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Archive for November, 2009

So, it’s t-minus 2 days until my colonoscopy which means it is time to start the prep.

As of this morning, I have only be able to eat low fibre food.

The handy little booklet the John Radcliffe hospital gave me says:

Eat a low fibre diet, consisting of white fish, chicken white bread, eggs, cheese, or potato without skins. High fibre foods such as red meat, fruit, vegetables, cereals, nuts, salad, wholemeal foods must be avoided.

Have plenty of fluids to drink.

So, today I have eaten a toasted cheese baguette for breakfast…

and…

A toasted cheese baguette for lunch.

For tea, I think I will be rocking the boat and having some tomato soup.

Now you may be asking how I can have tomato soup when I have been told to avoid vegetables (and fruit, as that is what a tomato really is), but, ha, I say.  As this is a soup with no bits it must be okay… mustn’t it?

Tune in tomorrow for my last meal for a day and a half… oh, and the start of the bowel prep.

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At the moment, when it comes to PSC I seem to be one of the luckier ones. I am ‘symptom free’ in the sense that I have no mind-numbing itching and I am not particularly yellow.

However, one thing I do seem to have is tiredness.

I’ve had to think very hard about posting this here. Basically, I wanted to make sure that I wasn’t just making this up, or that the tiredness wasn’t related to something else.

I have had it since about September:

  • Firstly I put it down to jet-lag, as in September I both traveled to and came back from the US.
  • Then I put it down to a cold.
  • Then to not having been to the gym for a while.
  • Then to not having enough vitamins.
  • Then to having my seasonal flu jab followed by my swine flu jab.

Now, I am out of options and it seems to be getting worse.

I find getting up in the mornings even harder than I did when I was a teenager. By midday I am so tired my eyes sting every time I blink.

And what’s worse, sugar drinks – such as my beloved Dr Pepper – only take the edge off, they don’t wake me up fully.

To be honest, I am not 100% such as to the reason of this post. There is no amusing anecdote to get you smiling; I don’t even have a cheap dirty joke to get a quick laugh.

I guess this is more about just ordering my thoughts. A way of analysing what has been rumbling around in my head for a while.

Though, of course, I am open to suggestions on how I can improve my wakefulness.

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One of the many bonuses of having primary sclerosing cholangitis is the fact that I am at a much higher risk of many types of cancer. </scarcasm>

Some of these, such as cholangiocarcinoma, are very scary. Cholangiocarcinoma is considered to be an incurable and rapidly lethal. It is also very hard to spot. So, that’s good! One of the less scary forms of cancer that I am more likely to get (never thought I’d ever write a sentence like that) is bowel cancer.

Now, this, if caught early enough, is easily fixed. In fact, as long as it hasn’t spread, in the worse case they can just chop out the bowel and let you poo into a bag. To ensure that I don’t get this, I now have to go for annual colonoscopies.

Think of this like Christmas, just without the present giving, food or any of the fun. Instead, think of it like a 9 foot camera being rammed up your… well, I’ll be crass… your bum. Now, I’ve had one of these before and I’ve had its baby brother: a sigmoidoscopy. At just 4 feet long, it’s the younger brother with a small man complex.

The time I went for the sigmoidoscopy I was ‘prepped’ in the hospital by a lovely Polish lady.

*Flashback wiggly lines* I nervously walked into the room. In this order, I see: an overweight polish lady, a bed covered in that blue paper they always have at hospitals, a sink with what looks like two baby bottles warming in it, and a chair with a hole cut out of the seat with a cardboard container below it.
‘Don’t worry. For people who don’t make toilet’ she said.
‘MMhhhhnnnnnnn.’ I replied. Not taking my eyes off that seat.
‘You are here for proceege?’ I take a wild stab that ‘proceege’ is her way of saying ‘procedure’.
‘Ummm, yeah.’
‘Lie down, face wall, knees on chest.’ As this is a hospital, I was, of course, wearing one of those lovely hospital gowns with no back. So, the lovely Polish lady had a perfect view of my bum.
Not just a perfect view it seems; also a perfect approach.
Quicker than a flash I had not one but two baby bottle teats shoved up my bum and the contents squeezed into me. (Not at the same time. Gah, sometimes I think my readership is ruder than me.) *Back to the present wiggly lines*

That was my first enema. And, I have to tell you, I can see why people get this done for fun. No, wait. The opposite of that. I can’t begin to reason why.

