Posts tagged ‘crohn’s disease’

16/04/2013

Klean Prep, how I fucking hate you!

Last Friday I was the semi-willing recipient of an Magnetic Resonance Imaging scan, this being just about the only step left open to the doctors who are trying to find my Angry Bowel Pixie and kill the little fucker. I’d never had one of these scans before, so being something of a techie I was, weirdly, kind of looking forward to experiencing it. After all how often do you get stuffed inside an immensely powerful, and expensive magnet…for highly personal medical science!

There’s just one problem with having your innards scanned with an MRI, that being making your innards actually visible to the scanner. However it turns out that medical science has a solution to this, well it’s a suspension actually but…ya I know, bad science joke. That solution is known as Klean Prep. Let me tell you a little about Klean Prep.

Klean Prep is this powder that’s mixed with water. You then drink 1 liter of it per hour, 4 liters in total.

Klean Prep tastes kind of like…well actually I don’t know anything that it tastes like. But I can say this, with the authority of having drank 40 liters of it in the past 10 years, it tastes disgusting. The 1st carafe of it is kind of bearable, but by half way through the 2nd I’m gagging at every taste, and by the time I start the 3rd I’m plotting the horrifically painful murder of the inventor of Klean Prep.

Klean Prep does exactly what the name implies. It cleans out your insides in preparation for some medical procedure. Usually a colonoscopy, or endoscopy, or to put it another way the internal use of a telescope big enough to pick out a single waving Venusian in a parallel universe, but all they actually end up seeing is Uranus. But cleaning, or Kleaning does imply a detergent like effect. And yup, in essence that is precisely what Klean Prep is. It’s an industrial strength detergent for your bowels, which just happens to also make your bowel far more visible to an MRI scanner.

“But Amanda, what’s so bad about that?”

Oh dearest reader, imagine the worst case of the runs you’ve ever suffered through. The cramps, the burning, the raw skin on your tush. Well, this is so much worse that words actually come close to failing me.

First, as I mentioned above, you get that indescribable taste. With it the certain knowledge that by drinking the foul-tasting, liquid bowel blowout you’re in fact setting yourself up for a miserable days living.

Then you start to get the cramps. And these are real cramps, not your namby pamby day-to-day cramps. The type of cramps that leave you lying on the floor sweating, moaning, and wishing for a speedy death.

Then the first gush of diarrhea. And you think to yourself “Hey, that wasn’t so bad.” No burning, no stinging, just “gush” and it’s gone.

By an hour later you’re wishing for death again, yours and your doctors.

By hour 2 and trip 4 or 5 to the toilet your just daydreaming about all the ways you can torture someone in a white coat to death.

By hour 4 and trip…”who the fuck knows?!” to the toilet you’re not thinking anymore. All you can feel, or think about is how much your ass, and bowels hurt.

By the end of hour 5 if you’re lucky you’ve just passed the last of the Klean Prep. Of course it’s been running through you completely clear for the last two hours, which weirdly hurts even more. But those two hours do beg the question. “Why the fuck do you have to drink all of it?”

Anyway, I only had to drink 1 liter for my MRI…lucky me. I still couldn’t have fought off a day old kitten. I still only barely made the toilet 6 times. And I still want 10 minutes alone with the inventor of Klean Prep, with a baseball bat.

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10/05/2011

Angry bowel pyxies and the people in your life.

In February, I wrote about coping with some of the symptoms which are shared by Crohn’s Disease, Irritable Bowel syndrome and Colitis.  I however, missed one very important factor of coping with a long-term, chronic illness.  Helping the people in your life to cope with your illness.

A little story perhaps will illustrate.  I have a wonderful adopted little sister, (I in fact, have four but I’m speaking about the youngest, most kittenish of them here.) and today she was upset by my illness or more precisely, by the idea of my being in pain.  In her work, she saw images, of the damage that can be cause to the human body, by what is wrong with me.  The end result, was a lovely phone call, so that she could tell me she loves me.

My partner, yes that’s right, the grandmother of the Force of Nature, she also lives with the day-to-day  implications of my illness.  So too, to a greater or lesser extent do my mother, my other adopted little sisters, the Force of Nature, most of my friends, etc.  And they all react in different ways, each in keeping with their own strengths and weaknesses.

But the Kittens phone call today, made me realise that just because they know, just because they deal with it in their own way, does not erase my responsibility to help them cope with my health.  After all I’m the only one who can explain to them what I’m going through.  The only one who can tell them in a comprehensible way how they can help.  I have to be the one to make sure, that when there is no need to worry, they know.  Though stopping them worrying is beyond my powers.

