Thursday, October 29, 2009

Wednesday's diary on a Thursday 8.1

Wednesday 28th October:
7am Change bag
11.30am Empty bag
6.45pm Empty bag
9.30pm Empty bag

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

Therapies:
None.

Noticeable improvements:
No blood.

Mood:
Good.

Wednesday, October 28, 2009

Bedtime reading

Foyles sits on the edge of Soho like a bookend. Established in 1903 it is the Harrods of bookshops. In its heyday Christina Foyle held literary lunches on the premises, attended by famous writers of the time. If ever the Oxford English Dictionary were stuck for a definition of ‘intimidating’ then ‘Foyles literary lunch’ would sum it up well for me.

Recently I did something in Foyles I’ve never done before. I went downstairs to the basement floor in search of the self-help section. It’s ironic that you have to go down to find the books that will make you feel up. What immediately struck me about the self-help section is its size. The shelves are floor to ceiling with books written by gurus of every description; businessmen, entrepreneurs, doctors, hypnotists, healers, religious leaders, celebrities, sportspeople, professors, scientists, philosophers, weathergirls (probably); the selection is mind-boggling. In fact someone should write a self-help guide to self-help guides. It would probably sell.

There clearly is money to be made in the self-help business. I’ve read a few articles recently suggesting the current popularity of the genre is largely down to the credit crunch and modern life being a bit stressy and shit. There’s probably some truth in that. A couple of journalists even go as far as to actually blame the banking collapse on self-help books themselves, which they claim are responsible for psyching up city traders and making them feel invincible. At this point it all gets a bit chicken and egg and I need to lie down.

Whilst flicking idly through various books, with bombastic titles such as Want it, See it, Get it! I surreptitiously took a peek at my fellow browsers. They didn’t look desperate, unstable, depressed or haunted, like they were about to throw themselves under a tube train. Nor did they particularly look like pumped up little Gordon Gekkos. They actually appeared an incredibly normal bunch. Although I did note we were all men. Perhaps women solve their problems by talking about them, whereas men prefer to furtively underline key phrases and scribble notes in the margins of self-help books?

There’s a lot of scepticism about the self-help industry. And when you read some of the titles, like Happier Than God and Awaken The Giant Within it’s easy to see why. The style of some of the writing doesn’t help either. A couple of books I picked up read like nothing more than extended penis enlargement ads. But I decided to hold back on my cynicism. After all you don’t dismiss John Steinbeck because he happens to be on the same shelf as Danielle Steel, do you? Like any genre, there must be good self-help books and bad ones. It may be a case of not judging a book by its cover. Or even its chest-beating, testosterone-enhanced title.

On the recommendation of Guy Cohen I bought Paul McKenna’s Control Stress book. I like it, a lot of it makes sense to me and it dovetails nicely with Guy’s therapies. If you feel stress may be an issue for you I think it would be £10.99 well spent. Since my trip to Foyles I’ve started to amass a small library of self-help books and related newspaper articles. (I’ve found quite a few books in charity shops, which perhaps isn’t a good sign.) Some of the stuff I’ve read seems a little fanciful, but on the whole I find them really useful to dip into for a nugget of wisdom or a piece of fresh thinking. A few pages a day seems to help keep me focused and heading in the right direction. For me, self-help books can be a great resource if you open them with an open mind.

Saturday, October 24, 2009

One of Nena's 99 red balloons borrowed for use in Crohn's and UC song

Red Balloon is a song written by Lauren Bruno and featuring Mike McCready of Pearl Jam to raise awareness of inflammatory bowel disease. It’s very inspiring to see people putting themselves out there and using their creativity to help others. Incidentally, I’m going on a hot air balloon ride next weekend. I’m not sure if it will be red though. And I won’t be singing.

Thursday, October 22, 2009

Bloody Redgrave

A word of advice to anyone newly diagnosed with ulcerative colitis.

Chances are until recently you’d never heard of ulcerative colitis, and as soon as you got home from the hospital you probably did what most people do and went straight on Google. Maybe that’s how you ended up here?

