# IBS-D sufferers, please read



## brittany.lynn (Mar 22, 2012)

I'm getting to the point where I don't know what to do anymore. I'm on the verge of tears as I write this. Sometimes I have to take four to six Imodium a day, five days a week to be able to leave and the horrible mornings when it doesn't work like it should I'm stuck to the toilet unable to leave my apartment. This condition has ruled my life since I was very, very little and I don't feel any closer to finding a solution than I was then.I've been to specialists. I've tried different medications. I've tried special IBS recommended diets to eliminate the diarrhea and to see which foods make it worse only to determine anxiety and stress are the cause. I've tried antidepressants to eliminate the stress and anxiety but they didn't help. It's always been like my anxiety fuels the diarrhea and the diarrhea fuels my anxiety. I spent countless hours of my grade-school life stuck using the toilet in an abandoned bathroom hidden off the nurse's office the rest of my class didn't know about. Instead of sleeping over with girlfriends, seeing a movie with classmates, attending school dances, signing up for extra-cirricular activities, or etc., I was hiding out using the bathroom or unable to go due to incessant worry about what would happen if I got diarrhea. Tests were difficult because the second it registered I couldn't use the restroom immediately if I had to, my anxiety would skyrocket causing the diarrhea. My family took a trip to Orlando, FL for Disneyworld when I was maybe 10 years old and I spent the entire week locked in a hotel room with the sh*ts. I can't remember when I found Imodium but I've been taking it for years. I'm now 22. It's the only thing that works, and it works most of the time, but I worry about dependency and that it might not be safe because of the amount and frequency I need it. My doctor says there are no drugs for IBS-D sufferers, all of the IBS drugs are for people with constipation problems and to continue taking Imodium like I am now. WebMD and many other sites suggest you don't use anti-diarrheal medications long term and to use the lowest dose possible when used. I have read about people taking 20 and 30 of them a day and they're okay but I don't know how it could be safe! Also, the minute I can't get to any I can't do anything but stay inside by myself because I'm so worried I'll have an episode I can't control. I think this is psychological and not a result of use but I read recently the chemical make up of Imodium is that of an opiate or narcotic, only it doesn't breach the brain-blood barrier so you don't have narcotic-like effects. "A 26-year-old male with a history of opiate and alcohol abuse, began taking loperamide for the treatment of acute diarrhea. Despite denying euphoric effects from the drug, he gradually increased his intake to 320 mg per day. Attempts to stop the drug resulted in acute withdrawal (chest pain, shortness of breath, chills, diaphoresis, abdominal discomfort, nausea, and vomiting). Methadone relieved these symptoms. A slow methadone taper in an inpatient setting was successful in treating the physical _dependence_."I'm upset and need support or advise from other IBS-D sufferers out there. I can believe there's no cure or solution for this condition but there are times it prevents me from being at work or school. Without Imodium, that would be all the time. If I mention this, the doctor acts like it is my fault and my problem. It is my problem, a huge problem for me. I pay good money to seek out help from a doctor and his solution is an otc medication I have to take excessively and that may or may not cause dependency, which I think I've experienced at least psychologically. My boss acts like I'm difficult or just lazy but I think this condition is more difficult for me than anybody. What am I supposed to do about work absences? Should I seek out a prescription for anxiety, like a benzodiazepine? It could make my anxiety easier to deal with but they're highly addictive and I'm not 100% I would be able to give up the Imodium. Does anyone out there have similar problems? Why do I feel like I'm a bad person for having IBS-D?


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## InkdAJ (Mar 23, 2012)

Hey! Dont normally post to these things, but you broke my heart. I have suffered from D for soooo long , without any help. Im also a RN so I have alot of medical knowledge, but it doesnt matter, u can email me if you want, for more info....but I wanted to suggest a couple things. FIRST, if you havent, have your MD check your stool for C.Diff (Clostridium Difficile)...could be caused by that horrible bacteria and you not know it. Second , if your md HAS checked and youre C.Diff negative, please have your MD prescribe you a drug called Questran. After trying everything, this is the first thing that has.worked. I combine my questran with a Lomotil twice a day....and I have finally started having a life. One thing my Md told me we could use (he is a world renoun gastroenterologist) to help is CODIENE. I havent started that bc I am on a narcotic for a surgical mishap. Buy once I come off the narcotic, he told me codiene works well to slow the digestive tract, and in combo with the questran should be helpful. Understand, i too have spent years with no life, on the toilet. So, try these things, and get back with me. Prayers are with you! Keep your head up! -Amanda


