion for nutrition. Now I am working with clients with digestive issues to help them regain their quality of life, which is more rewarding than any corporate job I used to have. So I guess in the end...my disease was a blessing...

It sounded interesting. Penina had put her name to the comment, and it was in blue and underlined, which is always more fun, because you can click on it. This is the internet equivalent of stepping through the wardrobe; you never know where it may lead you, but you’re hoping it doesn’t involve rubber gimp masks and hamsters. (Or maybe you are?)

The click-through took me to a very lovely website called Feed Your Roots, which is written by Penina. It was immediately obvious she has no interest in rubber gimp masks and hamsters, but is clearly passionate about food and diet and the role it can play in our health. I thought it would be good to know more, so I emailed Penina to see if she would be happy to answer a few questions. She said yes. So I’d like to say a big thank to Penina for taking the time to do the Q&A.

Could you tell us a little about your history with ulcerative colitis?

Absolutely. In November 2006, I developed symptoms similar to a stomach flu and I could not seem to recover. Once I started bleeding, I was tested for a number of different illnesses and issues including parasites, but every test came back negative. It took about a month before I finally had a colonoscopy and that was how I was diagnosed with Ulcerative Colitis. My doctor said I had a mild case and that with the help of medication I should be in remission “in no time”. Six months later, my quality of life had not improved and I started looking for other options.

In June 2007, I found a health counselor in New York City (where I was living at the time) who specialized in digestive issues and scheduled an appointment with her right away. We discussed my current diet and lifestyle. I thought I was pretty healthy - I exercised regularly, ate well and was not overweight. She gave me several recommendations to start on immediately and this was the beginning of my healing process. Some of the recommendations were harder than others. Omitting coffee and beer from my diet was probably the most difficult. Once I got over the hump of my caffeine withdrawal haze, I could feel a positive difference in my body, but I still had a long way to go. Over the next several months, my health counselor helped me understand my body and my disease and how food can be used as medicine. My life was never the same again.

My illness helped me find my passion – nutrition. I am now a Certified Health Counselor and work with clients to meet their health goals to live a healthy fulfilling life.

I was fortunate to have the support of my friends and family. I could not have made these permanent life style and dietary changes without their love.

You were taking conventional medicine for UC, but you only started to improve once you changed your diet and lifestyle. What changes did you make?

That is correct. I tried medicine without making any diet or lifestyle changes for six months and did not show any signs of improvement. My diet today is plant-based with an emphasis on whole, nutrient dense foods. Whole foods have not been processed or refined and do not contain added ingredients like salt or sugar. They cannot be made in a plant or factory. I exercise regularly and incorporate stress-relieving activities like yoga into my routine.

It can be easy to get disheartened if you don’t see results straight away, how soon did you start to see an improvement in your health?

I think we live in a society that demands instant results. Everyone is looking for a “quick fix”. I think that is why fad diets and diet pills are so popular.

It takes time to undo the damage you caused your body over the years. Our bodies know how to heal if we give them the right equipment to do so. I started feeling more like myself again after a few weeks but it took several months before I went into remission.

And what’s the current situation with your UC? Presumably you still take some medication?

I am the healthiest that I have been in years. I am on a small dosage of Lialda, which I hope to eventually taper off of completely. I’ve been to 3 doctors since my initial diagnoses and none of them have been able to give me an explanation as to why my colon is pink and healthy.

It seems your approach is tailored to the individual and requires you make some pretty big changes to your lifestyle, what would you say to someone who would like to make those changes, but whose family is less than enthusiastic to swap their ‘normal’ diet for a whole food one?

I would also tell them that just a few years ago I was in their shoes. Some of family members did not understand why I was working with a health counselor. They always supported me, but did not understand. Then they saw how my quality of life improved and became “believers”.

I would also suggest that the individual schedule a Wellness Consult with me so that we could speak about their specific concerns in more depth. This is a 50 minute complimentary session where we discuss that individual’s heath history and how we could work together to start making changes for them to live a more fulfilling life. I work with clients by phone, Skype and in person and can be contacted at peninabareket@gmail.com.

When I was first diagnosed with UC I asked the doctors about whether a change of diet might help and they pretty much dismissed the idea there was any link between diet and UC. Do you think this is a belief the US medical profession shares or is it just a UK thing?

When I was first diagnosed my doctor also told me that I did not need to make any changes to my diet. I needed to experiment and see what worked for me because each person is different. While I agree that each person is different, we are also alike in many ways. How can food not play a significant role in a digestive disease?

I think many if not most medical professionals in the US do not think that diet and lifestyle play a significant role in “incurable” diseases like Ulcerative Colitis. I strongly believe that this is starting to change. There are many physicians who are leaders in their fields who believe food should be incorporated into medical treatment and I believe this already has a ripple effect. My father is an OB/GYN and initially did not agree that changing my diet and lifestyle could improve the symptoms of my disease. He has seen 2 of his 4 children develop UC and change their quality of life through diet and lifestyle. Today, he is studying to incorporate nutrition into his practice.

Stress and UC are quite often linked. Before becoming a health counselor, you had a job in the corporate world with a lifestyle to match; do you think this played any part in your illness?

For me, addressing and controlling my stress has played a huge role in the overall maintenance of my UC. I first started to show symptoms of UC during a very stressful period at work. A year later I had a terrible flare up which also happened to coincide with another stressful period at work. By working with a health counselor as a client and then through my training and education to become a health counselor, I have learned how to reduce my stress and what I need to do when life does get stressful so that I don’t flare. We all have stress in our lives, this is unavoidable for most, but the important thing is to learn how to deal with it before it controls our life.

I’m a big fan of the occasional curry, can you recommend a recipe?

Unfortunately, I don’t. Curry dishes typically have dairy and a lot of spice, which I avoid in my diet. I’ve tried curry-style recipes in the past that were dairy free, but I have not found one yet that I like enough to recommend.

Bugger.

Wednesday's diary on a Thursday 7.8

2009-10-08T14:20:00.004+01:00

Other things WDOAT could stand for:

Worryingly Dire Opinions Are Typical
Words Don’t Offer Any Titillation
Worthless Drivel Obviously All Toss

And my favourite:

Weekly Dose Of Arse Talk

Wednesday 7th October:
7am Change bag
2pm Empty bag
7.30pm Empty bag
11pm Empty bag

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

Therapies:
Paul McKenna Control Stress relaxation therapy, Rewind, Guy Cohen relaxation therapy, Geoffrey Glassborow relaxation therapy

Noticeable improvements:
Small amount of blood again. (Which technically isn't a 'noticeable improvement' is it?)

Mood:
Very good; but I have decided to pull out of my planned invasion of Andorra. (Apologies for the late notice.)

Monthly blood diary

2009-10-07T15:17:00.007+01:00

A month ago I started to keep a record of blood in my daily back passage movement. This is not the same as the output from my stoma into my colostomy bag. There’s never any blood in that. This is purely the stuff that comes out my rectum, and quite often has some blood in it.

The idea of keeping the blood diary is to see if the relaxation therapies I’m doing are having a noticeable effect on my UC. As you'll see below it all started very promisingly, but lately it’s become more hit and miss. The ‘no blood’ days are winning, but only just.

It’s worth clarifying, that when I say there is blood, it’s often extremely light. Just enough to turn the toilet paper pinkish. But I’m being very strict, there is either blood or there isn’t. Simple as that.

Unfortunately I don’t have any record of how often I had blood before I started the therapies. I think it was heavier and more frequent than now. The only way to see if things are improving is to keep up the blood diary and see how it looks in a month. Hopefully by 7th November there will be fewer blood days.

As I’ve mentioned in my weekly WDOATs, I definitely believe the relaxation therapies are having a positive effect on how I feel. And considering I worked 29 days out of the last 31 and a couple of weeks ago my girlfriend moved to Germany to start a new job, I think I’m remarkably chipper. I’m not sure that would be the case without the help of the therapies.

Speaking of which, you’ll also note that about half way through the month I thought it might be worthwhile keeping track of which ones I’ve been doing. There are four: Guy Cohen’s relaxation session, Guy’s Rewind Technique, Geoffrey Glassborow’s relaxation session and Paul McKenna’s Control Stress session.

Until we have something to compare this month’s blood diary to it doesn’t really tell us much. But if we were to look on the positive side of things – and that’s kind of how I like to think these days – there have been more ‘no blood’ days than ‘blood’ days. Which is a very good thing.

7.9.09 No blood
8.9.09 No blood
9.9.09 No blood
10.9.09 Blood
11.9.09 No blood
12.9.09 No blood
13.9.09 No blood
14.9.09 No blood
15.9.09 Blood
16.9.09 Blood
17.9.09 Blood
18.9.09 Blood
19.9.09 No blood
20.9.09 No blood
21.9.09 No blood
22.9.09 Blood McKenna/Geoffrey/Rewind
23.9.09 Blood McKenna
24.9.09 Blood McKenna
25.9.09 No blood Geoffrey/McKenna/Rewind
26.9.09 No blood Guy
27.9.09 Blood McKenna/Rewind/Geoffrey
28.9.09 No blood McKenna/Rewind/Guy
29.9.09 Blood McKenna/Rewind/Geoffrey
30.9.09 Blood McKenna/McKenna/Rewind/Guy
1.10.09 No blood McKenna
2.10.09 No blood McKenna
3.10.09 Blood McKenna/Geoffrey/Rewind
4.10.09 Blood McKenna/Guy
5.10.09 Blood McKenna
6.10.09 No blood McKenna/Rewind
7.10.09 Blood McKenna/Rewind/Geoffrey/Guy

F.R.I.E.N.D.S

2009-10-06T17:12:00.004+01:00

Last week I bumped into an old school friend on the tube. He was down working in London for the day.

We don’t see each other very often, so I decided to get off at Euston with him and go for a quick drink before he caught his train.

As we walk into the station bar he asks me what I’m drinking. When I say I want a coffee he looks a little taken aback. Over the years we’ve walked into hundreds of bars together, and this is the first time he’s ever heard me order a coffee.

My friend picks up his bottle of beer and we take a seat at one of the high tables. And as he takes his first sip, he’s still looking at me a bit funny, clearly wondering why I’m not joining him with a beer.

You see my friend doesn’t know anything about my UC or my colostomy bag. If we see each other once a year we’re lucky. When we have got together we’ve talked about other stuff. Despite waffling on about my illness on this blog, it’s not always something I talk about in day-to-day life.

But as there’s just the two of us, I figure now is a good time to tell my friend why I’m not drinking. And even though our paths rarely cross these days, we’re still very good mates. We go way back.

When we were at school we both had part-time jobs at Iceland. I collected trolleys and a perk of the job was getting to pocket the fifty pence pieces lazy shoppers left in the trolley coin lock. If I’d had a good day we could afford a scallop each from the chippy on the way home.

We both moved to London at around the same time. We lived in bedsits in the same street, both unemployed. That year we scraped enough money together for a summer ‘holiday’ which was actually just a night sharing a room in a faded, backstreet B&B in Brighton.

When we got jobs we splashed out a bit and spent Christmas and New Year in New York together.

