June 2005 Archives

The journalist who interviewed me about a week ago called yesterday to read her story to me before publication. And it was...well, let's just say that it bore some relation to the facts, something like a second cousin thrice removed.

So I wasn't that happy with it, but the trouble is that the magazine has this weird first person, all-written-in-conversation kind of style where the writers basically have no choice but to make stuff up, because no-one can remember exact conversations from five years ago can they.

Still, the basic story about my IBS was there. I did object to the bit where she had me saying "I was terrified it might be bowel cancer" because I was absolutely NOT terrified it might be bowel cancer - I was terrified it might be IBS and they'd tell me to go away and live with it (which it was, and they did). Whether she got the message I don't know, but I do not want people thinking that bowel cancer is horrific and IBS is a welcome relief.

She also had me saying "Now all I need is a man"!! Oh yes, because now that I have sorted out all my bowel problems I just need a good bloke to complete my life. Honestly. I don't think they're even allowed to write that kind of stuff in Mills and Boon anymore.

Oh well, I'll let her have her little neat story of someone being incontinent, worrying about cancer, finding out it's just IBS, changing her diet to cure it and now looking to get hitched. It's pretty much inaccurate on every count but I can't be bothered to argue every count, and at least it's a story about IBS in the media.

Plus she said she'd mention my website. And pay me £100. So it's not all bad...

I've been expanding my blog horizons lately and reading some good blogs from other people with health problems and disabilities. We all have different types of pain, discomfort or other bodily woes to put up with, but the ridiculous assumptions that people make about disability seem to be pretty universal.

Maybe I'm lucky that IBS is not something you can see - if I meet 10 new people today there's no way they can tell I'm not like them, there's no chance that they'll start telling me IBS is in my head or that it's caused by stress unless I let them in on my little bowel secret.

But if you use a wheelchair or a stick or a whatever, people know right away that something's 'wrong' - and start making assumptions right away. In one women's blog that I was reading today she tells story after story about people who have helped her cross the road, wanted to come home with her to help her upstairs, told her how wonderful and brave she was for having a job and how they were sure she would be OK in life because despite her disability she was pretty.

What a complete bunch of morons. You think she can't cross the road without your help? How on earth has she managed all those hundreds of times that you've been absent? You think that disabled people can't earn a living?

Honestly, sometimes I despair of the assumptions we leap to about each other, the tiny little categories that we shove people into and insist that they never break out.

When an IBS sufferer chooses to come out of the closet and tell the world about their problems, there are a range of responses which non-sufferers can choose from.

There is the highly popular "It's all in your head", the classic "Stop thinking about it and it will go away", and perhaps one of the most cherished of all - "You're just saying that to get attention."

This last one is a particular favorite of mine because it displays such a clear and deep understanding of the very nature of IBS, as well as the psychological issues of attention-seeking and loneliness.

I think there can be very few people in the world who, when confronted with an empty social calendar and soul-deep feelings of isolation, have not thought about inventing a bowel problem to relieve them of their woes.

Just by saying "I haven't pooped for three weeks and my stomach feels like a bowling ball" you will find that you very quickly make friends, integrate yourself into society and receive all kinds of thrilling invitations.

And if you want to take things a step further you can mention the fact that your explosive diarrhea is regularly mistaken for a foghorn; this should get you one to three marriage proposals and you need never be loveless again.

Hurray! For those of you who don't know I had to turn off the 'comments' feature of this blog a while back because stupid spammers were misusing the feature and posting hundreds of URLs to rubbish like poker sites and porn.

But I won't let them beat me! I will fight them on the beaches! I am the captain of my soul! (And other stirring exclamations). Because now this blog has a comment block feature to stop all the spammers - basically anyone who tries to post more than one URL is gonna get blocked.

So - if you are an actual person (as opposed to a spammer or a goat) and have something to say about IBS, I'd love to hear it! Just click on the 'comments' tab at the bottom of this entry (or any other future entry) and fire away...

Most of us long-term IBS sufferers are well aware that IBS is not life-threatening, and is rarely considered to be a 'serious' illness - we've had enough people say "Oh, it's good that it's just IBS then" to have a clear idea of exactly how seriously other people take this condition.

