Monthly blood diary

A month ago I started to keep a record of blood in my daily back passage movement. This is not the same as the output from my stoma into my colostomy bag. There’s never any blood in that. This is purely the stuff that comes out my rectum, and quite often has some blood in it.

The idea of keeping the blood diary is to see if the relaxation therapies I’m doing are having a noticeable effect on my UC. As you'll see below it all started very promisingly, but lately it’s become more hit and miss. The ‘no blood’ days are winning, but only just.

It’s worth clarifying, that when I say there is blood, it’s often extremely light. Just enough to turn the toilet paper pinkish. But I’m being very strict, there is either blood or there isn’t. Simple as that.

Unfortunately I don’t have any record of how often I had blood before I started the therapies. I think it was heavier and more frequent than now. The only way to see if things are improving is to keep up the blood diary and see how it looks in a month. Hopefully by 7th November there will be fewer blood days.

As I’ve mentioned in my weekly WDOATs, I definitely believe the relaxation therapies are having a positive effect on how I feel. And considering I worked 29 days out of the last 31 and a couple of weeks ago my girlfriend moved to Germany to start a new job, I think I’m remarkably chipper. I’m not sure that would be the case without the help of the therapies.

Speaking of which, you’ll also note that about half way through the month I thought it might be worthwhile keeping track of which ones I’ve been doing. There are four: Guy Cohen’s relaxation session, Guy’s Rewind Technique, Geoffrey Glassborow’s relaxation session and Paul McKenna’s Control Stress session.

Until we have something to compare this month’s blood diary to it doesn’t really tell us much. But if we were to look on the positive side of things – and that’s kind of how I like to think these days – there have been more ‘no blood’ days than ‘blood’ days. Which is a very good thing.

7.9.09 No blood
8.9.09 No blood
9.9.09 No blood
10.9.09 Blood
11.9.09 No blood
12.9.09 No blood
13.9.09 No blood
14.9.09 No blood
15.9.09 Blood
16.9.09 Blood
17.9.09 Blood
18.9.09 Blood
19.9.09 No blood
20.9.09 No blood
21.9.09 No blood
22.9.09 Blood McKenna/Geoffrey/Rewind
23.9.09 Blood McKenna
24.9.09 Blood McKenna
25.9.09 No blood Geoffrey/McKenna/Rewind
26.9.09 No blood Guy
27.9.09 Blood McKenna/Rewind/Geoffrey
28.9.09 No blood McKenna/Rewind/Guy
29.9.09 Blood McKenna/Rewind/Geoffrey
30.9.09 Blood McKenna/McKenna/Rewind/Guy
1.10.09 No blood McKenna
2.10.09 No blood McKenna
3.10.09 Blood McKenna/Geoffrey/Rewind
4.10.09 Blood McKenna/Guy
5.10.09 Blood McKenna
6.10.09 No blood McKenna/Rewind
7.10.09 Blood McKenna/Rewind/Geoffrey/Guy

F.R.I.E.N.D.S

Last week I bumped into an old school friend on the tube. He was down working in London for the day.

We don’t see each other very often, so I decided to get off at Euston with him and go for a quick drink before he caught his train.

As we walk into the station bar he asks me what I’m drinking. When I say I want a coffee he looks a little taken aback. Over the years we’ve walked into hundreds of bars together, and this is the first time he’s ever heard me order a coffee.

My friend picks up his bottle of beer and we take a seat at one of the high tables. And as he takes his first sip, he’s still looking at me a bit funny, clearly wondering why I’m not joining him with a beer.

You see my friend doesn’t know anything about my UC or my colostomy bag. If we see each other once a year we’re lucky. When we have got together we’ve talked about other stuff. Despite waffling on about my illness on this blog, it’s not always something I talk about in day-to-day life.

But as there’s just the two of us, I figure now is a good time to tell my friend why I’m not drinking. And even though our paths rarely cross these days, we’re still very good mates. We go way back.

When we were at school we both had part-time jobs at Iceland. I collected trolleys and a perk of the job was getting to pocket the fifty pence pieces lazy shoppers left in the trolley coin lock. If I’d had a good day we could afford a scallop each from the chippy on the way home.

