Thursday, April 30, 2009

Wednesday's diary on a Thursday 5.8

If ever I get disheartened with having a colostomy bag I only have to look back in my diary to see just how horrible things were before my operation. Compare this week from early February with today's WDOAT. I know which one I prefer.
Wednesday 29nd April:
7am Change bag
2.50pm Change bag

Breakfast 6 x mesalazine 400mg, 2 x calcichew
Dinner 4 x azathioprine 50mg
Bedtime 6 x mesalazine 400mg

Nothing untoward to report. Sticking with the calcichew for the time being. Can't hurt.

Tuesday, April 28, 2009

Papa's got a brand new colostomy bag

There are 13 tracks available in the iTunes Store with colostomy in the title. In the history of popular music gastric surgery is a subject songwriters have largely ignored in favour of perhaps more universal themes, like love and sex. So it’s good to see there are a few artists out there who are willing to tackle material that is not so obviously commercial. These are musicians who aren’t afraid to zig when the rest of the world zags. These are sonic pioneers at the coalface of a thus far unmined seam. These are visionaries who can see lyrical potential where others just see a surgical procedure. Lennon, Dylan, Cohen, Drake, Buckley, Barlow, yes, they’ve written a few decent songs, yes they’ve pushed the boundaries and broke new ground, but in my opinion they all fall short of greatness, they are not worthy of the genius tag, because for my money only a true genius would write a song about a colostomy bag. And that, pop fans, is where Lennon, Dylan, Cohen, Drake, Buckley and Barlow messed up. Bloody idiots. Especially that Buckley.

So in Jools Holland shouty stylee may I present to you the great and underrated Bargain Music with their stone cold classic, Colostomy Bag.

Sunday, April 26, 2009

The world stops for no man

Gordon Brown still does that weird gulping mouth thing. DFS are still having a sale. Simon Cowell’s teeth can still be seen from space. It’s been 8 weeks since my operation and the world trundles on in much the same way. There are still engineering works on the Victoria Line. The Sun still rises in the east. At work they still spell my surname wrong. It’s been 8 weeks since my operation and the world trundles on in much the same way. Geri Halliwell is still 32. Safety razors still cut people. Paper still beats stone. £2 a week is still all it takes to make a difference to an African child’s life. Bath water still goes down the plughole the same way. It’s been 8 weeks since my operation and the world trundles on in much the same way. i still goes before e except after c. I still want to punch people who answer straightforward questions with “Is the Pope Catholic?” instead of just saying yes. It’s still legal for London cabbies to urinate against the rear wheel of their cab. It still does exactly what it says on the tin. Cliff Richard is still a bachelor boy. It’s been 8 weeks since my operation and the world trundles on in much the same way. Gordon Brown. Weird. Mouth. DFS. Sale. Simon Cowell. Teeth. Moon. Engineering works. Victoria Line. Sun. East. Surname. Wrong. Halliwell. 32. Safety razors. Cut. £2. Child. Life. Water. Plughole. i. e. c. Pope. Catholic. Cab. Driver. Urinate. Wheel. Does. Exactly. Says. Tin. Cliff. Bachelor. It’s been 8 weeks since my operation and the world trundles on in much the same way. Stop! The world might be trundling on in much the same way, but my world, my little world, the one I occupy has been turned completely on its head. Things have changed in my world. Things aren’t the same any more. The way I use the toilet is different. The way I dress myself is different. The way I sleep is different. The way I see myself is different. The way I feel about myself is different. It’s been 8 weeks since my operation. The world trundles on in much the same way. And I’ll trundle along with it. The same, but a little bit different.

Thursday, April 23, 2009

Wednesday's diary on St George's Day 5.7

Happy St George's Day.
Wednesday 22nd April:
7am Change bag
1.30pm Change bag
4.45pm Change bag

Breakfast 6 x mesalazine 400mg, 2 x calcichew
Dinner 4 x azathioprine 50mg
Bedtime 6 x mesalazine 400mg

Got a few mouth ulcers. Other than that I haven't noticed any bodily malfunctions since quitting the prednisolone.

