July 2006 Archives

Over the weekend I developed a new and very exciting symptom which I feel I should record for posterity. The new symptom has confirmed my belief that IBS is a vibrant, energetic, ever-changing masterpiece of a disorder - not for me one of those stick-in-the-mud illnesses that gives you the same pain all the time, oh no. I have an illness that *evolves*.

And my new symptom? Bottom pain. Yes indeedy-o, just when you were beginning to think that cramps and spasms and constipation and diarrhea and bloating and agonising stomach pain might be enough to be going on with, your body decides otherwise. And comes up with a pain in the arse.

I can't tell you how thrilled I am about this new development. What it means is that, rather than just finding it difficult to go to the toilet on constipation grounds, I can now also appreciate what it might feel like if you tried to extract a wardrobe from your rectum. This is hugely useful knowledge.

Thankfully, after a few days of suffering, this morning I was able to visit the toilet without the bottom pain manifesting itself. However, this does present me with another pressing problem, which is this - I'm actually quite happy this morning, but it is a fragile happiness. If I were to actually sit down and analyse the source of my joy, it would disappear immediately. No-one wants their state of mind to depend on pain-free pooping.

Intestines have been a bit dodgy for the last couple of days. I don't know why, but then I never know why, so nothing changes.

For some reason I just feel exhausted today. Tired of having to put up with this stuff for 16 years, tired of having to cope, but mostly just tired of wanting something so badly for year after year and never getting it.

There aren't many things I want in life. The other day I decided that the only things I really wanted were a flat of my own and one of those expensive reclining chairs that has a fridge in the armrest and does the hoovering while you sleep.

But I could live without those things very easily, and if I never get them then I won't really care. If I never get rid of the IBS then I'm not really sure what I'm gonna do. Fifty more years of this? And I'm so tired.

So, I managed to cope with my friend's big wedding extravaganza - hurrah and hurray. It was actually an almost ridiculously perfect occasion, perfect summer's day, everyone looked beautiful or handsome as required and the reception was in a quite insanely lovely private school with acres of green lawn.

And then of course there was me and my stomach. I don't know about you but there's nothing quite like a big party to make me feel like I'm on another planet. Everyone else is getting drunk and telling stories and enjoying themselves, and I'm sat there pondering the fact that there are only two cubicles in the ladies' loo, both of that lovely "open" variety that have great big gaps between the door and the floor, Lord knows why.

So an IBS attack would have been mortifying to say the least, but I was never really in danger thank goodness, and I managed to have a very nice time. It sounds terrible but I'm glad it's over though. I was very happy to see my friends happy, and I wish them a long and blissful life together, but the fact is that for an IBS person it's always a bit of a nightmare to know that you're gonna have to spend 10 hours trapped somewhere with limited toilets, food that you haven't chosen, and a whole bunch of people who don't know that you're sick.

And then, you also end up feeling a bit of a fraud. I didn't go to my friend's hen weekend because I was worried about getting ill, but then from everyone else's point of view I've turned up quite happily to her wedding and eaten the food and drunk the drink and even danced the dance - and this is supposed to be the ill girl? Which bit of you exactly is ill, my petal, and why can you just make it better when you feel like it?

I don't know. I've known the bride since school so I hope she knows me well enough to realise that I don't just use my IBS as an excuse, that I would have gone to the hen weekend if I thought I could manage it, and that even a giant party is a bit of a nightmare for a person of limited intestinal fortitude.

A fellow IBS sufferer has sent me a great quote about some people's attitudes to IBS. She says:

"When people say 'Have you tried drinking more water?' or 'Maybe you just need to learn to relax' in that patronising and quite dismissive way, I feel like saying, look, I don't say to you, 'Have you tried wearing a more flattering shade of lipstick?' when you tell me you think your husband is having an affair."

That really sums up the attitude of some non-sufferers, for two reasons. Firstly, because for some inexplicable reason people often feel feel compelled to offer "advice" the moment they hear about your problem, despite the fact that their knowledge of IBS clearly amounts to one short article in the Daily Mail.

And secondly, it shows just how large the gap is between our own perception of IBS, and the non-sufferer's perception. If your husband is having an affair then that's a pretty serious issue, and it's not something that's gonna be solved by a bit of lippy. And if you have IBS, that's a pretty serious, intractable, painful disorder - so why on earth do people think that it's quite so easily cured?

In the comments section of my last blog entry there was a discussion about what percentage of IBS sufferers could trace their symptoms back to stress, what percentage to gastroenteritis, what percentage to surgery, and so on. A member of the IBS Self-Help Group has kindly found a study which gives some figures for this - this is what it says:

"Over 40% of patients questioned in a retrospective study attributed the onset of their symptoms to a definite event, such as a course of antibiotics, abdominal or pelvic surgery, or a bout of gastroenteritis."

So, a large minority of people can point to a fairly definitive starting date for their IBS. I presume that the rest of the patients, if questioned, might be able to point to a period of stress as a possible trigger, but not such as a clear-cut starting date, or they might not be able to identify any kind of triggering factor.

Of course, these figures don't really help us figure out much about IBS, but I think it is useful to point out that so many sufferers date their symptoms back to a defining moment. Heather Van Vorous says in her book Eating for IBS that one theory is that all of these things, the antibiotics or the surgery or the food poisoning or the extreme stress, result in a kind of "grievous insult" to the gut which is somehow remembered by the nerve system.

By this description, IBS is almost Post-Traumatic Bowel Disorder - something incredibly traumatic such as surgery occurs and the bowel never quite gets over it. I quite like that name actually, sounds far more serious-minded than Irritable Bowel Syndrome.