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sad tales: women with ibs-d page eight

The tale of...Mer (May 2004)

Hi all. I thought I was alone until my sister was looking at this site when I was at her house last night. I've been to three doctors, who know nothing in my opinion, and they all say the same things...lose weight, (I barely eat), stop smoking (no!), more exercise (I have two young children, clean, cook, run errands - enough said), the list goes on, and none of it causes the painful, stabbing-like stomach cramps that have me doubled over, the liquid that calls itself a bowel movement.

All this started when I was 22, right after I had my first child. Twenty hours of labor, four hours of pushing did major damage to my system, I am sure of it, even though my doctor told me everything would go back to normal in a few months. Seven years later and I want to find that doctor and punch her in the stomach, just to show her what pain I'm in because of her ignorance. If I only had a C-section sooner, I wouldn't be where I am now.

I spend more time in the bathroom then anyone I know. At least one night a week I will sleep on the toilet letting nature take its course.

As far as my diet, I have cut out many things, for weeks or months at a time, just to bring them back and take something else out when it did nothing. Although, I added clams (white clam sauce over whole-wheat pasta) twice or three times a week. And, now, I only have these bouts once a day, around dinner. With little pain now and then. I think it's the high iron count in the clams. I tried taking iron pills but they just made me sick, I don't need it coming out of both ends so I stopped taking them.

My husband is now starting to understand, or at least is starting to learn live with it. My mother believes it's all in my head, or cancer (God forbid). My kids are used to it, but shouldn't have to live with Momma going to the bathroom and being in there for 20 minutes at a time. At least I'm a stay-at-home Mom, I always have a bathroom nearby, but still ...this is no way to live.

I have no advice for anyone. I really don't know what would help other people, considering I have heard many times that 'IBS is constipation, not diarrhea', even though I have read proof of it being both. All I can say is don't take the advice or words of people who do not believe your problem IS a problem. They will never understand.

And to the people who smoke: if you're like me, never quit because that's the only relaxation you will ever get.

The tale of...Amy (May 2004)

I feel like having IBS is destroying my life. My boyfriend and his folks think I'm a hypochondriac. They told me the doctors just tell me what I want to hear. That's stupid, I want to hear that it's going to get better not that there's nothing they can do. Four doctors have told me I just need to cope with it. I'm also told don't eat milk, bread, spicy foods, salads, etc.

I feel so sick, nauseous and exhausted. Sometimes I have to go up to nine times in six hours, sometimes every 20 minutes. Work is a nightmare. For those of you with office jobs thank God. I work in a factory on an assembly line. My supervisor is the most hateful woman on the earth and nobody cares. If I lose my job that means moving back home. I just don't want to do that.

My boss delights in embarrassing me at work by announcing to the whole line that I have a note and can go to the bathroom when I want. That is against company policy. She is only allowed to tell my foreman. When I reported this I was told they keep her because she gets the job done. She was yelling it to my co-workers across the line. She also took my job from me the day after I had surgery and put me in a much harder job stacking boxes. When I complain guess who gets moved? That's right me.

I would like to know what kind of jobs are available for people with IBS. If things don't get better I will have to start working from home either using my phone or computer. I'm sick every day, I just seen to get worse. I guess I better work on my typing. Sometimes I fight the sickness and other times it's the embarrassment.

I feel robbed of my life, of all the times I want to go out and am just too ill, of all the times I go to a good restaurant and have to cut short the night because I'm sick. I feel sorry for those around me who have to put up with canceled plans, but mostly I feel sorry for me because the factory is working seven days a week now and it's mandatory. I expect to lose my job soon having too many marks against me, but you never know it all may happen for a reason.

I keep on hoping for a cure. I've tried a lot of them but it always comes back. I'm glad I have never had an accident in public but I think the fear may turn some of us into recluses. I don't believe stress causes this. I've had it on some of my happiest days. I think it's a doctors' cop out.

My last time I cornered my doctor. I said I'm miserable, what causes this? Then he looked at me and said honestly we don't know. Some doctors say stress but that's speculative. I believe that because Crohn's and colon cancer run very strong in my family and we think it's caused by heredity.

E-mail Amy: [email protected]

The tale of...Angela (May 2004)

My name is Angela, I am 23 and I have had IBS since I was 10. I stumbled upon this site for the first time tonight and I am absolutely amazed at the sheer volume of us who are living with this condition. I have lived with the pain from this condition for 13 years and I had no idea that so many people were suffering from the exact same symptoms and intense pain as I do. I had always felt like I must be the only one in the world who lives in this kind of misery.

After 13 years I have tried everything. Three years ago I gave birth to twins, and I can honestly say that there are some days where the pain from IBS is worse than the pain from having my children.

My IBS has gotten so bad in just this last year that I have lost 45 pounds because I am just in so much pain I can't eat and I now also suffer from horrible panic attacks. But I came to a breaking point last November on my 23rd birthday.

I was feeling horrible as usual, but I had not left the house in a month and I needed to buy some things for my kids. So I just tried to 'suck it up' and my husband and I went to Wal-Mart. After being there for only 10 minutes, I began to feel 'the pain', which in turn led to a panic attack. I went to sit in the car as my husband paid for our items and when he came out I could hardly breathe.

