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Discussion Starter · #1 ·
As I have posted recently, IBS has thrown me into a tailspin of anxiety and depression. My councelor is very familiar with IBS but would like some "inside" information - from those of us who live it every day.Please respond with information you would like others to know. Please help me explain how it effects our lives, what has worked, what hasn't, and the way it makes us feel.She is a consumate professional and I believe she has helped me and will help others.Thanks,SouthernBunny
 

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1. How it effects my life: Changed my life for the worst. 2. What has worked for me: Immodiium3. What has not worked for me: Lotronex4 How does it make me feel: I feel like I'm always worried about how my stomach will react. I feel like everything I do (or don't do) revolves around my stomach. Hope this has been of some help, SouthernBunny
 

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I have been diagnosed with IBS for 25+ years. It nearly drives me crazy and controls my entire life..I would do anything to be rid of it. I just started Lotronex last week. I am using 1 pill every other day. I am 95 pounds and can't seem to tolerate any medecine as well as some can.I have a dinner to go to out of town tonight and I am a nervous wreck. I would prefer to be "safe" at home. Because the medicine isnew to my system I don't know what I can expect from dinner. I tried Donnatal extentabs in April. My pain stopped for 10 days and everything was fine. Suddenly, the cramps were back and my "D" was worse than before. My dr. then suggest Lotronex. I was sypmtom free for one year taking LIBRAX in the 70's. Then we started our family and I couldn't take that.Since then I have tried to take it again, but it keeps me soooooo wiped out that I can't function. Also on the Donnatal, I was sooooo sleepy. I found this BB a week ago and it has been a lifesaver just knowing I am not alone in this.GOOD LUCK.
 

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How does IBS affect my life? That is an easy question. It CONTROLS every aspect of it. It robs me of enjoying my life. It not only wreaks havoc on my intestines, bowel and stomach..it screws around with brain my also. Every single day revolves around bowel movements, lack of bowel movements, pain, gas, bloating (which affects how I dress). I hate to plan to do anything or go anywhere for fear of the IBS acting up. Even though I have the C type, I have to know where the bathroom is..because if and when I get the "urge", I gotta go right away. God forbid if I can't get to a bathroom right away, the "urge" goes away then I am more miserable. Of course this "urge" always comes at the most inopportune times. It affects what I eat, when I eat, how much I eat. For instance eating usually starts the gas rumbling and because I work and cannot afford to have embarrassing gas at work, I simply cannot eat all day long until I get home. IBS may not be life-threatening, but it threatens every aspect of your life and robs you of enjoyment of life, which "normal" people take for granted. Unless you have a doctor who has IBS himself, you are most likely written off as a high-strung, nervous type, being told to eat fiber, drink water and reduce the stress in your life. Therefore you are left to deal with it on your own. If you are lucky enough to have access to the internet, at least you can get some support from bulletin boards like this. Other times you find yourself wandering aimlessly around a health food store, trying supplement after supplement..hoping against hope you might find something that will help you. I could go on, but I guess I've babbled long enough.------------------"Remember To Stop and Smell the Roses"Rose (C-type)
 

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It f-cked my life up.Working: CHINA D30, danderian, black radish, lactobacteria, low-fat, low-carb diet...take care/Maceo
 

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Are we talking about generating our own brochure that would go to doctors like the brochure that someone created for us to give to friends/family who don't have/understand IBS? Great idea!Now for my contribution to the cause...In a word, IBS causes uncertainty...getting the diagnosis means WAY more questions than answers.We become uncertain about:1) Whether or not IBS is a real disease.2) Whether or not each of us has IBS. With so many different descriptions of the symptoms, it is often hard to believe that we all have the same thing.3) If not IBS what is it?4) Is it cancer that has gone undiagnosed?5) Is it all in our heads? If so, why?6) Will I ever get better?7) Will I make it through the day/morning/hour etc. without having an embarassing accident?8) What should I try to get better?9) How can anything that's not life-threatening hurt so freakin' much?10) Even if I accept all of the above, how do I cope with my day-to-day activities? How many can I continue to do at all? (Especially work!)11) How do I make my spouse/boss/roommate/teacher/parents/sibs understand what I'm going through when there are usually no outward signs of being "sick?"12) If a treatment such as fiber seems to improve my situation for awhile and then I have a bad flare-up again, does it mean that treatment is useless?Uncertainy can lead to frustration, anger, anxiety, depression, or at times a combination of all those things.Now, how we cope with that...well, here's my take on it...If you ever seek support for being chronically from a book, group, psychologist, what have you...you'll find that they often talk about something they call your "life story." There are many ways of looking at your life story when you've got IBS:1) You could decide that you're basically screwed because you have no control over the situation. and therefore the bad guys won and the story is essentially over. (a classic tragedy)2) You could decide that while you have no control over it, the story isn't over because you're holding-out hope that a hero will come into the picture and save you from this wretched hell. (a classic romance)3) You could decide that if you fight hard enough you might eventually get control over it. (a war movie)4) A totally different approach: You could decide that while IBS is a part of your life story, it is merely a subplot to other things in your life. (a complex drama)5) You could decide that the bad guy in this story in this story may be dominating the scene but his challenging you constantly is making you a better person. (I think of this as a cross between the Die Hard "If-it-don't-kill-ya-it-just-makes-you-stronger" approach and a classic kung fu film.)6) I guess if you're truely nuts you could enjoy the suspense of the the situation and treat it as a science-fiction or mystery flick. (I'm a Trekkie, but this one's no good for me.)7) If you're convinced it's all in your head you could take the Wizard of Oz approach and see if clicking your heels together helps.8) Consider it a comedy and laugh at your troubles.I could go on, but I should get to the point instead...of course we can't control every aspect of our lives and we don't have the answers we need when we feel we need them to our problems, but we can determine how we organize the events in our lives as they unfold before us in our minds. Personally, I prefer to do it like the very best movies do it--like Shawshank Redemption and Pleasantville....in other words, I try to include many different elements in my life story. Shawshank, for example had momments of despair, humor, mystery and even a little of that Die Hard mentality. Pleasantville included sci-fi, humor, complex drama, etc. Those are the great stories that people talk about forever. When I die and my story on Earth is over, I want mine to be the kind of story people talk about because of all of the interesting elements that went into it, the good, the bad, and the ugly.
 