For a couple of years in our 20’s we ran a ramshackle football team of misfits, made up of people who had barely kicked a ball before. One of our best players was a girl. It was the best laugh ever.

We’re proper old muckers. He’d probably be slightly miffed if I didn’t tell him about my UC. He should know, really.

So my friend listens intently as I take a deep breath and explain about how I got ill and ended up with a colostomy bag. He looks very thoughtful, and even pulls out a pen and asks me to spell ulcerative colitis. Blimey, I think to myself, he’s taking this very seriously.

And then he says, “So the colostomy bag is on the inside?”

“No, it’s on the outside,” I reply, giving him a quick flash of it under the table.

“And you can’t drink?”

“I can drink, but I don’t.”

“Hmm-hmm,” he murmurs, nodding his head, quietly assessing everything I tell him.

“I try to avoid fizzy stuff,” I continue, “Things with bubbles in tend to make my bag blow up.”

My friend mulls this over for a second.

Then he asks, completely straight-faced, “Can you eat Aeros?”

That is the single best question I’ve had from anyone since becoming an ostomate. And that is also why we’re still best mates.

Exquisite bodies

2009-10-05T22:01:00.004+01:00

Recently I discovered the Wellcome Collection on London’s Euston Road. Sir Henry Wellcome built this impressive building in 1932 to house his vast collection of medical related oddments, containing everything from early surgical apparatus to shrunken heads. Henry Wellcome clearly had an eye for the bizarre. I found the male chastity rings particularly eye-watering. As well as its permanent and temporary exhibitions, which are all free, the Wellcome Collection also has a great café and bookshop. It was today, whilst in the café that I noticed the sign for a new exhibition called ‘Exquisite Bodies’. I was just reading the subhead below, and had got as far as ‘Or the curious and grotesque story of…’ when right on cue, well known horse impersonator, Janet Street-Porter cantered into my line of vision blocking my view and giving the sentence a rather apt visual ending. Actually, Janet is quite an impressive woman in the flesh. She must be at least 12 hands high. Seeing the exhibition sign and marveling at the stature of Janet Street-Porter started me thinking about my own exquisite body. And more specifically how the addition of a colostomy bag to my abdomen has made me feel about it. Perhaps surprisingly I’m more or less as happy with my body now as I was before becoming an ostomate. You would think that having a mitten of shit swinging from my belly would have a devastating effect on my self-image, but it hasn’t really. Maybe this is because I’m a hairy-arsed man. I think there’s certainly less pressure on us blokes to look a certain way. I’ve often thought it must be harder for girls who have ostomy bags. Particularly young girls. So as I sat in the Wellcome Collection café, staring at Janet Street-Porter and thinking about all this body image stuff, I was suddenly inspired to share with you a blog I discovered yesterday, which is written by a young lady in Canada, who had an ostomy when she was just 13. Her honesty and bravery will undoubtedly help thousands and thousands of ostomates feel more comfortable with their bodies. This is Jessica.

What I get up to in the shower rooms at work

2009-10-04T20:00:00.011+01:00

Take shampoo and conditioner into the shower? Not me, I just take my laptop and headphones and go. In the basement at work there are two small shower rooms and recently I’ve been using them to do my relaxation therapies. The slatted wooden bench that runs along one wall is a little uncomfortable and the smell of Imperial Leather slightly overpowering, but once I’ve locked the door, turned off the light and put my headphones on, I’m perfectly cocooned from the outside world. It’s important to be in a place where I know I won’t be disturbed. The background noise of a colleague repeatedly ramming the paper tray into the photocopier’s innards, whilst swearing like a Tourettic sailor, is not going to help me achieve a state of deep relaxation. It’s hard to imagine myself floating and swaying at the best of times, without being interrupted by phones going off and members of the management team screaming for more soy chai latte. The shower room gives me all the peace and quiet I need. Of course I could just wait until I get home, but it’s becoming clear that to do the therapies properly takes time. You have to commit yourself to it. And with everything else going on in your life, it’s not always easy to find an hour or so to spend flat on your back in a dreamlike state. So now every day at work, usually around lunchtime, I try to sneak off to the shower rooms for half an hour. It’s something I look forward to. A little moment of calm in the middle of the day. Like a coffee break, but instead of loading up on caffeine, I pour relaxing, positive thoughts into my ears. One thing does slightly concern me though. The other day as I was coming out of the shower room with a beatific, post-hypnotic smile on my face, I bumped into one of the girls from the office. She didn’t give me a chance to explain what I was doing in a locked, darkened room with a laptop, because as soon as she spotted it tucked under my arm, she gave me a very queer look and hurried for the stairs. In future, to avoid people jumping to the wrong conclusion, I wonder if I should roll my laptop up inside a towel?

The shower room at work - an ideal place to cleanse the mind.

Wednesday's diary on a Thursday 7.7

2009-10-01T20:28:00.006+01:00

These WDOAT's sure are coming round fast. Did you know there are only 13 left until Christmas? You’ll see below I really upped the ante with therapies this week, so I’m feeling pretty damn confident. I'm so pumped up I may just invade a small country or at the very least enter The Krypton Factor.

Wednesday 30th September:
7am Change bag
7.45am Empty bag
9.20am Empty bag
11am Change bag
1.45pm Empty bag
6.30pm Empty bag
10.30pm Empty bag

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

Therapies:
Paul McKenna Control Stress relaxation therapy x 2, Rewind, Guy Cohen relaxation therapy

Noticeable improvements:
Small amount of blood again. Still feeling good though.

Mood:
All-conquering. Watch out Andorra.

Why me?

2009-09-24T22:54:00.015+01:00

A little while ago Rich left a comment saying how he often found himself asking, “Why me?” It gave me an idea for a post, because in all the years I’ve had ulcerative colitis I’ve never thought like that. And I think one of the reasons why I’ve never cried up at the heavens in despair, “Why me?” is because I’ve always kind of thought of myself as one of those sort of people that weird or strange or unfortunate things happen to. Of course I was never expecting to get ill, but let’s just say it didn’t come as a complete surprise. And the fact UC is a ridiculous bottom related disease, involving much embarrassment, well that’s just par for the course. Anyway, shortly after reading Rich’s comment I started jotting down a few thoughts on the subject of ‘Why me?’ I never finished writing the post, but on the right hand page below you can read as far as I got. (Click on the pictures to enlarge if you need to.)

Now this week I bought Paul McKenna’s book Control Stress. Which is very interesting and includes some great practical tips on how to reduce stress. One chapter in particular caught my interest. It’s called ‘What’s your story?’ and talks about the stories we tell ourselves about ourselves. I think he means that self-narration or self-mythologising thing we all probably do a bit. This part really struck a nerve with me:

Remember, not all stories are negative. If you’ve spent your life telling yourself that you’re a gifted learner, a loyal friend and a ‘get it done’ kind of person, chances are that story has served you well.

But in our culture, the more common stories are imposed upon us from the outside. If you’ve ever been told you’re ‘just not good at maths’, or that you’re ‘shy’, or ‘you’ll never amount to anything’, chances are you’ve struggled in those areas. At some point, you probably took on the story as your own and began repeating it in your head and out loud to others, using the label as part of your identity and building further stories around it.

Now go back and reread those two pages from my notebook. Embarrassingly I’ve got myself down as some sort of freaky big eared, light bulb attracting hospitalaholic. Somehow in my head I’ve turned myself into a real life Gaylord Focker from Meet the Parents for whom life is just one long series of humiliating hurdles. And it’s true, if something not so great happens to me, I just shrug and think ‘typical, of all people it would have to happen to me.’ So all this has made me think I should probably start writing a different story for myself. In this one I won’t be so accident-prone and have strange illnesses. I’ll be lucky and healthy and confident instead. And light bulbs definitely won’t fall on me.

Wednesday's diary on a Thursday 7.6

2009-09-24T21:13:00.007+01:00

On time and with two and half hours to spare, it's...WDOAT!

Wednesday 23rd September:
4.40am Change bag
7am Change bag
9am Empty bag
2.30pm Change bag
10.45pm Empty bag

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

Therapies:
Paul McKenna Control Stress relaxation therapy*

Noticeable improvements:
A very small amount of blood again. But on the whole I feel great, ticking along quite happily. Don't seem as tired perhaps as I used to.

Mood:
Positive, more relaxed, more confident.

*Paul McKenna has a book and CD called Control Stress, which seems to dovetail quite nicely with Guy Cohen's stuff.

Dead Babies

2009-09-21T20:30:00.004+01:00

The bluish haze of cigarette smoke and insufficient light given off by the candles tucked away in the wine bar’s numerous nooks and crannies are forming an evil coalition to make it near impossible for me to decipher what it is exactly I’m eating. Apparently it’s called tapas, but in the 21 years leading up to this point in my life, nothing has prepared me for such a culinary concept. To my unsophisticated eyes it looks like we’re dining on leftovers. Before now exotic to me would have meant ordering the Hawaiian at Pizza Hut. I wash down something gristly with a big gulp of nasty red wine. I know I shouldn’t drink so fast, but I’m nervous. My stomach has tied itself into a knot so tight it would give Houdini trouble. It’s January 1994 and I find myself hopelessly out of my depth at a table with two advertising industry legends and a small group of junior wannabes like myself. The two admen steer the conversation from obscure European photographers to classical Greek literature to Renaissance art before somehow tying them all up in a fancy bow of unfathomable words. They may as well be speaking a foreign language – and often they do – thinking nothing of dropping French colloquialisms into an already incomprehensible sentence. Apart from to chuck wine down my neck, I’ve sensibly been keeping my mouth firmly shut. Then during a rare lull, one of the legends peers over his Andy Warhol glasses at me and asks, “So what do you read?” I get the feeling that ‘books’ isn’t quite the answer he’s looking for. Suddenly it feels like I’ve been plonked into one of those smoky late night arts debates you see on BBC2. All eyes are on me. My sphincter has tightened to the point it’s in danger of creating a black hole and sucking me into oblivion, which at this precise moment perhaps wouldn’t be such a bad thing. “I quite like James Herbert,” I say, before adding (and to this day I don’t know why) “And some of the stories you get in Readers Digest are alright.” “Hmmm,” sniffs the Warhol lookalike, sucking ponderously on a cigarette, “Hmmm.” He gives me a rather theatrically quizzical look and turns his attention on someone else. The spotlight moves further up the table leaving me in the dark fringes. I can feel my cheeks twitching and the blood rushing noisily through the veins in my temples. Everything becomes a bit fuzzy for a while, until I notice that like me, Mr Warhol–lite is no longer involved in the conversation, and without really thinking I ask him, “Is there a book you could recommend I read?” Leaning back in his chair he fixes me with a very long hard look, “Have you ever read any Martin Amis?” “No,” I reply. And then he turns his whole body towards me, and smiles, “Why don’t you try Dead Babies by Martin Amis, that’s a good place to start.”