After this — and the inevitable evacuation — I was sent to another room where the doctor and three nurses explained what they would do and asked if I wanted any anesthetic.

Now, you have to understand, they don’t give you much. Just enough to make you groggy. So either way I would still be conscious, the only difference being that I wouldn’t be normal again for hours afterwards if I took them up on their offer. I said I would prefer painkillers. Perfectly reasonable, I thought. But no. It was anesthetic or nothing.

So, thinking back to my colonoscopy and how easy it was, I said no. They started. And, my dear Darwin did it hurt. It felt like… Well, it felt like a 4 foot camera being shoved up my bum.

Followed by the camera man.

Then the sound man.

Then that big furry mic thing they have on the long pole.

It was then it hit me: The reason my colonoscopy was a breeze was because I was off my tits on drugs. Remember kids, always say yes to drugs when someone is buggering you with a camera. So this time — which is only 2 and a bit weeks away — I will be taking the drugs.

Oh, and if you wanted to know why they have three nurses on hand: two are to hold you down and the other is to patronise you by just telling you to breathe.

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Ahhhh. Alcohol.

  • A glass of good wine.
  • A pint of European beer.
  • A sip of a good Whiskey.
  • A bite of a Brandy truffle.
  • A slurp of a Sherry trifle.

Whatever your tipple, a little bit of alcohol is a good thing. I’ve even heard that it can be used to sterilise wounds. What a wondrous drink; so much so, that it is often just referred to as just that – Drink.

But tell people that you have problems with your liver and the first thing that they advise you to do is give up drinking. I wouldn’t mind so much if these people were qualified doctors, but they are just normal people. Like me.

There seems to be two schools of thought on alcohol consumption for people who have primary sclerosing cholangitis.

Avoid it as it may* possibly* in some circumstances* maybe* make it worse. This view is taken by patient.co.uk and the American College of Gastroenterology

*Note the modifiers.

Or:

Lower your intake to a level which can be described as ‘social drinking’. This view is held by the lovely Dr Chapman – A UK leading expert on PSC.

Having been told by my specialist that I can drink socially, that is what I am doing. But does the fact that a leading UK expert say it’s okay stop people commenting? No.

Of course, that does lead to the question: What is social drinking?

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Since finding out that I have Primary Sclerosing Cholangitis on Friday 6 November I have been utilising all of my Google-fu skills to find out as much as I can. Better to know than not – or at least that is what I thought.

My surfing has thrown up the following possible symptoms as a sign that my PSC is getting worse:

  • pain in the upper-right quadrant
  • itching
  • yellowing of eyes and skin.

Unfortunately, this now means that any twinge that I feel in my upper-right area is instantly a sign that I am getting worse.

Any itch that I feel is a sign that my time is ticking away.

And every mirror contains the possibility of the dreaded yellow tint that indicates my liver is about to explode.

I have to keep reminding myself that on average, these symptoms are about 10 years away.

At what point will a twinge just be a twinge and an itch just an itch again? And then, when they are, how will I know when they are not?

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When I was a young’un in secondary school, ‘popping pills’ was a phrase that really only came up in drugs awareness classes.

‘I want you all’, said the desperately-trying-to-be-hip teacher, ‘to write down as many phrases for taking drugs as you can.’

Nowadays, popping pills is something I do each and every day. Unfortunately, none of my pills are fun.

Currently, I have to take 16 pills a day. They break down like this:

My medication for a day

  • 200mg azathioprine – taken as four 50mg pills. These repress my immune system to stop it attacking my own intestines.
  • 2g mesalazine – taken as four 500mg pills. These reduce inflammation in my intestines.
  • 1.5g ursodeoxycholic acid – taken as six 250g tablets (to three times a day). These give me the bile acid that isn’t getting from my liver to my intestines.
  • 1.2g calcium and vitamin D – taken as two 600mg suckable tablets (one morning, one evening). To stave off osteoporosis.

