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something to talk about

by Sophie Lee

Have you ever listened to colleagues and friends whinge about their ailments and wish that you could do the same? All those people asking for sympathy for their bad backs, bad knees, bad headaches, and there you sit in silence with your stomach that feels like a lead weight, because you know that people don't want to talk about bowels.

It seems to me that a lot of IBS sufferers actually have to suffer twice over - once because of the actual pain and discomfort of IBS itself, and then a whole new bout of suffering because bowels and toilet functions are not considered suitable topics for conversation.

What this means is that a lot of people suffer in silence, and don't get the sympathy they deserve. When they do pluck up the courage to 'come out', people's reactions can be very insensitive. The worst reaction I have ever experienced was when a very nice man actually laughed when I said I had been crying because of the pain. He wasn't being nasty: he genuinely thought I had made a joke by pretending that this mild 'irritable' condition could cause so much suffering.

The bowel taboo can also mean that IBS sufferers find it difficult to meet people with the same condition. When I started to read about IBS, what I really wanted to know was how other people coped with this illness. Did it make them feel the way I was feeling? And then, shortly after my worst ever bout of IBS, when I was trying to find things to cheer me up, it occurred to me that a website devoted to the experiences of IBS sufferers would be a way to find out more about others' experiences, and at the same time maybe help other sufferers feel less isolated.

What the internet can offer is the chance to be completely honest about your symptoms and say things you wouldn't dream of admitting in real life, whether it be the story of how you were caught short on the underground or the time you went two weeks without a bowel movement. And you can be as descriptive and graphic as you like, comparing all your symptoms without worrying that people will react with disgust.

I set up the website, which is called IBS Tales, in June 2001, and sufferers started to send in their stories. The majority of people I have heard from come under the ‘still suffering’ category - they are still trying to find ways to deal with their condition and make their lives a bit more bearable. One long-time sufferer writes: 'You're sitting on the toilet waiting for the next bout because you're too exhausted to keep going back and forth from bed to bathroom. After more than 62 years with diarrhea-predominant IBS I've set up my bathroom so I can at least have some support to keep me from falling off and cracking my head on the floor, or door, or cupboard.'

She goes on to say: 'During the 90s I was blessed with the ownership of a completely self-contained motor home. Such joy, you can't imagine, and freedom! I carried my toilet with me!'

Another sufferer who is clearly having a hard time says: 'I struggle to get to work and soldier on with the pain and tiredness by taking the alverine and various painkillers. I spend lots of weekends in bed just resting. It's so depressing.' Someone else who suffers with constipation describes her own symptoms: 'It wasn't until I started talking to my friends that I learned you're actually supposed to 'go' once every day. I go once every 7-10 days, maybe longer. Food is my enemy.'

One section of the website is dedicated to things that non-sufferers have said to their IBS friends. After I had been told such gems as 'You're just going to have to snap out of it', I thought that someone should write these things down for posterity! One sufferer writes: 'My co-workers say 'There is no such thing as IBS, you're just trying to get attention.' This really hurts and angers me. I can find other ways to get attention rather than from IBS!'

Another writes: 'My Mum asks once every few weeks 'So how long does this last then?' I say: 'The doctor said you can have good and bad years - so he pretty much thinks you have it for life.' My Mum says: 'Are you sure?''

Symptoms such as incontinence and wind can be a large part of an IBS life as well, and so IBS Tales also has a section devoted to sufferers' most embarrassing moments. One person writes: 'A few years ago I was driving when IBS hit, even though I had made a point of using the bathroom just before we left home. Just then the traffic came to a dead stop.

The pain and cramps came in ever more intense waves. Finally I climbed into the back seat of our van and squatted on the wastebasket into which I had stuffed a plastic bag. We were stuck in that traffic jam for at least an hour and I really don't think I could have lasted. My poor son was mortified.'

Another sufferer explains: 'I was barely five feet from the cubicle when it happened. I was stuck in the toilet for an hour with my lower half of clothing completely soiled - pants, shoes and socks, everything. All I could do was cry.'

Reading about these experiences can help people to feel less alone, but it can also be a bit depressing - all that suffering and pain. For this reason there is also an archive of happy stories, for people who want to write about how they have learned to manage or control their IBS. From the stories in this section it is clear that there is no one way to treat IBS - but then we knew that anyway! Sufferers have used dietary management, supplements, hypnotherapy and a whole range of treatments to gain improvements in their symptoms, but all have found a way to stop IBS from ruling their lives.

All contributors to the site can choose to have their e-mail address displayed by their story, so that anyone who identifies with their experiences can get in touch with them directly. There is also a discussion board so that visitors can ask each other questions and get support. From my own point of view, the site has certainly helped to take my mind off my stomach. I still have IBS, of course - but now I have proof that a lot of other people feel exactly the same as I do, and that's a great comfort.

For my next project, I'm planning an ebook of IBS experiences, and maybe even a printed book as well. And then there's IBS Tales: the movie. I wonder if Tom Cruise can act constipated…