That weekend I read Dead Babies. And then after Dead Babies I read Money and then Success, and from Martin Amis I moved onto Will Self and this led me to American authors like Philip Roth, Saul Bellow, John Updike and John Steinbeck, Henry Miller and Richard Yates, and Californian writers, Charles Bukowski and John Fante. Whenever a writer referenced another I would seek them out. The Americans pointed me back in the direction of Europe and Camus and Hamsun. George Orwell, Patrick Hamilton, Christopher Isherwood and Alan Silitoe brought me full circle to Britain. For the last 15 years I’ve been on a joyous never-ending journey through literature. An amazing journey that all started because I was curious and asked a question. I hope I never stop being curious and asking questions.

The delayed Wednesday’s diary on a Thursday 7.5

2009-09-18T20:13:00.005+01:00

Apologies for the late running of this week’s WDOAT, this is due to my work suddenly going bat shit crazy.

Wednesday 16th September:
6.50am Change bag
8.15am Empty bag
9.30am Empty bag
2pm Empty bag
8pm Empty bag

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

Therapies:
Geoffrey Glasborow relaxation therapy

Noticeable improvements:
There was a small amount of blood, but these days I'm judging things very strictly - there's either blood or there isn't.

Mood:
Beginning to creak a bit under the pressure of work, but definitely handling it better/more positively than I used to.

This is one of those posts I sometimes write where I leave big spaces between the lines in a feeble attempt to add meaningfulness and gravitas

2009-09-16T20:28:00.005+01:00

The ‘Guy Cohen answers me pretending to be Paxman’ post seems to have stirred up a hornet’s nest, albeit a Lillipution one.

As the mysterious and Bond-esque sounding ‘G’ quite rightly points out, never in the long and illustrious history of Number Twos has a post provoked so many comments.

Finally after 294 posts I’ve discovered the secret to successful blogging.

Just get someone other than me to do most of the writing.

If only I had known earlier.

But back to Guygate.

Ever since the incident where I threw a Jammy Dodger at legendary Beatles producer Sir George Martin, I’ve made it my strict policy to steer clear of controversy.

(And too much champagne.)

So I don’t wish to fan the iddy-biddy flames of debate any further.

My aim here is not to antagonise or insult.

As Ray Davies sang, I’m a lover, not a fighter.

(Unless I’ve had too much champagne and I find myself within range of the ‘Fifth Beatle’ with a shortbread-and-jam based biscuit in my hand, in which case I’m terrifying.)

But I would just like to clarify – and I think we’re all grown up enough to appreciate this – Number Twos has always been about my experiences with ulcerative colitis.

Good and bad, funny and sad, everything on here is written from one point of view alone, and that is mine.

It’s not my place to recommend this drug or that therapy, I just write about my life with UC.

I understand that’s a very simplistic viewpoint, and I am aware there is a certain responsibility that comes with writing about a subject like this on the internet.

And from the beginning I’ve always taken care to be totally honest and not to mislead.

The Guy Cohen thing is no different to the time I wrote about trying Chinese tea.

(Incidentally the Chinese herbal doctors claimed they could cure my UC and unlike Guy, they did charge me a hefty sum for it – how come they don’t get any stick?)

I am trying Guy’s therapies and I will be writing about it.

And as far as my progress goes, rest assured you can expect the same in-depth, behind-the-scenes, impartial investigative reporting that brought you such journalistic gems as On your marks, get set, poo!

It’s the very least I can do.

Now, before I get any more sanctimonious, for those of you who prefer Number Twos a little lighter in tone, below is a book on toilet paper origami.

It’s ten quid on Amazon!

Linda Wright, the author, should be hanged for peddling this kind rubbish to vulnerable people who spend way too much time on the loo.

It’s disgusting.

Guy Cohen answers me pretending to be Paxman

2009-09-10T18:09:00.005+01:00

Obviously I’m a massive Guy Cohen fan now, but is it fair to say my initial “aggressively cynical” attitude is one often shared by the medical profession and even some Crohn’s & Colitis support groups?

Yes, the aggressively cynical attitude is commonplace, particularly with the old school medical profession. I didn’t bother with the support groups because I didn’t want to hang around with a bunch of ill people who felt a camaraderie in their illness. I wanted to be well. Years after I was well, remember from the book, I called the Crohn’s and Colitis Foundation of America (CCFA) only to discover they’re only interested in treatment that involves drugs. Furthermore, my cousin in New York asked if I’d like to come to charity dinner and maybe say a few words. When I said I’d talk about how I’d got well, he basically said don’t come, they’re not going to want to hear that as it was a medical sponsored dinner event!

As you know I’ve been having some teething problems with the Rewind Technique (more of which I’ll write about later) – do you believe that literally anyone can succeed in curing their UC with your methods?

Yes, I do believe that everyone I’ve met so far could be cured if they follow what I and others have done. IE provided they really want it and are prepared to do what it takes. Fortunately with the Rewind Technique it’s not nearly as much effort as what I had to devote to it. But the sad thing is that there really aren’t that many sufferers out there who REALLY want to get well. They don’t want to put in the effort, or they make excuses like “I don’t want someone messing with my mind”, etc.

Ok, there’s the odd person who may have an allergy or intolerance but that’s a tiny minority. Like I say, I’ve never met anyone who has colitis/crohn’s/ibs who hasn’t had those negative thought patterns looping around continuously. From there it’s a question of honesty and then desire to get the job done and keep it going.

Before you contacted me I'd always been led to believe I’d have UC for life and I’d just have to learn to live with it. You’re the ONLY person who has ever told me I can beat it. That in itself is incredibly powerful. Do you think doctors are doing us a major disservice by not suggesting we might explore alternative therapies such as yours?

Yes, the medical community is doing a massive disservice by (a) not investigating and interviewing people like me – I'm totally willing to co-operate and help duplicate what I did in any way they suggest; (b) not suggesting people to at least explore relaxation techniques and hypno. I'm not the only one out there who’s conquered the problem and my goal is to make it commonplace.

But the truth is the medical profession, particularly in the US, is in the grip of the drugs companies. Let’s face it, if a charitable foundation like the CCFA are pretty much controlled by big pharma, what choice are people really being given?

But here’s the good news. Thanks to technology and the internet people like me can start to make a difference and give folks out there something to think about and try with zero risk. They can continue with their treatment and still try my methods. What I really need to do is find someone famous who has colitis (like Anastacia for example) and treat her successfully. That would be huge ...

Wednesday's diary on a Thursday 7.4

2009-09-10T17:44:00.007+01:00

A very promising week and a little blip. Monday, Tuesday and Wednesday there was no blood in my daily bowel movements, which can only be a good thing. And then today there was blood. It’s annoying and a bit disappointing, but I’m going to take encouragement from the three days without blood and keep on with the therapies. Talking of which, yesterday I stayed over at my girlfriend’s and stupidly forgot to take a copy of Guy’s recordings with me, so I missed a day. Could that be why the blood returned today? Hmmm.

Wednesday 9th September:
6.50am Change bag
2pm Empty bag
5.30pm Empty bag

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

Therapies:
Missed a day. (Naughty.)

Noticeable improvements:
Three days in a row without blood in my daily bowel movements. Emptied/changed my bag a lot less???

Mood:
Pretty good. Generally more upbeat.

Guy Cohen answers Rich Mercy Seat

2009-09-09T18:56:00.005+01:00

Rich of The Mercy Seat fame had a whole load of questions for Guy, which he is happy to share with us. I think you’ll find Guy’s answers interesting, entertaining, enlightening and, well, really quite blunt. But that’s the key with Guy’s therapies – you have to be totally honest with yourself. Not always that easy. Maybe you’ll recognise a bit of yourself in Rich? If so, don’t worry, you can’t possibly be more cynical than I was. According to Guy I was ‘aggressively cynical.’ Harrumph. Anyway, many thanks to Rich for his questions and also thanks to Guy for the character assassination, sorry, advice. I meant ADVICE.

If I consider myself to be relatively positive in a general sense, will the hypnotherapy still be beneficial to my UC?

Hi Rich...being serious(!) how can you say you’re “relatively positive in a general sense” at the same time as saying in the same email: “Will my naturally cynical nature limit the effects of the therapy?” and “I am a jaded, world-weary, world-wary old bugger”?

I'm going to go out on a limb here and tease you with the idea that you’re not as “relatively positive” as you suggest! Furthermore, I'm going to ask if you camouflage your natural cynicism with some sort of self-deprecating humour?

This is a chance to be brutally honest with yourself as my methods do rely on that.

In my first email exchanges with Martin we had similar discussions about his desire to be well versus his almost aggressive scepticism. It’s not uncommon, but consider this – and I said the same thing to Martin: something you truly desire (I hope) could have fallen right into your lap. Regardless of the salesy nature of some of my material, I'm a real guy who has (a) cured myself of UC and (b) helped others do the same. For the sake of a book and website you can read it and figure out how real it is and how real I am.

When I was ill I grasped at EVERYTHING until I would find a solution – that was my attitude. I wasn’t cynical or bitter about any of the ones that didn’t work – and of course none of them worked at all, until I stumbled upon Geoffrey. My attitude was that every failure was a step nearer success. Now, compare that to your “naturally cynical nature”! You say you wouldn’t have even looked at my website – in your position I would have been all over it in a flash.

How about replacing your “naturally cynical nature” with a “naturally curious and open-minded nature”, combined with a single-minded determination to get completely well again? For the purpose of achieving your goal here, you’ll find it’s much more constructive!

In every spiritual book (even the non-hypey ones) taking responsibility for your thoughts and actions is at the heart of the message. I'm not religious in any way, however, deep down I believe we all know the truth of this, and the moment you take responsibility for what’s going on in your life is the moment you can start to have more input over what happens in it. Two great books are “The Power of Now” and “The Power of a Single Thought”.

Is the therapy successful in breaking the tie between symptoms, mental response and behaviour; i.e. I feel a cramp, I think about it all day, anxiety sets in, symptoms apparently worsen... Could this be the root of negativity that will cause UC?

This is part of your issue. You have got into the habit of negative looping thinking. Now, of course it’s easy and understandable to get anxious about a nasty pain or cramp. However, as you start to understand how your mind works and how my method helps, you’ll find yourself in a virtuous cycle. As your thinking is clearer and healthier (having stopped or radically reduced the negative looping thoughts) your body will begin to feel more comfortable. In turn that gives you the encouragement to keep thinking in a healthier way. Try to become the observer of your thoughts a bit more ... it’s very instructive.

Or... is it all about other issues? Does you feel that my UC is as a result of historical negativity - I'm struggling to come to terms with the idea that there is much negativity in my life outside of the UC.

As above, it’s all part of the same thing really. Somehow, you’ve learnt to think in this self-destructive way. That doesn’t make you a bad person – it’s actually a form of survival mechanism for whatever reason. Often these habits are learned at a young age and in response to close relationships with family/partner, etc. That’s not to shift the blame anywhere else, not even yourself. But for some reason you got into a bad thinking habit. Listen to your thoughts and be honest about what kind of thinker you are. If nothing else, read your email to Martin! I realise you think you’ve seen all the cures that are possible but the fact is that you haven’t! And instead of being excited, your tone in the email is full of cynicism! Now, it’s time to get excited and curious.

What kind of time frame does the therapy work in? Is it really possible to see improvements rapidly? What is the rate of the disease returning after therapy?

