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The tale of...Tay (January 2004)

Back in my mid-20s I suddenly developed a very painful and frustrating episode. I became constipated, which alternated with 'the trots', my intestinal tract would howl and spasm...and the ache! Oh Lord!

It finally got to the point where I was convinced I was dying. My mind would flick through all the possibilities, most primarily...cancer. Finally I went to the doc who after much poking, prodding and careful listening said 'You have IBS'. (I had absolutely no idea what he was talking about.)

I kept pointing to my left side and saying...I have a dull ache here. And about an inch below my belly button over here on the left, it really hurts. He just shrugged and replied 'That's what they all say.'

Still not certain he was right I continued on: 'I have huge amounts of gas. I belch a hundred times a day. I can't wear anything tight around my waist, I feel gas bubbles bursting in my colon, if I lay on my left side at night, within seconds my intestinal track begins to spasm...heck, even my back aches sometimes. 'Yep', he said, 'it's IBS.'

After a lot of talking, he finally convinced me I wasn't dying (that was the good news). The bad news was that this was a very difficult 'chronic illness' to treat and I would never truly be free of it.

At the start he gave me several different forms of medications. None helped (most were anti-spasmodic), although over time it did 'go back to sleep'. I then began to experience 'flare-ups' about every two years. And I'm having one now.

This episode started back at the beginning of February (it's now the end of April). I had no warning...just woke up one morning and boom there it was (the howling bowels, the constipation, the intestinal contractions.) In fact, right now, as I'm sitting here writing this, I'm on a med called hyoscyamine although it's not doing any good. My left side aches and I have soreness just below my belly button...(sigh).

My husband, who has become familiar with this problem is trying to be helpful, but unfortunately, those who do not walk in our shoes fail to understand just how difficult it is to live with. He tells me 'Stop thinking about and it will go away. The more stressed you are the worse it becomes, so relax.' I ask you, how can I, when I feel this pain every moment of the day? It's relentless, isn't it?

Anyhow it's now been three months since this all began again and frankly it's starting to depress me. I can't help but think...'There has to be something truly wrong...a blockage, cancer...inflammation'. And yes, I've talked with my doc and he's repeated the same things he's said a hundred times before. 'Be patient...it will go away eventually and then you'll be fine again.' Yes, I know...but when is eventually?

Every time I bend over I belch. If I happen to sit cross-legged or curl up on my side, I instantly begin to spasm and my muscles contract. I feel like every muscle in my lower stomach is suffering from tendonitis because it's constantly being pushed and pulled...and I'm supposed to forget about it?

I have yet to find a drug that really seems to ease the discomfort. Occasionally I do use Valium and truthfully that seems to help the most. Not only does it relieve the painful spasms, but it also decreases my anxiety level. But...there's also a 'sticking point' to that drug. It's addictive and do I really want to take that kind of drug long-term? No, I really don't.

Anyway, for those of you who are suffering like I am, please know I understand. There are days like today, where I would give anything to climb out of my skin and run away. Yes, I know eventually it will ease up and then I can 'live' again, but until that time life can be a living hell.

The tale of...Rachel (January 2004)

Oh gosh, where do I start? I was diagnosed with endometriosis a few months ago. Shortly before that I had problems with horrible frequent urination (interstitial cystitis - IC) and now have pretty much been told that I have irritable bowel syndrome (have had these stomach problems for years now).

After doing some reading, I learned that when a woman has endometriosis it is common that these other problems (IBS and IC) go hand and hand. So I'm the 'lucky' gal who has all three of these problems, talk about pain!

I feel like I can't eat anything! I visited the emergency room once on Christmas Eve because of waking up at about 4am with this unbearable pain. The pain was so intense, I could barely walk and was ready to fall over. The doctors found nothing and just passed it off as just some type of viral infection. Since I was dehydrated, all they really did for me was stick me with IVs and give me some kind of antibiotic for nausea. They sent me home and told me to drink a lot of fluids.

I found that Thai foods hate my body, especially anything with curry in it! I also think coconut milk sends me straight to the porcelain throne. The strange thing is that almost all of the foods that are listed as 'bad' for irritable bowel syndrome, I don't eat anyway. I actually eat very well (being a runner, I watch what I eat), I never put caffeine in my body (I hate coffee), don't eat meat, don't eat fatty foods, no fried foods, etc...However, I still get horrible bouts of IBS.

The tale of...Pankaj (January 2004)

I was diagnosed with irritable bowel syndrome about a year ago. Two years ago, I acquired Typhoid, and from then on my digestive system has driven me nuts. Add to that, my blood pressure has really gone down, it is 90/60 right now. I feel dizzy most of the time. I am 26 years old. It is tough to get by each day. Recently I got a job but had to leave it just after one day. I am very weak. Currently I am on Librax. I am also going to yoga classes.

The best thing about yoga is it helps to keep your mind on track and after a session, you really feel light, like you are on top of the world. But again in the afternoons, mostly, there is indigestion, occasional diarrhea, pain, etc. But it is not daily. Doctors say 'Oh, don't worry, it's all in your head'. Hey, but I guess they will change the way they think when they get IBS.

I have tried ayurvedic medicines too with slight relief. If anyone's got suggestions to increase blood pressure and resolve this IBS and has some of the same symptoms, please mail me.

E-mail Pankaj: [email protected]

The tale of...Fiona (February 2004)

I had just turned 15 and was taking my mock GCSE exams in December of 1988 when my symptoms started. The terrible wind and rumbling noises seemed ten times worse when sat in a silent room with 50 people sitting exams for sometimes three hours at a time. After the first experience I thought it was just an upset stomach and once I'd been to the toilet I'd be all right. I'm still here and still suffering.

