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sad tales: women with ibs-d page twenty-three

The tale of...Mary (August 2009)

My name is Mary and I live in Florida. I started having symptoms after the C-section birth of my twins at the age of 20. I am now 53. I finally went to a gastroenterologist when I was around 40. After several tests I was diagnosed with IBS with diarrhea and told to take Imodium if it got too bad.

I have had a lot of the problems other sufferers have had. I have had 'accidents' in public, although I was able to make it into a stall but not quick enough to pull down my pants! I have pain so bad that it felt like going through labor (and I know what that feels like due to a 27-hour labor with my first child). Bloating, gas, stomach rumbles, all are familiar to me. I have had to try to go to sleep with a beach towel between my legs to I wouldn't go on the floor running for the bathroom (I found this solution after a couple of messes).

I pretty much know that about 30 minutes after I eat, I will need to go to the bathroom. So I either use the restroom at the restaurant, or if we are close to home, I can usually make it. Sometimes when it has been particularly bad I have had to cancel lunch or shopping with my sister. She understands completely, because we both have IBS, as did our mother.

And yes, I always know where the nearest bathroom is, and get there at the first sign of cramping. I've found I can't wait to see if it is an attack. I automatically assume it is, and I am rarely wrong. I can't tell you the number of times I have been on the phone and had to say 'Gotta hang up quickly now! Gotta go to the bathroom'. And then run like hell. I know if I have a cup of coffee I will pay for it for the rest of the day or longer.

I do get tired of sometimes going to the bathroom five or six times a day. Especially when it seems I wipe and wipe and keep getting leakage. Vaseline seems to help with the 'sore butt' after too many trips. Usually my bouts last four or five days. If I take Imodium it usually works after two doses, but then I am constipated for three or four days. Then after the first or second BM, the diarrhea starts right back up again.


The tale of...Salena (August 2009)

In May of 1999 I had my gallbladder removed and I've been sick ever since I woke up from surgery. It starts as severe period cramps, sweaty, shaky, then I have to go to the bathroom with diarrhea. I'm so tired of dealing with this. While I'm going to the bathroom I start feeling like I have to throw up so now I'm puking and pooping and sweating at the same time.

When I'm finally done in the bathroom I have really bad spasms above my belly button, right between my ribs. I have had it last up to four days and then I have to go to the hospital from dehydration and they have to give me Dilaudid to stop the spasms. I have also lost over 60 pounds.

This all starts as soon as I wake up in the morning. and it sometimes will also wake me up. People keep telling me it's stress but I can't figure it out. It started when I was 20 and now I'm 30 and need help, so please anyone does this sound like anything you deal with, and what can I do to control it?

E-mail Salena: [email protected]


The tale of...Dale (8 August 2009)

I am a 65 year-old female who has had IBS-D since I was 27. The impact it has had on my life has been horrific. Raising four children as a single mom and working full-time had me in a constant state of anxiety; fearful that I would lose my job due to my condition and the respect of my children when I couldn't attend their school or social events.

This vicious cycle continued until I was prescribed Lotronex. What a miracle! I finally had a life and I was so happy. Then, it was taken off the market, only to be reintroduced at a cost of $400 a month. My pension is $420 a month; there's no way I can afford this medication.

I have, after all these years, met a very nice gentleman who has only seen two episodes of my illness. I make excuses on extremely bad days not to see him because I am afraid he will run the other way if he knows how truly devastating this IBS-D is. In recent years, I have had public accidents which are so demoralizing. Will there ever be a generic for Lotronex or will it ever become affordable?

E-mail Dale: [email protected]


The tale of...Jay (5 September 2009)

It's great to meet so many people who know exactly what I'm going through - I just wish it was under happier circumstances. When you're crunched up on a chair or in bed with spasms running through your body, nausea kicking at the back of your throat and the feeling that your entire digestive system is about to fall out your body, it's comforting to know I'm not suffering on my own.

I was diagnosed with IBS when I was 16, about five and a half years ago. I had a bout of gastroenteritis and from that day the pain came, the constipation, the running to the loo, the feeling of not having emptied your bowels. My parents didn't believe that there was anything wrong and I had my doctor refer me to a specialist who gave me an endoscopy (while I was wide awake - worst experience of my life) and gave me several ultrasounds and a barium enema. Finding nothing wrong with me, he said that I had IBS since my symptoms fit his chart (yes, he had a big blown-up chart on his wall) and from then on I've suffered in relative silence.

My partner has seen me in tears with the pain, at home, in shops, in restaurants. It doesn't help that I also have bipolar disorder which already makes me feel completely depressed and I'm also an emetephobe (fear of being sick) so that doesn't help either. All in all, I have the pain five days out of seven, mostly late at night (around 10 or 11 normally) and constipation every now and then. My gut rumbles like it's full of wild curs half the time and the pain is like being stabbed repeatedly (and I've been stabbed so I can liken it to that ha ha).

I've found nothing that can help, but alcohol makes it so much worse. Nothing else seems to make it better or worse but eating is like a game of Russian roulette...am I going to be in pain after this or will I have a good day? I have found just one thing that makes the pain slightly better, and that's ice cold water. It acts by numbing your insides. Don't know if it will work for everyone but it's worth popping a couple of bottles in the freezer for an hour before drinking them. It makes the pain more comfortable. Well, I think I've driveled on for long enough so thanks for listening and thanks to the host for a great site!

E-mail Jay: [email protected]


The tale of...Cindy (5 September 2009)

I have had IBS-diarrhea for several years and I have never found anything to help much. I'm trying different foods. It is getting to the point where Imodium does not work as well any more. I'm afraid for my job. I have been late to work because of the diarrhea - I drive 50 miles to work one way. Sometimes in the middle of the day, especially after lunch, I'll suddenly have to go and will end up spending over an hour in the bathroom. I have fears that I won't make it to the bathroom at work, which seems to make the pain and cramps worse because of the anxiety.

I have had accidents. The first one was when we had gone shopping and were on the way into the store. All of a sudden I had gas, cramps, and starting messing myself before I could even get to the door of the store. I was so embarrassed. I went into the bathroom, cleaned up as well as I could and went back to the car. We went to a discount store then and my mom bought me something to wear, a bar of soap, towel and washcloth and brought them to me in the bathroom so I could clean up.

I always carry an extra change of clothes to work with me in case of problems, along with soap etc and I always have something with me when we go shopping. I don't go out much because I'm afraid to. In fact, my brother passed away in June 2006 and we had the family meal before the funeral. I wouldn't eat for fear of getting sick, and then nearly passed out at the cemetery from not eating.

I'm trying Align. It's the first thing I have seen that says it helps both the diarrhea and the constipation (I occasionally have constipation but mostly the diarrhea). If it helps I will let you know.

Update on Cindy...

I have been taking the Align for over a month and it is really helping. I have not had as many problems. My doctor also found I have a thyroid problem and a very low B12 level. She says these also contribute to problems with diarrhea. So maybe all of it combined is making my IBS worse. I'm glad I found her. She is willing to listen and willing to try to help! With her and the Align I feel so much better!

E-mail Cindy: [email protected]

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