And amongst the flotsam and jetsam of UC related stuff on the internet you may have read that Olympic legend, Sir Steve Redgrave also has ulcerative colitis. This is true, he does. He’s one of the very few public figures who are happy for the world to know they have a bowel disease. This is to be applauded.

Now, when you come to find yourself explaining to your friends, family and colleagues what exactly UC is, it may be tempting to drop in the fact that Sir Steve Redgrave has it. This is perfectly natural. It somehow helps normalise it for people. In their heads they’ll think “Oh, if Sir Steve Redgrave’s got it, it can’t be contagious because he had to sit in a boat with other people and I’ve seen him shake hands with the Queen.” It helps people contextualise it.

It’s understandable that anyone with any sort of illness would seek out a celebrity with the same condition. I imagine Professor Stephen Hawking often told his friends, “You know that Davros from Dr Who? Well he’s got what I’ve got.”

But if you were thinking of telling people you have the same disease as Sir Steve Redgrave, don’t.

It’s not worth it. And I’ll tell you why. Next time you phone in sick, or cancel a night out, or try to get out of going to Ikea and you use your UC as an excuse, Sir Steve-sodding-Redgrave will be thrown back in your face. Gold medals and all.

You see, somehow Sir Steve managed to go and win gold at five consecutive Olympic Games all whilst having ulcerative colitis. And he wasn’t doing shooting or bowls or some namby-pamby sport, he did it in rowing, one of the most physically demanding events you can do.

Up against that your excuse that you’re too tired to go to Aunt Jean’s birthday party suddenly sounds a bit lame.

So if you want an easy life, mark my words, don’t ever, ever tell anyone that Sir Steve Redgrave has UC.

Wednesday's diary on a Thursday 8.0

Wednesday 21st October:
6.50am Change bag
11.30am Change bag
3.30pm Empty bag
6pm Empty bag
8.45pm Empty bag
11.15pm 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, Rewind technique

Noticeable improvements:
A smidgen of blood. Not enough to satisfy a vampire gnat.

Mood:
Unworried

Wednesday, October 21, 2009

Gratitude

On my computer desktop there’s a Word file saved as Gratitude. It was originally called Joy, but that seemed too hyperbolic. Then it was called Whoohoo, but that felt slightly sarcastic. So now it’s just called Gratitude.

Every night before I go to bed I open up the Gratitude document and write a list of all the things that I’ve been grateful for during the day. It can be anything. If I had a particularly good cheese sandwich for lunch, it goes on the list. If someone compliments my shoes, it goes on. If I have a niggle-free bag day, I put that on the list. I work with talented, interesting people, so I put that on my list. My girlfriend goes at the top and in CAPITALS. Personally I don’t like to use too many exclamation marks, but they’re sprinkled all over my gratitude list like hundreds and thousands. I think it’s okay to be cheesy with it.

When I first started writing my daily lists I felt a bit of a plonker. It didn’t feel like something a 37-year-old supposed man of the world should be doing. It felt naff. But that feeling quickly went away. What I find now is just the act of writing the list shifts my focus away from life’s irritations and niggles. And after I type out each thing I’m grateful for, I give myself a moment to think about whatever it is. It sounds corny as hell, but it’s kind of hard to stop myself smiling.

Keeping the list also makes me more conscious of the good things in my life. It makes me seek more of them out. I look for them now. Yesterday I was walking through Piccadilly Circus, which I’ve done hundreds of times before, but just for once I stopped and took it all in. And as I looked around me I thought to myself – wow, I’m living in one of the most exciting cities in the world, on my way for a mooch round Waterstone’s Piccadilly, in a great art deco building and then afterwards I’m going to have a really good cheese sandwich. That’s pretty cool.

Now in cold black and white pixels that may sound like a load of old hippy nonsense, but just a few weeks ago I could have made the exact same journey and I would have been chuntering to myself about bloody tourists getting under my feet, the lights taking ages to change and generally being a cantankerous old git. I would have been so wrapped up in my gloomy thoughts Eros could have been replaced by Jesus the Redeemer and I wouldn’t have noticed.

And I wouldn’t say I was particularly unhappy before, or that I was a sour, miserable sod all the time. At least not outwardly, but inwardly I was perhaps dwelling on the negatives a little too much. I think I was probably like a lot of Londoners.

