Wednesday's diary on a Thursday 0.7

Me and my UC are going to Italy for a couple of weeks. It’ll be our first proper holiday away together. Aaaah, how romantic. And just in the nick of time everything seems to be calming down. So as this will be my last post for a while, I’ll leave you with this.

Wednesday 30th August:
6.35am Loose stool

Medication:
6 x Mesalazine 400mg
4 x Prednisolone 5mg
3 x Ferrous Sulphate 200mg
2 x Calcium Carb 1.25g

Comments:
Stopped taking the foam enema completely after I forgot to take it one night and discovered it felt better without. Fingers crossed I'm doing the right thing. Hardly any stomach pains now, but I can still feel it's 'there'. But by far and a long way the best I've felt in months.

The Hell Drug! Smile! Cheese!

This video blog by an ulcerative colitis sufferer made me laugh. I had no idea UC could give you verbal diarrhoea too. Bless her for sharing her experiences, though, and she did manage to bring a smile to my cynical old face. If this is her on the Hell Drug imagine what she’s like when she’s feeling well. Frightening.

It was the dog, I swear

I sometimes feel a little shy on zebra crossings. I don’t like the drivers peering out at me. I feel exposed and I don’t like the attention. Yet here I am, this supposedly shy person, writing about my poo on the internet. Not exactly the actions of a chronic introvert, I agree. But when I started this blog I made a promise to be honest. To tell it like it is, no matter how embarrassing. So it brings me no pleasure whatsoever to announce that for the first time in a very long while, I can fart again. This is of course a good thing. Unless you happen to be in the room with me, in which case it’s more of an eye-watering thing. Up until the last few days passing wind would have meant a change of underwear (sheesh, now I really am airing my dirty laundry in public). But oh, what a blessed relief it is to trump without fear of touching cloth. Now when I let one go I don’t let anything go with it. My guffs are gaseous, dry as a bone. I think this is a positive development and a sign that things might be getting back to normal down below. There is a wind of change blowing in my bowels, if you like. Well, that was only mildly uncomfortable. But in order to give a truthful account of life with ulcerative colitis, I think it was worth the blushes. Better out than in as they say.

Snapshot circa '97

I hit the stool like the shipwrecked hit land. I was full to the brim drunk and I couldn’t hide it if I tried. My fingers curled around a glass. Which pub I was in I didn’t know. They all looked the same and after nine o’clock they took the menus away with the pub’s name on them. Looking around didn’t help; fathers dancing with daughters, work clothes passing for good in the gloom, money counted out beneath tables, racing slip confetti on the floorboards, swear words punctuating tobacco stained sentences. Then I remembered. It was in my hand; a scrap of paper, just a corner of something else. And written on it was a snippet, just a few little words. In a drunken version of my handwriting it read ‘THE WIGGLE WAS FUN, WELL IT WAS BEFORE. THE HAIR IS NOW GREY, BUT WHAT THE HEY!’ Seventeen words, in four lines, sealed with an exclamation mark, which I normally don’t like. I guess it was a poem of sorts. A memory tumbled into focus. It was written about and for the woman sitting beside me. I was going to give it to her. How many men in her life had presented her a poem? I was confident none. I slid the poem along the bar and fixed my eyes on hers as she read my words.
“What is it?”
“Read it.”
“I can’t, it’s all blurred.”
She was right. It was unreadable. I had slid it through a ring of beer left by a glass.
“What did it say?”
“It was a poem. I wrote it for you.”
“You remember how it goes?”
“I do, but it was meant to be read, I don’t want to say it out loud.”
“Oh.”
She wiggled a hand in front of my face. No wedding ring, I noted. Then I understood and began to write the poem on the back of her hand.
“I’m Very.”
I stopped writing. I wait for more. It doesn’t come.
“That’s your name?”
“Very Ellis.”
“It’s a very unusual name.”
“Well, it’s very me. Have you finished?”
I nod, I had. She takes her hand back and fishes for a cigarette.
“Aren’t you going to read it then?” I say.
“Later I will.”
“It’s not long.”
“I know, but I like to read in bed.”