We both moved to London at around the same time. We lived in bedsits in the same street, both unemployed. That year we scraped enough money together for a summer ‘holiday’ which was actually just a night sharing a room in a faded, backstreet B&B in Brighton.

When we got jobs we splashed out a bit and spent Christmas and New Year in New York together.

For a couple of years in our 20’s we ran a ramshackle football team of misfits, made up of people who had barely kicked a ball before. One of our best players was a girl. It was the best laugh ever.

We’re proper old muckers. He’d probably be slightly miffed if I didn’t tell him about my UC. He should know, really.

So my friend listens intently as I take a deep breath and explain about how I got ill and ended up with a colostomy bag. He looks very thoughtful, and even pulls out a pen and asks me to spell ulcerative colitis. Blimey, I think to myself, he’s taking this very seriously.

And then he says, “So the colostomy bag is on the inside?”

“No, it’s on the outside,” I reply, giving him a quick flash of it under the table.

“And you can’t drink?”

“I can drink, but I don’t.”

“Hmm-hmm,” he murmurs, nodding his head, quietly assessing everything I tell him.

“I try to avoid fizzy stuff,” I continue, “Things with bubbles in tend to make my bag blow up.”

My friend mulls this over for a second.

Then he asks, completely straight-faced, “Can you eat Aeros?”

That is the single best question I’ve had from anyone since becoming an ostomate. And that is also why we’re still best mates.

Exquisite bodies

Recently I discovered the Wellcome Collection on London’s Euston Road. Sir Henry Wellcome built this impressive building in 1932 to house his vast collection of medical related oddments, containing everything from early surgical apparatus to shrunken heads. Henry Wellcome clearly had an eye for the bizarre. I found the male chastity rings particularly eye-watering. As well as its permanent and temporary exhibitions, which are all free, the Wellcome Collection also has a great café and bookshop. It was today, whilst in the café that I noticed the sign for a new exhibition called ‘Exquisite Bodies’. I was just reading the subhead below, and had got as far as ‘Or the curious and grotesque story of…’ when right on cue, well known horse impersonator, Janet Street-Porter cantered into my line of vision blocking my view and giving the sentence a rather apt visual ending. Actually, Janet is quite an impressive woman in the flesh. She must be at least 12 hands high. Seeing the exhibition sign and marveling at the stature of Janet Street-Porter started me thinking about my own exquisite body. And more specifically how the addition of a colostomy bag to my abdomen has made me feel about it. Perhaps surprisingly I’m more or less as happy with my body now as I was before becoming an ostomate. You would think that having a mitten of shit swinging from my belly would have a devastating effect on my self-image, but it hasn’t really. Maybe this is because I’m a hairy-arsed man. I think there’s certainly less pressure on us blokes to look a certain way. I’ve often thought it must be harder for girls who have ostomy bags. Particularly young girls. So as I sat in the Wellcome Collection café, staring at Janet Street-Porter and thinking about all this body image stuff, I was suddenly inspired to share with you a blog I discovered yesterday, which is written by a young lady in Canada, who had an ostomy when she was just 13. Her honesty and bravery will undoubtedly help thousands and thousands of ostomates feel more comfortable with their bodies. This is Jessica.

What I get up to in the shower rooms at work

Take shampoo and conditioner into the shower? Not me, I just take my laptop and headphones and go. In the basement at work there are two small shower rooms and recently I’ve been using them to do my relaxation therapies. The slatted wooden bench that runs along one wall is a little uncomfortable and the smell of Imperial Leather slightly overpowering, but once I’ve locked the door, turned off the light and put my headphones on, I’m perfectly cocooned from the outside world. It’s important to be in a place where I know I won’t be disturbed. The background noise of a colleague repeatedly ramming the paper tray into the photocopier’s innards, whilst swearing like a Tourettic sailor, is not going to help me achieve a state of deep relaxation. It’s hard to imagine myself floating and swaying at the best of times, without being interrupted by phones going off and members of the management team screaming for more soy chai latte. The shower room gives me all the peace and quiet I need. Of course I could just wait until I get home, but it’s becoming clear that to do the therapies properly takes time. You have to commit yourself to it. And with everything else going on in your life, it’s not always easy to find an hour or so to spend flat on your back in a dreamlike state. So now every day at work, usually around lunchtime, I try to sneak off to the shower rooms for half an hour. It’s something I look forward to. A little moment of calm in the middle of the day. Like a coffee break, but instead of loading up on caffeine, I pour relaxing, positive thoughts into my ears. One thing does slightly concern me though. The other day as I was coming out of the shower room with a beatific, post-hypnotic smile on my face, I bumped into one of the girls from the office. She didn’t give me a chance to explain what I was doing in a locked, darkened room with a laptop, because as soon as she spotted it tucked under my arm, she gave me a very queer look and hurried for the stairs. In future, to avoid people jumping to the wrong conclusion, I wonder if I should roll my laptop up inside a towel?

