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Discussion Starter · #1 ·
Friends-I am 18 year IBS-D sufferer. Had a few bouts with some leakage with gas over the years, then about two months ago had total incontinence with no warning. It was awful...I was at work, but managed to get home etc etc.I thought it was just a one time event-but did go to my doctor afterward. We tried Bentyl once again which I took for about 3 days and couldn't stand the way it made me feel.Well- after dinner last night, had a little gas and a little leakage. Took a walk with my husband..stomach feeling a little weird-but no cramps or anything, so decided to go. We've been taking them for a while.In the middle of a walk...no warning, it just started pouring out of me. I just stood there and cried as it came out in about 5 "waves".Luckily it was getting dark, no people were around and a restroom was nearby in a park. I had worn a thick pad, but needless to say that helped very little.SO MY FRIENDS....is this what I now have to look forward to? Those of you with this true type of total incontinence-is this how yours started?HELP!!!
 

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Jeanne2,Sorry to hear about your experience. When I've had that happen, I just go to bed and bury my head. I understand how it makes you feel. I don't think Bentyl will help with the D part. I think it is only good for the spasms. I don't know about you, but I don't always have spasms(when I do it's awful). In fact, if you would have had a spasm at least you would have had warning. Have you tried anything else. I take immodium. A lot of people take it as a preventive. Some people have had luck with calcium, probiotics or Digestive Advantage. Hope you feel better soon.
 

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Discussion Starter · #3 ·
Jurena-Thanks for your reply. Oh yes, I have tried dang near every medication out there. I live on imodium..and took two of them last night before my walk (but as others on here, I think it needs to be taken way ahead of time)So, you have this type of D too? What do you do?Any tips will be welcome! Can you relate your "incontinent events" (for lack of a better word) to anything different you've done?I sure can't...and neither time I've had one, was it a stressful situation at all.Yes, I had maybe a little twinge of feeling, but no time to even get my pants down and squat (sorry to be so graphic) and it came out so fast there was no sense trying to pull my pants down DURING it.I have tried Bentyl, Lotronex-way back when it first was released, Librax, Lomotil, Donatol..fiber supplements...diet changes....I am going back to a GI this week...made an appointment first thing this morning. I am due for another scope-it's been 7 years. I truly want an ostomy-do you remember I posted that a long time ago..asking others? I would be glad to be a guinea pig...my life sucks right now. The more times these things happen, the less confidence I have at all. Last night when I had my wonderful event, my husband was just angry..and kept saying why can't these doctors help you? What else can they try, etc etc. He has been very supportive, but his response supports how most people feel about IBS!!! I just said to him" I don't talk about it all the time, but if you think I haven't tried just about everything I can, you are wrong. Doctors are just as frustrated as we are.Jeanne
 

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Okay now I remember. You have even given me advice when I've had a bad day. I do remember your post about an ostomy. I guess you probably have tried just about everything.I have had these bouts of sudden d. One time I was at work and (as you said) got this little twinge. I am very careful aboout every little twinge. I went running to the bathroom. I had a pad on so it caught what was coming out as I was trying to get my pants down. So I guess I had a bit more time than you. I've also had to suddenly go several times when in the car. And sometimes there is pain and sometimes not. Sometimes it is formed but it still just wants to shoot out (for lack of a better term). The immodium does help me just as long as I take it in advance. Of course you can't plan everything. I am glad you are going back to the doctor. Don't lose hope! There has got to be something out there to help.
 

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Discussion Starter · #5 ·
Jurena,One last question for you- have your really bad episodes increased over the years, or once you were diagnosed, has it always been about the same?And-I also have the urgency issues, but have been able to control those-but the stool is at least formed, and I use some deep breathing etc to get me to a toilet. That part of my IBS has improved a lot over the last 5 years or so..and now this ####! Literally.My two episodes described in gory detail before, were just totally watery-very smelly stuff...how the hell can all of that be in your system without you feeling it? (as opposed to having stool that is formed filling up your colon) I just don't get it! (Guess that was two questions...the last one will be for my GI, lol)Jeanne
 

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Jeanne,I think it has gotten worse. Some of it may be due to the anxiety that goes along with it. After having an accident or nearly having an accident I get more paranoid with each time. I also had better control in the beginning. I never felt I could not hold it until I got to the bathroom. Boy, those were the days. Do you think having D for so many years affects our ability to hold it? I do think even normal people when they have watery D may not be able to hold it. It's just they don't get it as often as we do. Anyway, I hope your doctor has some good advice and drugs for you. Let us know how the appointment goes.
 

