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Discussion Starter · #1 ·
I have been viewing the postings in this forum for quite awhile and find that there is a significant number of anecdotal reports regarding the effectiveness of diverse "treatments". Although some individuals may derive benefit from certain "treatments", it is not certain whether a number of these interventions have benefit for others or if the person recommending them actually has IBS.As a suggestion, it may be helpful if we place emphasis on validated treatments, allopathic or holistic. Otherwise what is presented is diffuse and not substantiated and has limited value to the rest of us.
 

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I have never been diagnosed with IBS but what I proclaim helps- a fructose restricted diet- is backed up by scientific studies http://www.ibsgroup.org/ubb/ultimatebb.php...t=000856#000000 Unfortunately in the last one year this board has been filled with alt/med treatments and has lost its usefulness as a substantial board. As a As a suggestion, perhaps people whoi feel strongly about this should intervene on those threads and make their wishes known. It is impossible to stop the tide unless members use their rights to express dissonant views. The alt med people have the courage of their convictions I might say and are very vocal. EWitness the numereous Dr Dahlman threads.
 

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i don't think it's necessary to attempt to censor with regard to what people can and can't post when they want to proclaim what's helped them. most people are pretty careful to be clear about whether treatments are allopathically approved, often adding caveats e.g. 'i know we're all different, this has helped me but that may not be the case for everybody' etc. if the 'i'm super-science bod (despite having no training) and smarter than the average IBS-sufferer' crew want to shut the rest of us up maybe they should start their own forum.this place isn't a peer-reviewed scientific journal, it's a place for sufferers to engage and discuss their troubles and approaches.
 

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Discussion Starter · #5 ·
MissC,You are correct. There are a number of people here who are suffering from debilitating disorders and they have every right to express themselves and what works for them. The point I am making is that there may be a benefit of having a section devoted to validated treatments and interventions of all sorts. This does not negate others right to relate their painful situations but provides some structure to the diffuse debates about questionable interventions that are well intended but do not apply to the majority. Ultimately, this disorder is not going to be managed by unsubstantiated anecdotal experiences but by well researched interventions. For example, I have reviewed significant numbers of products online that indicate that they "cure' or reduce the symptoms of IBS. However, I have observed a clear lack of substantiated research in the form of clinical studies that supports the efficacy of these products, thereby misleading many sufferers. In addition, how do we know that each person in this forum, who notes improvement with certain products, actually has been diagnosed with IBS, or is self-diagnosed, and in fact may have an unrelated condition, etc ? In cases such as these, statements indicating substantial improvement from specific treatments, although well intended, can actually be deleterious to others.
 

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quote: As a suggestion, perhaps people whoi feel strongly about this should intervene on those threads and make their wishes known. It is impossible to stop the tide unless members use their rights to express dissonant views. <...> If you want to know who the alt med people are they are kel,calid, spasman, dr dahlman, most of his patients, meckle, Fachylachya, crankypants.
Trying to incite some vigilante action, Bonniei?And what does it mean to be one of your "alt med people"? Does the translation go something like "new-age airhead"?I can't speak for anyone else on your hit list, but I'm going to set the record straight here as it applies to me. I am a medical editor, have been for 14 years. I work with doctors and their words on a daily basis. I like doctors, I like working with them, I admire their work, and I respect the value of well-designed research--even when the study population is small.I think if you asked most of the physicians that I and my company deal with about IBS, they would readily admit that orthodox medicine is as a feeble infant in the face of this disorder. We didn't even have pharmaceuticals specifically targeted to IBS until a few years ago. I have seen no sign of broad scientific consensus as to the cause(s) or pathophysiology of IBS, much less how to treat it.Meanwhile, life goes on, so does IBS, and we have to deal with it. And that presumably--to remind again--is what a "SELF HELP and support group" is for.Yes, I am open and even friendly to "alternative" ideas for diagnosis and healing (much of which is good folk medicine that got thrown out with the 20th-century bathwater). Frankly I think it is foolish and naive to categorically reject alternative medicine. We need all the tools we can get.
quote: As a suggestion, it may be helpful if we place emphasis on validated treatments
Defined how?Irritable bowel "syndrome" is not, in fact, a single syndrome. Individual variations are considerable. If someone has been struggling with a symptom pattern that is similar to what another member has posted, and the first person has found a dietary or other strategy that works--perhaps after several unsuccessful trials of other approaches--that to me is a level of validation and is worth passing on to a fellow sufferer who seems likely to benefit.
quote: this place isn't a peer-reviewed scientific journal, it's a place for sufferers to engage and discuss their troubles and approaches.
Well said, thank you, Miss C. I saw this thread just before going to bed and feared any response from me at that hour would be a little too cranky :). Glad you were up early.
quote:The point I am making is that there may be a benefit of having a section
That at least is a concrete idea that forum administration (whose option it is, not yours or mine) could implement without resorting to censorship or to encouraging more in the way of vigilantism than is already being practiced here. I have to wonder why you didn't say it the first time.
quote: statements indicating substantial improvement from specific treatments, although well intended, can actually be deleterious to others.
Don't be so paternalistic. I guarantee you that the users of this forum are smarter than you're giving them credit for.
 