The more pain I had, the worse it made the panic attack, and then the stress from the panic attack made my stomach pain worse. It was a circle that landed me in the ER that night. I decided I couldn't live like that anymore. My IBS pain had ruined some of the best days in my life. It controlled how I lived every moment my life. But after that day in the ER last November, I decided to take control back. I have finally found four things that help to control some of my pain.

First - I only drink water now. No soda, no Gatorade, no coffee, etc. This has helped tons! People with IBS focus mostly on what we eat, but what we drink can be just as important.

Second - I don't eat anything with artificial sweeteners in it. You would be amazed at how many people have digestive problems because of artificial sweeteners in foods and drinks and don't even know that's what's causing it.

Third - I don't eat any fast food at all. If I even touch any fast food I'm sick for three days.

Fourth - painkillers. Yep, good old Tylenol, Advil, ibuprofen, etc. A lot of people never think to take them for IBS. I didn't for 13 years! Then one day I had PMS cramps while I had an IBS tummy ache and I took some Aleve for the cramps. Well 15 minutes later I had realized that it had relieved the pain from both. I have found that for me, Aleve works better then Tylenol. It still amazes me to this day that I never thought to take painkillers for this pain.

I still have to watch what foods I eat and I still have pain some days. But I don't have pain as often, I don't have panic attacks any more, I don't feel nauseous all the time, and I don't feel tired all the time. I have been able to get so much of my life back by doing those four things in the past few months.

E-mail Angela: [email protected]

The tale of...Jan (May 2004)

I began having symptoms of IBS (diarrhea type) in my 20s. We were told that our community well was contaminated with giardia which may have started it off. Over the next many years I became allergic to many foods, and eventually got down to only two that wouldn't cause internal hives and diarrhea. I tried different medications and had reactions to all of them, too, including prednisone, so I kept trying to find my own answers.

I had studied nutrition and biochemistry in college, so I had some background in the field. I began reading scientific articles and tried to sort out anything that might give me clues. I did find out that I have abnormally high levels of prostaglandin E1 (PGE1). I spoke with a researcher to see if he could give me any leads to possible natural treatments. He suggested a form of lithium which I tried in very small doses but had too many side effects. But I felt that I was on the right track and kept looking.

I had read that a cofactor in the production of PGE1 is zinc. I theorized that if I could get my zinc levels down maybe it would help. I finally found some information on an amino acid called histidine which has an affinity for many metals including mercury, nickel, iron, calcium and zinc. I started taking it and within just a week the diarrhea had disappeared for the first time in almost 20 years and I could eat almost anything with no reaction. It was just amazing.

I experimented for several months with the dosage and found that I did best with about 250mg per day along with 15mg of zinc to be sure I didn't get depleted in zinc - if you chelate out too much zinc your nose will get stuffy. (Also too little zinc affects histamine release which will in turn diminish sexual response.) If I took a slightly higher dosage I could even experience what it was like to be constipated for the first time in ages!

Because histidine both transports and chelates out zinc, it seems to be very effective in moderating high prostaglandin levels that cause over-contraction of the smooth muscle and excess cytokine production in the intestines. I have been using it for 10 years now with great success. The only time I experience the IBS symptoms is if I quit taking the histidine for a week or so and eat a food that used to cause allergic reactions.

I read through the stories on the site, and it brought back so many memories of embarrassing situations. It's wonderful to be free of the symptoms...no extra changes of clothes, no fear of going to a football game! A nice side effect was my headaches that had plagued me for years also disappeared.

I am a nutritional consultant and have recommended this treatment for several of my clients. One lady with IBS was able to get off all her medications for the first time in years and take a vacation to Mexico. It may not work for everyone, but it's an inexpensive experiment and worth a try. The brands I recommend are Tyson, Montiff or Jo-Mar.

Hope this is helpful to someone, and to all of you, I wish you success in finding relief and a better quality of life.

E-mail Jan: [email protected]

The tale of...Sarah (August 2004)

I was told I had IBS when I was about 15 but have probably had it since I was little. My current doctor is completely ignorant and just tells me that what I'm going through is due to the IBS but offers no solutions. Like most sufferers I wake up in the morning wondering what sort of stomach day will it be. Is it a heartburn day, diarrhea day, constipation day? Some mornings I wake up with a funny metallic taste in my mouth and those are the days I know to get right back in bed.

I am now 23 and the list of foods that make me sick is growing all of the time. I don't understand how one day I can eat a peanut butter sandwich, but the next day it sends me running to the bathroom. The scariest problem is the nights I am awaken out of a sound sleep only to have to run to the bathroom to have uncontrollable and painful diarrhea plus shaking and sweating for an hour or two. Those are the nights three Imodium tablets can't even help me.

I am seeing a gastroenterologist for the first time in two months. Hopefully he can offer me some relief. If anyone out there has experienced the same scary night-time episodes and has found a way to deal with them please feel free to let me know! For now all I can do is deal with attacks when they hit and try to ignore the people who think I do this for attention or that I'm making my symptoms up. I would never wish this problem on anyone.

E-mail Sarah: [email protected]

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