I have never been worried about taking my pills when others have been around, but I have heard this is a common issue. My take on it is that I have to take these pills and I am not going to let that interfere with the way I run my day.

If the easiest time to take my morning pills is when I am at work, then that is when I will take them – and I do. Sure, sometimes people look at the pile in front of me and ask if I should really be taking that many painkillers, but I can then just explain that I have various issues and these pills are what allows me to carry on coming into work.

I am so comfortable with my pill taking at work that I have even started a creative project with my empty pill strips. To date I have my mini-Dalek, of which I plan to make a much larger version.

A mini-Dalek made from old medication strips

My final note is just a small word of warning for anyone who happens to need to take some medication that comes in capsule form. Usually, the best way to take any pill is to put it in your mouth, take a swig of water from a bottle – for some reason using a bottle makes it much easier than a glass – flip your head back and swallow.

However, some capsule type pills have a little secret. They float. So when you flip your head back and expect the pill to sink into your throat, you find that it bobs about just behind your teeth. This makes it very hard to swallow via this method.

The best way with a floating pill is to slightly incline your head down before you swallow. It sounds odd, but it works.

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The Downs

I have regular blood tests due to having IBD. And when I say regular, I mean at least once a quarter; though it has been a lot more frequent than this. At one point, it was one a week. I was forced to alternate arms as one would have only just healed when it came to have another.

For the past couple of years, my ALTs have been raised. This is a pretty standard liver marker. The doctors have always put the elevation down to a ‘fatty liver’ and chastised me for being overweight.

However, before I went on holiday this year – end of August time – my blood tests came back crazy. My white cell count was too low and most of my liver markers were all over the place. My ALT was up as usual, but this time it was joined by its friends Mr ALP, Mrs GGT and Master Billy Reubin bilirubin.

I went away on holiday a bit scared.

When I came back, it was straight to the doctors for more blood tests. The results of which show my white cell count as being normal for me but it seems that my liver has been partying hard. Some more tests are ordered and it seems like my liver is an animal.

So off I trek to the Churchill hospital, Oxford for an MRI. My liver was about to have its first photo shoot.

About 3 days later I get a call from my IBD nurse who says that I need to come in and see a liver specialist as my MRI showed ‘a few abnormalities’.

So, Friday morning I traipsed into Oxford to the John Radcliffe hospital to see what they had to say. I met my specialist, a lovely man called Dr Chapman – the UK leading expert in Primary Sclerosing Cholangitis – which, he informed me, I have.

To save you following the link, I’ll sum it up:

  • Quite rare
  • Incurable
  • No diagnostic pattern, so in some it progresses fast, in others slow
  • My liver will eventually destroy itself and I will need a transplant.

So, that kind of bummed me out.

The Ups

I have a great partner. He is wonderful, caring and mine. We have been together for nearly six years and about two months ago we decided we should make it formal and have a civilisation. This is planned for May 2011. Known to us as ‘2011’.

‘We should invite this person to 2011.’

‘Do we want champagne in 2011?’

‘Be nice to me or we won’t do 2011.’

Without him knowing, I decided that it would be good to order some engagement rings; or should that be enGAYgement rings?

I ordered two rings of the same type from Justin Duance, a small independent jewellery maker in the south of England. What is wonderful about them is he works with both metal and wood. So even though I ordered the same ring, I changed the wood in one of them so they were unique to each of us.

A silver and wooden ring bought for my gay engagement

They generally take about two weeks to be made and turn up. I placed my order on Tuesday last week and when I got into the office on Friday – bummed as you can imagine I would be – I had received an email from the person who looks after our mail saying that I had a package that had set off the scanner.

To my amazement, it was the rings. More than a week before I expected them.

All in all, I think the ups that day, outweighed the downs.

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