Now I’m not drinking pubs just aren’t the same. Pubs these days are like swimming pools that have been drained; everything pretty much looks the same, but the vital ingredient that made it fun is missing. Stepping into a pub used to be like stepping through a portal to another world. A more colourful world where only the Guinness was black and white. Alcohol was your passport. With pint in hand you never knew where you would end up. Every pub had its cast of characters ready to act out the play for today solely for your entertainment. There were the dodgy geezers who’d try and sell you static caravans in the Essex hinterlands, the Jackanory merchants who had all had trials for Spurs , the pasty faced bores, the fruit machine feeders, the fat jokers crying on the inside, the ex-cons, the wastrels, the floozies, the braggers, the diehard dandies, the lonely, the incoherent and confused, pantomime landladies who could sniff out trouble at a hundred yards and pub dogs that would sniff your crotch. Like toys that come to life at night they would play and fight and squabble and love while no one was looking. Except someone was looking, and how I miss it now.

Oi-Oi!

Walthamstow has the longest street market in Europe. A steel and canvas spine of 400 stalls stretches the High Street for about a mile, a mish-mash of colours, smells, sounds, a collage of cultures all jammed up against each other. 147 languages are spoken in the borough of Waltham Forest alone. A walk from one end to the other is a bit like crossing a hundred international borders. It’s quite an experience on a Saturday morning. The first time I went I witnessed a full on fight between a Cor Blimey female fruit and veg seller and a Pakistani woman. It was a proper hair pulling, face scratching, obscenity spewing, tussle of pure violence. Probably over the price of cherry tomatoes. That’s what Walthamstow Market is like. Of course, between bouts of WWF (Walthamstow Women’s Fighting) there’s shopping to do. So grab your basket and join me on a meander through the stalls. Keep your wits about you and your elbows in; this is bandit country. First stop, the fruit and veg stall. Be careful around here, it’s like a youth club for dysfunctional wasps. Right, what do I want...hmmm, cabbage is out, and broccoli, cauliflower, sprouts, corn on the cob, mushrooms, tomatoes, onions, peas and broad beans. Carrots and potatoes it is, then. Can’t have any acidic fruits, so no oranges or grapefruit. Not allowed fruit with seeds or skin, so bang goes your berries and your grapes. I’ve never had much time for the apple so I’m hardly going to bother peeling one. I’ll have a few bananas. Through the bobbing heads the cheese stall comes into view. I am a sucker for any kind of cheese. My pulse quickens and all I can see is stilton, all I can think is stilton, all I want in life is stilton. I want all my clothes to be made of stilton just so every night I can eat them off when I go to bed…a sharp mental slap brings me to my senses. Cheese is off limits, banished with all other dairy produce. Best keep moving. We pass a stall selling plastic bowls, plastic cups, plastic colanders, plastic cutlery, plastic toilet brushes, even plastic fruit. I wonder if I’m allowed plastic fruit? Yum. I ignore all the fabulous smelling wholemeal granary loaves and opt for a retro 1970’s style sliced white loaf. Mustn’t have any insoluble fibre or as it’s otherwise known, the tasty stuff. Oi-Oi! is the market traders’ call of choice in Walthamstow. The air is thick with Oi-Oi!’s battling it out for our attention. I’m nearly done though; shopping is no fun with ulcerative colitis. It’s a frustrating task, which requires monk-like levels of self-control. So if it’s all the same to you I’m going to leave you to look around yourself. There’s plenty more to see, just remember you’re not in Waitrose now.

Wednesday's diary on a Thursday 0.6

It thinks I don’t know what it’s up to, but I do. My UC is playing silly buggers, you see; it always behaves itself on Wednesdays, because it knows whatever it gets up to will be published here on Thursdays. So on Wednesdays my UC is as good as gold, all doe-eyed innocence and butter wouldn’t melt harmlessness. But the moment the spotlight is off it, the angelic veneer is gone and it’s business as usual. If this was called Monday’s diary on a Tuesday it’d tell a very different story. So here it is, Wednesday’s (not a true reflection of how things really are) diary on a Thursday.

Wednesday 22nd August:
6.30am Loose, blood
8.05am Loose, gassy
1.45pm Loose, light blood
4.00pm Stool

Medication:
6 x Mesalazine 400mg
4 x Prednisolone 5mg
1 x Asacol Mesalazine foam enema
3 x Ferrous Sulphate 200mg
2 x Calcium Carb 1.25g

Comments:
Dropped to 4 Prednisolone. Less crampy stomach pains. Feel like things are improving very, very, very slowly.

