To the grave

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

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

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

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!

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

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

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

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

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

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

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

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

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

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!

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

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

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

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

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

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

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

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?

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.