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

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

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

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.

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.

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

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

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

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.

Scissors. 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.

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.

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

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

Comments:
No more prednisolone, no more antibiotics.