But just by spending a few minutes every day writing my list, littered with all those cheesy exclamation marks, I’m training myself to think more positively, to appreciate what I have and enjoy it. It makes me live much more in the present. Not in the past or the future, but in the moment.

So here’s an example of how I start my list:
Wednesday, 21st October, 2009

Today I am happy and grateful for…

1. Having the time to write a blog about my gratitude list

And then I keep adding to it until I run out of stuff. There's usually somewhere between 8 and 15 things on the finished list.

If you decide to give it a go, try it for a week and then let me know if you feel any different. I’d be really interested in the results.

It works for me!!!!

Tuesday, October 20, 2009

Loo roll sculpture

I think these are really quite lovely.



Things I won’t be talking about in the lift at work but I will be talking about here

Lift conversations should be kept light. It’s almost as if the lifts themselves can only carry conversations of a certain weight. Anything too heavy and there’s a danger the lift will grind to a halt. Or it can feel that way.

So as a rule of thumb, the lighter the conversation, the quicker the journey. The heavier the conversation, the slower the journey. If you don’t believe me, next time you’re in a lift with someone start a conversation about paedophile tagging. See how long that journey feels.

Lifts already carry signs to tell you how many people they can take – Maximum load 10 persons or 750kg. Maybe they should also have one for conversation – Maximum heaviness of chat ‘the weather’, ‘recent football results’ and ‘the Cheryl Cole did-she-mime-didn’t-she-mime debate’. It would be a handy reminder to keep things nice and light.

Of course, I already know this, which is why recently when someone in the lift at work asked me if I had done anything interesting the night before, I lied. That’s right, I lied to their face. Because the truth would have been far too heavy for lift chat. The truth would have meant telling them I spent the evening attempting to cure my incurable disease. It is, I think you’ll agree, a little on the weighty side. There’s a time and place for telling folk you’re attempting to cure yourself of an incurable disease, and it isn’t somewhere between the ground floor and the fourth.

In fact, outside of a small circle of friends and family and anyone who reads Number Twos, I have told very few people what I’ve been getting up to in my spare time. And even then I’ve been fairly vague about the details.

But over the next few posts I’m going to share with you some of the therapies and techniques I’ve been using to wallop my ulcerative colitis into submission. After years of my UC attacking me, I’ve started to fight back. And I’m throwing everything at it. It’s quite fun actually.

So in my next post* I’ll be talking about the role gratitude is playing in the war against my UC. It’s definitely not a topic for the lift.

*Okay, the post after the one with the loo roll sculptures.

Sunday, October 18, 2009

Karate Kid Part II

I wasn’t cut out to be the Midland’s answer to the Karate Kid.

When I was about 14 or 15 I joined a local karate club. Naively I had assumed karate was all about flying ninja kicks and screaming ‘haaayaaah’ a lot.

Oh, how wrong I was.

Karate, I soon discovered is incredibly disciplined. It is an ancient martial art form with very strict traditions. There is a clearly defined hierarchy and you have to behave respectfully at all times. I seem to remember being made to bow an unreasonable amount of times.

Karate is far from just a bit of a dust up in pyjamas; it’s a way of life, a philosophy.

And as a young teenager prone to giggling, that wasn’t my cup of sake at all. So after I got my first belt I bowed out. Literally.

Now let’s take a flying karate kick through the years to the present day.

And once again I find myself being challenged by something I had thought was relatively simple, but have since discovered is far deeper.

I’m talking about the hypnotherapy techniques I’ve been doing recently.

When I started I thought it was just a case of popping the headphones on, pressing play and letting it all wash over me. But it isn’t. There’s much more to it than that.

It’s not like going on a sunbed where you just lie there and 20 minutes later – bing! – you’re 2 or 3 shades closer to being racially abused by Anton Du Beke.

You need to play an active role in some of the therapies. You need to concentrate. You have to work at it. It’s a learning process. It’s ongoing. And it doesn’t end when the recording stops.

Like karate, it’s a way of life, a philosophy. And the more I practice the techniques, the more effortless they will become. My thinking will go from flabby to toned and my health, too, will improve.