However, a new study mentioned in the new issue of the IBS Network newsletter shows that while the physical symptoms themselves are certainly not life-threatening, the mental and emotional effects may drive people to consider suicide.

The study, carried out at South Manchester University Hospital, found that a massive 38% of patients in 'tertiary' care (ie: those referred to specialist regional or national doctors) had thought about killing themselves because of their GI symptoms, what the researchers called an "extraordinarily high rate".

If you mentioned that figure to a non-IBS sufferer they would undoubtedly be surprised - but I'm not.

IBS sufferers can have years and years of excruciating pain; they can have fecal incontinence and explosive diarrhea 10 times in a day; they can have constipation for weeks and hemorrhoids the size of marrows and while they're going through all this strife they have to deal with bucketloads of people who think they're faking it. I'm not surprised at all.

Have just been interviewed for a weekly women's magazine, for a true-life story about IBS. It's always good to get more about IBS in the media because a lot of people are still labouring under the false assumption that IBS is a minor inconvenience rather than something that can swallow your life whole.

After all these years, and having to explain my symptoms to countless doctors, and then my friends, and now journalists, I can pretty much talk about IBS without feeling embarrassed. Yes, it's only taken 15 years but I can now say "constipation" with impunity.

Now if we could only stop people developing this damaging, useless, soul-destroying shame about their bowels in the first place we'd really be making some progress. And the only way to do that is to TALK about your symptoms - to anyone who will listen.

Say it long, say it loud; I'm constipated and proud.

OK, feeling a little more human today. I've recently started using acacia fiber, which is a soluble fiber supplement made specifically for IBS sufferers.

It's actually quite easy to take - it's just a simple white powder which dissolves fairly easily in water or other liquids, and then when you drink it it really has no taste or thickness. It's designed to help both constipation and diarrhea, so here's hoping.

I know that some of the other fiber supplements on the market can cause problems for IBS sufferers - psyllium-containing products can irritate the stomach sometimes, and other products contain artificial sweeteners or colors which serve absolutely no purpose and just cause bowel spasms.

IBS has been pretty bad lately. The past week has included: perhaps one hour of fairly intense pain, at least six or seven hours of fair to moderate levels of discomfort, intransigent constipation on at least a couple of days, plus the usual bizarre intestinal feelings such as spasms and weird stuff.

And this is one week of my life, 15 years after first having IBS symptoms. Fifteen years later I still have to struggle and crawl and battle through my life instead of living it.

And the world somehow expects me to do just that. It always feels like whatever pain I am feeling or whatever is wrong with my body, the rest of the world blithely expects me to just carry on, just get on with it. That peculiar kind of British wartime mentality that said we don't care if you've got a bayonet embedded in your spine, you're to carry on living and not complain.

I swear to God if someone once said to me "Dear God, I can't believe the amount of suffering you've been through, you deserve a medal" I would be pathetically grateful. But no-one ever does. They just expect me to turn up or earn money or be happy and then are totally bemused when I am not.

I've had a stomach ache for 15 years, I have to spend hours in the bathroom, I can't eat hardly anything without feeling ill, I can't travel, and sometimes it feels like someone is stabbing me in the side with a lance.

Yes, but why are you crying?

Everyone knows that the best scientific test in the world is the double-blind, controlled test where only one aspect of the test is changed at a time - the mouse is given venison to eat instead of cheese, but it sill lives in the same house with the same mice friends, and there's another identical mouse who's living in the identical situation but only gets to eat cheese.

That's not the clearest explanation of that I've ever seen, but hopefully you know what I mean. And I often wish there were two versions of me so I could do a double-blind controlled test on my bowels.

Whatever you change with IBS, there are always going to be other variables. You might be stressed or not stressed, you have to eat lots of different things, you have to get up at different times and breathe different air and all the rest of it.

So when you find something that helps your IBS, you have to ask yourself - is it really this cheese that is helping my IBS? Or is just the fact that I didn't eat oranges last Tuesday when I normally do?

You just get to the point where nothing really makes sense and you have no idea what anything really does to your body. If only there were a better way. Cloning, perhaps. I'll look into it.