Monday, April 20, 2009

Nice lunchbox

When I was at school my lunchbox usually contained Dairylea cheese spread sandwiches, a bag of something like Smiths Square Crisps and maybe a Trio bar. It was the 1980’s. Normal food wasn’t bad for you then. These days if a kid took a lunch like mine into school, social services would have him put into care before he could even p-p-p-pick up a Penguin. How times have changed. The lunchboxes of middle class schoolchildren are now filled with granary breads, muesli bars, raw carrots, fresh and dried fruit and homemade smoothies. (No wonder they’ve all turned to crack.) And the contents of my lunchbox have changed, too. Today my little Tupperware box is used to hold all my colostomy kit. Neatly contained inside is everything I need to change my bag whilst I’m on the go. The people who supply my bags did send me a complimentary purpose made wallet to keep everything in, but I thought it was a bit naff. I prefer my sarnie box.

(Top row left to right)

No Sting Skin Barrier Wipes.
These are fancy wet wipes that protect the skin from solid and liquid wastes, enzymes and adhesives. They make everything nice and clean.

No Sting Medical Adhesive Remover. The adhesive backing on the stoma bag flange (the bit that sticks to your stomach) is really, really sticky, so to help remove it without taking your skin off, you use this spray. It works like magic.

Mirror. So you can see what you’re doing properly.

Lunchbox. A strong, waterproof, easy to clean, compact container.

(Next row)

Disposable bags. For all your rubbish, including the used stoma bag. Once you’ve finished, carefully tie a knot in the bag and chuck it in the bin.

Peg. No, it’s not for your nose. It’s to hold your shirt up out of the way. Clever, eh?

Protective Powder with Aloe Vera.
You dab this around the edge of the stoma. Not exactly sure what it does but it’s got aloe vera in it, so it must be good. It also looks remarkably like cocaine, and as I keep leaving traces of it on the porcelain at work it’s only a matter of time before some cheeky thrill seeker tries a sniff. I’m waiting to hear the screams.

(Next row down)

Stoma template. This is to ensure I always cut out the right size hole in the stoma bag flange.

For cutting the hole. Obviously.

Pen. For tracing the hole onto the flange using the template. It’s all very Blue Peter this part.

Stoma bags. Just to be safe I always carry more bags than I could possibly need. I’ve usually got enough to see me through a nuclear winter, should the worst happen.

Friday, April 17, 2009

Don't like the look of yours much

I’ve always had concerns that my stoma looks a bit rough round the edges. Now I don’t suppose anyone’s stoma would win a beauty contest, but I’ve got to confess mine is an absolute minger. Seriously, it’s a munter. I mean if it didn’t already have a bag over its ugly mug most of the time, you’d have to put one over it. So on Wednesday I asked my surgeon if all stomas looked like mine or was mine a bit funny looking, and without hesitation he confirmed my worst fears; mine is indeed a bit funny looking. Apparently this is because there is still disease in the section of the colon forming the stoma. This means the skin around the stoma is bobbly and uneven. Which could be why my bags leak. It’s always going to be difficult to get a perfect seal on such a lumpy surface (unlike an ileostomy stoma which sticks out, a colostomy stoma is more flat to the stomach). Imagine laying carpet on cobbles, there will always be gaps. It wasn’t all bad news though; my surgeon did say that if I can stay off the steroids and in remission, he’d reconnect everything back up before Christmas. So in two months they’re going to have a good old nosey round my innards with the cameras and presuming all is well we can start to think about a date for the operation. Because I still have much of my large colon left there’s always the danger the ulcerative colitis can come back at any time. But it might not, the drugs might keep it in check. No one knows. The surgeon doesn’t think it’s necessary to take my entire large colon out if it’s healthy. This does mean if things get really bad again at a later date, I’ll have to have further surgery. It may never come to that. Best to think positively I say. So, after I left the surgeon I went to see the stoma nurse. I thought I’d get a second opinion on my ugly mate. Sadly it was exactly the same as the first; my stoma is a bit funny looking. Oh well, looks aren’t everything, are they? It’s what’s inside that counts. Okay, so in this case that’s mostly poo. But so what if it’s not as good looking as all the other stomas. Who cares if it’s a poor, misshapen thing. Remember the ugly duckling that turned into a swan. Well with a bit of luck, in a few months my ugly stoma will turn into a scar.