If you use the Rewind Technique properly in conjunction with my relaxation recordings this can work very quickly indeed. I also want you to buy those two books I mentioned at the end of Question 1. You need to read my book too ... preferably more than once – particularly the Roadmap part. Tricia Best had Crohn’s for 20 years and was housebound for around 70% of the time. With her she was virtually better within a week or so. She was completely committed to the method and her breakthrough was doing the Rewind Technique with me. Read her review of my book for her account of what happened.

With Martin I think we’re making decent progress though not as spectacularly as Tricia, but that’s for a couple of reasons. Not only had Martin had the bag, but also he was highly sceptical – aggressive almost – with a stranger like me approaching him! Understandable perhaps, whereas Tricia’s husband knew me and what kind of guy I am, so she bought into the idea immediately without question.

In simple terms what is the minimum therapy you would recommend? Read the book? Do the free download? (Are you making money out of this? - I can't quite work it out on your website, but when you have seen so many of these miracle cure sites it is difficult not to be cynical...)

Well, this is going to be a wholesale change in your view of the world, so in some ways it’s ongoing. But to get results you need to get the package. Read the book, even listen to the audio if you like too, so you can hear it with my voice. Listen to one of the relaxations at least once per day for the first month. When you’ve read the book and understand the method, do the Rewind Technique. Really get into it and go for it ... you should be pretty zoned out by the end as it’s an intense exercise.

If you’re still hyper-cynical just get the book. Then you’ll know for sure that I'm real. Regarding the Rewind Technique, Martin had a couple of issues at what to point it at. Follow the instructions in my book. You point it at the representation of yourself having the negative destructive thoughts. In your case it you could point it at your cynicism for one! But you can do it multiple times at different areas until you start to notice tangible physical results. When you point it in the right place, results happen remarkably fast.

Am I making money out of this? Not yet! I’ve spent $24,000 on this project so far. When it becomes profitable, then Geoffrey will get the lion’s share as he’s in his mid 80s and my gratitude to him is immense even after all these years and the fact that I’ve significantly improved on what I did with him to get better myself.

Do you ever think that, perhaps, you’re just in a lengthy period of remission? Would you totally refute this as a possibility?

I never think in terms of remission – it’s a dirty word to me. You’re either well or you’re not. When you’re well, it’s just a question of staying well. If you were to lurch back into bad thinking habits, that would be unhelpful of course. But if you adopt what I'm saying and it works for you, then you create a new habit. If you were to have any kind of setback having got well, you would know exactly what to do to get back on track.

What I do is a formula, and it works. Use the formula to get well. Then retain the good habits that the formula creates for you.

Again, your question is incredibly negative, however, let me elaborate. First, I’ve been well for over 13 years, which was also the last time I saw a doctor about it. Once in a very occasional while (perhaps 3 times in 13 years), I’ve had “warning signs” where all was not completely well down there (though by no means full blown or too terrible). Each time that happened, at the heart of it for some reason I’d re-started the negative looping thoughts for one reason or another that was pretty easy to identify. In one occasion, something was happening in my life that was akin to a bullying kind of episode I’d grown up with. We literally identified it, rewound it and trivialized it in a relaxed state and literally within 24 hours I was 100% fine again.

It was because of these episodes that I began to realize how fast one can make massive changes physically. In a way they were a kind of gift and without them I probably wouldn’t have connected the Rewind Technique to a solution to all this. The Rewind Technique was created for phobias. However, what I discovered is that a phobia has the identical thought structure to what people with Crohn’s, colitis and IBS are doing. Bad thinking habit = physical reaction. Eliminate the bad thinking habit = no more physical reaction. That’s the formula.

The trick is how to eliminate the bad thinking habit. Well, you can do it with cognitive methods and hypnosis, which is how I got well, but that can take time and requires immense discipline and commitment. Or you can do that AND the Rewind Technique and suddenly the results are massively accelerated provided you point the Rewind at the appropriate area.

Will my naturally cynical nature limit the effects of the therapy?

If you insist! It’s really up to you ... an attitude change is preferable. Here’s my question to you ... Do you really want to get better? If you do, you’ll get on with it now and stop the cynicism. If you’re not serious about this you’ll (continue to) make excuses!

Thanks to Martin, something amazing has fallen into your lap here. Grasp the opportunity and only think about the result you want.

A big hand for my surgeon

2009-09-08T19:05:00.005+01:00

My surgeon is making notes in my hospital records folder. I make a half-hearted attempt at reading them, but from this angle they're upside-down and without the benefit of a team of code-cracking Bletchley boffins at my disposal, my chances of understanding his scrawl are hopeless. My attention drifts to my surgeon’s hands. They’re quite small, neat and pinkishly clean. They look exactly as you'd expect surgeons' hands to look. If there was a Stars In Their Eyes for hands, and these were to come on and announce, “Tonight Matthew, we’re going to be surgeons’ hands,” then once the famous doors had slid open and the dry ice had cleared, viewers at home would be nudging each other and saying, “Ooh, they really look like surgeons’ hands as well.” Watching my surgeon guide the nib of his Mont Blanc across the page it occurs to me that these fingers have actually been inside my body. And as small, neat and pinkishly clean as they are, it’s still unnerving to think they’ve been under my flesh. I barely know the man, yet it feels like we’ve shared some kind of intimacy. I’m just considering whether it’s enough of a bond to warrant sending each other Christmas cards or not, when his voice jerks me from my dopey daydream, “When would you like to have the reversal? We could possibly do it within the next two months.” His dextrous little fingers screw the lid back on his pen and he smiles in that way that indicates he’s finished talking and now it’s my turn. “Oh, that’s good, but I was sort of thinking if maybe we could do it early next year? I’ve had a lot of time off work this year already and I’d just rather enjoy Christmas.” There’s something about being an NHS patient that always makes me think I should be grateful that there’s even a chair to sit on in the waiting room and I wonder if I’m pushing my luck by asking to have the operation in the new year. “That’s fine, come back in three months and I’ll put you on the waiting list then.” Since starting my treatment with Guy I’ve thought a lot about how fortunate I am that during my operation the surgeon made an on-the-spot decision to only take a small section of my colon out, rather than the whole shebang as he had intended. A younger, more inexperienced surgeon may not have had the confidence to go off script. His actions mean I don’t have a permanent ileostomy, and now with Guy’s help it gives me a fighting chance of clearing up the disease in the remaining colon. As I stand to leave something compels me to express this to my surgeon, “I just want you to know I’m really grateful to you for only taking out a bit of my colon, I think it’s turned out better this way.” It was worth telling him for his smile alone. Offering me one of those quite small, neat, pinkishly clean hands he says, “You know at the time I took a lot of stick for doing what I did. A lot of people weren’t happy with me about it. But I think it was the right thing for you.” I note his cool, relaxed, just-the-right-side-of-arrogant manner, and I know for sure that I’m in safe hands.

Ask away

2009-09-08T12:48:00.002+01:00

Guy Cohen said he would be more than happy to answer any questions you have about the methods he uses for curing ulcerative colitis. So if you want to leave a question in the comments section or email me, then I’ll pass them on to Guy and post up his answers shortly.

Wednesday's diary on a Thursday 7.3

2009-09-03T19:29:00.002+01:00

You may notice one or two changes to this week’s WDOAT. From now on there’ll be a slight shift in focus. Rather than just recording the same old stuff week in week out, I hope to now use WDOAT to chart any significant progress I’m making with my new goal, which quite simply is to be fully healthy again – UC free in other words. Since having surgery I no longer have any of the obvious symptoms of ulcerative colitis. But it’s still there. The colonoscopy I had back in June revealed I have mild disease in my remaining section of colon and in the bit near my rectum. Now there’s no way I can tell what’s going on inside my colon week by week. A tribe of nomadic shit mining pixies could have set up camp in there and I wouldn’t know a thing about it. But there is one way I think I’ll be able to see if things are improving. Most days I still have one normalish bowel movement. This produces a putty-mucus-milky-Weetabix type substance. Over the months since the op, blood has crept into these bowel movements. At first it was just a pale pink blush on the toilet paper, but more recently it’s been a definite crimson. This I believe is caused by the UC still in my rectum area. If the blood from my back passage reduces, then I think it’s fair to assume I’m heading in the right direction. So I’ll be keeping an eye on that. Also I’m going to try and comment on my general mental wellbeing, my mood, vibe, spirit, whatever you want to call it. This then, is the new and improved WDOAT.

Wednesday 2nd September:
7am Change bag
8.15am Empty bag
1040am Empty bag
2pm Change bag
6.15pm Empty bag
9.30pm Empty bag

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

Therapies:
Geoffrey Glasborow* relaxation download

Noticeable improvements:
Consistently healthier thinking. Less dwelling on negatives. More energy.

Mood:
Positive. Bit excited really.

*Guy Cohen's original recording of a session with Geoffrey Glasborow in 1995.

