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I was getting ready to post this yesterday when I had to leave my computer to run to the bathroom. I had been experiencing really bad abdominal pain and my stomache bloated up like a balloon all day. Nothing new to me, I have had IBS for years (going on 10 yrs). It was unfortunately a severe "episode" as I call them. I was having the pain but couldn't have a bowel movement which is unusual as I have IBS-D. I was doubling over with pain waiting to go to the bathroom. Finally as i was checking this forum, the pains started again; so bad, that I used my lamaze breathing technique (it's one that I learned 20 years ago when experiencing childbirth). It helps calm me down. I ran to the bathroom leaving my computer on and after half an hour of this, finally was able to move my bowels. Of course, once started they couldn't stop. I had to take Darvocet (pain killer) just to ease the pain. I was so exhausted afterwards, that i could not get back to my computer or anything else for that matter. I am disappointed again, as 30 days ago I was placed on Lotronex by my doctor. I was really hoping it was the drug that would help (along with being careful what I eat). It did help with diarrhea but if that's all it does, then I might as well take my Lomotil... it does not cost as much. I see the doctor for a follow up next week as he is on vacation. I guess I am just frustrated again as I felt so optimistic when I was given this prescription hoping it would make my IBS manageable, and now am disappointed and depressed. I have had several episodes since taking the medication but they were not as severe. Yesterday's doozie just set me back emotionally and physically. Has anyone else experienced an expectation when trying something new just to find out it is a disappointment? How do you keep your optimism?
 

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many folks find that they need to supplement the Lotro with calcium and/or imodium etc. So you might want to try using it with other remedies ... but I get the disappointment. Been there >> got that shirt. How I try to stay positive is I understand I could have WAY worse things. I focus on what I am able to do .. not what I am unable to do. I try to turn every negative thought I have about my IBS into a positive one. I try to look at the good things in my life and be grateful for them. I find it is very hard to be grateful and negative at the same time.Here is a good link by our Dr. Bolen about Healthy Thinking with IBS... maybe it will help:(It is under our Advice tab up on the dark blue menu bar)Just click here to see it:http://www.ibsgroup.org/node/515
 

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I was just reading a book on GI disorders and it stated Lotronex killed 6 womenand caused 160 to be hospitalized.Is this a safe pill?
 

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Yes Sun N Snow.. prescribed correctly it is a safe med.
 

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"Alosetron (Lotronex) was withdrawn in 2000 following the association of alosetron with serious life-threatening gastrointestinal adverse effects. The cumulative incidence of ischaemic colitis was 2 in 1000, while serious complications arising from constipation (obstruction, perforation, impaction, toxic megacolon, secondary colonic ischaemia, death) was 1 in 1000."Those are really scary stats as penicillin only causes one death per 4 million scripts.Also check this out:"In 2001, the editor of the renowned medical journal The Lancet, Richard Horton, critizised the FDA's handling of alosetron in an unusually sharp language.[2] Horton argued that the treatment of a non-fatal condition did not justify the use of a drug with potentially lethal side effects, and that the FDA should have revoked the approval for alosetron sooner when postmarketing surveillance revealed that many patients had suffered constipation necessitating surgical intervention and ischaemic colitis. He asserted that FDA officials were improperly motivated to maintain and reinstate the approval for alosetron because of the extent to which the FDA's Center for Drug Evaluation and Research is funded by user fees paid by pharmaceutical manufacturers, and that the reinstatement of alosetron was negotiated in confidential meetings with representatives of GlaxoSmithKline."I don't know what you mean by prescribed correctly but this drug causes these deaths for women who has severe IBS.Are you saying that the ischemic colitis only occurred when the drug was prescribed incorrectly? That is not the case.
 