An artist's impression of my 'funny looking' stoma.

Thursday, April 16, 2009

Wednesday's diary on a Thursday 5.6

Strewth, I went through more bags than Tescos yesterday. I saw my Italian surgeon and the stoma nurse, which meant I had to change bags twice. And I was also experimenting with a couple of types of bags and using the washers again. Obviously without much success. Oh well.
Wednesday 15th April:
7.30am Change bag
11.45am Change bag
12.15pm Change bag
4pm Change bag
9pm Change bag
9.30pm Change bag

Breakfast 6 x mesalazine 400mg, 2 x calcichew
Dinner 4 x azathioprine 50mg
Bedtime 6 x mesalazine 400mg

No more prednisolone, no more antibiotics.

Wednesday, April 15, 2009

The poll is back

When gas is released into my ostomy bag it sometimes makes a noise. It doesn’t sound like a fart; it’s more a gurgly, escaping air kind of thing. Sort of like a disappointing Whoopee Cushion that doesn’t work properly. It is loud enough for other people to hear though. I don’t mind so much when I’m with friends and family, but I am dreading it happening in other situations. I’ve actually stopped using the lift at work. Travelling in a lift with someone can be awkward enough without the pfft-pfft-pfft-wheeze of my bag adding to the tension. What I’m most worried about is meetings. Imagine if at some crucial point in the presentation my old windbag pipes up with Scotland the Brave. My palms start sweating just thinking about it. I’m not sure how I’d handle that situation. Do you say something? Pretend you didn’t hear anything? Tricky one, isn’t it? Which is why I’ve put it to the poll. It should be to the right of your screen. I’m interested to see what you’d do.

Monday, April 13, 2009

Maybe they could erect a red fence around me and have a go at sorting out my leaks

Trouble on the underground

If you’re travelling on the London Underground this summer and you find yourself sitting opposite an agitated, sweaty looking bloke who keeps fiddling with something stuck to his body under his t-shirt, whilst muttering incomprehensively to himself, then it may not be a terrorist, it could be me. Going on the tube with an ostomy bag is fraught with danger. I find myself constantly checking my bag. A hot, confined space like a tube carriage is the last place you want to spring a leak. The other day I was on my way home when I caught the all too familiar whiff of poo. It smelt like the train had suddenly taken a diversion through a sewer. I froze. There was nothing I could do. The two ladies sitting next to me started jabbering away in Polish. I didn’t need a translator to know what they were talking about. The fact that one of them was holding her nose (the international sign for ‘bejeezus, what a pong!’) gave it away somewhat. They hurried off at the next stop. Other passengers started fanning the air with their London Lites, their beady, accusatory eyes scanning the carriage for the perpetrator. And there I am sitting slap-bang in the middle of them reeking to high heaven of eau de plop. It’s not a comfortable experience. Now I know what it must have been like for Darren Courtney, the smelly kid that no one would sit next to at school. My stupid bag has turned me into Darren ‘Hong Kong Pooey’ Courtney. Brilliant. I could try strapping a load of Air Wick air fresheners to my body? Hmmm, maybe that will make me look even more like a terrorist?

"Don't worry, I've got mine very close to me."

Saturday, April 11, 2009

Don't look now

Forewarned is forearmed.
Proverb. If you know about something in advance you can prepare for it.