I just have to stay committed and disciplined and not give up on it like I did with karate.

Thursday, October 15, 2009

Wednesday's diary on a Thursday 7.9

WDOAT has been a long-running feature on Number Twos since 1952, when it made its first appearance in exactly the same week Agatha Christie’s The Mousetrap opened in London’s West End. And like The Mousetrap, WDOAT continues to keep audiences from around the world on the edge of their seats week in, week out. An enduring tradition of WDOAT is that readers are asked not to reveal the surprise ending to anyone, to ensure it isn’t spoiled for future readers.
Wednesday 15th October:
6.45am Change bag
11.20am Empty bag
2pm Empty bag
5.50pm Change bag
7.30pm Empty bag
10.15pm 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:
Bit of blood.

Mood:
Disappointed. (Don't tell a soul.)

Tuesday, October 13, 2009

Are you a West Ham supporting ostomate who doesn’t work Wednesdays and has at least two friends?


If so you’re in luck.

I received this invite today, but I won’t be able to make it.

If you would like to go, email me your address and it’s yours.

(Nice of them to design an invite that matches my blog so well.)

Friday, October 9, 2009

UC, diet, health, recipes and a girl called Penina

You may remember a couple of weeks ago I wrote a post called ‘Why me?’ Well, amongst the comments was this one from someone called Penina:
I agree. I used to think "why me" when I was first diagnosed with Ulcerative Colitis, but getting "sick" helped me discover my passion for nutrition. Now I am working with clients with digestive issues to help them regain their quality of life, which is more rewarding than any corporate job I used to have. So I guess in the end...my disease was a blessing...
It sounded interesting. Penina had put her name to the comment, and it was in blue and underlined, which is always more fun, because you can click on it. This is the internet equivalent of stepping through the wardrobe; you never know where it may lead you, but you’re hoping it doesn’t involve rubber gimp masks and hamsters. (Or maybe you are?)

The click-through took me to a very lovely website called Feed Your Roots, which is written by Penina. It was immediately obvious she has no interest in rubber gimp masks and hamsters, but is clearly passionate about food and diet and the role it can play in our health. I thought it would be good to know more, so I emailed Penina to see if she would be happy to answer a few questions. She said yes. So I’d like to say a big thank to Penina for taking the time to do the Q&A.

Could you tell us a little about your history with ulcerative colitis?

Absolutely. In November 2006, I developed symptoms similar to a stomach flu and I could not seem to recover. Once I started bleeding, I was tested for a number of different illnesses and issues including parasites, but every test came back negative. It took about a month before I finally had a colonoscopy and that was how I was diagnosed with Ulcerative Colitis. My doctor said I had a mild case and that with the help of medication I should be in remission “in no time”. Six months later, my quality of life had not improved and I started looking for other options.

In June 2007, I found a health counselor in New York City (where I was living at the time) who specialized in digestive issues and scheduled an appointment with her right away. We discussed my current diet and lifestyle. I thought I was pretty healthy - I exercised regularly, ate well and was not overweight. She gave me several recommendations to start on immediately and this was the beginning of my healing process. Some of the recommendations were harder than others. Omitting coffee and beer from my diet was probably the most difficult. Once I got over the hump of my caffeine withdrawal haze, I could feel a positive difference in my body, but I still had a long way to go. Over the next several months, my health counselor helped me understand my body and my disease and how food can be used as medicine. My life was never the same again.

My illness helped me find my passion – nutrition. I am now a Certified Health Counselor and work with clients to meet their health goals to live a healthy fulfilling life.

I was fortunate to have the support of my friends and family. I could not have made these permanent life style and dietary changes without their love.


You were taking conventional medicine for UC, but you only started to improve once you changed your diet and lifestyle. What changes did you make?


That is correct. I tried medicine without making any diet or lifestyle changes for six months and did not show any signs of improvement. My diet today is plant-based with an emphasis on whole, nutrient dense foods. Whole foods have not been processed or refined and do not contain added ingredients like salt or sugar. They cannot be made in a plant or factory. I exercise regularly and incorporate stress-relieving activities like yoga into my routine.

It can be easy to get disheartened if you don’t see results straight away, how soon did you start to see an improvement in your health?