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Discussion Starter · #7 ·
Crankypants,Unfortunately, you are too ready to "rumble' and engage in combat rather than to flow with the ideas I am proposing. For example, your statement " Don't be so paternalistic. I guarantee you that the users of this forum are smarter than you're giving them credit for", is highly questionable and disputable. In fact, you and I or anyone else does not know the actual diagnosis of many of the posters in this forum. Some posters may be self-diagnosed, others may be misdiagnosed while some may have a differential diagnosis. So, it is not a matter of my not giving credit to forum members for a lack of "smarts" but that diffuse, generalized and unsubstantiated feedback and opinions about treatments and other interventions can be potentially dangerous to some posters or viewers of this forum. Some of these individuas may not been officially diagnosed and may have an organic basis to their "IBS" symptoms. Based on what they believe is IBS, they may engage in self-treatment thereby delaying appropriate medical diagnosis and intervention. If this is paternalism, then I accept the label. I see it as compassion and concern for others who may be too apprehensive to seek appropriate medical care and followup.
 

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"I guarantee you that the users of this forum are smarter than you're giving them credit for."pretty much what i was going to leap in with, crankypants, but you got there first! west, you seem well-intentioned but i do believe you're not giving folks enough credit, not only for being informed and having more than half a brain, but also for a frequent 'for heck's sake SEE A DOCTOR FIRST!' admonition to newbies who announce that they have self-diagnosed and ask for advice as if the rest of us guys are medics ourselves.as for your pejorative description of the 'diffuse' nature of info available here: well, i for one like it that way, but maybe you could suggest to Jeff etc the setting up of a kind of 'purely allopathic interventions' type of forum for those who don't want to hear about other options. might not be a bad idea at that - it could get certain people out of our hair!i, and i am sure others also, am open to ideas both allopathic and alternative. i - and i am sure most others here too! - am plenty smart enough to discern the difference. there will always be those closed-minded enough to refuse all conventional intervention - or any kind of folk medicine, even if proven over thousands of years. in the end you can't legislate for stupidity, or completely protect people from themselves. sorry, i think CP's 'paternalistic' tag wasn't entirely unjustified.
 

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"As a suggestion, it may be helpful if we place emphasis on validated treatments, allopathic or holistic. Otherwise what is presented is diffuse and not substantiated and has limited value to the rest of us. "West,loosen up there a little. people here are not as gullible as you might think. the average person will not act on new information for months at a time. when they finally do act it is usually after quite a bit of reading and thought.forums are for sharing information. each of us needs to sort it out ourselves. we are not selling a product; we are sharing our life stories.
 

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Discussion Starter · #11 ·
MissC,Unfortunately, you are misconstruing my statements leading to a misinterpretation of my points. No where do I say that allopathic is the only means to deal with a very complex biopsychosocial disorder with myriad overlapping functional and possibly organic symptoms and conditions. In fact, as noted in my previous posting regarding the efficacy of an alternative Chinese herbal product in the treatment of IBS, which you and Cranypants did not acknowledge, I clearly am open to ANY treatment that has been demonstrated to work for the majority. It is not a matter of terms such as allopathic versus alternative but that the intervention has been proven to be of benefit.You and Crankypants (appropriate name) are too quick to draw conclusions thereby negating viable and ethical feedback that may be of assistance to many participants in this forum. The problem is not paternalism but your making presumptive assertions regarding the level of "smarts" of viewers without nowing the actual nature of many posters' conditions, and the type of appropriate treatment they require. Quite frankly, this level of thinking can be potentially dangerous to individuals who are self-diagnosed or in denial of more serious symptoms.
 