Hypnotherapy session number 1

2009-09-02T17:44:00.008+01:00

Guy Cohen’s voice is clear, self-assured and not unpleasant on the ears. Behind the mellifluous tone is a hint of playfulness, which brings to mind a bright-eyed head boy. Guy fizzes with optimism and can occasionally come across as cheesy – but it’s only optimism in the same sense most Hollywood films are optimistic; E.T. goes home, Rocky wins, Jaws dies and Bill Murray learns not to be such a dickhead. There’s nothing wrong with that and it’s actually quite refreshing. Guy is talking to me through my Mac using Skype, so I can be hands free and not have a hot headachy mobile pressed to my ear for the whole session. I am lying on my sofa in my spare room cum office. The blinds are drawn, shutting out the early evening light and the geese, which fly low past my window about this time every night on their way to Walthamstow marshes. After a few minutes small talk, it’s time to get down to business. Much like an airline pilot’s pre-takeoff preamble – we’ll be flying at 30,000ft, approximate journey time should be a little under 3hrs etc – Guy starts by outlining exactly what we’ll be doing during the session. Then we’re clear for take-off. Guy tells me to relax and concentrate on breathing more deeply. I begin to inhale and exhale more slowly, trying to find a steady controlled rhythm. Then Guy’s voice takes my mind on a journey around my body, and I’m asked to imagine my various limbs going limp and relaxing; my right foot going limp and relaxing, my left foot going limp and relaxing, my right leg going limp and relaxing, my left leg going limp and relaxing. When it comes to my hands going limp I have to suppress all thoughts of John Inman, and stay focused. Then Guy tells me to imagine I’m floating on thin air, floating and drifting, drifting and floating. At no point do I feel ‘under’ or at all like I’m in a trance. I think the purpose of these first exercises is to put me in the right frame of mind and set the mood. It’s mental foreplay. After which Guy begins to count upwards. All the while I’m encouraged to relax and smile and enjoy myself, whilst continuing to breathe nice and deeply. Now Guy asks me to remember a time in my life when I felt supremely confident. I have to picture it in my mind, make it really vivid, relive how it made me feel, what was in front of me, behind me, recreate the scene in detail, the colours, the smells, the sounds, making it feel as intense and bright as I can. Then just when I think I can’t push it any further Guy tells me to pinch my thumbnail against my middle finger, take a deep breath and relax. I’m a little concerned that I’m not doing this part right, but Guy reassures me that if I’m trying then I’m doing it right. Next I have to remember a time when I felt really curious, totally fascinated and absorbed in something. And again I have to picture it in my head in as much detail as possible, making it 3D and giving it surround sound. Then as before, when it gets to its most intense I pinch my thumbnail against my middle finger, and relax. Now Guy tells me to think of a time where I had the giggles. Proper uncontrollable giggles. I have to make it real in my head, adding layer upon layer of detail, until it can’t get any more vibrant, then I pinch my thumbnail against my middle finger, before relaxing. Now it gets a little harder. Guy tells me to remember all three scenarios all at the same time. Mix them all up, confidence, curiosity and the giggles. Guy gets very excited at this point and I’m guessing by his yelling and hollering that what we’re doing is kind of like crossing the streams in Ghostbusters and we’re going to unleash some God Almighty power. I half expect cupboard drawers to start opening and closing and gas bills and takeaway menus to begin swirling around the room in a vortex. I can report that none of this happens, although I do find myself smiling, which Guy tells me is a good thing. I pinch my thumbnail against my middle finger and we both take a deep breath and relax. Now we move on to the final part of the session and something called the Rewind Technique. Here Guy asks me to imagine I’m sitting in a big cinema. It’s just me, on my own, looking up at an old crackly, black and white film. And the film I’m watching is of a time when I felt anxious or was feeling particularly negative. I have to play the film from start to finish, 20 seconds or so. Then I have to imagine I float up out of myself right up to the ceiling where I can look down on myself looking up at the film of myself on the screen. In effect there are now three of me, four if you include the real me. Fortunately I’ve always had something of a split personality, so I feel quite comfortable in a roomful of Martins. Guy tells me to continue floating back into the projection room, where I can look down on the back of myself watching the film. Now I have to play the film in reverse. All the action moves backwards. Then when I reach the start, I have to rewind it again. And again, and again, and again, getting faster and faster each time. Guy suddenly starts playing the Benny Hill theme tune and everything in my head is careering backwards. Guy is yelling faster! Faster! Faster! He can’t get his words out quick enough. Benny Hill becomes fairground music. Clown music. Faster! Faster! Guy’s tripping over his words now. He wants me to laugh. I don’t know what’s going on. I struggle to keep up with it all. It feels like my eyes are spinning around in their sockets like a couple of Lotto balls about to be released. Then it’s all over. Quiet. Calm. Still. Relaxed, soothing Guy returns, taking over from manic, speed-freak Guy and he tells me that what we have just done is incredibly powerful and I should start to feel different very soon. There’s not a trace of doubt in Guy’s voice. It’s too early to say how I feel, but I know one thing. I believe him.

Hypnotherapy

2009-08-31T15:32:00.004+01:00

The moment I take my seat on the stage I regret volunteering. I’m sitting at the end of a row of nine other students, who like me, eagerly flung their arm in the air when the stage hypnotist asked for volunteers. A solid mass of faces leer up at me. I should be with them. I should be in the audience. Not on stage. When I was 12 the stress of playing ‘man in the crowd’ in the school production of Charlie and the Chocolate Factory got too much for me and I pleaded with my teacher to let me be a stagehand instead. It’s fair to say show business is not in my blood. But right now a substantial amount of alcohol is, which is why I find myself on stage about to be hypnotized. I become aware of every muscle in my body, my hands and feet and lips and ears feel hot and twice their normal size. The hypnotic process hasn’t started; the hypnotist isn’t even doing anything yet. I just feel incredibly self-conscious. Rigor mortis has set in. I’m made of plasticine. I’ve morphed into Morph. And I really need to urinate. Now we are being asked to follow a simple set of instructions to see how open we are to suggestion. I put my right hand on my head, then my left, then my right, then my left. I stand up, I sit down, I stand up, I sit down, I stand up, I sit down…and completely miss my chair. A tsunami of laughter crashes over me as I loll impotently on the stage floor. Those in the crowd that know me begin to chant my college nickname. Those in the crowd that don’t know me join in. “Les! Les! Les! Les!” It’s horrible. The hypnotist helps me to my feet and quietly says, “You’ve probably had too much to drink, mate, you can go back to the audience.” As I shuffle shamefaced off stage the hypnotist encourages a round of applause, “Thank you, Les! There he goes, off back to the bar!” And that’s exactly where I head, muttering under my breath, “My name’s not Les, it’s Martin.”

Until Guy mentioned hypnotherapy to me, my only previous experience of hypnotism was that slightly embarrassing encounter with a stage hypnotist back in 1992. And all that taught me was no matter how much beer you’ve drunk never put your hand up for anything ever. An invaluable life lesson learnt, yes, but in no way helpful in my understanding of hypnotism or hypnotherapy. So I had no real preconceptions about the subject, other than the usual spooky ‘repeat after me’ stereotypical hypnotists you see on telly. Again not that helpful. Guy reassured me if we did a session together I would be awake the whole time and be fully aware of everything going on. Satisfied I wouldn’t be put into a zombie-like trance or start talking like a 16th century French peasant we arranged a time for the session, which we would do over the telephone. As the session approached I felt a little apprehensive. Apart from a brief chat with Guy the day before I didn’t know him from Adam. I was about to undergo some sort of hypnosis with a total stranger – a total stranger off the internet, which is the natural habitat of the strangest type of stranger. At this point I gave myself a little talking to and decided to approach it all with an open mind and just go with it. The worst that could happen is I’d get a mildly interesting anecdote to write about on Number Twos. Deep down I was hoping for more though. This wasn’t about having a funny story to tell, the purpose of this was to get better. To finally beat my UC. With that in mind I allowed myself to feel a little excited and waited for my very first hypnotherapy session to begin.

Positive thinking poll - results

2009-08-30T18:27:00.004+01:00

Do you believe having a POSITIVE MENTAL ATTITUDE can help reduce the severity of your UC/Crohn’s or even cure it?

Utter claptrap 13%
It probably helps, but can’t cure it 71%
I’m positive it can cure it 4%
I’m open minded 11%
Surgery is the only cure 0%

Thank you to everyone who voted in the positive thinking poll. It would seem most of us believe that having the right frame of mind is key to dealing with our illnesses. But the idea that we can actually use our minds to cure ourselves was clearly a step too far for most. That’s understandable. That’s how I felt until I received an email from someone who told me how he cured himself of ulcerative colitis. His name is Guy Cohen and he has some very interesting thoughts on UC and how to beat it. Initially I was sceptical and fired off a decidedly cynical reply to his email. Unflustered by my thinly disguised accusation that he may be some sort of internet Dick Turpin preying on the sick, Guy patiently answered my questions and explained a bit more about himself. We pinged a few emails back and forth over the course of the day, and it soon became clear Guy wasn’t recruiting on behalf of a Texan sex cult, and was a genuine, decent sort of chap. Once I’d got over the disappointment of not being groomed by a Texan sex cult, we arranged to talk on the phone later in the week. In the meantime Guy pointed me in the direction of his website, which despite the off putting heavy handed sales schtick, did explain more about Guy’s incredible story. And dispelling once and for all any suspicions I may have had that he was after my money, Guy very kindly gave me all his downloads free of charge. You can read exactly how Guy recovered from UC on his website, but in a nutshell he uses established hypnotherapy techniques to eliminate destructive thinking patterns that he believes can cause ulcerative colitis, Crohn’s and IBS. At this point you may be shouting ‘bollocks’ very loudly at your computer screen. Fair enough. I’m sitting here with a colostomy bag, still very much with UC and I’m supposed to believe that all this could have been avoided if I’d just had happier thoughts? I’m as cynical as the next man, but the more Guy explained how my bad thinking habits affect my stomach, it started to make sense to me. I suddenly became aware of the internal dialogue I have with myself. And it’s not pretty. It’s not quite the ‘You talking to me?’ scene in Taxi Driver, but I now recognise that I spend way too much time and energy having babbling cyclical arguments in my head and playing out ridiculous imaginary scenarios, that are really quite pointless. I’m not a complete fruitcake, but at some point in my life, for whatever reason, I developed thinking habits that aren’t particularly helpful. It makes sense to me that if I can correct the way I think it can only be a good thing. It could make me more positive, happier, healthier. It could cure my UC. I believe it can. After all it worked for Guy. This is the start of a new journey for me and as ever I’ll be recording it here. I understand some people will be dismissive and think I’ve finally lost the plot. That’s okay. I just really want to get better. Over the years nothing has worked for me, from yucky Chinese tea to conventional medicine. Even surgery hasn’t fully rid me of ulcerative colitis. So I’m going to give Guy’s methods a shot. I’ll still be taking all my usual medication and continuing with my hospital treatment, but I’m also going to be putting my faith in something hopefully far more powerful. My mind.

For further information, this is an interview I found with Guy.

Summer holiday

2009-08-15T13:11:00.002+01:00

Number Twos will re-open in two weeks.

Positive thinking poll

2009-08-14T09:14:00.003+01:00

The mind is one of the most powerful tools known to man. Perhaps second only to those gadgets you see on the shopping channel that help get the lids off jam jars. So, do you think that it’s possible that thinking positively can have a positive effect on your illness? Can thinking ourselves well make us well? If we believe we can get better, can we? What are your thoughts? The poll is just there on the right. Now try to be positive…

Wenshday's diary on a Thurshday 7.2

2009-08-13T18:11:00.001+01:00

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

2009-08-10T17:54:00.010+01:00

‘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

2009-08-07T20:22:00.006+01:00

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

2009-08-06T17:57:00.003+01:00

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

2009-08-04T17:59:00.006+01:00

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

2009-08-02T17:14:00.005+01:00

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

2009-08-01T10:29:00.009+01:00

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.

Wednesday's diary on a Thursday 7.0

2009-07-30T16:15:00.004+01:00

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?

2009-07-29T09:22:00.003+01:00

'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

2009-07-27T20:44:00.007+01:00

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

2009-07-23T09:04:00.004+01:00

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

2009-07-22T20:08:00.002+01:00

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

2009-07-21T18:52:00.021+01:00

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

2009-07-20T20:19:00.002+01:00

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

2009-07-19T17:33:00.002+01:00

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

2009-07-16T19:49:00.010+01:00

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

2009-07-16T17:31:00.003+01:00

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

2009-07-15T09:08:00.002+01:00

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

2009-07-09T17:47:00.006+01:00

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

2009-07-08T17:29:00.002+01:00

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

2009-07-06T20:27:00.005+01:00

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

2009-07-05T21:44:00.000+01:00

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

2009-07-05T10:44:00.002+01:00

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

2009-07-02T17:03:00.002+01:00

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.