Wednesday's diary on a Thursday 0.5

Welcome, poop fans, it's Thursday, which can only mean one thing...it's Top of the Plops.

Wednesday 15th August:
6.15am Watery, light blood
8.15am Gassy, light blood
11.35am Loose stool (Threw up, too)
1.20pm Loose stool
6.35pm Loose stool


Medication:
6 x Mesalazine 400mg
5 x Prednisolone 5mg
1 x Asacol Mesalazine foam enema
3 x Ferrous Sulphate 200mg
2 x Calcium Carb 1.25g

Comments:
Decided to only take the enema at bedtime. Seems to upset my stomach in the mornings. Upped the iron tablets as my doctor ordered. Why I was sick is a complete mystery, so I'm not going to worry about it; a one off, freak incident.

Anyone for tea? Part II

3 small plastic bottles of dirty water in an old faded Tesco bag. That’s what my £25 bought me. 3 bottles of murky water that looked like it had been dredged up in Tewkesbury High Street during the recent floods. I couldn’t help thinking a little more effort on presentation wouldn’t have gone amiss. Perhaps sensing my apprehension, the Chinese medicine woman began babbling. Apparently she had used 15 different ingredients to make my brew. She leapt about the shop pointing out the jars. Yep, that’d be why it came out brown, then; manky bits of stuff, scraps of mummified foreskin, dried wizard nipples. And she wanted me to put this stuff in my mouth? Good God, what did the woman take me for? A mudskipper? She explained how I should pour an inch of the potion into a cup then fill the rest with boiling water. She could try and make it sound all delicious and yummy all she liked, like a post-pub Pot Noodle, but it wouldn’t wash with me. It looked like bottled poo water. “Dried mushroom, yeah?” I said pointing at a nearby jar. “No, not mushroom.” That told me. “3 cup a day for 3 month make better.” How much for how long? What had started out as such a promising little consultation between Chinese doctor and English patient had soured. My bottle well and truly gone I backed out the shop clutching my bag of bottles.

Tea’s up!

You know the archetypal image of the English drinking their tea, all refined elegance, and that peculiar nuance of the daintily outstretched pinkie? Well they obviously weren’t drinking the kind of tea I was drinking. My back arched like a puking cat I huddled over my steaming mug of mud juice. The first sip had smashed my taste buds to smithereens and reassembled them on the surface of my tongue in the wrong order. My sweet and sour and my bitter and savoury were all to cock. It is impossible for me to accurately describe the taste. Alien soup, possibly? Goblin gangrene? What I can say is, never has a cup of tea been in more need of a good garibaldi. Looking into the mug I saw the Chinese doctor’s mocking face reflected in the surface of the poison, “3 cup a day! 3 cup a day! 3 cup a day!” I drained the last of the tea. It was gritty and made my teeth itch. I don’t know if I’ll continue with the tea after these 3 bottles. And it’s not just the awful taste or the extortionate price. More than that it’s because drinking the foul concoction makes me feel ever so slightly desperate, like I’d suffer any amount of torture or humiliation or pay any price just to feel a bit better. I’m not at that point yet, so tea break's over.

Anyone for tea?

It looked like a Hobbit’s sweetshop. Floor to ceiling with red-topped jars containing what appeared to be bits of twig, bark, bone, fungus, leaves, dried squirrel poo, pork scratchings and other unfathomable oddments alien to my Western eyes. Each jar had a label with neatly squashed daddy longlegs on it. Or it might have been Chinese handwriting. Either way it didn’t help identify the jar’s contents. With a swish the shopkeeper appeared through a beaded curtain. “Hello? How can help?” She was about Hobbit size, with a warm smiling, shiny face that immediately filled me with trust. “I was just wondering if there’s anything you can do for ulcerative colitis?” “What that? You write down what that.” She handed me a pen and pushed a scrap of paper across the counter. A little bit of my trust turned to dust. I scribbled ULCERATIVE COLITIS in shouty letters. “I see what is in Chinese. My English no good.” I filled the silence with a noncommittal smile, quite unsure as to what to say or do next. Luckily, she wasn’t at all inhibited by her threadbare vocabulary and started asking me lots of seemingly random questions. “Where you work?” “Where you live?” “What your name?” Clearly and concisely and in a tone normally reserved for Customs officials I replied. Satisfied, she instructed me to return later that day. As I left the Chinese medicine shop she called out, “See you later, Martin!” On hearing her use my name the needle on my internal Trustometer twitched, taking it back to ‘Full’.

