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sad tales: women with ibs-d page three

The tale of...Terese (November 2003)

Well, my IBS started a long time ago, but I never saw a doctor about it for way too long. Right after I was diagnosed with endometriosis and interstitial cystitis I decided to go to the doctors (it was getting real bad). I guess when you have endometriosis, these other problems are very common to have all together. So I have all three of these problems.

The worst case happened on Christmas Eve, it was so bad I sat in the emergency room and since I was so horrible feeling, I could not drink or eat. I was dehydrated, so they stuck me with an IV and gave me an antibiotic. They could not figure why I was sweaty, doubled over, shaking and even throwing up! It was so horrible! What a Christmas Eve.

It is not always really bad, but there is always that discomfort. Stress and certain foods seem to bug me more - curry, milk and yogurt. This is so frustrating!

The tale of...Emily (December 2003)

I have been living with IBS since I was about 12, but it was at its worst in high school. Previously a student with perfect attendance, I missed days at a time because I was too sick and in too much pain to be at school, not to mention the embarrassment of having an IBS attack in a high school bathroom! As things worsened I couldn't even go out with my friends on the weekends.

My weekend nights were spent in the bathroom reading back issues of National Geographic. I lost touch with many friends, and I am pretty sure that is why I never had the chance to date in high school. My parents were worried about me, since I decided that if food made me sick, then I wouldn't eat. I ended up losing a lot of weight, and living off of toast and jello (effective, but not healthy or satisfying).

I went to the local GI doctor, and she was absolutely no help, she told me to stop eating red meat and dairy, and gave me a prescription for Levbid, which did nothing at all. Things went on like this up until my second year in college.

I finally feel that I can somewhat control my IBS... but at a price; I don't eat red meat, dairy, fried foods, acidic fruits and vegetables, coffee, tea, carbonation, chocolate, corn, broccoli and cauliflower, and alcohol (which is very difficult to avoid in college!) among other things.

Even on this diet I still have constant cramps and problems, they are just less painful now. Sometimes I splurge and suffer the consequences, but I wish every day that I could enjoy what everyone else eats! I hope that someday IBS will be taken more seriously by doctors and scientists alike, to help all the people who are suffering now.

The tale of...Reita (December 2003)

I have had IBS for many years. And I really hoped this would get better! Ha! That was too funny. It has if anything got worse! I have been in the hospital, twice in six months. With pain so bad I could not take it! And my back hurts so bad.

After all the painkillers, I would go home after five day stays, still I have pain but not as bad. Except I cannot sit straight up because it puts pressure on the bowel. Riding in the car is the worst. The doctor says the pain is caused from the bowel lower and upper, both going into a spasm. I wish I knew if there are others that have been through this! Please let me know.

I do in fact tend to worry but I never felt enough worry to put me in such pain! It seems that every time I go to the bathroom to empty my bladder, I have a bowel movement whether I need it or not! I feel like I will never be able to hold a job or have a normal life again I need too be well!

E-mail Reita: [email protected]

The tale of...Lin (December 2003)

I have suffered from IBS for ten years. It all started when I had a 35lb ovarian cyst removed (yes 35lbs!) and suddenly had a full blown and terrifying panic attack whilst I was recovering. Both my parents died unexpectedly around this time and the doctor said it was all just stress and grief combined.

However, I then began to get very anxious about everything, I felt like I couldn't breathe, my throat was constricted and I had excruciating stomach cramps. Many times over the following weeks I went to casualty, convinced I was dying! Most of the doctors were sympathetic if uninformative. I was given pessaries in case it was appendicitis, ECG tests for heart disease and numerous blood tests. Nothing could be found so I was referred to a consultant.

They then performed a gastroscopy (camera down throat) and found I had a small hiatus hernia, and a barium x-ray but the tests were clear (neither test was actually that bad, just in case you happen to be referred for one, they sound worse than they are!). I was also ultrasound scanned internally and externally, and a gallstone was discovered. Although they wanted to remove my gallbladder they were reluctant to because I weigh over 17 stone and I wasn't keen either!