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SunNSnow
I don't know what you mean by prescribed correctly but this drug causes these deaths for women who has severe IBS.Are you saying that the ischemic colitis only occurred when the drug was prescribed incorrectly? That is not the case.
Hmmm.. Maybe not.. but there also were other illnesses involved with those deaths as well. BUT>>> I am Not going to argue with you (although that seems to be what you like to do. Just an observation....)Also in the future you need to state the source of quotes. And also some of the things you state as "fact" in your postings that you have no personal knowledge of need sourcing. Perhaps you missed this in the TOS?
You agree, to the best of your ability, to give references (links) to any health or medical information you provide, when you are not providing your own personal experience, ie: anything that you have not undergone by yourself.
I've been here a long time and am well aware of the problems they had with Lotronex originally. I was one who was helped tremendously by it the first time it was on the market. And I was devastated when it was removed. I watched the formation of the Lotronex Action Group right here on this site! I saw how they worked very hard & were very instrumental in getting it returned to the market with many safety parameters in place. Once it was reintroduced I jumped through the FDA hoops.. got a script and found to my horror... it made my D worse. And I found in time.. I wasn't alone in having trouble with it. SO I know they will insist they didn't change the formula... but for me (and many others..) it was no longer the drug it once was for some of us. I DO sincerely hope though that is does work for others.I think it is fair to say there are very few drugs with as many restrictions on it as Lotronex. I think that Dr education is a good thing. I think the warnings on it speak for themselves. And I think with ALL of those things in place.. that it is indeed a safe drug.
 

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I like to educate people on issues that corporations or people choose not to.Specifically issues that can improve health and reduce risk of prematuredeath. If that involves debating the issue, so be it. I am not afraid tospeak up and am not scared by others implying that me educating peopleis arguing. To me it seems you like to argue. Or at the very least like tobe in control and to correct others. Everything I say, you like to challenge.Just an observation.What better source could I have listed? I took the direct qoute fromthe editor of the Lancet, one of the most prestigious medical journals.The Hippocratic oath is first do no harm. Every medical students recitesthis before obtaining their medical degree. It is insanity to prescribe a potentiallyfatal drug for a non-fatal disease. It was taken off the market because it caused harm.I think your experience with the drug is a fascinating one.It helped you once. Caused you to be worse another time.So different you are convinced they changed the formula.I think this is precisely the issue with IBS. Our mental state hasso much to do with it.
 

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You like to educate people.... hmmm... Ok.My... goodness.. how charitable.
What better source could I have listed? I took the direct qoute fromthe editor of the Lancet, one of the most prestigious medical journals.
Then you tell us it is from which issue of Lancet. Gee with the degrees you have one would have thought you would know how to source material.
It was taken off the market because it caused harm.
And it was put back on the market with the proper provisions in place to make it safe.
 

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There is some evidence that the people that get ischemic colitis (besides the people who have severe constipation and were mis-prescribed a medication for IBS-D) anyway sometimes have IBS like symptoms but they don't know how to detect the people with ischemic colitis tendencies until they get it.If you catch it early (so go to the doctor at the first sign of bleeding) it can be treated and is not universally fatal to all.If you want to avoid ischemic colitis there is one thing I know everyone can do and a whole list of other drugs to avoid.1. Die young. Risk goes up as you age, and if you die young you are unlikely to have problems with this (or a whole host of other potentially fatal diseases that become a problem as the body ages).3. The drugs I remember looking at when this site was heavily invovled in researching what the dangers were and working to get the drug back on the market (so this really isn't the first time we've heard there are dangers):Hormone Replacement TherapyIbuprophen (and possibly other NSAIDs as one does it the all do it and they all can damage the lining of the intestines)CocaineLet me check Pubmed if there were or something new has popped in the last 8 years or sosumatriptan for migrainesRizatriptan also for migraines (same chemical class)naratriptan also that same class (may be a problem when used with birth control pills and since hormone replacement is a known problem)Several antipsychotics: clozapine, levomepromazine, cyamemazine, haloperidolOh, and people with cardiovascular diseases probably shouldn't get colonoscopies as that triggered it in one personIschemic colitis following colonoscopy in an elderly patient on cardiovascular medication: Endoscopy. 2007 Feb;39 Suppl 1:E344-5.So just don't get migraines, become psychotic, go through menopause, but dying young will take care of that.
***********************There are drugs for pretty much every single disease that cause death for one reason or another. However the FDA decides it is OK to die for clear skin or to get an erection, but IBS is just a silly disease and if you'd just take your fiber you would be right as rain so no drugs for you.Every treatment has dangers, but remember this isn't something that happens to everyone, it happens to a very small percentage and I doubt all of them never took any over the counter pain meds, or avoided all other medications and we know a certain percentage of people are prone to this problem just from getting older.Now I do agree that making sure doctors only prescribe it for those that really need it (severe diarrhea that doesn't respond to other treatments) and making sure they are educated to understand that before they pass it out like candy.However I know people who starved for days and wore diapers to the FDA hearing just to get the one and only thing that controlled their severe daily diarrhea (up to 20 times a day every single day) back. They liked the year or two they could be productive members of society with jobs and able to take care of their kids and really wanted to do that once again.If you go to the "Diarrhea specific (prescription medication)" section and go back to 2001 or so you can read the whole long saga of this drug coming off the market and the struggle to get it back. Especially poignant now that you can have permanent side effects (although minor, they are still permanent and change your appearance) just to get thicker eyelashes, but you aren't allowed to take any risk to treat IBS as fiber is the one and only treatment everyone should use and the only one we need it is a total perfect cureall (according to the FDA).I just can't figure out why it is acceptable for over the counter medications and other prescription drugs to trigger this disorder in susceptible people but IBSers cannot be allowed any medication that might cause this. Nor do they warn us off all the other medications that can set it off.
 