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Discussion Starter · #12 ·
lek,Obviously this forum is for sharing information and to provide support to one another. However, when you state that the "average person..." you, I and anyone else do not know the exact medical issues of anyone in this cyberspace other than what they report. In terms of selling any products, when people are in pain they are vulnerable to all sorts of product claims, intimations of cures or palliatives and to individuals who state they have the answer to their problems. That is why, in addition to telling our stories, it is relevant to have some substantive evidence based data to support our goals of pain relief rather than a diffuse assortment of well intended but potentially deleterious opinions and anecdotal impressions that for the vast majority create greater anxiety and frustration when they fail to work.
 

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i agree with you that when things do not work they end up causing greater frustration.the problem with studies is that they are expensive. even when studies are available it does not translate into real life application. many positive studies are worthless and many things that don't have solid research end up working.studies are great but they don't tell the real story due to dozens of reasons.trial and error is what it came down to for me. that's just the way it goes. plain old, unsophisticated trial and error. i tried to get myself cloned 100 times so that researchers would have a perfect study sample but none of the cells took.
 

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west456 has extremely severe polysyllabic disorder! and it's contagious! watch out people!heh. ok, i could sometimes be accused of the same thing myself. ok, i instinctively disagree with you and it's a real pain in the arse to have to think out why at this time of the weekend when i should be savouring the last drops of it (sigh). but never let it be said that i failed to get the last word in.heh!ok, it would be helpful for you to define exactly what you mean by empirical validation. empiricism being the opposite of pure theory (it's a long time since sociology and philosophy classes for me and i'm not about to crack open a dictionary at this time of the evening. so don't get too happy and smug if i'm a little inexact). empiricism. real world data, experiment, results. presumably most folk medicine, tested through the ages, would pass your test: garlic, TCM, acupuncture, goldenseal... lots of herbal and psychological treatments, spiritual practices, bodywork... also formal clinical trials. at what point does a non-allopathic treatment pass your test? define some terms. a decade? two decades? ten people? a hundred anecdotes? ten thousand? is one person's unique combination of 'validated' treatments 'ok', or does it require further confirmation? or are you only referring to commercial products ... which i might have more sympathy with.i'm interested to know if you would actually like to see some censorship here on this issue e.g. if somebody can't come up with 99 other people who've had beneficial results with the exact same regimen as herself her posts should be deleted?not sarcastic here. but curious. and a little disturbed about your true motivation.
 

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re-reading your post ... it seems to me you're intimating that non-trad products are fine ... once they've been through clinical trials. there are problems with that. rigorous experimentation is great. it also tends to happen when a drug company thinks a patentable product might be involved. which in the case of herbs, bodywork, non-GM probiotics, is extremely unlikely. alternatively when an academic has a whole lot of clout and some unusual interests. a lot of us have urgent problems that need fixing yesterday. personally i'm not prepared to wait for peer-reviewed studies on every single non-toxic anti-bacterial herb (my prob includes dysbiosis) before i try it out. and frankly, that is my right.sharing info with vulnerable people: we're all vulnerable. and we all have a responsiblity to use our brains to assess the sea of information we all swim in. coca cola adverts strongly intimate to me that drinking their product will make me beautiful, successful, popular and contented. if i fall for that then i deserve a whack round the head rather more than coca cola. if someone chooses to self-medicate without reference to any trained medical authority at any point, then let me strongly suggest to you that THAT PERSON IS STUPID and a a strong contender for the Darwin Awards (check 'em out).if i tell you that drinking weedkiller cures IBS: are your family going to sue me for my (untrained!) idiocy after you're dead? you don't need to stick your own hand in a blender to know that sticking hands in blenders ain't a good idea.
 

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Discussion Starter · #16 ·
MissC,Obviously, we all have pain and symptoms that draw us to this forum. Obviously, the alternative or allopathic treatment that works for you may not for me and vice versa. This is a serious disorder that manifest itself differently in each of us. Therefore, running from one product to another based on another's positive experience does not provide relief for the vast majority, and in fact is enervating. I can only speak for myself and quite frankly being confronted with this disorder requires a methodical "treatment plan" that is oriented to my symptoms, as it should be for yours. Should I listen to each person who presents another vignette regarding their positive experiences with herb x and y or this fatty acid or digestive product? Yes, I will definitely listen but with a "third" ear. At this stage, I can't afford to run around like a chicken without a head without a delineated plan of action that may improve my symptoms. This is the underlying point I am attempting to make. Yes this is a very frustrating disorder because of its complexity. However, to not have clear direction, to puchase every elixir that is suggested, or to download programs offered on the web promising remission of this condition going to lead to greater frustration and dissapointment.
 