After all this, stretching over a year or two, they diagnosed me with IBS...I am currently trying hard to lose weight on a low fat, sensible calorie healthy eating plan and really hope it will help. I do suffer from the usual bowel problems, sometimes I go five times a day, sometimes not for three days. And the pain (I have it now) is in my right lower abdomen, not the left as many say, and it hurts but I can bear it, it's a little like having constant mild toothache, not debilitating but distracting. Sometimes it does get severe but I rest and take painkillers until it subsides.

The main problems I have are the other symptoms, the faintness, nausea, anxiety, chest pains (only last Sunday I ended up in casualty thinking I was having a heart attack!) back ache, muscle pains in my upper left arm and my legs, migraines and feeling scared and 'muzzy' in the head. I am cutting out caffeine and drinking peppermint and chamomile teas and that seems to help, touch wood, and losing weight will help me personally.

Also having a wonderful boyfriend who is supportive helps too but I don't know if this will ever go away, if I can just learn to live with it and not be scared all the time I think I'll cope! I hope so. I'm 42 now and I really don't want to be like this when I'm 52!!

The tale of...Carolyn (December 2003)

Well...I have just finished reading all the sad tales and so now I suppose it is my turn to tell you all of my poop habits. Such a modest illness isn't it?

Six years ago I was diagnosed with IBS and kept going to numerous doctors - all of whom I would now like to go back to and leave a diarrhea pipe bomb on their desks - and they all said the same thing and gave the same advice regarding treatment and diet. Well after suffering for two years I finally got so sick I could barely stand and had lost almost 40lbs. I seriously thought I had cancer and that no one was finding it!

Well, I ended up in the hospital with so much pain in my right lower side and they gave me the wonder drugs Demerol and Morphine - great! The next morning my doctor comes to my bedside and tells me that I have Crohn's disease. So, because they put me on magical steroids within 24 hours I almost went to the bathroom like a normal person and thought 'This is cool medicine.' Now I know how dangerous steroids are after being on them at least a half a dozen times in the past six years.

So four years ago I had a small bowel resection after I stopped responding to the steroids - horrible, horrible, horrible surgery and I went a bit mental I am sure during recovery. So now you would think that I would be feeling oh so much better after the surgery, but I kept waiting and waiting (I am still waiting) for the pain, bloating, diarrhea, constipation, and depression to go away.

I just returned from another magical gastro as I couldn't stand the pain any longer and he tells me that I have probably either had IBS all along on top of the Crohn's or it was just IBS originally and the Crohn's came later, or you are just mental and making all of this up!

I am at my wits' end trying to figure out any of this and I am convinced - more so after reading all of your stories - that the medical profession does not know what to do for us and has no real answers, and that we are supposed to just suffer. Don't you all wish they had it even for one day?!

I get so pissed off and depressed to the point of suicide. I have lost my boyfriend, my job, my schooling, and my house. But I tell my friend 'At least I have my health!' I think if I lose my sense of humor I am sunk. Tomorrow I am going to try to apply for disability - our government doesn't consider Crohn's debilitating so wish me luck with IBS. Ha! I wonder what kind of job I am supposed to get when I have to spend hours a day sitting on the toilet? Bathroom tile inspector I thought or proofreader perhaps...

I am living with my mother at age 39. Did I ever think that would be a reality in my life? Nope...Thank God for family though or I think I would have done something drastic in the time I have been sick. Either I am not emotionally strong enough for this constant feeling of feeling sick or it isn't really there and I am imagining all the pain and diarrhea...

I have tried fiber for the past week and all I am getting is the worst smelling farts that even I can't stand - pretty bad when you can't stand your own. I am on Dicetel - feel better one day and awful the next so I don't think this magic drug is working.

Ate some potato chips tonight as I was getting mighty sick of the bland diet and I am a bit of a compulsive eater - and man I am sorry I ever bought them. Too bad we can't have the odd treat or we have to restrict what we eat - pisses me off! OK I've rambled and complained long enough. E-mail me if you have a heightened sense of intellect and humor and want to trade stories or just share smelly anecdotes...

E-mail Carolyn: [email protected]

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