An oncoming car flashing its lights to alert you to a police car up ahead; a colleague advising you never to present anything to your boss after lunch because he’ll be drunk; a girlfriend warning you she’s allergic to flowers. Forewarned is forearmed. Be prepared. Knowledge is power. Forewarned is forearmed. Fantastic. But there are times when it’s better not to know what’s coming up. Like when you’re in hospital. In my opinion there’s no advantage in knowing what an epidural needle looks like. Do you really need to know how big it is and where exactly they’re going to put it? Personally I don’t. What you don’t know can’t hurt you is my motto. When I’m in hospital I have a simple set of rules I stick to: don’t look, don’t listen, don’t ask. I’ve had a catheter stuck up my winkie, but I couldn’t describe it to you if my life depended on it. I haven’t the faintest idea how big the tube is, how far inside it goes, or where it goes when it’s up there, because I wasn’t daft enough to look and I didn’t ask. So I don’t have to worry about the next time I have one fitted because I haven’t got anything to focus my worry on. I’ve got no reference point; it could be a length of garden hose or made of cut crystal for all I know. Ignorance is bliss. I never look when they take my blood either. There are some things my eyes just don’t need to see. What good does it do you knowing? Why torture yourself? If I’d known in advance they were planning to try and give me an epidural I’d have done a runner long before I got to theatre. I’d be on a beach in South America with a new identity right now. Maybe this all sounds a bit cowardly, but we’ve all got our own way of dealing with things, we all have our own survival mechanisms. And my particular game plan is to avoid knowing anything. There is one exception though, if the anaesthetist is related to Harold Shipman, I’d quite like to know up front.

Thursday, April 9, 2009

Wednesday's diary on a Thursday 5.5

Look what I did yesterday.
Wednesday 8th April:
4am Empty bag
7.30am Empty bag
9.45am Empty bag
3pm Change bag

Breakfast 6 x mesalazine 400mg, 1 x prednisolone 5mg, 2 x calcichew, 2 x antibiotics
Dinner 4 x azathioprine 50mg, 2 x antibiotics
Bedtime 6 x mesalazine 400mg, 2 x antibiotics

One of my antibiotics is round, the other is oblong, and if you don't swallow them quick they leave a nasty taste in your mouth like hairspray. Yes, I know what hairspray tastes like.

Tuesday, April 7, 2009

The not so great escape

Tuesday 31st March to Friday 3rd April

There is no rousing music. No crowd gathers to greet me. No one throws me a baseball mitt. But as I walk back into Primrose Ward I do, just for a moment, feel a bit like Steve McQueen in The Great Escape. And like the Cooler King I even end up in the same old room. The very same four walls I escaped from less than a month ago enclose me again. Standing between me and freedom is a nasty pus-filled infection. Give me German guards any day; at least they might give you a bit of chocolate.

A cannula is inserted into the back of my hand and a line feeds the clear icy liquid into my veins. I shiver and pull the blanket up to my chin. I am asleep before the last drop of antibiotics filters into my bloodstream.

I have my usual hospital breakfast; cornflakes with hot milk and sugar, slice of brown toast and a cup of tea with one sugar. For some reason I have a sweeter tooth when I’m in hospital. My Italian surgeon arrives with an entourage similar in size to President Obama’s. Incredibly they all manage to squeeze into my room. The surgeon asks to see my stoma, which means taking my bag off. With the bag removed I suddenly feel very naked and embarrassed, vulnerable even. A couple of the junior doctors shuffle round to get a better look. My head buzzes. It’s an odd sensation having a roomful of people looking at a hole in your belly. I stare straight ahead out the window and pray my breakfast doesn’t decide to drop out my stoma now. The surgeon gives the inflamed area a cursory prod and hands me a dressing to hold over the stoma. I feel more comfortable covered up. It’s decided I am to remain in hospital until the antibiotics have cleared up the infection. If I’m lucky I might be out Sunday.