Interlude.

The little Chinese chemist rushed out to greet me, smiling and pointing at her tummy “I know! I know!” (How come you never see traditional doctors this enthusiastic?) “I make tea for you. You drink tea, okay?” “If you think it’ll help?” I asked. “It help, it stop you go to toilet, take away pain.” Now the only thing I know about Chinese medicine is the shops are nearly always next door to the key cutting place in shopping centres. That’s it, that’s all I know; ‘Chinese medicine from 5000BC to the present day’, it’s fair to say, would not be my chosen specialist subject on Mastermind. So am I going to put my faith in this Oriental Getafix? Am I going to drink her magic potion that she ever-so-innocently calls tea? Am I going to listen to someone who knows approximately 47 English words, 48 if you include ‘Martin’? Of course I am, I’m desperate. “Okay, I’ll take the tea.” I say. “Good, good, I make tea for you. You come back tomorrow, yes? £25, 5 days tea.” I handed the money over quickly before common sense prevailed. This time she didn’t use my name when she said goodbye. She had my 25 quid, no need for further niceties, I grumbled unkindly to myself.

To be continued...

Get shirty

Back in 1998 I treated myself to a Vivienne Westwood shirt. As soon as I saw it I knew I had to have it. Rubbing the cloth between my thumb and forefinger made me feel all higgledy-piggledy inside, all excited. It was that kind of a shirt. It was ace. Bluey-grey, beautiful cut, with three buttons on a modish 4 inch deep collar. A dandyish, Kinksian shirt. And mine for the handsome price of £120. There was just one problem. It didn’t fit. Even when I sucked in it stretched over my gut like a sausage skin. I couldn’t even lift my arms above shoulder height. It was the most stylish straightjacket you’ve ever seen. But if I lost just a few pounds…cut back on the black stuff…knocked the pie, chips and mushy peas on the head…did a little exercise…then Mr Saturday Night Fever would wear his Ms Westwood, oh yes. Who was I kidding? My girth remained on the jolly side of things, shall we say, and my shirt skulked in the back of my wardrobe like a long forgotten, much loved toy. Years passed. I went on to celebrate the new Millennium, England winning a World Cup at rugby, too many birthdays to remember and countless other occasions, in utterly forgettable shirts. Nice shirts, adequate shirts, some even quite dapper, but none capable of making me swoon like the one hanging in my wardrobe. From time to time, in moments of ridiculous optimism, and filled with hope like a would be King Arthur pulling at the sword in the stone I would pull on my beloved shirt. But each time it led to the same old disappointment. There is though, a happy ending to this tale of boy meets shirt. A fitting ending, if you’ll excuse the pun. Ulcerative colitis has meant I’ve lost around 2 stone, give or take a scotch egg. So when I arrived home after being in hospital, the first thing I did was try on my Vivienne Westwood. And glory be, it fitted. After 9 long years I can step out of an evening, a vision of sartorial elegance, cutting a dash in my Bobby Dazzler of a blouson. A case of inflammatory bowel disease maketh the clothes maketh the man, you could say.

Wednesday's diary on a Thursday 0.4

Welcome to this week's Crapwatch. Whatever you do, don't have nightmares.

Wednesday 8th August:
1am Watery, blood
6.25am Watery, blood
8.05am Watery, light blood
10.10am Loose stool
6.45pm Loose stool


Medication:
6 x Mesalazine 400mg
5 x Prednisolone 5mg
2 x Asacol Mesalazine foam enemas
1 x Ferrous Sulphate 200mg
2 x Calcium Carb 1.25g

Comments:
Best day for a week or so. Worse in morning. Skin still bad, and my big toe joint aches. Weird.

Don't be afraid of your freedom!

