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Discussion Starter · #1 ·
I have had IBS-D for over 20 years, infrequent at first so no diagnosis was made in the beginning. I was diagnosed with IBS two years ago by a gastroenterologist. (He ran all types of test to come to this conclusion, like Colonoscoopy, upper endoscopy, Abdominal Cat scan, abdominal ultrasound, etc) He put me on Flagyl for a month and followed up with Bentyl which did not work. I was then put on Donnatal for spasms and Darvocet as needed for pain. He recently gave me Lomotil for the diarrhea. F.Y.I. The donnatal did not seem to decrease the pain and spasms. And the Darvocet did not seem to make a difference, either. Because the last two months have been painful and difficult to the point that my social life as been placed on hold, I went back into see him. I brought in printed copies off this website for the various treatment options, and asked him about Lotronex and probiotics and their use for IBS-D? He prescribed the Lotronex and suggested that I also take the probiotics. I started the Lotronex two days ago and so far I have been burping alot with the same abdominal pain. I have not had diarrhea, so that is a good thing, but should I keep taking the Lotronex? Am I not giving it a chance to work if I quit it now? I haven't had any diarrhea the last two days, but I thought the Lotronex would help with the abdominal pain and discomfort. And it seems to feel the same if not worse. I am just feeling miserable.
 

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Unless one is having a severe allergic reaction ANY med deserves more than two days to see how you do. So try to relax and see what the next week or so brings. Many side effects wane off over time.
 

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Hi Tough..-well, I would say stick with it a bit longer before making up your mind. On balance...abdo pain with diarrhoea is worse than just abdo pain. So- you have made some progress and maybe your gut just needs time to calm down. I live in the UK and can't access lotronex so if you quit then send them to me!!!!!! Seriously though-give it a little longer-it may well help-I'll keep my fingers crossed for you. Let us know how you get on.
 

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hi ,i took the lotronex years back when it first came out,but they took it off the market.if i remember correctly i had a belly ache for about a week.it did go away.but acouple weeks later they took it off the market.it worked good for me.good luck peg
 

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You must give any medication for IBS more than a 2 day try. It can have taken months or years for your gut to get where it is today, and it may take weeks or so for your gut to properly react to an Rx. I have IBS and IBD and with the IBD meds. it can take 4-8 weeks before any change at all is seen. Medications are not magic wands that you wave in front of your gut and voila! all is well. Be patient and give this some time to actually work or not. This is something that you should have discussed with your doctor before accepting the Rx - how long until you might see full results. As long as you are not having adverse side effects why wouldn't you keep taking it? As one other poster said, if it has helped your D then it is making useful strides. It's your choice, though.Cheers,Elizabeth
 

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Hi toughjourney,It took between 1-2 weeks for Lotronex to truly start working for me. After about a month on it, I was consistently feeling like a real human being for the first time in years. It's a strange medication to adjust to and it comes with many risks (as I'm sure your doctor told you about). I think that being patient, monitoring my symptoms, and keeping in touch with my doctor were the most important things I did during my first month on the medicine. I hope that, if you choose to continue with Lotronex, you find relief from your symptoms! Best,transatlanticist
 

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I should reiterate too that it's incredibly important to read all the warnings for Lotronex and to call your doc immediately if you develop any of its side effects. Once again, good luck!
 

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Discussion Starter · #8 ·
I appreciate all the comments. I stopped taking the medication for two days while I was experiencing abdominal pain, and finally started feeling better (in spite of not taking it, I guess) on Tuesday. I decided to give it another try as my tummy was not hurting any more. I took the 0.5 mg prescribed - my doc said that he wanted to start me on "a lower dose" and will re=examine me in one month when I saw him last week. I had to make a rush to the restroom while at the grocery store Tuesday not to long after resuming the medication and again had another "incident" during the middle of the night, but fortunately once my colon evacuated both times, I did not experience any further abdominal pain. (The diarrhea is something I can deal with, though no fun; but the abdominal pain is the tough part of this condition).I took another Lotronex pill today and experienced another episode of diarrhea (just as I was ready to walk out the door to a social engagement in the evening). Again, afterwards I was glad to not have any severe abdominal pain. I am planning on calling my doctor tommorrow to inquire if my dose should be adjusted or stay on course. I am just glad to have an appetite again and be able to eat. So, I am willing to give this medication a try and if need be "tweaking" the dosage according to my doctors direction. Having not much luck with the prior medications prescribed, Lotronex is worth giving a chance. I also started the probiotic for the bowel, and will see how that works out. I totally believe in being proactive in one's health. I had to wonder though why I had to be the one to mention Lotronex instead of my doctor. I know not every doctor can prescribe this medication as I was so informed by this doctor, And I had to sign forms that I understand the risks involved in taking this medication and that should I experience constipation, i am to stop taking it and call him. I did find out that this medication was taken off the market by the FDA, but I was told it was because this medication was being prescribed for those who also had IBS-C and there were complications leading to ischemic colitis and in some cases death.
 