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## InkdAJ (Mar 23, 2012)

Btw, get a new doctor. He sounds like an a**hole.....its not your fault nd you SHOULD BE HELPED WITH CARE AND CONCERN ...NOT HOSTILITY AND BLAME!!!!! Please find someone else....or let me know what state youre in and ill get my MD to recommend someone. (He has associates all over the world). -Amanda


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## clareuk (Feb 7, 2006)

Hi,I totally understand you. Although I'm currently not getting the runs everyday (I did for over 10 years) I still get it a couple times a week. I get the same problems with work. They don't really believe me or care to be honest. They just keep asking me when am I going back to the doctors again and it's getting embarassing now really. I have been back to the doctors and he basically told me that I'm going to have to find my own things to help and (not in so many words) but to stop going back asking the same questions So it's up to me apparently. I've been going there since the beginning of all my probs and I can say that they have been totally and utterly useless. It is the NHS but I don't earn enough money to have private healthcare. They have done nothing to help me whatsoever. I have given my employers a doctors note saying that I have IBS-d but they still get annoyed when I have to ring in sick. Which I do and I can't give them notice as I don't get any myself. I even got told off at my dental surgery last week. I had to call them the afternoon I was meant to go for an appointment as I got the runs. I was totally honest and explained that I suffer with ibs amnd I really don't like the dentist and unfortunately my ibs was acting up and after telling her that she actually said I must give them 24hours notice. I don't think my response was very polite and the next time I go there, I shall wipe the floor with that receptionist.I am currently thinking how I can manage living with this and trying to think of ways to make things easier. Such as getting a van to drive instead of a car and maybe putting a camping loo in the back for emergencies. checking where toilets are before I go somewhere, trying to think of jobs I can do at home so I can leave my job and still earn money as I am single, that sort of thing. I think I'm coming to terms with the fact that there may not be any cure and trying to find peace with that.Just to say, I have good days and bad days. Today is a positive one and I don't get many. Most of the time I just panic that I will have this forever and get very depressed about what I want to do and can't. If you ever need someone to chat to, please private message me. I'm always around as I don't have a social life.







Take careClaire


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## Kathleen M. (Nov 16, 1999)

Using Imodium in the long term to avoid getting examined and when you do not have a diagnosis is NOT recommended.However if you have a chronic illness they have tested Imodium in some clinical trials and found it to be pretty safe.Really, they did some pretty long term clinical trials for IBS-D with Imodium and everyone was fine. No one became a raging opiate addict from Imodium.The only people who have ever tried to get high or addicted to Imodium were opiate addicts to get with and taking 180 pills at a time is still a lot different than 10-20 a day that some poeple with severe diarrhea diseases do take. And the reason that got in a medical journal is that it is an extremely unusual case. Your average everyday person never makes it into the journals.Imodium is the CONSTIPATING SIDE EFFECT of narcotics without getting into the CNS. A very similar drug with slightly more ability to get in the CNS (Lomotil) is prescription and always will be prescription because it has a very low addiction potential. Imodium is often more effective for a lot of people than the prescription drug, OTC doesn't mean can't be effective. Imodium use to be prescription until they figured out it was safe to let people loose with, it isn't OTC because it can't do anything, or never was a prescription medication. It is just less risky than other narcotics. If you are afraid of being dependent on Imodium then Lomotil and Codeine are more likely to cause that then Imodium.I'd rather see you taking something with a 1 in a million shot of causing an addition issue than something that commonly causes addiction AND benzos are not the only option for anxiety. There are a number of non-addictive treatments and you should try those first.There are some medications that can be used for IBS-D but none of them are for IBS-D specifically, and most of them have as many or more side effect issues than Imodium and if you are too anxious to take Imodium you could really scare yourself with one of those if you dug into the medical literature about it. Dr. Google and Dr. Pubmed are often not a good friend to the anxious as they make it way to easy to find the one reason it might be a bad idea and never seem to lead the anxious to the hey, this could work, articles.You might check out the Calcium thread if I'm not being a jerk for suggesting another OTC medication.