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Discussion Starter · #7 ·
Yes, I will let you know what the GI says..mostly I guess I feel I should have the colonoscopy just to check things out.This has been such a dramatic change for me, that I think it's smart to do the test.One thing I have not tried is acidopolllus..bought some today at lunch. I figure it can't hurt.It's the no cramping/absolute loss of control that is so terrible-and so abnormal.Also yes, I think anxiety plays a role in it, but I wonder more and more if taking imodium and anti-anxiety drugs for so many years, is taking it's toll on my nervous system (connection to gut).I am 57, and have taken anit-anxiety meds for 30 years, the imodium on a regular basis for at least 15 years..that's a long time to be putting that stuff in your body, regardless of what the experts say. They sure warn about long term use of laxatives...so why wouldn't imodium possibly have the same long term effects-and who has studied it?I haven't heard back about an appointment time yet..figure it will be a while before I have my test.. but I'll keep you posted. Thanks for sharing your experiences too.Jeanne
 

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Jeanne, you have been so kind to answer my questions and be a cheerleader for all. I am sorry that the incontinence is plaguing you too. I know mine started some 6 years ago, after I lost my husband. I had an occasional episode for a couple of years and then it began to be more frequent. I have absolutely no warning when this occurs, no pain, no rumbling, no nothing. That is what I mean when I say I cannot work in public now. I have, as I have mentioned, several different scenarios of the IBS, sometimes, I cramp so much and cannot go for hours and then it will be D. Sometimes one or two trips may clear me up and I am fine. But other times, I may have ten or twelve bouts of D in just a few hours and have cramping so bad that I faint. (See fainting thread). a nothing I do will stop it. Immodium tends not to affect the D at all in those instances. I can not relate any of these scenarios to food, medications or any other triggers. It just happens. I am certainly hoping that this is an isolated incident for you. If you ever need to talk, just email me.
 

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I have also hae about 3 or 4 bouts of total incontinence. Once was as I wqas driving a FRIEND's car home!! How awful. No cramps, no pressure, no leaking, no notice. Other times have been at home, but no better--I just cry and want to die and my porr husband doesnt know how to comfort me.There seeem to be no triggers, either-- which scares me because I constantly think that its goint to happen again. However, I am on anti=depressants and Neurontin, and maybe that has helped, since its been a while--Hmm--
 

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Discussion Starter · #10 ·
Folly and All-Yes, I thought my good old IBS-D was bad...but these two incidents have shown me what BAD really is! So, I really feel for people like you Goldy-that have the incontinence frequently..and bad cramping, etc.I guess I am still just pissed off enough that I have this "thing"-I got up and went to work the next day after my "walk". And this morning got up early and drove an hour to pick up my son at the airport in rush hour traffic (which I am not used to) I am still refusing to let it completely dominate my life!In the past, I had times (maybe a few a year-literally) where I would have severe cramping..always at night, always about 30 minutes after a meal. That warned me to stay close to the bathroom...and it always was very self limiting...I'd go two to three times and then feel fine. (But, would also get C for the next few days...as is my pattern)But this no-warning stuff is scary, think I made my point before lol. But truly-it is just so abnormal for your mind not to give you any clues at all.For now, I am using big pads any time I leave home. I am going to see what happens.But the other point I wanted to make was that earlier in my "disease" I had much more stress in my life than I do now. And both my "spells" happened when I was feeling mentally-pretty calm!Good luck to us all, huh?Jeanne
 

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Hey thereI am in the middle of a bad bout right now and I am sitting at my office in tears because I can't take it any more...I think to myself how can there be anything left in there??When it is bad I can go about 10 times a day....is this something that you have also experienced??I am also taking probiotics and have been for a while ...I thought that they were really doing wonders but it seems like all of a sudden they are no longer working...has anyone else tried them?
 