To the grave

2009-06-29T20:47:00.001+01:00

A little while ago, not long after my operation, my girlfriend and I found ourselves perusing the headstones in a local graveyard. We’re not Goths or Satanists or anything like that, but graveyards are a very much like ice cream vans in that you don’t deliberately go out to find them, but if you do see one they somehow draw you in. As we respectfully moved amongst the graves, reading the ones that took our interest, I happened to casually observe that people in the olden days didn’t generally live that long. I’d noticed there were quite a few headstones for people who died in their 40’s and 50’s. I was just leaning in to read the time-worn lettering on the headstone of one Henrietta Lucking, who died in 1845, when my girlfriend said, “Well if you’d lived in those days you’d probably be dead by now too.” Now there’s a cheery thought. Slowly I twist my head and fix my girlfriend with a long hard look. Eventually she realises I’m staring at her, “I’m just saying,” she pleads, “Without your tablets and operation and stuff your UC would probably have killed you.” She said it again! She said it again! I straighten, smarting from all her incessant talk of me dying young, but before I can respond she’s moved on. Now you wouldn’t know it to look at her as she sashays gracefully through the churchyard trailing her fingers in the long grass, but my girlfriend was born with her hips slightly skewiff and spent the first couple of months of her life in some sort of brace to realign them. Remembering this, I mutter under my breath, “Yeah, and if you’d have been alive back then, my dearest, you’d have been a cripple!” “Hmm?” “Oh, I was just saying there was a fella back there called Dibble.” I lie. Following my girlfriend out of the churchyard I concede that she’s probably right. If I’d lived in the 19th century, in a time before asacol, azathioprine, prednisolone, colonoscopies and colostomies, life would have been very different. And significantly shorter.

My body & soul

2009-06-28T15:26:00.005+01:00

Every Sunday in The Observer magazine there’s a feature called My Body & Soul. Each week a different celebrity answers a set of questions related to physical and mental health, attitudes to sex, and smoking, cosmetic surgery, drugs, that sort of thing. And one of the regular questions that always interests me is Have you ever spent a night in hospital? I’ve pulled together a few of the answers given by various showbiz types.

Alan Carr, comedian, 33 – once kept a friend company over night
Sanjeev Bhaskar, actor, 44 – once had day surgery
Paul McGann, actor, 49 – once with an injured leg
Tamsin Greig, Actor, 41 – only to give birth
Jon Snow, journalist, 61 – had tonsils out aged 7
Alexander Armstrong, comedian, 39 – tonsils out as a kid
Bobby Charlton, football legend, 71 – for a week after the Munich air crash
Boy George, singer-songwriter, 47 – never
George Galloway, MP, 53 – not since childhood
Jasmine Guinness, model, 31 – only to give birth
Ann Widdecombe, Conservative MP, 60 – appendix aged 16

What always surprises me is how little time some of these people have spent in hospital. Some of them are no spring chickens either. Look at Jon Snow for instance; he hasn’t had a night in hospital for 54 years. Ann Widdecombe, too. She hasn’t so much as creased the sheets of a hospital bed in 44 years. But the one that amazes me is Boy George. He’s a former junkie for pity’s sake. The man has injected half of Afghanistan into his rotten veins. How the hell has he managed to stay out of hospital for 47 years? I totted up a rough estimate of how long I’ve spent in hospital over the years and it’s somewhere between 2 to 3 months. More worryingly UC only accounts for 6 weeks of that time. Laughingly I’ve always considered myself quite a healthy chap as well. But my extensive hospital CV clearly begs to differ. I’m now beginning to realise I’m the exception rather than the norm. When I think about it hardly any of my friends have spent a night in hospital. As sad as it may sound hospitals and doctors surgeries have just become part of my life, like going to the cinema or out for dinner. When I hear people say, “Ooh, I can’t stand the smell of hospitals.” I don’t understand what they mean. If hospitals smell funny I’m so used to it I don’t even notice. Desperately trying to find something positive to take out of my disturbing familiarity with all things NHS, I’m reminded of a text message I received from a work friend one Sunday night a few weeks ago: Dad taken into hospital. Could be serious. Not sure of my movements over the next few days. Might not be in. Quite an alarming message. Apparently my friend’s mum was in pieces. The whole family was on red alert. My mate didn’t even know if he’d make it into work in the coming days. Serious stuff. Now I don’t mean to trivialise things, but they let my friend’s dad out a few hours later. He didn’t even stay in overnight. Panic over. If my friend and his family overreacted slightly I think it’s partly because hospitals are unknown to them, it’s an alien environment. The minute they see tubes and needles they call for the priest. I’m not trying to be tough, or say that I’ve been there, done that and worn the hospital gown, but my eclectic hospital experiences over the years have left me a little more prepared than most and flashing blue lights, operating theatres and doctors sticking their fingers up your backside don’t generally faze me. Aren’t I just the lucky one.

Clear for take off

2009-06-27T12:06:00.005+01:00

My flight to Germany last week was my first since the operation, so I was keen to experience travelling with an extra bag, so to speak. As with any trip it all starts with the packing. Now I’m an ostomate I can’t even go to Sainsburys without my colostomy bags and the whole kit and caboodle that goes with it, let alone a foreign country. So a little extra planning was required. Firstly I had to make sure I had more than enough bags to see me through the trip. I took about 50 for 7 days, which looking back may have been a little over-cautious. But better safe than sorry, I say. And because I wouldn’t be able to take my nail scissors with me in hand luggage, I pre-cut plenty of bags in advance. Also just in case my suitcase went missing I took the precaution of taking everything UC/colostomy related in my hand luggage. I can get by without underwear, toothpaste and travel plug, but without my medication and bags, I’d be on the next flight home. For drug mules, shoe bombers and ostomates airport security is perhaps the one part of flying we approach with most trepidation. As a first-timer I didn’t quite know what to expect. Would my hand luggage cause concern going through the x-ray machine? Would I be frisked so hard my bag would burst? Would they lift my top up for the whole airport to see? All I can say is the security staff were very discreet. I was frisked and obviously the security controller discovered my bag, but he took one quick look and then continued the search without even mentioning it. I guess in their job they see all sorts, and compared to say, a prosthetic penis concealing a nail bomb a colostomy bag is pretty run of the mill stuff. During the flight itself I wasn’t sure if cabin pressure would have any effect on my bag. At take off would I have to pop a boiled sweet in it or something? But it seems colostomy bags work just the same at 35,000 feet as they do at 3 feet. All in all travelling with a bag is no different to travelling without one. It perhaps takes a little more preparation, but being an ostomate doesn’t mean you can’t be a traveller, too.

To the happy couple - Imodium and me

2009-06-26T17:27:00.004+01:00

Last Saturday I went to a wedding in Munich. Friends of my girlfriend were getting married. I hadn’t met the bride or groom before, and apart from one couple, who also live in London, I didn’t know any of the other guests either. Obviously I wanted to make a good impression. But I had a slight problem. My poo was more like wee. After fasting and taking the pre-colonoscopy laxatives my stools were really loose. In a matter of seconds my bag was going from empty to swinging heavily from my belly like a goldfish bag from the fairground. When I emptied it the contents oozed greasily down the inside of the toilet bowl like volcanic lava flowing down a mountainside. On contact with the water it spread out, creating a mushroom cloud effect under the surface. It was no thicker than Domestos. Technically you’d have to call it poo. You couldn’t fault its colour or smell; both were textbook, but it was just much, much runnier than what you might call your classic shit. Now I find the trouble with liquid shit is it’s more likely to leak. And a wedding is no place for a leaky bag. Not if you’re trying to make a good impression, as I was intent on doing. I had visions of standing to toast the happy couple and looking down to see a ring of poo seeping through my crisp white shirt. Something needed to be done. I was determined not to remembered by my fellow guests for years to come as ‘that nervous looking Englishman who smelt very much like a blocked drain’. That wasn’t going to be me. I wasn’t going to be the blocked drain guy. Smart, witty, charming, erudite, shiny of shoe and firm of handshake, yes; stinking of shit, hopefully not. So I decided to take action and take some Imodium. I’ve never had Imodium before. And I’m pleased to report it works a treat. My bag was as flat as a pancake all day. This meant I could pop it inside my trousers and wear my shirt tucked in, which these days is something of a luxury for me. (Personally I believe anyone over the age of 9 sporting an untucked shirt at a wedding should be frog-marched off the premises and given a severe ticking off, if not a damn good thrashing.) Such was my joy at having a non-filling, non-gurgling bag, all through the meal and the speeches I had to fight the urge to stand up and announce to the room, “Bet none of you can guess what I’ve got under my shirt?” This of course would have meant revealing my ‘secret’ and therefore defeating the purpose of taking the Imodium. So I bit my lip and kept schtum. I wouldn’t take Imodium regularly, but for those occasions where you would prefer to be free of the hassle of changing or emptying your bag, or you’d just like to wear you shirt tucked in for a while, then it’s definitely worth it. Pop a couple of Imodium tablets and you’ll be blocked up and freed up in no time at all.

Wednesday's diary on a Thursday 6.5 - Colonoscopy Week Live Special!

2009-06-18T19:12:00.003+01:00

Nearly forgot WDOAT. What am I like.

Wednesday 17th June:
8.45am Empty bag
9.25am Empty bag
9.35am Change bag
11.40am Empty bag
1.50pm Empty bag
4.30pm Empty bag
5.10pm Empty bag
7.10pm Empty bag
10.30pm Empty bag

Medication:
Breakfast 6 x mesalazine 400mg
Dinner 4 x azathioprine 50mg (didn't take them)
Bedtime 6 x mesalazine 400mg (didn't take them)

Comments:
Think it's safe to say Picolax works.

Colonoscopy Week Live! - The Colonoscopy

2009-06-18T15:59:00.004+01:00

The colonoscopy requires you to have a sedative injection. It is imperative that you arrange for a responsible person to escort you home, either in their car or by taxi, as you will not be allowed to drive or go on public transport.

IF YOU DO NOT HAVE AN ESCORT, YOUR PROCEDURE WILL BE CANCELLED.

Last Night.

After my nominated escort pulled out at the 11th hour, there was a last minute panic over who would come with me to the hospital. The letter from the hospital clearly states no escort, no colonoscopy. My girlfriend had already offered to come back from Germany for the day, but as I’m flying out to meet her in Munich tomorrow, it just seemed a pointless waste of money. My dad would have come down from the Midlands, but he has to cover for a colleague who is off sick. And at such short notice everyone else I could think of has other commitments. Desperately reading and rereading the hospital letter looking for some loophole in the rules, their use of the word ‘escort’ gave me an idea. Bingo! I could hire an escort girl to go with me. I was just wondering how much this would cost and where I could procure the services of such a girl, when I received a text from a former barmaid of a bar I used to go in. I haven’t seen her since before Christmas and she just wanted to know how I was keeping. Being in a bit of a tight spot, I took a punt and texted her back asking if she would be free to go to the hospital with me. Hookers, ex-barmaids, whatever; my life is anything but straightforward. She replied saying she’d get back to me in 20 minutes. She just had to sort a few things out. Promising. A little later she called with a plan. She would pick me up and take me to the hospital and then her mum or her best friend Nicola would take me home. Suddenly my hospital visit was descending into something akin to the evacuation of Dunkirk, where any old barge was commandeered into service. But instead of an old barge, I got an old barmaid, her mum and her mate. Not that I was complaining, without them there would be no colonoscopy.

This Morning.