In the dry ice and strobe lights my hair is pulsating like a damp, hairy jellyfish, my fringe bobbing over my eyes, hopelessly just off the beat of the music. My friends and I have formed a loose, baggy circle on the packed dance floor. The circle shifts and changes shape like a smoke ring, but never breaks. Our bodies jerk and bend and groove as one, all teenage knees and elbows. Everything tastes a bit of cider. I make my lips into a blissed out ‘O’ shape just like I’ve seen Ian Brown do on Top of the Pops. It’s 1990 and we’re doing our self-conscious best to try and look cool and not slip on the booze sodden floor, whilst dancing to this. The lyrics didn’t especially mean anything to me, I found it all a bit cheesy, to be honest. It did kind of sum up the spirit of how I felt at the time though, albeit in a slightly clichéd way. I did feel free to do what I wanted (any old time, ahem). Life stretched before me like a freshly concreted driveway, just waiting for my size 11 Converse-booted feet to leave their imprints all over it. And I’ve been happily running amok on that concrete pretty much ever since. Don’t get me wrong, I’m no travelling minstrel, I don’t carry my belongings over my shoulder in a spotted handkerchief bundle tied to a stick and my home isn’t wherever I lay my hat. I’m not the Littlest Hobo on two legs. But I have spent most of my adult life doing exactly as I please. Call it a life in pursuit of responsible irresponsibility. So my ulcerative colitis has thrown bit of a spanner in the works. It’s taking liberties with my liberty. And I don’t like it. I want to be able to jet off at the drop of a hat; I want to be able to say yes to things, an unconditional big fat affirmative yes. I want to go on the rides at fairgrounds without having to worry about needing to ‘go’ and not being able to get off. I want to go for long walks in the countryside without fretting about where the nearest conveniences are. Hell, I want to be free to go to a dingy indie club any old time and not care that the cubicles in the toilets haven’t been cleaned since 1990.

0.010% below the what?

I’m looking to buy a flat at the moment, so I’m having to learn a new language: financial gobbledegook. Fixed rates, variable rates, arrangement fees, booking fees, chocolate turtle wax tax; it’s all foreign to me. Cats and dogs obviously can’t understand the meanings of words, but respond instead to tone and pitch. In a similar fashion I stumble through meetings with mortgage advisors. Depending on how they deliver ‘0.010% below the Bank of England base rate currently 5.750%’ I might frown or I may raise my eyebrows in mock surprise. When in doubt I frown with one eyebrow and raise the other, which I hope makes me appear knowledgeable, rather than tipsy. And then, right in the middle of this maelstrom of confusion they really twist the knife. Shoving a piece of official looking A4 under my nose, the mortgage advisor asks, “Do you have any of these medical conditions?” Up until recently I would have puffed my chest out like a caricature of an Italian-American and dismissed the question with a nonchalant flick of the hand. That was up until I was diagnosed with ulcerative colitis. Now I push my glasses up the bridge of my nose and pore over the list more in the style of Ebenezer Scrooge. It’s at times like these that it really hits home that I have an illness that is permanent. UC is as much part of me now as having green eyes. Perhaps I’ve been subconsciously slow on the uptake, deliberately refusing to acknowledge that some things are going to be a bit different from now on. But it is starting to sink in. The penny, after much teetering, has finally dropped. Every day I discover new ways in which UC impacts on my life. Some are pretty insignificant, like I often now wear two pairs of underwear if I’m wearing light coloured trousers. And of course I have to hold my hands up and confess to mortgage advisors that all is not well in downtown Tum City. On a more positive note my knowledge of London’s public conveniences is second only to George Michael’s. Rather inconsequentially I wouldn’t be allowed to fight for Queen and country (bummer, eh?) It’s all new, and whilst not exactly exciting, it certainly is an experience. And like buying a flat, ulcerative colitis also comes with its own snazzy language to learn: gut gobbledegook. Flare-ups, IBS, proctitis, remissions…I’m learning.

The Bogg Rolls (1976 – 78)

Isn't it strange what you think about to pass the time on the loo? Like inventing toilet paper themed garage bands from the 70's, including their complete back catalogue. Or is that just me?

