My friend Billy

So, why am I in the hospital?

Well, my liver isn’t happy and no one is really sure why. The plan for my time here is to figure out what is wrong and then fix it. How long am I going to be in? Well, at the moment it is looking either like another day or, more likely, another 2 days at least.

What is wrong?

Your blood has this stuff in it called bilirubin. It’s a useful little thing tha does lots of really boring stuff. But, if you liver isn’t happy, it starts to build up. Because of that it is used as one of the markers to see how happy a person’s liver is. There are others, ALT, ALP and so on, but my favourite is Billy.

Normally I hover around the higher end of normal, occasionally popping over the top – but that is to be expected in someone with PSC. But, over the past 6 weeks, things have change. See for yourself… Can you spot the concern? The shaded area is the normal range. You may have to rotate the image, sorry.

Now, I have battled along. Tried not to let this affect my life, but this last week that has just not been possible. For a long time now I have been pushing myself to get through the day. ‘One more hour until home.’ ‘Home then straight to bed.’ But not this past week.

You see, too much Billy in you system and you start to go yellow (anything above 40 – now check out my levels. Wooo!). Too much and you start to get tired – as in, I am finding it hard to walk tired. Too much and you start to itch – a crazy itch that doesn’t go away when you scratch it. Too much and you start to feel sick – all the freaking time.

Monday I left work after lunch as I felt so bad. This was the first time that PSC has ever interfered with my work life. This is not something I am happy with. Luckily(?) that night was when the doctors called me into hospital. I’m not sure how I would have coped at work this week. In fact, I probably wouldn’t have.

But… And this is a big ‘but’… Work have been amazing. They are always willing to let me moan on about this. They are always willing to help me where possible. In fact, if they had it their way I would have been off work a lot sooner.

So, I guess this post has two purposes. Firstly to introduce you all to my evil friend Billy who is ruining my life. And secondly to say a big thank you to my work for being so amazing.

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Long time no post

So… It has been a very long time since I last Oates. My fault totally.

Having PSC seemed to have just become part of my life and therefore I didn’t need an outlet for it.

But I am writing a post now, so as you may have guessed, things have changed.

Right now I am sitting in bed in hospital. I was told to admit myself after a series of events which have caused concern to the doctors. Let me take you on a journey.

It all started about six weeks’ ago when I had a friend down to visit for the weekend. The Friday night went well although I felt a little off. I awoke on the Saturday to crazy itching and what I am calling the worst cold of my life. This carried on through the next couple of days.

Everything started to calm down but I never could quite shake the itching or the feeling of being sick. Over the course of the six weeks it slowly ramped up to above the initial level – and was joined by some new symptoms…

Upper right quadrant pain
Lack of appetite
Rapid weight loss
Jaundice

It was these that triggered the doctors to want to prod me some more and promptly an ultrasound and MRI were ordered.

I had the ultrasound last week and it showed nothing – not really a good thing… This coupled with some new funky blood results caused the doctors to phone me in the middle of the night (okay, 8pm but I was asleep) ordering me into hospital as they needed to speed up the checking.

So here I am. At the moment I am waiting for a drip to come and give me some fluids, tomorrow I get to have an MRI and after that, well who knows. All I can hope is that I get back to health soon. I can’t carry on feeling like this.

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Affecting others

This blog has been fairly self-involved. I am quite happy to admit that. It has been a way for me to organise my thoughts and get them out of my head.

But one thing that i have been learning recently is that my PSC, and in fact my IBD as well, effect other people too.

Family

It used to be that every couple of months my brother, my father, me, my partner and some selected friends would go on a lads’ weekend to Cardiff. On these weekends we would eat curry, drink and have a laugh.

We were never violent, we are all happy drunks, so we would just wander around laughing and having a good time. We have not been for a while now. And it is unlikely to happen again.

Every time my dad and I am together we talk about it and suggest organising another trip but my reduction in drinking, to the point of not really having anything ever, has meant that this event will never be the same. And, to be honest, I do not think it is something that I’d like to do anymore.

Being the non-drinker really isn’t fun and I am sure having me around while they are all getting merry wouldn’t be their first choice either.

My partner

My partner worries. He is a worrier. In fact, I believe more of his brain has been set aside to worrying than mine has been to all of the work and studying that I’ve ever done in my life.

It is because of this that I try to keep him shielded from a lot of what i am going through. If I show that I am worrying then he’ll worry even more.

I make a point of going to the hospital on my own. I make sure I have all the facts before I let him know anything. I have adopted the phrase ‘nothing to worry about’ as a personal mantra.

As you may know from my last post, my blood has been a bit stoopid recently. This has, to be quite honest, scared the crap of me. Talking to our doctor friend, who is usually the voice if reason when it comes to things to worry about, didn’t really help when he went a bit quiet and sounded very concerned.