It can be constipating enough and some people like that is more natural. You may also look at a lower carb diet as sometimes eating less starch and sugar helps control diarrhea from IBS. But that isn't a prescription medication either, but it can be very effective. Some people find mind-body treatments (like clinical hypnosis) good for breaking that IBS-D/Anxiety cycle, but if you are really anxious you may need to treat that all on it's own.


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## CJ78 (Jan 12, 2012)

IBS can have such an impact on your life, and to make it worse, there is no test for it, not explanation (simply) to find out what caused it and no simple straight forward cure for it.Its a disfunctional digestion process, but not a disease.I'm still trying to cope with my IBS, 9 months on and no where near as bad has the majority of people on here.But either way, I can sympathise with your thoughts.I take 2 loperamide a day, first thing in the morning. I also take mebeverine 3 times a day. The latter has helped reduce the spasms and the frequency (pretty much constantly) and the loperamide has helped firm my BM's to a degree (generally a 6 (sometimes a 5 or even a 4) on the bristol chart). However, the loperamide is not constant.I have tried cutting down on most trigger foods, but nothing constant again.I am now convinced it was a psychological cause for my IBS, and it is psychological triggers that gives me bad BM's.So perhaps I need to try CBT, but I have one hurdle to overcome which may help without it.I may also try calcium, but without loperamide, otherwise you never know whether it works or not.So I will at some point stop the loperamide (and see if this is actually helping still, or if mebeverine works on its own), and then try calcium.With IBS, I would say try anything that is ok to try - its not going to do any harm. Right?!


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## cookies4marilyn (Jun 30, 2000)

oh dear - my heart goes out to you- my story was similar to yours. Take a peek at my journey below - I took every med and still no help - used clinical hypnotherapy at home to break the cycle- I was to the point where imodium and other drugs no longer helped. If you have any questions, I am happy to speak with you, let me know... I hope you find your way out of this, but there IS hope, I speak with many people who have similar stories as yours. Take care.


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## em99 (Mar 25, 2012)

Brittany,Unfortunately, I know exactly how you feel because I have been dealing with the same problems for 15 years. It is extremely frustrating to find doctors who listen and medications that help. I have not found total relief yet, but I'm in the process of getting help by tackling the anxiety and ibs issues together, since it is a vicious cycle. Through the help of my therapist, I now see an excellent psychiatrist for the anxiety and gastroenterologist for the ibs. This was not easy, it took several years for me to get help. The key is to remember that you are in charge of your self. If your doctor is not helping, then don't wait and see what happens, find a new doctor who will help you. See multiple doctors until you find the one who will take the time to listen to you. It takes time and patience. It may be helpful to talk it out with someone who you know will support you. There are medications that can help with ibs-d. Lomotil can help significantly as well as Lotronex, ask your doctor about these drugs. Also, I know you mentioned trying anxiety medications already, but different drugs are helpful for different people. It took me 4 different types until I found one that helped for me. Taking medication won't solve all the problems, it is just a tool that is there to help and as with all medications, you have to talk to your doctor about the risks and benefits. There are always risks of having side effects but if those side effects aren't as bad as the actual condition, then it may be worth it. I have also noticed that exercise can be a great stress reliever. I also try to avoid certain foods which are triggers (although anything can be a trigger for me) but some make it even worse, like dairy and certain fruits.It is not your fault that you have ibs. It is a medical condition that many many people have, they just don't necessarily talk about it. But it does not define you as a person. You need to do what makes you feel comfortable as a person. I have found that being more open about it makes me feel a little better because then people already know, so it feels like less pressure to keep this terrible secret. Be strong!


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## brittany.lynn (Mar 22, 2012)

Thank you. I scheduled an appointment with another G.I. for April 16th and I've made a list of things to discuss with them. I've added questran, lomotil, C-Diff and codeine and someone suggest I fill out a celiac disease symptom checklist to help the doctor determine if I need to be tested for that. If this G.I. does not work out, I will most likely shoot you an e-mail to try to find someone associated with your MD. Thanks SO much for your help and support.