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BQ,I don't know why you like to get personal with me.But since you are making observations about mybehavior (i.e. saying I like to argue), allow meto dissect your behavior. When I, a highly educated academic who uses scientificreferences who is confident, make a post, you are quickto be a contrarian and sometimes make snide remarks.This shows insecurity. Why are you insecure at this stagein life? It could be due to many things but most individualswell into adulthood who experience it had a controlling motherwho was very critical of them. In others, it could be frombeing the youngest sibling in a household where the othersiblings were outspoken and not shy. Compare your behavior to Kathleen who does not exhibit thesame resentment towards me despite her occassionally respondingto my posts. Her mother probably less controlling or she adjustedbetter.Your behavior is so obvious to anyone who sees your patternof posting. You never ask anyone to source material but thenyou threaten me with Terms of service because I did not use proper citations, as if this was a lecture I were givingat a conference. Treat me the same as you would others.I can cite references by memory but it does not matter sinceyou have already made up your mind on Lotronex. You despise me so much that you would never say,"oh sunnsnow, that's interesting, thank you for that reference."Yes, these posts are not supposed to be personal. But if a moderatoris dissecting my behavior, then I assume it's ok. With internships, research, work, I have spent over 8 years helpingpeople. Not sure why you respond with such sarcasm when I sayI like to educate. You, Kathleen and I post here. Are you suggestingI have another motive? If so, what are you suggesting that motive is?I've already helped around two dozen people who refused to get a colonoscopy(on this forum and two other forums) to get one and an untold amount tosee a specialist rather than a GP. In the past, I've lectured at conferences,community centers, health departments, to physicians, hospitals, andhave taught two courses, co-written a book chapter, etc. etc all for free.And I will do it for the next 30 yrs or so. Regarding your statement that if a drug is on the market it is safe.I don't know how to respond to this as everyone except the drug companies disargees with this. Every GP or specialist in the U.S. willtell you a list of drugs they will not prescribe because they are unsafe.
 

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Kathleen, You made some good points but there's a couple points you're missing.Accutane is taken by tens of millions of people worldwide. The mortalityrate of Accutane compared to the mortality rate of Lotronex is far different.Even though 400 people die a year of penicillin this is out of the tens of millionsof scripts written for it each year. It has a low death rate. Should physiciansdo more skin testing? Yes. Should certain people with past reactions to penicillinonly take it in an ER setting? Yes. And a lot of these people prescribed it hadserious lung infections.This argument does not hold water with me because I think accutane shouldbe banned for the majority of consumers who use it. I've seen people withlittle acne get prescribed this. I do know of people who were scared to leavethe home with such horrible acne and the drug saved them. Who knows whatthe percentage is, but tons of people who were on this pill, should not be on it.I have already seen three people on this board discuss their symptoms andalso discuss that they were on Lotronex. Their symptoms were not bad enoughto be put on this pill. You're correct about hormone replacement therapy. I was one of the few peoplein the U.S. who were speaking out against this in 1996. It causes breast cancerand heart disease yet the drug reps said it reduces risk of heart disease.At its peak, 18 million women were on this drug for what? Menopause, a totallynatural process that is SUPPOSED to occur. Reduction of animal fats, exercise,has been shown to reduce hot flashes by more than half in most women and completelyget rid of them in some women. Thankfully in 2002, 75% of women who were on it got off it and new prescriptions droppedby 75%. It's coming back again because physicians don't care about prevention of diseaseand the people who speak out against it are onto a new issue.
 