I made the mistake of letting my partner know this.

This other morning while I was enjoying having the whole bed to myself while drifting in and out of dreams, Joe was up and getting ready for work. I remember him coming in, placing his hand in my head and walking away.

In my semi-conscious state I just presumed he was checking to see if I was awake. Not so.

He has been so concerned that I may get an infection and become really ill that throughout the night, whenever he woke up, he had been checking my temperature to make sure that I didn’t have a fever.

I just… Don’t know what to say or write about that…

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Coming out at work

Photo by essygie / Creative Commons

Mum, Dad, I have something to tell you: I’ve got PSC.

I hang around on a PSC forum which is hosted by the PSC Support UK group (my username is ‘nufkin’ if anyone is interested). Recently they have been having a discussion about What to tell work

When I read threads like this I can’t help but feel a huge sense of déjà vu. To me, this is just the same as the types of conversations I’ve had about coming out as gay.

Both being gay and having PSC are elements that I cannot control. Both have a fairly major impact on my life. And both have the possibility of changing the way in which people think about me.

There are basically two sides to the argument:

1. Tell people as this is just a part of who you are.
2. Keep it a secret as you never know how people will react.

With being gay this leads to children keeping it to themselves and lying to those they love. I cannot begin to describe how this feels. To have to keep track on what you have said, to whom and when, just to make sure that you don’t let something slip.

A box is created between your head and your mouth. It’s sole job is to scan everything you want to say and then filter out anything that may lead to people realising you are gay.

This all eventually comes to a head at some point where you ‘come out’. << That sentence really makes it sound like a easy thing. It isn’t. It was and I think will always remain the most difficult and terrifying thing I have ever done. And remember, this isn’t something that just happens once. Coming out is a multiple event. Once to one friend to test the water. Then to a group of friends to test the wider impact. Then to someone in the family. Then to your parents. Then at work. Part of the horror of this is that you are basically admitting to these people that the person they have known for 5, 10, 15 years is a lie.

However, once you have told everyone you ever lied to, you never have to do this again. A lot of gay people get accused of introducing themselves as gay.

Hi, nice to meet you. My name is Mark and I am gay.

Let’s just get this straight now (ha): This is not ‘rubbing it in your face’. This is not ‘defining the most important part of me as gay’. This is to ensure that we never have to come out again. If new people know from the start then there is no need to go through coming out.

Of course there are more elegant ways to do this than the above, which is what – I hope – people eventually realise. When you ask about my girlfriend I will correct you. I may, shock horror, even talk about him without prompting when he has done something I am proud of. Just like you would when your other half does something good. This is my way of not lying to you and avoiding the dreaded coming out.

So why should it be any different with my illness?

As you can see, from the whole of this blog, I am not ashamed to admit that I have PSC. My name is in the header and the URL. My picture is at the top of the page.

But. And this is a big but. I am currently applying for jobs. I work as a webby person so I would expect any potential employer to google my name to see what comes up. They have full access to this blog and I would hope that they see this and think, ‘Oh cool. He has a blog. He knows about this web 2.0 stuff. He is the man we need.’

Rather than: ‘Oh cool. He has a blog. What is it about? Oh, he’s ill. What is PSC? Oh. Crap. Well, let’s not employ him.’

But I guess I will just wait and see what happens.

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In writing

So, it’s been a while since I was diagnosed with PSC and I’ve been through a number of stages.

Now I haven’t always been a fan of the seven stages of grief and it’s blanket application at all situations but I definitely experienced the following:

Denial – Not in the sense that I refused to believe I had PSC but more that I refused to believe it was anything to be concerned with. PSC just meant that I had to take more pills.

Fear – Again, not in the way I expected. I was fearful for what could happen. How would my other half cope if I got really ill? What if I became too ill to work?

Acceptance – ‘Yeah, so, okay. I have PSC. What about it?’ But this soon developed into it falling to the back of my mind and then, just dropping out of my thoughts all together.

I would still read PSC forums; maybe even post on them. But it wasn’t really related to me. I was fine, no real symptoms, others had it worse.

That was until I had my latest letter from my specialist. Included in it was the details of all my latest blood test results.

Looking at the results there on paper. In writing. Telling me that my liver results are well above normal. It hit me:

While I may feel okay. While I can still go to work, have fun and enjoy life. I am still ill. My liver is not happy and that will only get worse.

My last results

Alkaline phosphatase (ALP)

Normal range: 20 – 140.

My results: 398

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Tiredness kills

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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Lie back and think of England

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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Sup?

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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Mind over body

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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Medication

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:

• 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.

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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