At 8.30am sharp the former barmaid of a bar I used to go in and I dutifully reported to the Endoscopy Department at Whipps Cross Hospital. I filled out some forms and we were shown through to the preparation area. A nurse led us to Bed 2, where she told us to make ourselves comfortable. When the nurse had gone the former barmaid of a bar I used to go in whispered, “They think we’re a couple!” Before I could reply a doctor appeared and pulled the curtains around us, shaking our hands politely. He definitely had us down as Mr and Mrs. Out of the corner of my eye I could see the former barmaid of a bar I used to go in flash me a look. I pretended I hadn’t seen and listened intently to the doctor, nodding along with my head. All the while I sensed the ex-barmaid’s eyes boring into me. The doctor stood and told me to change into my gown. The former barmaid was on her feet in a shot, her hands raised, palms open as if to say ‘enough!’ And she disappeared through the curtain, muttering something under her breath. The doctor looked at me quizzically, and I just gave a shrug of the shoulders.

Lying on my side with my knees tucked up, I had a lovely view of the inside of my arse on the telly. If the mild sedative injection was having any effect I wasn’t really aware of it. All I could feel was a slight bloated sensation as the camera worked its way up my back passage. Guiding the camera was the Italian surgeon who operated on me earlier in the year. He knows my insides inside out, so I felt in safe hands. According to him there is still some mild inflammation in the rectum, but this wasn’t too unexpected. Next I flipped over onto my back and the camera went in through my stoma. I didn’t feel a thing, and it was much more comfortable than having it up the bum. This part of the procedure took about 25 minutes as the camera had to go right up and around my colon. It was like a rollercoaster ride but in extreme slow motion. During the return trip he took some biopsies with the mechanical grabber thing. On the TV it looked huge, like something used by astronauts to fix satellites, but in reality it’s extremely tiny. And all you feel is the faintest tug as it nips at the stomach lining. Again the doctor said there was very mild inflammation in some areas, but he still felt having a reversal was possible and that would be his recommendation. So all in all it was a successful mission.

Once dressed I was given a cup of coffee and 4 Rich Tea biscuits, which I scoffed in seconds. I then went out to the waiting area not quite sure who was going to be waiting for me. To my surprise it was the former barmaid of a bar I used to go in. She smiled and stood and we walked out together, making sure there was a good yard of space between us so everyone knew that we weren’t a couple. As the automatic door closed behind us, I turned to the ex-barmaid and said, “Thanks Lauren, I owe you a drink.”

Colonoscopy Week Live! - 6am, 3rd Laxative

2009-06-18T06:17:00.003+01:00

I have just had my 3rd and final Picolax. Half a glass this time. It’s been over 33 hours since I last ate and about 9 seconds since I last thought about food. Constantly thinking about food has at least taken my mind off the colonoscopy. I woke up in the night and felt extremely shaky and lightheaded, so I glugged a glass of Lucozade, a hot mug of funny vegetable stock stuff called Bouillon Powder and a very sweet coffee. That seemed to do the trick. Now I just want to get it all over so I can eat something.

Blogging from my desk.

Colonoscopy Week Live! - 5pm, I could bite the legs off a low-flying duck

2009-06-17T16:57:00.004+01:00

If you ever find yourself mid-fast, that is to say you haven’t eaten for 17 hours or so, take my advice and do not take a walk along your local high street. Just don’t. Earlier I went up Walthamstow Market. Big mistake. Until today I had no idea just how many fast food outlets there are up there. I know exactly how many there are now because I smelt each and every one of them individually. Pizza, burgers, kebabs, pie and mash, curries, Chinese, Portugese, Caribbean, candy floss; with each step my nostrils were filled with another tantalising aroma. It had me salivating like a cartoon dog, leaving a trail of dribble the length of the market. I’ve never known hunger like it. I nearly tried to suck the sustenance out of a discarded cherry stone. A good minute and a half was spent drooling over a bundle of plastic mop handles. Wondering if there was any nutritional value in air I greedily gulped the breeze outside a fried chicken joint. If I learnt anything it’s that going without food doesn’t just make you hungry, it makes you directionless. Without mealtimes the day has no structure. I am adrift in a barren desert of time bereft of all landmarks.

Colonoscopy Week Live! - 4pm, 2nd Laxative

2009-06-17T16:11:00.002+01:00

When people refer to something going through them like a dose of salts, I now have a much clearer idea of what they mean.

Colonoscopy Week Live! - 1.45pm, Fasting Slowly

2009-06-17T13:43:00.002+01:00

Colonoscopy Week Live! - 11am, Little Bit Hungry Now

2009-06-17T11:03:00.000+01:00

A cheese sandwich. What was I thinking? I could’ve had a big juicy steak with creamy mashed potato. Or oven chips. Oven chips were allowed. A big juicy steak with oven chips. And I could’ve made chip butties with thickly sliced soft white bread that soaks up the drooling melted butter. I could’ve had that for my last meal, but no, I decided to have a cheese sandwich. Just a pretty ordinary, run of the mill cheese sanger. Whelks put more imagination into what they’re going to eat than that. As I sit here now banging my head repeatedly on my desk, with hunger gnawing away at me, my belly as empty and cavernous as the world’s largest Mexican restaurant the day after the chef asked, “Does anyone else feel a bit funny or is it just me?” and I think to myself what sort of pillock has a cheese sandwich for his last meal when he could’ve had a sodding steak?

Colonoscopy Week Live! - 8am, 1st Laxative

2009-06-17T09:12:00.004+01:00

Picolax is a strong laxative that will cause diarrhoea and empty the bowel. It is wise to stay within easy reach of a toilet once you have taken this medication. Avoid travelling or going to work.

As directed I took my first sachet of Picolax at 8am this morning. It tasted vaguely orangey. At 8.45am I needed to empty my bag. I guess the laxative is working then. I haven’t eaten anything for about 12 hours now. Instead of my usual 4 Weetabix I’m having a black coffee for breakfast. No milk allowed. I'm not going into work today. And I won't be straying too far from my computer. Or the bathroom. It’s going to be a long day.

Colonoscopy Week Live! - The Last Supper

2009-06-16T18:45:00.003+01:00

Tonight I will have my last meal before the colonoscopy. I wasn’t sure what I wanted to eat, so I turned to the internet for inspiration. That’s where I came across this record of the final meal requests of inmates on Death Row. It makes for an oddly fascinating read. Requests vary between those who want a massive blow out before they bow out (two 16 oz. ribeyes, one lb. turkey breast (sliced thin), twelve strips of bacon, two large hamburgers with mayo, onion, and lettuce, two large baked potatoes with butter, sour cream, cheese, and chives, four slices of cheese or one-half pound of grated cheddar cheese, chef salad with blue cheese dressing, two ears of corn on the cob, one pint of mint chocolate chip ice cream, and four vanilla Cokes or Mr. Pibb) to those who seem to be pointlessly counting the calories, like a certain James Russell who in 1991 simply asked for an apple. Bless. In retrospect, perhaps the Texas Department of Criminal Justice wasn’t exactly the best place to look for recipe ideas. After reading some of the offender profiles I actually lost my appetite. But putting Death Row to the back of my mind and thinking only happy thoughts I finally decided on what my last meal will be – mature cheddar cheese sandwiches made with thick, crusty white bread. Nice and simple. I think James Russell would have approved.

Colonoscopy Week Live! - Dinner Update

2009-06-15T19:00:00.005+01:00

The dietary chart the hospital sent me says I can eat ‘All white fish with no skin or bones’. And it clearly states I can’t have ‘Canned fish, fried fish, kippers or shellfish’. There’s no mention of fish fingers. I don’t know what category they fall into? So I took a gamble. I had fish fingers. Six of ‘em. I told you this was going to be gripping stuff. Admittedly this low fibre diet is varied enough for me to have been a little more adventurous in the kitchen, but my girlfriend is away and I’m only cooking for myself, so I went for a big old plate of comfort food. And as thunder begins to rumble ominously overhead and rain starts to hammer the window panes, I think that’s exactly what was required.

Colonoscopy Week Live!

2009-06-15T16:18:00.000+01:00

On Thursday I will be having a colonoscopy investigation. To prepare me for this I have been sent a set of detailed instructions to follow. So today and tomorrow I am on a low fibre diet. Which means I can’t have brown bread, vegetables, fruit, cereal, most biscuits, jams, and loads of other stuff. Lean meats, white bread, boiled or mashed potatoes, white pasta, jelly, cheese, eggs, natural yoghurt, milk and fish are all fine. It’s not so bad. Better than Wednesday. I can’t eat anything at all from Wednesday onwards. Best stuff myself while I can then. All week I will be writing about the build up to Thursday’s colonoscopy. Kind of nearly almost live blogging, in a way, sort of. There’s going to be laxatives, sedatives, fasting, cameras going in various orifices, biopsies and a 1 in 1000 chance of a perforation in the bowel. Gripping stuff. Stay tuned if you don’t want to miss out on any of the action. Anything could happen between now and Friday…

Rugby special

2009-06-14T19:02:00.004+01:00

A couple of days before having surgery my stoma nurse told me about one of her patients who continued to play rugby after he’d had an ileostomy. I found this hard to believe. As an ex-rugby player I know the physical abuse your body takes during a game. I’ve got the scars to show for it. So the idea that someone would put themselves through 80 minutes of the roughest kind of rough and tumble, with little more than a plastic sporran covering an actual opening to their intestines, was to my mind, ludicrous. Not big, or hard, or brave, but madness. Of course the purpose of telling me about the crazy rugby playing ostomate was to reassure me that as far as physical activities go, having a bag doesn’t mean it’s game over. If you were active before surgery, there’s no reason why you shouldn’t be active after it. I’m sure my stoma nurse has a similarly inspirational story tailored for girls. Probably that one of her patients continued to appear regularly as Biffette on Gladiators after she’d had a colostomy. Or singlehandedly sailed around Ellen MacArthur in a cup and saucer. I suppose when you’re staring surgery in the face it’s comforting to hear that having a bag needn’t stop you getting out there and leading a full life. Since becoming an ostomate I haven’t done anything so courageous/mad as actually playing rugby, but this weekend I did enjoy a bit of a kickabout with my brother in my parent’s garden. A rugby ball is like a time machine for us. The moment we get our hands on a Gilbert we’re instantly transported back 20 years. We might warm up with a few sensible passes, but then the old competitiveness kicks in and soon each ball we drill at each other is harder than the one before. Then we’ll work our way through a repertoire of kicks – grubbers, box kicks and drop kicks – trying to make the other fumble the ball. The whole time we were playing I didn’t really think about my bag at all. I was slightly aware of it flapping a bit as I jogged about, but it didn’t give me any problems. The only thing I had to worry about were the evil spiral kicks my brother kept aiming at my head. Some things never change.