InkdAJ said:


> Btw, get a new doctor. He sounds like an a**hole.....its not your fault nd you SHOULD BE HELPED WITH CARE AND CONCERN ...NOT HOSTILITY AND BLAME!!!!! Please find someone else....or let me know what state youre in and ill get my MD to recommend someone. (He has associates all over the world). -Amanda


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## brittany.lynn (Mar 22, 2012)

Thank you for responding. My co-workers also keep asking when I'm going back to the doctor or when I'm getting "that taken care of". Believe me, if I could I would. It is embarrassing and I'm glad someone can relate. My doctor said the same thing, basically I'll have to figure it out myself because they've done what they can. So incredibly frustrating. The last few times I've been, he's taken one look at me and said "bug" or the flu. I have no flu symptoms besides the diarrhea that I live with on an almost daily basis. I don't LIVE with the flu. I have no fever. I've been going there for years and I'm beginning to I think they just throw a diagnosis at me to get me out. I hadn't thought of maybe asking for a note stating I've been formally diagnosed but I'm not sure how much it'd help. My boss and co-workers have acted inconvenienced even when I've provided notes in the past. I understand it is my responsibility to perform my job and I do but sometimes I can't be here because my body betrays me, my doctor can't fix it and my control methods aren't always effective. How can we help that? I understand attendance is important but it isn't as though I elected to have been born with this condition. It bothers me IBS-D is not more well known and that it's not treated like something as debilitating and stressful as it has been all these years. I'm sorry about the rude receptionist at your dental office and I'm not sure I'd be going back. You can't help if you're sick or stuck to the toilet and I imagine they wouldn't want you to show up and spend the entire time you scheduled for the appointment stuck in their restroom. How many people are given 24 hours notice before being sick? I'm also trying to come up with new ways to manage. My frustration is immense. I hate the anxiety I get if I can't scope out a good toilet when I'm in a new place but trading my car out for a van with a toilet in the back won't work for me. I will continue checking out the restrooms everywhere I go. My main concern is figuring out a way to make this more manageable at work or to see about getting some kind of protection through a physician stating I'm suffering from a condition that isn't really explainable, that sometimes I can't stop and that there's no cure for but at the same time, I'm not even certain anything like that exists or that the agency I work for would okay it. It is depressing and it's hard and it's frustrating. Most people have no idea what it's like to have diarrhea literally all the time and to have to plan your entire life schedule around it. Feel free to message me as well.


Claireuk said:


> Hi,I totally understand you. Although I'm currently not getting the runs everyday (I did for over 10 years) I still get it a couple times a week. I get the same problems with work. They don't really believe me or care to be honest. They just keep asking me when am I going back to the doctors again and it's getting embarassing now really. I have been back to the doctors and he basically told me that I'm going to have to find my own things to help and (not in so many words) but to stop going back asking the same questions So it's up to me apparently. I've been going there since the beginning of all my probs and I can say that they have been totally and utterly useless. It is the NHS but I don't earn enough money to have private healthcare. They have done nothing to help me whatsoever. I have given my employers a doctors note saying that I have IBS-d but they still get annoyed when I have to ring in sick. Which I do and I can't give them notice as I don't get any myself. I even got told off at my dental surgery last week. I had to call them the afternoon I was meant to go for an appointment as I got the runs. I was totally honest and explained that I suffer with ibs amnd I really don't like the dentist and unfortunately my ibs was acting up and after telling her that she actually said I must give them 24hours notice. I don't think my response was very polite and the next time I go there, I shall wipe the floor with that receptionist.I am currently thinking how I can manage living with this and trying to think of ways to make things easier. Such as getting a van to drive instead of a car and maybe putting a camping loo in the back for emergencies. checking where toilets are before I go somewhere, trying to think of jobs I can do at home so I can leave my job and still earn money as I am single, that sort of thing. I think I'm coming to terms with the fact that there may not be any cure and trying to find peace with that.Just to say, I have good days and bad days. Today is a positive one and I don't get many. Most of the time I just panic that I will have this forever and get very depressed about what I want to do and can't. If you ever need someone to chat to, please private message me. I'm always around as I don't have a social life.
> 
> 
> 
> ...