Time in Primrose Ward is measured not by the tick-tick of the clock, but the drip-drip of the antibiotics. The swelling has reduced considerably and I no longer feel headachy. I’m on the mend. But this is one stay in hospital too many for my patience. Nothing I do can relieve the boredom. I just want to go home.

“I’ve had a conversation with the pathologists and they say you have ulcerative colitis,” says the Italian surgeon. “Yeah?” “Yes, it is ulcerative colitis for sure, not Crohn's” he confirms with the tiniest hint of a smile. Well, well, well, what a turn up, surgery, pathology and gastroenterology all in agreement. The surgeon continues to talk but I am no longer listening. He may as well be singing this for all I care. I lean back in my hospital chair, simply happy in the knowledge that I have ulcerative colitis. Again.

It’s Friday and I’m told I can go home. As I leave Whipps Cross for a third time I think back on the last few weeks and it occurs to me that Crohn’s and UC are the Ant and Dec of bowel diseases – a pain in the arse and really hard to tell which is which.

Familiar faces, familiar places

Monday 30th March

My GP is examining the inflamed area to the left of my stoma. The inflamed area to the left of my stoma is new. It’s red and angry looking, the skin taut and shiny, solid to the touch. It reminds me of the old cricket ball my dad kept under the stairs when I was growing up. “Okay, you can do yourself up and take a seat,” the doctor says, washing her hands. “I’m going to make you an appointment to see a consultant at A&E.” A&E. That means Whipps Cross. Hospital. Again. “You might have an abscess, which would explain why you’re feeling so bad.” The doctor makes a phone call and an appointment is made for 4pm the next day. A&E. Whipps Cross. Again. Once more unto the breach, dear friends…

Tuesday 31st March

The screams are coming from a few cubicles down. I can’t imagine the level of pain that could cause such a full throttled scream. This is what it must have been like in operating theatres before the invention of anaesthetic. I bury my nose in Q magazine and pop another gummy bear into my mouth. I’m waiting in cubicle 22 in the A&E department of Whipps Cross. I’ve been here about 4 hours. Earlier, if my memory serves me correctly, I saw the consultant doctor who confirmed I do have an abscess, “You’re going to have to come into hospital.” I let out a sigh so big my toes deflate. “I’m sorry, I can’t just send you home with antibiotics, these things can get quite nasty. Come on let’s get you registered.” Naturally a girl with a cascade of peroxide Dolly Parton curls and a broad Texas accent registers me. Whipps Cross never fails to disappoint. I expect the porter taking me to the ward will be JR Ewing. So I’m placed in cubicle 22 and told to wait. Eventually the familiar face of one of the surgical team appears around the curtain. He examines the swollen area around my stoma. “You’ve got a localised abscess here, which is going to need draining.” Ouch. “This is more consistent with Crohn’s, you know” he adds, looking up to check my reaction. I’m prepared, “I saw gastroenterology on Friday and they said it was definitely UC.” “Well if they could see this I don’t think they’d have any doubts. It’s Crohn’s.” The doctor says he’ll see me tomorrow and I wait to find out what ward I’m on. So it’s Crohn’s again? Crohn’s, UC, Crohn’s, UC, what’s it to be? Can’t we just pick one and stick with it? At least for a few days. I’m angrily biting the heads off gummy bears when I’m told I’m going to Primrose Ward. Ah, my old stomping ground. This is to be my third stay in hospital in 3 months. I wonder if the NHS has a loyalty card scheme?

Monday, April 6, 2009

Under the, erm, weather

Saturday 28th March & Sunday 29th March

What a difference 24 hours can make. Yesterday I was swanning round Whipps Cross, practically high-fiving the consultants in celebration of my speedy recovery, and just a day later I feel like the hand of death has slapped me sharply about the back of the head several times before slipping down my throat to deliver a well executed Chinese burn to what little is left of my large colon. Okay, that may be a slight exaggeration, but in my defence, I am only a man. Anyway, I don’t feel well all weekend.

