I have had this problem now for years. Sometimes it's so bad I have accidents. I sometimes have to beg shopkeepers so I can use their loo. Once I did this and their loo had no door, it was completely open to the garden and loads of houses looked over, but I didn't care, I was just so happy not to have to go in the street.
I feel dirty and horrible. I sometimes have to rush, but running can make it worse. Sometimes I have had to sit down on the pavement and wait for the cramps to go and then I can walk a bit more and get to the loo. Maybe adult nappies are the answer, but they won't disguise the smell will they? Oh it's too embarrassing to think about.
I am now agoraphobic and very anxious. I have had back problems which either see me unable to move or I have to walk to ease the sciatica. When my back is bad I am on enough painkillers to bung me up, but they don't last. Imodium doesn't work anymore.
My previous doctor didn't believe in IBS and said it was all in the head, she said everything I suffered from was all in my head. Even though one symptom of vaginal pain was diagnosed as vulval vestibulitis, she said it wasn't and was all in my head. I gave up at that point and stopped going and was depressed for years.
Recently I went to a new doctor, who actually listened to me and sent me for blood tests to eliminate anything else. He even said he thought it sounded like IBS. That day was horrible though, I was explosive many times, I left to go to the doctors and had to run back. My husband took the day off to accompany me as he knows how anxious I get. We got a taxi to the doctors and then I needed to run again. We saw the doctor and it seemed I had nothing left to produce, but it didn't stop the cramps. It's so embarrassing and humiliating.
I am due to go back to the doctors now and get the diagnosis of IBS, but I don't want a repeat of the previous visit. After the cruelty of the previous doctor I get so scared now when I go that the worst symptoms are caused just by going to the doctors.
I want to give up, I really do. I have read some stories here and will buy some calcium soon, I already take calcium and magnesium as I am on the contraceptive injection, but apparently magnesium is bad for diarrhea. So I get to choose between osteoporosis and diarrhea.
I have also read stuff here about increasing fiber, I have tried that and it sometimes works for a month. My doctor said I should reduce my fiber, so we bought a juicer to drink the juice of vegetables and fruits without eating the fibrous pulp. Life was heaven for two weeks and now it has all started again. Any cure I guess will just work for a few weeks, so what is the point?
The tale of...Sue (October 2003)
I have tried all the pills and potions. Alverine citrate seems to help, but I am finding it more and more difficult to cope with the tiredness which comes after a real bad bout of pain. I am taking more and more time off work and am often late.
I feel washed out every day. I feel my excuses for taking the odd days off work with this curse getting weaker and weaker, my work mates have no idea what I am going through every day ie: the suffering. I feel as if my family don't even believe what I am going through.
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. The pain is unbearable, and the bloating makes me look as if I am seven months pregnant.
I have suffered with this for over 18 years on and off, been tested for all different things and now they eventually admit and diagnose irritable bowel syndrome - wow - at least they're telling us something but the rest of the population should be made aware it is an illness and no, we're not all just highly strung, sensitive etc.
Food - well what can I say, sorry I have not got all day every day to sit down and plan every tiny morsel I eat or drink, the IBS though makes you deprive yourself of nearly everything. I am surviving on tea with milk and sugar. I know this is not good for me but at least it's bearable, plain bread, omelets and anything else that is bland.
I wish we could have a simple user-friendly diet, but it seems we have to change our lifestyles completely in order to be able to cope.
The tale of...Deborah (October 2003)
I suppose I've been quite lucky with my IBS. I first got it when I was 16, after a long illness. I wasn't diagnosed until I got to university though, because I was too ashamed to tell anybody, even my parents. Once diagnosed, it made things both easier and harder. The people I had to tell (mostly friends, when we were going out) were sympathetic, and seemed to understand. I also met a couple of other students who both had it.
I had had severe agoraphobia before realizing what it was (the irritable bowel syndrome, I mean) and this didn't go away just because I knew. In fact, in some circumstances it got worse. I also suffered depression every time I had an attack. (This has now happened three times, and I'm hoping that I've finally got rid of it.)
My irritable bowel is recurrent, and unpredictable - I never know what's going to happen next. I get the whole gamut of symptoms instead of just one recurring one. They all happen at all sorts of times. I get the nausea, vomiting, diarrhea, depression, anxiety, agoraphobia, panic attacks, constipation, bloating, wind, indigestion, heartburn, belching, cramps, knotting, some pain (luckily not too much) and all the others too.
It's very tiring. I do try to lead a normal life around it, and I make sure that I always have a supply of medicines for the various symptoms. My life now revolves around toilets. If I go anywhere, there has to be a toilet, or I can't relax.
Scarborough was good, because there were loads of public toilets, but even that isn't enough. I have back problems, no balance (constant dizziness), migraines, period problems, etc so I simply can't rush to the toilet. I have to know that there'll always be one two seconds walk away from me.