I think we live in a society that demands instant results. Everyone is looking for a “quick fix”. I think that is why fad diets and diet pills are so popular.

It takes time to undo the damage you caused your body over the years. Our bodies know how to heal if we give them the right equipment to do so. I started feeling more like myself again after a few weeks but it took several months before I went into remission.


And what’s the current situation with your UC? Presumably you still take some medication?

I am the healthiest that I have been in years. I am on a small dosage of Lialda, which I hope to eventually taper off of completely. I’ve been to 3 doctors since my initial diagnoses and none of them have been able to give me an explanation as to why my colon is pink and healthy.

It seems your approach is tailored to the individual and requires you make some pretty big changes to your lifestyle, what would you say to someone who would like to make those changes, but whose family is less than enthusiastic to swap their ‘normal’ diet for a whole food one?

I would also tell them that just a few years ago I was in their shoes. Some of family members did not understand why I was working with a health counselor. They always supported me, but did not understand. Then they saw how my quality of life improved and became “believers”.

I would also suggest that the individual schedule a Wellness Consult with me so that we could speak about their specific concerns in more depth. This is a 50 minute complimentary session where we discuss that individual’s heath history and how we could work together to start making changes for them to live a more fulfilling life. I work with clients by phone, Skype and in person and can be contacted at peninabareket@gmail.com.


When I was first diagnosed with UC I asked the doctors about whether a change of diet might help and they pretty much dismissed the idea there was any link between diet and UC. Do you think this is a belief the US medical profession shares or is it just a UK thing?


When I was first diagnosed my doctor also told me that I did not need to make any changes to my diet. I needed to experiment and see what worked for me because each person is different. While I agree that each person is different, we are also alike in many ways. How can food not play a significant role in a digestive disease?

I think many if not most medical professionals in the US do not think that diet and lifestyle play a significant role in “incurable” diseases like Ulcerative Colitis. I strongly believe that this is starting to change. There are many physicians who are leaders in their fields who believe food should be incorporated into medical treatment and I believe this already has a ripple effect. My father is an OB/GYN and initially did not agree that changing my diet and lifestyle could improve the symptoms of my disease. He has seen 2 of his 4 children develop UC and change their quality of life through diet and lifestyle. Today, he is studying to incorporate nutrition into his practice.


Stress and UC are quite often linked. Before becoming a health counselor, you had a job in the corporate world with a lifestyle to match; do you think this played any part in your illness?

For me, addressing and controlling my stress has played a huge role in the overall maintenance of my UC. I first started to show symptoms of UC during a very stressful period at work. A year later I had a terrible flare up which also happened to coincide with another stressful period at work. By working with a health counselor as a client and then through my training and education to become a health counselor, I have learned how to reduce my stress and what I need to do when life does get stressful so that I don’t flare. We all have stress in our lives, this is unavoidable for most, but the important thing is to learn how to deal with it before it controls our life.

I’m a big fan of the occasional curry, can you recommend a recipe?

Unfortunately, I don’t. Curry dishes typically have dairy and a lot of spice, which I avoid in my diet. I’ve tried curry-style recipes in the past that were dairy free, but I have not found one yet that I like enough to recommend.


Bugger.

Thursday, October 8, 2009

Wednesday's diary on a Thursday 7.8

Other things WDOAT could stand for:
Worryingly Dire Opinions Are Typical
Words Don’t Offer Any Titillation
Worthless Drivel Obviously All Toss
And my favourite:
Weekly Dose Of Arse Talk

Wednesday 7th October:
7am Change bag
2pm Empty bag
7.30pm Empty bag
11pm 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, Rewind, Guy Cohen relaxation therapy, Geoffrey Glassborow relaxation therapy

Noticeable improvements:
Small amount of blood again. (Which technically isn't a 'noticeable improvement' is it?)

Mood:
Very good; but I have decided to pull out of my planned invasion of Andorra. (Apologies for the late notice.)

Wednesday, October 7, 2009

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

Tuesday, October 6, 2009

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.

Monday, October 5, 2009

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.

Sunday, October 4, 2009

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.

Thursday, October 1, 2009

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.