Wednesday's diary on a Thursday 6.4

2009-06-11T12:03:00.004+01:00

This week in a last ditch and perhaps futile attempt to claw WDOAT back from the brink of utter tediousness, you’ll notice I’ve included a picture of a toilet seat that has been painted to resemble the gaping jaws of a large reptile or possibly a dinosaur. Look closely and you’ll see the toilet rolls have been strategically placed to represent eyes. I don’t know if a picture of a toilet seat that has been painted to resemble the gaping jaws of a large reptile or possibly a dinosaur with strategically placed toilet rolls for eyes is enough to pique the interest of anyone who happens upon today’s WDOAT? Some may even question the relevance of a picture of a toilet seat that has been painted to resemble the gaping jaws of a large reptile or possibly a dinosaur with strategically placed toilet rolls for eyes. Relevance aside, let’s just take a moment appreciate the extraordinary effort that has gone into it. Someone has taken a lot of time over this. It’s kind of clever and stupid all at once. It would be great in the toilets at a zoo. It’s a painstaking piece of work. You could call it art. You might even call it the Cistern Chapel. But that would be very silly. As much as a toilet seat painted to resemble the gaping jaws of a large reptile or possibly a dinosaur with strategically placed toilet rolls for eyes is quite a witty visual pun, and may raise a smile, I can’t help thinking that if I were pointing Percy at this particular porcelain, all those teeth might make me feel a little vulnerable.

Wednesday 10th June:
7.45am Change bag
1pm Change bag
8.25pm Change bag

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

Comments:
Nothing to report. Sorry.

GQ/UC

2009-06-10T09:37:00.004+01:00

The year is 1988. I’m making a call in a telephone box near the clock tower in my hometown. It’s lunchtime and I’ve made the 10 minute walk from art college to get a couple of hot sausage rolls, which I’ll eat on one of the benches in the old churchyard. I only left school a few months ago and it’s still a novelty to be in the town centre during a weekday. As I lean against the cold glass I notice a magazine in the litter bin outside the phone box. It’s lying on top of all the regular rubbish, but it’s clear it doesn’t belong amongst the flimsy sweet wrappers and greasy chip papers. It’s too glossy, too new, too crisp, and at half an inch thick, it just looks too solidly respectable. I recall fretting that someone might steal the magazine from under my nose before I finish my call. But no one does, they just hurry about their business, unaware of the magazine that is having the same effect on me as Wonka’s Golden Ticket had on Charlie Bucket. I feel myself being drawn in and after what seems like forever I leap out of the phone box as if coming up for air. Finally I have the magazine in my hands. It’s heavier than I expected. The spine is ruler straight and without creases, making me believe its pages have never been turned. In the top left hand corner of the front cover are two bold letters that lightly kiss one another leaving no air between them – GQ. I turn the pages as if handling gold leaf; my eyes linger hungrily over the advertisements for suits, and for shoes, and shirts, and aftershaves. The unfamiliar names of the makers are a foreign language to me. I brush my fingertips lightly across the pages, as if feeling the fabric of the clothes printed on them. Each page seduces me and encourages me deeper inside. By the time I reach the back cover I’m almost breathless. Turning the magazine over I read those two letters again, mouthing them silently, slowly. Right now the G and Q mean nothing tangible to me, but I already have a feeling that in time they will come to mean something special. Between the covers of this magazine I have discovered a different world, a world unrecognisable from the one I live in. It’s a world of style, of suave sophistication, of elegance, of cocktails, far flung destinations, colonial clubs, nightclubs and sex. And I find it in a bin on my way to buy sausage rolls.

Even before I found that copy of GQ I was into clothes. I’ve always liked to put a bit of thought into what I wear. I like details: an unusual collar, or an oddly placed pocket, or a nice lining, an unusual print, fancy buttons, anything a bit different. I’ve never been what you might call a straightforward jeans and t-shirt kind of guy. Don’t get me wrong, I’m no label snob, I couldn’t tell you what make half my clothes are. It doesn’t matter to me if it’s Oswald Boateng or Oxfam. So as something of a self-confessed dandy, I’m ashamed to admit that in the weeks following surgery I let myself go a bit. Even now I shudder at the memory of going to Sainsbury’s in trackie bottoms. Tracksuit bottoms. The horror. But the scariest thing of all is I didn’t care. Not a jot. I really didn’t give a damn what I looked like. The only thing that concerned me was comfort. And those trackie bottoms were comfortable. They weren’t too tight, there was no belt digging into my swollen abdomen, they were easy to pull on. The perfect post-op pants really. This sartorial slobbery continued for a good few weeks, until one day I was making my usual trip up Walthamstow Market to do some shopping, when I suddenly felt a bit self-conscious. Something didn’t feel right, like I was in the wrong skin. And I realised it was my clothes. I no longer felt comfortable in my comfortable trackies. Looking around me I saw that I was dressed like everyone else. At that moment I realised I was getting better. I was beginning to think about my appearance again. For a while I didn’t have the energy to think about anything other than getting through the day. It was a no frills existence. A trackie bottoms life. As far from the hallowed pages of GQ as you can get. But now I’m back in my old clobber. And that suits me just fine.

The key to the door

2009-06-07T19:55:00.006+01:00

The RADAR key gives you access to 7000 public toilets across the country. It got its name because it’s so big it actually shows up on radar. Seriously, it’s massive. I measured mine at a whopping 10cm. It’s the sort of thing you’d expect to get if you were given the key to Chicago. Honestly I think they must have modeled it on Dracula’s back door key. If it doesn’t open pirate chests I’m a Dutchman. It’s truly a colossus of a key. Try it in the lock first, but if that fails you can use it as a battering ram. How disabled people are meant to carry it around is beyond me. Just picking it up nearly put me in a wheelchair. I’m thinking about taking mine down the scrapyard and seeing what they’ll give me for it. Christ it’s big. I won’t be able to keep it in my trouser pocket, I’ll get arrested. You can order a RADAR key from here, although I’ve heard it can take up to 4 months to arrive. Which is understandable, they probably have to close down entire motorways to transport them. My mum got mine from her local mobility shop. It cost £5. And then £4,799 to post it.

Also opens with the aid of a RADAR key.

Wednesday's diary on a Thursday 6.3

2009-06-04T07:46:00.004+01:00

Possibly the most pointless and boring Wednesday themed item on the internet, it’s WDOAT…

Wednesday 3rd June:
6.50am Change bag
2pm Change bag

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

Comments:
Stools back to normal after the weekend's sickness.

Sick of no sick pay

2009-06-03T17:42:00.006+01:00

Unless you happen to be an entirely self-sufficient hermit living in the remotest cave in the remotest corner of the remotest island of the most remote group of islands off of Orkney, one way or another the financial crisis will have had some impact on your life. All across Britain belts are being tightened. And in some cases belts are being sold for money to buy food. These are worrying times for us all. One thing that concerns me as a freelancer is I don’t get paid for time off sick. For the first 3 months of this year I wasn’t able to work. I managed a couple of days here and there, but I wasn’t earning nearly enough to cover my mortgage and other outgoings. Fortunately I had my UC fund. As a self-employed person with an illness that can prevent me from working, I figured a while back that it would make sense to always have a few quid in the bank for a rainy day. Or in my case about 90 shitty days. So I’ve squirreled away a pot of money in the bank (earning bugger all interest these days, by the way) just to cover my sick periods. I need to have that security there. It means that when I go in for my next operation later in the year I don’t have to worry about money, and I can just concentrate on my recovery. I won’t need to rush back to work before I’m ready either. A small part of me resents having to have a UC fund at all, but that’s just the way it is. As long as I have UC I’ll have a UC fund. What is hard to stomach is the loss of earnings. I recently had to give my accountants all my tax gubbins for the year and I’d estimate my annual take home is down by about 20%. When you start to count the cost like that you realise that ulcerative colitis doesn’t just spread through your colon, it spreads through your whole life.

Below is a chart, which illustrates the effect UC had on my earnings over the last year. It’s awfully vulgar talking about money, so I’ve used kittens to represent my pay. As you can see January, February and March were lean months kitten-wise.

Portaloony invention

2009-06-02T06:09:00.006+01:00

Introducing the convenience that pops up at your convenience. Yes, it’s a cardboard flatpack loo. The Brown Corporation who manufacture the imaginatively named Shit Box are clearly aiming for the festival crowd, but I think they may have inadvertently stumbled across a whole new market in people with UC. The Shit Box would mean when that when urgency strikes we no longer have to make it to the toilet in time, we simply have to make the toilet in time. And apparently it only takes two ticks to put up, which sometimes is all we have. It also says on their website that the Shit Box can be used time and time again, which in the case of someone with UC, is just as well.

How was your weekend?

2009-06-01T14:32:00.003+01:00

It’s around 1am Saturday morning when I awake. Instinctively I check my bag. It’s almost solid to touch. For some reason it brings back a childhood memory of the hard, plastic water canteen that would sit snuggly inside my Action Man’s jacket pocket. When the bag is this full it restricts your movements. Because it has no give, the bag won’t fold with your body, so you have to keep as straight as possible, which means sliding out of bed like an ironing board. As I stiffly make my way to the bathroom I hear a sloshing sound coming from below. Perhaps an Action Man waterbed would have been a more accurate comparison. I kneel beside the toilet and go through my routine. First I place a big handful of toilet paper in the bowl to reduce splashing, and then I tear off more toilet paper in sheets of three and fold them into sausage shapes for cleaning the opening of the bag. Once I’m all prepared I carefully hold the opening over the toilet and release the contents. Usually the stool is reasonably solid so I have to help squeeze it out, but this time, whoosh, the bag empties like a burst dam. It’s the consistency of watery gravy. Before I have time to process any of this I realise I’m going to be sick. I quickly assume the position: my head lunges out over the bowl and my knuckles ram hard into the floor tiles. The first heaves are the most violent and brutal, coming thick and fast one after the other, before becoming more sporadic and weaker, like the thunderclaps of a storm passing out of harms way. Dry heaves signal the end of my ordeal and I pull myself upright, the tears in my eyes refracting the glare of the ceiling spotlights turning them into hot white twinkling stars that make me feel dizzy and sick all over again. I crawl back into bed to discover my duvet has lost its power to provide warmth. Shivering, I rewind through the day, hoping to stumble across a clue to the cause of my sickness; blueberries, ham salad, pears, coffee…Sleep intervenes before the case is cracked. An hour or so later I awake again to find my bag has refilled and a choking nausea is creeping up my windpipe. I make it to the bathroom in time for another wretched white-knuckle ride, which is not to be the last before sunrise, not by a long shot. In the cold light of day, exhausted and drained of all fluids, I come to the conclusion that I can eliminate blueberries, ham salads, pears, coffee and everything else I ate the previous day from my enquiries. I decide I have picked up a bug. A sickness and diarrhoea bug. I believe it happened during the chaos in the public toilets (see previous post.) With one thing and another I wasn’t able to wash my hands and be as careful over my cleanliness as I would have liked. Having an exposed hole directly into your insides must be like a motorway for germs. I’m certain this is the cause of my sudden illness. Sickness and diarrhoea is nasty enough without the added problem of a colostomy bag continually refilling itself like the magic porridge pot. Saturday is spent on my sofa drifting in out of consciousness, the sound of children playing outside punctuate my dreams, whilst Everton miss out on the FA Cup, Susan Boyle misses out on Britain’s Got Talent, and I miss out on the best weekend of the year so far. Truly sickening.

Blow up

2009-05-29T17:03:00.002+01:00

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.