The shower room at work - an ideal place to cleanse the mind.

Wednesday's diary on a Thursday 7.7

These WDOAT's sure are coming round fast. Did you know there are only 13 left until Christmas? You’ll see below I really upped the ante with therapies this week, so I’m feeling pretty damn confident. I'm so pumped up I may just invade a small country or at the very least enter The Krypton Factor.

Wednesday 30th September:
7am Change bag
7.45am Empty bag
9.20am Empty bag
11am Change bag
1.45pm Empty bag
6.30pm Empty bag
10.30pm Empty bag

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

Therapies:
Paul McKenna Control Stress relaxation therapy x 2, Rewind, Guy Cohen relaxation therapy

Noticeable improvements:
Small amount of blood again. Still feeling good though.

Mood:
All-conquering. Watch out Andorra.

Why me?

A little while ago Rich left a comment saying how he often found himself asking, “Why me?” It gave me an idea for a post, because in all the years I’ve had ulcerative colitis I’ve never thought like that. And I think one of the reasons why I’ve never cried up at the heavens in despair, “Why me?” is because I’ve always kind of thought of myself as one of those sort of people that weird or strange or unfortunate things happen to. Of course I was never expecting to get ill, but let’s just say it didn’t come as a complete surprise. And the fact UC is a ridiculous bottom related disease, involving much embarrassment, well that’s just par for the course. Anyway, shortly after reading Rich’s comment I started jotting down a few thoughts on the subject of ‘Why me?’ I never finished writing the post, but on the right hand page below you can read as far as I got. (Click on the pictures to enlarge if you need to.)

Now this week I bought Paul McKenna’s book Control Stress. Which is very interesting and includes some great practical tips on how to reduce stress. One chapter in particular caught my interest. It’s called ‘What’s your story?’ and talks about the stories we tell ourselves about ourselves. I think he means that self-narration or self-mythologising thing we all probably do a bit. This part really struck a nerve with me:

Remember, not all stories are negative. If you’ve spent your life telling yourself that you’re a gifted learner, a loyal friend and a ‘get it done’ kind of person, chances are that story has served you well.

But in our culture, the more common stories are imposed upon us from the outside. If you’ve ever been told you’re ‘just not good at maths’, or that you’re ‘shy’, or ‘you’ll never amount to anything’, chances are you’ve struggled in those areas. At some point, you probably took on the story as your own and began repeating it in your head and out loud to others, using the label as part of your identity and building further stories around it.

Now go back and reread those two pages from my notebook. Embarrassingly I’ve got myself down as some sort of freaky big eared, light bulb attracting hospitalaholic. Somehow in my head I’ve turned myself into a real life Gaylord Focker from Meet the Parents for whom life is just one long series of humiliating hurdles. And it’s true, if something not so great happens to me, I just shrug and think ‘typical, of all people it would have to happen to me.’ So all this has made me think I should probably start writing a different story for myself. In this one I won’t be so accident-prone and have strange illnesses. I’ll be lucky and healthy and confident instead. And light bulbs definitely won’t fall on me.

Wednesday's diary on a Thursday 7.6

On time and with two and half hours to spare, it's...WDOAT!

Wednesday 23rd September:
4.40am Change bag
7am Change bag
9am Empty bag
2.30pm Change bag
10.45pm Empty bag

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

Therapies:
Paul McKenna Control Stress relaxation therapy*

Noticeable improvements:
A very small amount of blood again. But on the whole I feel great, ticking along quite happily. Don't seem as tired perhaps as I used to.

Mood:
Positive, more relaxed, more confident.

*Paul McKenna has a book and CD called Control Stress, which seems to dovetail quite nicely with Guy Cohen's stuff.