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However there are many people that Lotronex is the one and only medication that every did anything for severe and chronic diarrhea that completely controls and destroys any quality of life they could have. They may not die, but living 15 feet from the toilet isn't a good thing.I suppose you'd rather people sit home in diapers than have any chance at a life.Do not assume everyone that stopped taking it found something that was as effective, or that the other drugs were so much safer. Just drugs approved for depression can have dangerous and deadly side effects while the FDA won't treat drugs for IBS the same way.IBS can be severely disabliing and saying all treatments for it must have zero risk is not a good thing, IMO. Does it get mis-prescribed. Absolutely, everything does.Is it so much more ridiculously dangerous then every other drug, not in MY opinion.No other drug that cause Ischemic Colitis gets treated by the FDA the way Lotronex is. It only gets singled out, IMO, because people do not understand how severe IBS can be and think everyone just needs more fiber. Even if clinical trials show fiber is far from a cure all and actually makes a lot of IBSers much worse.People do need to understand the risks, but Lotronex is generally not the first drug tried on people and most doctors won't even do the paperwork to prescribe it as they don't want the extra interference from the FDA.I agree people should try other things first, but if you have run through antidiarrheals, a couple of different classes of antidepressants (which are all deadly to some poeple) and you and your doctor believe it is worth the risk and you know to go to the emergency room at the very first sign of blood and to stop taking it if you have any sign constipation I really don't have a problem with someone taking the risk it it means they get to have a job and go to the store for themselves. A lot of people with severe diarrhea predominate IBS are completely disabled by it.I'm sure if doctors could change our genes, keep us from ever getting any GI infection (viral or bacterial) and assure no one ever needed abdominal surgery and never experienced trauma or abuse of any kind they would. But other than that there doesn't seem to be anything to prevent.
 

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It should be available to people who have to write an essay abouttheir symptoms, apply to the federal government with an applicationand a consent form understanding all of the DEADLY dangers, andthey have tried everything else. If it is only prescribed to people who have had severe diarrheafor years and NOTHING else has worked (including psychiatriccare) AND they are told, "you could die from this pill. Thereforeyou need to assess what you would prefer, living like this for30 more years and or dying from this pill."Sadly, scientific studies show that the average person does nottruly understand risk or relative risk. No one thinks they willbe prescribed a pill and die from it. Ever talk to someone who has been paralyzed from a medicinethey took? I have. Ever talk to someone who went into shockor anaphylaxis or anaphylactoid reaction? I have. Evertalk to someone who had permanent heart valve damage?None of these individuals understood the risk and ALL of themregret the decision to take it.We can't ask the women who died on Lotronex what they thinkbut we can ask the 160 women who were hospitalized,"was is worth it?"What would they say?
 

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Well, then no one should ever get any prescription for anything because every drug can kill someone.Lotronex is the only drug taken off the market where something like 10% of the people who had it taken away wrote in protest to get it back. But they don't deserve to have a life.And I'm out of this argument as this kind of fighting really does no good to anyone on the board and is distracting for the original question.I understand your viewpoint. A lot of people have that viewpoint. I am not going to adopt that viewpoint.
 

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Tough Journey--It really can be tough when nothing seems to help. Try to keep your hopes, I know that can be very hard to do. Especially when you have been disappointed over and over again.
 

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To SunNsnowCan I ask, do you suffer with IBS diarrhea?? I was just curious as I believe that many people wouldn't care about the risks if it meant they could possibly hope to have a normal life free of diarrhea. When mine was at it's worst (it's better now than it was - I can manage to go out ) I wouldn't have cared. It would have been worth the risk to me and I would have taken it just to have the chance of being able to live normally. Bq and Kathleen have both been so wonderful to me over the last few years and they always try to help no matter what. I am so grateful to them both for their help and time when I have really needed it the most. I think they are both wonderful people and without people like them (and Overitnow) I don't know how I would have coped quite honestly. So a huge thank you to them from the bottom of my heart as I will never be able to repay them.
 

