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.

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.

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."