My brother came up too Scarborough when I was at university, and wanted to go out every night. He didn't seem to care about the problems I was having (he still doesn't) and insisted that I go out every night. I think he thought he was doing me a favor, but one night he wanted me to go to a nightclub. I hate them at the best of times, and I never go any more.
Apart from few toilets, and the fact that I'm horribly shy, I can't dance and I can't stand up in a crowded room because of my balance. Anyway, he made me do all these things like learn stupid dances, on the grounds that 'I'd have more fun that way'. I didn't. By the time we were ready to go, I was so nervous I thought I was going to be sick.
The evening didn't bring any accidents, but afterwards I spent most of the night in the toilet with violent diarrhea as a result of being so stressed. I had a lecture the next day, and I was exhausted, especially as he wanted me to stay until two in the morning. (I managed to get away at half past one.)
I like to go to the cinema or theater best, as they always have toilets, and as I know I'm going to enjoy myself it doesn't matter so much. I've never had a public accident (luckily), but I constantly worry about it. It's so wearing.
Whenever I go anywhere that makes me even vaguely nervous, I always take two Imodium (regardless of symptoms), try to make sure I've been to the toilet before I go (if I can't go, I panic all the way to the nearest toilet) and wear a pad where possible to avoid embarrassment. It doesn't always help ease the panic, but sometimes I feel OK.
Heat makes my IBS worse as well. I can work - all the work I've done so far has been when I've had IBS, but it means that for the past five years (two of them without knowing it) I've missed out on the ordinary teenage life. I was bullied a lot at school, which makes me extra shy, but even if I wasn't shy then, I would be now. How do you explain to people?
For most people, without IBS, life in the teens and twenties is fun. For me, it can be a nightmare. I've lost out on something so precious, simply because I'm ill and people refuse to understand that or even talk about it.
The tale of...Shari (November 2003)
I've had IBS since I was...born. Honestly I remember when I was young, every time I ate it seemed, I got sick. Nausea, sweating, and diarrhea. I am now 33 and have found that I have good days and bad days (I call them poopy days).
On these days there is no such thing as safe food, anything I eat, even ramen noodles or a well done hamburger (the two things I can almost always eat without worry) will make me sick. The only thing that works is Librax and three Imodium tablets. I take at least two Librax a week, have been for years. It makes me tired, but it's better than sitting on the toilet for literally hours a day.
Luckily I work in a place without a lot of people, and when I'm traveling I simply make sure I take a Librax no matter how I feel as a preventative measure.
The biggest problem is the nausea that has started to come with it. I have a pitcher in both of my bathrooms, I tell people they're for rinsing off my dogs when I bathe them (I have three dogs) but it's so that I can throw up while sitting on the toilet. I am hoping that it won't get significantly worse as I get older, but I know it will. And that's my story.
The tale of...Tracey (November 2003)
Where do I start? IBS has finally won. After years of running to the toilet at understandably anxious moments, like boarding a plane or going on a fairground ride, I then experienced the next stage. I ran to the toilet at almost any trivial moment, especially if I knew I couldn't get to a toilet
(the mind is a powerful tool!).
I then started to suffer IBS symptoms due to the trauma of my bowel movements. I suffered from the 'labor' type pains, bloated belly, slimy
stools, belching, etc, it was so bad I actually thought I was dying from cancer. A locum doctor's answer was mebeverine, he might as well have
written out a prescription for sherbet lemons for all the good it did me.
I knew I was the prime candidate for IBS, I had two lively boys, a new job on the road whilst swotting towards a new qualification, a clean house and no ironing pile. I thought I was wonder woman, and could keep going and going (how wrong I was).
It all took a turn for the worse this Christmas, suddenly during the starter at my work's Christmas meal (which I, wonder woman, had organized!). I started to suffer from chest pains and had trouble taking a breath coupled with large amounts of sweat.
I went to the toilet (I had already checked them out earlier!) and was very confused as to what was happening to me. The next day the same thing happened in my house when my sister and brother-in-law visited. Before they visited I told myself that I hoped I wouldn't suffer the same feeling as the night before and lo and behold I did.
I then worried about worrying and feared fear. Within just two days I was too frightened to venture outside and receive visitors in my own home. On Christmas Eve, my mum, God bless, took me to the doctors where I saw my own doctor who said I was suffering from panic attacks and anxiety due to the symptoms of IBS.
He prescribed amitriptyline which has calmed my stomach down and resulted in my first 'normal' bowel movement for ages. The drug has also acted as a 'chill' pill and I am trying to chill out a bit more and not worry about the pointless things in life. At the moment I suppose I have a happy ending but IBS has taught me to never take anything for granted, it can happen to anybody at any time.