This is something I understand well.  My partner is diabetic, so I worry constantly about her blood sugars, about whether she’s eaten a breakfast and of course whether her foot will be dropping off anytime soon.  This despite my knowing, that there’s really not a lot to worry about.

Regardless, when you suffer from a long-term illness, you need to educate the people who love you.

They need to understand:-

Why sometimes don’t show up for things.

Why you seem to eat exclusively in certain places.

Why you act really odd sometimes, when you’re in public.  Well odder than usual in my case.

They need to know that sometimes you are, actually alright.  It may last for only a few hours, but that in those few hours everything is great.

But most of all they need to know that their concern makes you feel loved, and so, feel better.

I’m not going to write a list of helpful hints on this.  There aren’t really any.  You will have to take each relationship as it comes and act accordingly.  I will say this however, never forget that those who love you need reassurance from you, every bit as much as you do from them.

05/02/2011

Angry bowel pixies and how to cope with them.

After over two decades of suffering from severe ill-health a doctor a few weeks ago finally told me that I won’t be getting better.  So for the last few weeks I’ve been processing this and tonight I realised something.  That while I won’t be getting better I do have a wealth of knowledge about how to cope with the symptoms I suffer from.   Everything I mention below is based on my own personal experience so if you do decide to use any of it please temper it with what you know about your own body.

Chronic diarrhea is a nightmare to live with.  Imagine not being able to go anywhere unless you plan out in advance where you might be able to reach a toilet. Or knowing that no matter what you eat a few hours later it will make a commanding appearance in a form more associated with Real Ale. It’s revolting, humiliating, smelly and it doesn’t exactly have a wonderful consistency either. But believe it or not the worst part of suffering from this for me at least is a combination of the post attack burn and feeling dirty all the time.

The latter is at least easily managed with a few simple pieces of forethought.  Carry baby-wipes, most of them are medicated which helps a lot and some even moisturise.  Wipe with toilet paper first to get rid of as much fecal matter as you can and then do a final polish with a wipe.

The post attack burn is a little tougher to deal with.  The only thing that I’ve found which helps is what I think of as a micro-douche.  Yep thats right a very small squirt of clean water up the jacksie.  Now here’s the thing about this, it has to be a very small amount.  You’re not cleaning your anal cavity out, only the first couple of centimeters so that the material causing the burn there is cleaned away.  This is something I use very rarely and only when the burn is keeping me awake or incapable of sitting.

The next biggest problem is the painful ache that seems to run from somewhere under the ribcage all the way to the rectum.  Seriously for anyone who hasn’t experienced this imagine a rope dipped in ground glass which has been sawed back and forth for an hour and you’re getting close to what this feels like.  I have never found a painkiller that touches it but I have found a trick that can help a lot.  Take the common garden variety hot water bottle.  Then put it in the sort of hollow made by where your bum and thighs meet.  I don’t know why but the heat seems to radiate up through the body in the most soothing way.  The bonus though is that it also makes cramping much more bearable.

Speaking of which cramping is a real pain in the…well you know.  They can be anything from just uncomfortable to being so profoundly painful that they drive you to your knees, literally.  To illustrate one day when climbing down out of a bus I got a really bad random cramp.  When it had passed I realised I was lying on the ground with about fifty people staring at me.  I’m afraid there isn’t much I’ve found that can help here. But being aware of what’s around you so you don’t slam face first into a marble countertop if one hits is a good habit to develop.

Some people occasionally soil themselves when they suffer from these symptoms.  Often this is purely because it’s very hard to hold onto something that’s totally liquid.  Well luckily there is a way to make it a little safer when you’re out and about. Maternity pads it turns out aren’t just useful for pregnant women.  Just position them so they will intercept anything that tries to execute a great escape.  It might just give you those few moments you need to run to the nearest ladies room.

Unfortunately the most insipid symptom is exhaustion. It is almost mind numbingly exhausting to sit on the toilet for hour after hour.  It wears at your soul and body.  The only advice here is to rest when you can. Learn from arctic explorers, when there’s nothing to do, do nothing and conserve your energy.  In essence have a nap or read a book, hey if you want you could even watch a soap-opera but really haven’t you just had enough drama in your life?

Apart from all this if there’s one piece of advice I can give its carry a small tube of Savlon everywhere with you.  It’s soothing and promotes healing of the skin, neither is to say the least a bad thing.

So I hope this might help someone out there to survive a really bad day with a severe bowel problem. Ah hell I’ll be happy if it helps someone out there survive the morning after a night in the local Indian.

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