The symptoms:
Yucky fluey feeling
Abdominal pains

Possible cause:
UC flare up
Steroid withdrawal
The weather (yes, the weather, not entirely sure how an overcast sky can cause stomach ache, but the weather was mooted at one point by my girlfriend.)

At bedtime on Sunday I kiss my girlfriend goodnight and lay my pounding head on the pillow. Then for some reason my tired mind turns to Spike Milligan’s headstone, which famously is inscribed with the epitaph: I told you I was ill. After a few moments mulling this over I feel compelled to say something, “You know, if anything happens to me in the night, then I don’t think it’s the weather, okay.” Out of the darkness a response, “Goodnight, Martin.” It’s then I decide if I’m still alive in the morning, sorry, still feeling the same in the morning I’ll make an appointment to see my GP. I give it another go, “I was just saying that if anyth…” “Goodnight.”

Sunday, April 5, 2009

Looking good

Okay, so this is what happened...

Friday 27th March
A flicker of recognition lights up the face of the young female doctor, “Oh hello, how are you? You look really well.” We’re standing in the queue at the hospital shop. “I’m good, thanks, feeling much better now,” I reply, “Just come in to see the consultant.” It’s strange how many people I know at Whipps Cross these days. I’m on nodding terms with far too many doctors and nurses for someone not on the NHS payroll. “It’s always nice for us to see patients looking so well again,” she says, filling a slightly awkward gap in the conversation. “Yeah, I wasn’t exactly at my best before,” I admit, thinking back to the Primate of Primrose Ward look that I was sporting the last time we met. The doctor smiles politely, no doubt also thinking back to the Primate of Primrose Ward look that I was sporting the last time we met. The two shopkeepers behind the counter beckon us forward simultaneously, providing welcome respite from the pressure of enforced conversation. We both finish at the same time and leave the shop. “Well, nice to see you, bye,” says the doctor as she turns right. “Um, yes, bye,” and I begin to follow her before realising I’m going the wrong way. Like some bumbling Englishman in a tired cliché-ridden Richard Curtis film I try to act all casual and turn on my heels and head back the way I came. I just catch the doctor looking over her shoulder with a slightly confused look on her face. Her step quickens.

“You’re looking much better than I thought you would,” beams my consultant. I could get used to all these compliments. I take a seat. “Yeah, I’m feeling alright, getting back to my old self.” It’s exactly 4 weeks since surgery and this is my first appointment with the gastroenterologist. We exchange a few brief pleasantries then get down to business. I recap on my meeting with the surgeon earlier in the week and explain how he still believes I have Crohn’s. This is met with a smirk and much shaking of the head. “You’ve definitely got ulcerative colitis. Every test we’ve ever done shows ulcerative colitis,” before adding, “And we are gastroenterologists, we deal with these things day in day out.” I really expect him to finish with ‘so there!’ but he doesn’t, which is disappointing. Witnessing an intelligent and well-respected member of the medical profession resort to playground language would inject some silliness into a fairly mundane 10 minutes of my life. We review my medication. We lay out a plan for blood tests every 3 months. The senior consultant pops in, we shake hands, and he too remarks on how well I look. He agrees that I definitely have ulcerative colitis. UC it is then. Great. UC I kind of understand. UC doesn’t feel so much like the short straw to me. UC I can deal with. Plus it means I don’t have to change the tagline at the top of this blog to ‘Life with Crohn’s…possibly…depending on who you talk to.’ Finally it’s decided I should come back in 6 weeks and we’ll discuss next steps regarding surgery. I walk out of there tall and proud. The Primate of Primrose Ward has evolved.

Saturday, April 4, 2009

The missing week

Apologies for the lack of posts recently, I had to go back into hospital for a few days. Still feeling a bit tired, and not quite blog-fit, but I will explain everything in due course.