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once again, you better believe it is frustrating. all i can say is that as a 20 year sufferer who has received no help from allopathic (symptom supressing) medicine the only choice was to take matters into my own hands. this has resulted in extreme improvements in terms of wiping out all pain/cramps, all bloat, gas at an all time low, and odor low.Ibsacol has allowed me to form stool for the first time in 20 years and i would be out of here except that ibsacol can be overridden as soon as i eat something that my body does not like. therefore i have a ways to go. i think it is a fact that we will waste money on worthless products like Digesterin and others but what choice do we have? wait for some miracle pill from Glaxo? i am not going to wait. i think you know the answer -- read and read and read and then eventually some things will seem to make more sense than other things. once that happens you can come up with a rough plan.personally, i don't think the Bowelsoothe will work. if it does work then it will be because the person has addressed some other issues -- diet, maybe work on some dysbiosis issues...probiotics.i think the dahlman approach is a plan that makes sense. i am fairly convinced that at the very least people can get some symptom relief from it. he even states that a person can do it on their own.i am glad that i pursued it. i was spending $2.50/day on VSL#3 and none of this bacteria will even implant. he got me on a far superior product that at least has a chance of sticking around. if his program fails --i am not too optimistic-- i plan on moving on to a couple of other programs one being Dr dantini's anti-viral program.
 

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The premise is failed to begin with. If there were "validated" treatments available, doctors wold be suggesting them and this board would be unecessary.There will never be a "validated" treatment because the medical/pharmacuetical world attempts to find one molecule (drug) to treat one symptom (gas, diarrhea, constipation) that they define ans a single disorder (IBS). The reality is that any one person may have gas for numerous reasons. They might have diarrhea for numerous reasons, and so on. If you are waiting for a "validated" treatment that will help every sufferer, you are waiting for Godot. If you want proof of this, scan this board. Virtually every conceivable treatment shy of eating crabgrass at midnight has been discussed.
 

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"being confronted with this disorder requires a methodical "treatment plan" that is oriented to my symptoms, as it should be for yours."west456, that's really not your business. you're speaking out of turn.i note you have refrained from answering any of my questions or points. i will therefore mark you down as another frequenter of this forum with whom debate is pointless and fruitless as you pursue your own loaded agenda.
 

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There is a certain set of criteria that are used in scientific studies to distinguish IBSers from people suffering from other things.There are many studies with a defined population (usually Manning or Rome Criteria where the diarrhea, gas, etc has been tested well enough to rule out other causes of these things...so the people in the study do not have giardia or other infections, metabolic disorders, or autoimmune disorders of the intestines, etc).No studies ever study anyone with gas for any reason, anyone with diarrhea for any reason, etc.At least in the research I have read (and been a guinea pig for) most researcher do limit the studies to those where it is very unlikely they have something other than a functional disorder.In these studies there are quite a few treatments that are "validated" that is the people getting the treatment are statistically different from the group recieving placebo or sham treatments.No one will ever validate any treatment for any symptom, disease, etc for 100% of the people who take it for that symptom.This can never happen for anything. Everyone knows that.All drugs (or any other treatment you want to imagine) will only work for some percentage of people even when you can insure that every single one of them has the exact same thing going on.You seem to be building a straw man here.Validated as MOST people use it refers to Treated group is statistically different from control group (placebo or sham treatment).In the study I was in that did CBT vs a certain antidepressant for IBS.They only took people who met certain criteria (so they were not trying to do CBT for giardia or anything else).They used controls (placebo for the drug portion and sham treatment --come in same # of times to office to get information, but no CBT).They compared the controls to the treated group.And both the antidepressant tested and the CBT (cog. behave.therapy) were validated as the people in those groups did BETTER than the control groups.There are at least some people who will want to at least do the run through of "validated" treatments, those that have some known probability of working, before venturing farther afield for treatments that have never been tested well enough to have any good idea if they work better than placebo.FWIW there is at least one study that validates the use of probiotics for gas production/bloating in IBSers. Didn't work for 100% of people, but it did work much better than the placebo.So that is a "validated" treatment, although for other IBS symptoms/populations the results haven't been as good, but they were looking at different results (like diarrhea or constipation where the results would be less likely IMO).K.
 
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