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Discussion Starter · #9 ·
Elizabeth,Are you the same one who wrote Living with IBD and IBS? I had googled a book ordering website on my computer last week (during my misery period), searching for books on those who have written their firsthand experiences with this disease. I ordered your book. I just received it in the mail today and am looking forward to reading it.
 

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Sorry to hear your having problems like a lot of us on this site.I have cut so much out of my diet and one that I have not gone back to having is fruit juice and citrus.With taking the tablets my advise is to take two tablets at a time if your really bad and every time you go to loo with D take another but just don't go overboard I was told no more than 6 tablets a day, but if bad I will take 2 tablets.I have found that we go through periods of bad days who knows why that happens but it does.If you start having normal bowel movements then cut back on the tablets , I was told not to have alcohol and cool drinks, coffee, chewing gum as something in them that can cause the dreaded D.I don't eat spicy food either.I take Peppermint tablets if I get gas and they sometimes help other times don't.It is just trail and era, though way we have to try and sort it out.I am finding I am eating smaller meals but still bloating and have not lost any weight at all, which is frustrating to me.I take Probiotics every morning and try not to get too stressed but when you are having a bad day you will stress.Good luck.
 

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I was given the free 15 or 20 day trial. Pretty much all I have read and heard is that if it doesnt work within a few weeks then it won't work. It helped very, very slightly with the urgency but didn't slow my movements. Nothing Imodium doesn't do for me and the minute benefits just didn't warrant the exhorbitant cost of Lotronex.I would definitely give it the full two weeks as relief from this hell is priceless. Your story seems similar to mine in regards to all the tests/scans and prescriptions that don't work.
 

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Discussion Starter · #12 ·
Thanks Borrellifan and Ausie one for your comments. I am going to stay on the Lotronex for the one month prescription that I received from my G.I. and I am scheduled a follow up with him after 30 days of being on this med. I am keeping my fingers crossed that this helps me. I also started taking the probiotic once every day. I do know that I do not do well with dairy products, and spicy foods, so I do know to avoid those. I have considered an elimination diet to see if that will help further rule out any food items that give me problems. My G.I. Doctor said that, "you can drink water and if you have IBS, it doesn't mean that you won't experience symptoms." I guess he was trying to tell me that diet doesn't matter, but I have to learn to listen to my body. Do what is best for me to manage my symptoms.I wish you both the best, and as I know that not everyone experiences IBS the same way or has the same treatment options , all we can do is hang in there and listen to our bodies, and find out what works for us individually.
 

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People want all IBS to be from food and nothing but food and some magic diet will make them 100% normal every day.However much of IBS symptoms is from how the colon functions (or mis functions) independent of any particular food you put in it. Now some people find some foods make things worse and avoiding those makes sense.
 

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People want all IBS to be from food and nothing but food and some magic diet will make them 100% normal every day.However much of IBS symptoms is from how the colon functions (or mis functions) independent of any particular food you put in it. Now some people find some foods make things worse and avoiding those makes sense.
+1I just went to some renouned "naturalist" last month who kept telling me that it must be gluten even though i told her numerous times that i have already been tested for gluten allergies (twice) and that no particular food worsens my symptoms and that i have tried a gluten free diet. It ended up costing me close to $800 for her to come back and say "well, its not gluten that causing it" well no ######!
 

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ToughJourney,Good that you are keeping on the tablets but just remember to give one day free if you start to get constipated.The other thing I was going to say is try after the month a different anti d tablet that is what I have done as sometimes one works better than the other who knows why. But I don't mix the brands on the day either one brand or the other.They say eat bland diets rice and bananas, well then I was told don't eat bananas as that makes you go to the loo, so I have cut back on them. Also was told from a naturpath to have beetroot apple carrot and celery every morning was don't think it was in my stomache for 10 minutes and I was racing to the loo tried it again a few days later and same thing so I have a vertually new juicer sitting in my cupboard.Yeah some people have made money out of me saying to have this or that.I don't eat as much fruit as I used to and that has been hard as I love fruit, now I eat more apples than the other fruit.The other thing is I can't eat too salty food and never any salted nuts, so all I have found I can eat is almonds raw not too many, but when you just feel like something just grab a handfull.I like lollies and have had to cut back on them as I have a reaction and run to the loo so it is a real life changing thing we have.Just keep us on your mind to let us know how you are going.Ausie One.
 

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Yes, you definately should keep taking it! I had the same problems before and was given Lotranex. It was a miracle drug! It takes a while to get into your system. But you will begin to feel a difference soon. My stomach began to be less sensitive. I don't have to worry anymore about when I'll have to run to the bathroom! I got my life back! The best news is, that after taking it for sometime, I was able to come off of it. I'm told by my GI specialist that there may come a time when I might need it again, being the way IBS works. But for now, I'm doing well. Except when I have to take an antibiotic. I also take a probiotic and digestive enzyme. I started it the same time I started the Lotranex. It really is a great drug for those with IBS-D. Just hang in there! It'll get better!
 
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