Tuesday, April 6, 2010

From there to here: my UC story at a glance

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.

Tuesday, March 30, 2010

Eavesdropping, me?

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.

Sunday, March 28, 2010

Oh Vienna

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.

Saturday, March 27, 2010


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.

Tuesday, November 24, 2009

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.

Sunday, November 22, 2009

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?