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Discussion Starter · #12 ·
Scorpio-I just started the probiotics...just bought some called Nature's Bounty brand at Walgreens.It is one thing I have NOT tried in all these years, so figured what the heck.Sorry to hear they don't seem to be working for you much.I noticed on the bottle it said "millions of organisms quaranteed at the time of manufacture" Anybody know what that means? Do they die off?The expiration date is Feb 2006.Well, hang in there...if you read my whole thread here, you can see what I've been going through recently....it's exactly like "just when I thought things wouldn't get worse..they did".There are surely worse physical problems we could face, but it doesn't seem like it sometimes does it?The other thing with my bouts of D-the severe, incontinent ones are over with quickly. My gut feels a little weird afterwards...but then I usually am blocked up for at leasat 2 days.I don't think I've ever gone 10 times in a day.My "semi-urgent" bouts, are maybe 5 at most..but all within about 2 hours time..then I'm done.Strange isn't it?Good luck...thinking of you-and all of usJeanne
 

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I wish it was over in 2 hours sometimes it can go on a lot longer then that...In regard to the probiotics you want as many active cells at time of manufacturing as some of them die off....they really do work I just think I have been on them too long...
 

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I have been taking them for about a week and a half and I have noticed that I don't have nearly as much gas and that gurgling in my stomach is not as bad. It was a constant for a long time.I have had several boughts with incontinents. Once we were at a restaurant and I just had regular D (if you can call it regular, for me it is anyway). We were on our way home and a friend of ours was in the car and I just had to go. At least we were only about 5 minutes from home. At that point it felt like an hour. I quietly let my husband know to get home quick. I pretty much shot out of the car as he pullin the drive way and as I was unlocking the door it just shot out. I was mortified and ran to the bath room. needless to say the house didn't have a very inviting smell after that. I was in and out of the bathroom the rest of the night. That was actually the only time I didn't make it to the bathroom in time.It had a great impact on me emotionally though I pretty much have turned into someone who only goes out when I have to. We used to camp and hike and do all sorts of outdoor things but not any more.
It drives my husband crazy because he whats to go out and do things and I just don't want to.I was taking Zoloft for the anxiety all this caused but I think my D got worse while I was taking it. I've been off it for about 6 months and I was feeling a little better for a while now its getting worse again but I think the Acidophelus is helping.
 

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Discussion Starter · #15 ·
Lucie,Much as my first post was a "distress call"...I am still doing things. I go to work everyday...well, you read them...I just make sure I have things in case of the worst.So- sounds like if you just had one spell, you should try to put it in perspective. I looked at the date on my Bentyl (see my first post) and my other incontinent spell was mid July...so its' been 3 months. Most of the time we are OK...well, kind of.For now, until I find out what's up...I wear Protection...I bought depends and have had thick pads for a while now. If your husband has been through this with you, he won't (or shouldn't) care if you two take off to camp...put on your depends and go! Take the stuff in the car with you, if you have an accident.Yes, this damn disease can turn us into hermits..and I am not quite as bold as I "write"...with my husband, yes...but with even good friends and relatives, I rarely ride in cars with them, etc. We do go to parties, etc. I don't eat a lot-I do drink alcohol and it really doesn't seem to bother me.My bad spells are always after I eat...yours was too.Don't know what other meds you use...but I'm just trying to give you a pep talk here, even though I know just how easy it is to sit at home!I've done a lot of traveling by car..we used to have a van with a porta potti in it. Now I just make sure I have stuff with me. I have yet to have incontinence in the car..always managed to get to a bathroom-or bushes, in time.My biggest concern is that in all the years I've had IBS-D, there have been some close calls, but I always had warning...now 2 times I haven't had warning,But again, in 90 days, only 2 were that bad.....so I figure there's only a 2% chance I will be incontinent that day, when I walk out the door..lolHang in there...we are all trying to.Jeanne
 
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