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I just want to add a couple more things. IBS affects everybody differently. Some have severe cases that are down right debilitating on a daily or almost daily basis. Others have moderate cases, where they might have flare ups once or twice a week, and yet others have very mild cases, where they might get an attack only once or twice a month. Also, some people have only been dealing with this for a relatively short period of time..a few months or a few years. These people might be a little more optimistic than the veterans like me who have been dealing with it for 40 years and counting.------------------"Remember To Stop and Smell the Roses"Rose (C-type)
 

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Hi SouthernBunny. Well it has come close to ruining my life at times. Especially when the symptoms are acting up. - I can't travel because of anxiety (haven't been out of town for 4 years)- I don't like being away from home for more than one night because that's the longest I can depend on my immodium- I don't have as many friends as I used to because most of them probably think that I don't enjoy going with them since i'm constantly declining invitations for social outings- As well, I wrote a post about how it affects your relationship with your partner. It restricts their life too when they want to go out and you're either too sick or too anxious to leave the house. This results in a lot guilt.- I no longer enjoy food. Like someone on here once said, 'I only eat to survive'. I'd do anything to be rid of this thing. It completely controls my life.
 
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Discussion Starter · #11 ·
It"s a pain in the you know whatmodulon wothless for meDicetel works welllots of fiber helps however everyone is effected differently good luck
 

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This may seem like a dumb question, but Rose's comment got me wondering:Just how severe can this stuff really get (and still be just IBS vs. Crohns or IBD or something)?Maybe there is no way to answer this question with any degree of certainty (more uncertainty, just what I need, right?), but I'd like to hear some opinions about this.I certainly don't consider myself "severe" as I am usually able to work, travel, etc....though I must say that there is nothing easy about it since nearly every morning there is at least some cramping. I've had unpredictable flare-ups that have kept me home from work more than I'd like and made stretches of several weeks quite miserable. Given all that, I guess I'd call myself moderate since I've heard of people doing both way better and way worse with the same diagnosis.
 

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Steve,To answer your question (at least in my case), I know the difference in severity, because I have been dealing with this for so long. During my childhood and into my teens, I would have classified myself as a mild case. From my early 20's into my early 30's I had a reprieve, where my bowels were actually normal. Sure I was constipated or had D once in a while, but so do "normal" people. For some reason in my early to mid thirty's it came back. From my mid 30's to mid to late 40's I would classify myself as moderate, having problems a few days a week, but I would also have some good days every week also. From my late 40's until now (I am almost 52) it has gone from moderate to severe, to where I hardly ever have a "good" day, and if I do it really sticks out in my mind, because they are so few and far between. Going from moderate to severe, prompted me to go through all testing again, because I was sure there had to be something else wrong besides IBS, but again the tests came back normal. My IBS has definitely reached the point where it ruins my enjoyment of life. At least when it was mild to moderate, I could look forward to some good days...now just about everyday is so uncomfortable from pain and bloat etc., I sometimes ask myself what's the point of living if I have to live like this. I'm not suicidal or anything, but knowing everyday is going to be filled with pain is no way to live, and I don't see any light at the end of the tunnel. It is extremely depressing.------------------"Remember To Stop and Smell the Roses"Rose (C-type)[This message has been edited by Rose (edited 05-25-2000).]
 

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Rose I know what you mean. I've been steadily getting worse over the last 11 yrs. Right now I'm doing testing which has made it flare up even worse. I feel like I can't be a good Mom or wife anymore. I'm not leaving the house unless it is to pick up the kids at school. I'm in pain today so maybe thats coloring my attitude but you wanted life with IBS well this is mine today.
 

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Rose,I'm sorry to hear that it has brought you such despair. What have you tried so far to improve the situation? I am mostly an IBS-D type, so I can't talk about the C from experience although my sister is IBS-C.I certainly hope better days are ahead for you!
 

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I can agree with your Rose. Mine was a situation where it progresses as I got older. I too was effected to a small amount when I was in my preteens. I was nervous when storms came and my stomach would just go to pieces.It was food poisening that started it up bad About in the late 80's. Ever since it has gotten worse that I could not go out with out loading up on Imodium. If I wanted to go to Church on Sunday I would not eat anything hardley on Sat and take at least 4 Imodium to just get out the door on sunday morning and sometimes that didn't even work I would end up having to leave church and come home. Very embarressing and then I get depressed right after an attack. At 64 I couldn't even enjoy retirement. things are looking up now as Lotronex has helped alot. Taffy
 
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Discussion Starter · #19 ·
has anyone thought that this may be some virus that some people have a genetic predisposition to this illness? it really sounds like some type of automimmune disroder. it is strange that people seem to get more severe as they get older and that some things work for different people. it seems to me that something else is causing this but the pills try and deal with the problem and not some underlying clause. just an idea.
 

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If you are on Lotronex from Galxo you can send for information on IBS. They are saying it IBSD is caused by an over production of sertonin in the brain. Lotronex attacks the sertonin. I would assume that IBS C could be a under production of sertinon but I'm not a authority on that. So don't quote me.Taffy
 
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