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## Trudyg (Aug 16, 2002)

One suggestion you may not have thought of: ask your pharmacist if there's a good doc for ibs-d. they know so much-who's prescribing what, what's used for something other than the listed problem. give them a shot.


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## luvmygarden (Oct 5, 2009)

I have been to every doctor on earth.............they tell me they do not know how to help me with my diarrhea and the urgency. My doctor prescribed Chlordiazepoxide 5mg/Clidinium 2.5 (which is Librax) for me. It seems to help but NOT all the time. I wear a Depends when I go out to eat because sometimes I can't even get to a bathroom in time. I turn down so many opportunities to eat with friends and I dread it when I have to travel. I never see my granddaughter who lives in another state because it is too far to travel without eating..... I am so miserable!! But maybe this will help some of you.


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## brittany.lynn (Mar 22, 2012)

My appointment with the G.I. is this afternoon. I've put a small notebook together summarizing my experience with IBS-D, my symptoms, failed treatment methods from the past and many questions. I've included questions regarding my frequent high dosage of loperamide, work absences, C. diff testing, and celiac disease testing. I've also included notes so I can remember some of the medications mentioned by people who share my symptoms. Wish me luck!


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## IBS-D guy (Dec 31, 2010)

Looks like im a little late with this post but still thought i'd contribute. I'm having some success with nortriptyline. The improvement has been quite noticeable. Might be worth considering.


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## taylornicole (Apr 21, 2012)

Hi ive been suffering with IBS-D since late november 2009 and to say it turned my life upside down would be an understatement!whenever i get a bout of diarrhoea i take loperamide hydrochloride (tablet) straight after a movement which i find helps a lot, in fact i carry the loperamide hydrochloride tablets with me everywhere (they can be bought from any shop e.g. Chemist, superstore etc) they are a life saver!i was referred to the hospital twice, first i was accused of lying and that it was 'all in my head' which took a few months to get over as i was so scared to visit my GP in case i got rejected again but i was refrrred for the second time and after many blood tests i was diagnosed with IBS which is linked to the fact that i suffer with heavy periods and my iron levels therefore drop so im more likely to have a bout of diarrhoea around the time of my period.firstly i was put on mebeverine tablets (135mg) and was to take one before every evening meal in order to prepare my stomach for food - i found they helped but after a little while i became extremely constipated and felt very bloated as they are designed to harden stools. I then visited my GP again and she said this is quite common so put me on fybogel with mebeverine (a powder that you mix with water and drink around an hour before a meal) again i only take one sachet of fybogel before my evening meal once a day and i have found it has helped and is working!! It is designed to relax your stomach before a meal and prepare it for food. It also keeps your stools regular and often 'clears you out' once a day which stops you feeling bloated and groggy.now, for me to say i am completely cured would be a lie, i do suffer from time to time and have GDA (generalized anxiety disorder) which is linked to IBS that can trigger my IBS but since taking fybogel with mebeverine i have found my stomach now has a little bit of help when digesting food and it puts my mind at rest knowing it reduces the amount of bouts of diarrhoea i have.i hope this has helped


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## em99 (Mar 25, 2012)

brittany.lynn said:


> My appointment with the G.I. is this afternoon. I've put a small notebook together summarizing my experience with IBS-D, my symptoms, failed treatment methods from the past and many questions. I've included questions regarding my frequent high dosage of loperamide, work absences, C. diff testing, and celiac disease testing. I've also included notes so I can remember some of the medications mentioned by people who share my symptoms. Wish me luck!


how did it go??


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## threeheadedmonkey (Aug 9, 2006)

I hope your appointment went ok. I've had IBS for around 6 or 7 years now and one of the worst things for me attitude wise was every time a new doctor/specialist told me they can't help me and I am on my own finding a solution.


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## irritated1 (Jun 18, 2011)

I'm looking forward to hearing results of your appointment also. My GI doc had me do stool cultures to rule out parasites, C. Diff, and a few other things. When the labs are back you will probably get to try a new med. Remember, if it doesn't work, go back and request something else. Keeping a diary of symptoms is a great idea. Docs love that. Remember there are some drugs that work for some people. The main things is to keep a close relationship with your GI doc and don't give up.


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