Vocals/Guitar: 4Pac
Bass: Andy Rex
Guitar: Val Vett
Drums: Charmin’ Al O'Fearah

Formed in the Fall of 1976 in Shittaus, Nebraska by school friends 4Pac and Andy Rex, The Bogg Rolls quickly built a reputation for raw, high energy live shows. Audiences were blown away by their fusion of power pop chords and country and often pelted the stage with toilet rolls – thought to be the inspiration behind punk audiences spitting in the UK. Sony A&R man, Mick Nouvelle was sufficiently impressed at a Shittaus homecoming gig, and drew up a contract there and then on a sheet of toilet paper. Nouvelle’s enthusiasm wasn’t to be shared and The Bogg Rolls were largely ignored by the record buying public. It wasn’t until the gospel tinged single Soft (And Strong) that they made any impact on the charts, reaching Number 37 in the last week of February 1977. Keen to capitalise on the success of Soft (And Strong) they rushed out live favourite Don’t Run Out On Me Now, which proved too much of a departure for fans of its sugar-coated predecessor. Pressure from Sony resulted in their only album, the prophetically titled Down the Pan. Of the eleven tracks, only the saccharine, Andy Rex penned The Last Sheet charted, climbing to Number 56 in the August of 1977. Disheartened and disillusioned by public apathy 4Pac released a series of vitriolic solo singles through his own label, Loose Stools. These included Everything is Poo and My Shite Life. Alienated from fans and the band he formed, 4Pac put a double barrelled shotgun to his anus and took his own life on 2nd May, 1978. A suicide note written on a double-ply tissue was found nearby, but it had absorbed so much blood the writing was rendered illegible. Without their inspirational leader The Bogg Rolls disbanded and drifted into obscurity. Commenting from his home in 1990, Andy Rex said, “If only we’d had a number two things might have worked out different.”

Wednesday's diary on a Thursday 0.3

Let's see what the little black Molskine book has for us this week.

Wednesday 1st August:
5am Watery, blood
6.30am Watery, blood
7.30am Watery, blood
8.40am Loose stool, light blood
11am Loose stool
1.45pm Loose stool
8.10pm Loose stool

Medication:
6 x Mesalazine 400mg
6x Prednisolone 5mg
1 x Ferrous Sulphate 200mg
2 x Calcium Carb 1.25g

Comments:
Skin bad, mouth ulcers, tired, feels like I'm going backwards, not forwards. Had reduced the Prednisolone from 20mg to 15mg on Monday, but took the decision late morning today to up it to 30mg again. Probably very naughty of me. Seeing the doc Friday though.

A rude awakening

It enters the bedroom without a sound, brushing the shadows, enjoying the delicious voyeurism of the undetected, wound tight, feeding off the itchy hot suffocating tension, watching and waiting. It slips onto the bed, sensitive to the warmth of the occupant, careful not to reveal itself just yet. A finger unfurls, its long nail closed over the tip like a shell. It flexes, almost ready now. Rudely the finger pokes deep into the ear of the person in the bed. That ear belongs to me and I awake with an “Oi!” The finger retreats before I can swat it away. I feel a weight pressing down on my chest. Tilting my head forward I make out a disembodied hand. It begins to waggle its index finger disapprovingly at me, like a snake poised to strike, then it jabs me hard. “You really thought you could get away with it, didn’t you? The Guinness, the sambucas, the carousing, the gallivanting, the merry making, the revelry, the raucousness, the rock and roll, the japes, the gags, the snatched shuteye, the sunrises, the heady brew, the quick ones, the ones for the road and the absent friends, the bright lights, the illicit neon, the doners, the extra chili, the stag nights, the club nights, the backstage passes, the snifters, the chasers, the ones on the house and the ones back at home, the Dr Peppers*, the-” “You know about the Dr Peppers?” “I know all about the Dr Peppers. And you seriously imagined you’d get away scot free, laddie? How sorely mistaken you were, how sorely mistaken you were. You brought it all on yourself, no one to blame but you. It’s payback time.” “Who are you?” “I’m The Finger of Blame.” “Bit literal, isn’t it?” “Don’t blame me, I didn’t come up with it, you did.” The hand fades before me, those final chiding words echoing in my mind. The Finger of Blame is a figment of my imagination, the bastard offspring of a niggling doubt that somehow, in some way this whole ulcerative colitis business is my fault. I pull the covers up around my ears and try to let myself sleep…let myself off the hook for another night.

*Dr Pepper: fill a large glass with half lager and half Coca-Cola, drop in a shot glass of amaretto and down it in one.