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

Every UC cloud has a silver lining

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?

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

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...

Sophie's Surprise

Happy feet

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

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

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

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

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

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

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

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

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?