I found your website the other day at a time when I was feeling particularly low. I am about to start a new job and of course the main task of my first day will be to locate all the ladies toilets. Some of the stories I have read on your site have made me realize that my symptoms (alternating diarrhea/constipation/spasms/wind/pain) are not as bad as some people's.

But one thing I find difficult to live with (and this is getting worse, not better) is the fear of an attack happening even if I start the day feeling OK.

After the problems didn't go away once my exams had finished, my last few months at school were terrible. I used to starve myself some days thinking if I didn't eat anything I wouldn't need to go to the toilet. But of course it doesn't work that way. I left school and once out of the restricted classroom scenarios I thought I would be okay. But my parents insisted I went to college and that meant two more years ahead of me.

I didn't spend too much time studying whilst at college - I spent every day and night worrying about what would happen if I had an attack. I hated sitting in the classrooms or lecture theaters with people close to me and spent many an hour with my legs crossed worrying over the rumbling noises my stomach made and trying to deal with the constant need to pass wind.

I couldn't tell anyone what I was going through. I just find it very difficult to talk about, embarrassing most of all. I failed most of my exams at college and told my parents that I wasn't interested in uni. They were disappointed but there was no way I could put myself through the stress of another three or four years of sitting in classrooms and sitting in exams. I need to be able to go the loo when I want and not just because it's break time!

So I started work and with the stress of having to sit in classrooms all day gone I thought I would be okay...how wrong I was.

I enjoy working and socializing with people at work but the worry of my IBS is very depressing. I suffer from claustrophobia (as a result I think of feeling trapped in the classrooms as a teenager) and now, when a manager asks for a private word about something and wants to go in a meeting room, I have a panic attack.

I walk into managers' offices/meeting rooms and my heart is beating so rapidly and hard against my chest I feel sometimes it will explode. The fear of being in a room with someone/some people where I can't just get up and leave if I need to, is ruining my life.

The constant worry is on a par with the symptoms of my IBS and sometimes I think I'm going mad. Sometimes I look back to when it started and think to myself, if I knew 14 years ago that I'd still be suffering now, would I still be here? I have recently been made redundant and have had to sit through several interviews in order to get another job. One interview was at 2pm and after getting up at 8am and eating only one piece of toast I was in and out of the bathroom all morning.

Stress is definitely the main factor in my irritable bowel syndrome but it is a vicious circle. I panic if I have to attend a meeting or go somewhere where I won't be able to go to the toilet right away if I need to, and this panic brings on my IBS. So I try and relax and not panic and eat all the things I'm supposed to and stay away from the things I'm not and then sometimes I feel quite alright and I'll go into the meeting... and then have an attack. You can't win.

I am sick of feeling sick with worry and often have to remind myself of the good things in life. I have a wonderful fiance who knows about my problems but, as with a lot of non-sufferers, he thinks if I just forget about it and don't worry about it, it won't happen.

I have only ever told one other person about my IBS - my boss from the job I just left. She was very understanding but the only reason I told her was because I am leaving and don't have to face her again. There was one final meeting she wanted me to attend and I was suffering badly that day and just told her I couldn't go to the meeting and why.

I now wonder if I should have told her earlier and perhaps I should be more open about it in my new job? Would it make a difference or will I just feel even more self-conscious of people counting how many times I go the toilet each day?

As for doctors, I am still working up the courage to go and see one. You might find that crazy after so many years of suffering but I am so mortified and embarrassed by it that the only way I can discuss it is in writing.

Thanks for putting this site on the web and thanks to the other sufferers who have shared their story. The buzz I get from reading them and realizing I am not alone in this is incredible.

The tale of...Karen (February 2004)

I just discovered this website and just reading your stories helped me. I have had IBS since childhood! I can remember sitting on the white throne groaning and crying and then having to get up and carry on without having been able to go. Yep! The old constipation! It would get so bad that my mother would end up having to give me a soap water enema.

The irritable bowel syndrome (even though I didn't know that's what it was at the time) continued off and on and then after I was married and gave birth to my first child it got progressively worse! I would have rectal pain and severe cramps on my left side and alternate constipation and diarrhea. When I was having an attack, anything with tomatoes would give me the trots.

I finally went to the doctor and he gave me the barium enema and sigmoid tests but didn't really tell me anything. I was 22 and thought I was dying! Then the symptoms would just mysteriously go away.

I changed doctors when we moved to another state and the next time my IBS flared up I saw him and got the whole gamut of tests again. He was the one who finally gave me the diagnosis of IBS and assured me that although disruptive and painful that it was not life-threatening. For the last 20 years I have gone to him when I have had flare-ups for that reassurance. Having a caring doctor seems to help a lot.

Two weeks ago I started to have another flare-up and have been miserable. I have had rectal pain and pressure and cramps on my left side along with gas, bloating and some diarrhea. I went in yesterday to see good old Doc B again and he thinks it's IBS again but since I turn the big 50 next month he set me up for a colonoscopy. Thrills! He also gave me some Bentyl and more reassurance.

I took some pepto-bismol caplets when I got home and it seemed to help. Today I still feel crampy and sore but no diarrhea or constipation. If IBS could speak I guess it would quote Arnie S and say 'I'll be back!' cause it is always in the wings waiting to spoil the quality of your life.

E-mail Karen: [email protected]

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