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Don't know what it is as I have yet to be diagnosed.Intermittant diarrhea with no abdominal pain for years.Most of the time formed stool but way above average amountof soft, watery stools.Last 9 days has been voluminous, watery. A few timesover the years, it lasts between 2 to 6 weeks.I currently have a perianal fistula, two anal fissures - one of themchronic, and two abscesses. Already refused three differentantibiotics due to their risks. On Augmentin now. Have also refused nitroglycerin therapy for the anal fissureand do not take any NSAIDS or any pain relief for the fistula. Also refused pain meds when abscess was hugeand burst. Before this, except for an acute bacterial sinusitis thatcaused tooth pain, I took antibiotics once in 25 yrs.Broke many bones while playing sports, refused treatmentevery time - no x-rays, no pain meds, just a splintI purchased at the drug store. Was in a car accident, severe whiplash,pain for 1 month, refused prescription pain meds and refused to takeany NSAIDs or over the counter pain meds.Had no doctor from 1990 to 2010. I understand pain and diarrhea and if people want to take a safepharmaceutical with little risk, I support it. Personally, I think daily dose of loperamide (Imodium) is unsafeand any doctor who supports it should lose their license. I think getting to the root of the cause is the most important method to heal people. For Crohn's and IBS, there is no doubt that stress causes flares.Removing that stress should be the goal but GI specialists donot focus on this. Stress is the cause of the flare. The cause is ignored by mostGI specialists. Think about that.
 

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Hi,Oh my goodness poor you. I wasn't sure whether you also had diarrhea problems as well. I did used to take lots of antibiotics and never really questioned them when I was younger but I shall be very weary of them in the future.I do agree that most doctors these days do tend to give out tablets as a way to stop the problem but not find the cause. Stress does have a lot to do with my problem but not always. Sometimes it does hit me without stress being a factor and I believe in my case the diarrhea came first out of the blue and then the stress gradually got worse because of it. Although a few years before it all started i did go through a lot of stress and an emotional trauma so I'm aware that it is probably all linked together. I think it is a good idea to look at the person as a whole.I do take loperamide everyday and i hope that it isn't going to do me any long term damage but I can't manage to keep a full time job and support myself without them. I really struggle to do that anyway and I have tried to not take them everyday but I simply can't get out of the house, drive to work etc.. but it is a risk I have to take. I want to carry on as much as possible and for me at the present time, it is the only way that i can do that. Although I hope that one day I won't have to take them everyday but at present I am very grateful for them. I hope that things settle down for you soon. Claire
 

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No, my problems don't need sympathy as this issue relative to the problems most people face in the world are nothing.Literally nothing. A fistula wrapped around my anus with abscessesand fissures is nothing compared to colon cancer, anal cancer, rectalcancer, small bowel cancer, Crohn's, colitis, Whipple's disease, undiagnosedceliac disease, or any other issue related to the digestive system. The surgery can be quite complicated if the fistula goes through the sphinctermuscle but the actual fistula itself is no big deal.And if you compare our life with the lives of the majority of the peoplein the world, it is amazing. 900 million people will go to bed hungry tonight.One billion to not have access to clean water. Hundreds of millions have diarrheaevery day. Ok, scratch that one. Many people on this board have diarrheaevery day. But you get my point. A warm bed in a safe house with hot foodwhen we want it. I do think daily abdominal pain is something serious. Something far more seriousthan my current fistula/fissure/abscess problem as my issue only causes intermittantpain when the abscesses flare up which has only been 5 times in 95 days. I took loperamide three times and had to take naps because it made me so drowsyand I cut the dose in half to 1 mg. (2 mg the first time knocked me out.) Is it possible you could cut the loperamide and see what happens? Perhapsyour diarrhea will stay the same even though you stop it. It is possible but the only way to find out is to try goinga few days (or two) without it.
 

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Claire,You mentioned emotional trauma prior to the IBS. Is it possible that if you address the trauma with a psychiatrist,that the symptoms of your IBS-D will improve?It's just a hypothesis. I'm not a psychiatrist or psychotherapistbut I do know that unresolved traumatic experiences can causeill health and some people have healed certain ailments by tackling their past. I know its not easy to do and its easiersaid than done.
 
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