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Discussion Starter · #1 ·
With respect, I have to take issue with the comments, re bandaids. I do understand that researchers are working on this, and have been for a lot longer than the 10 plus years I have enjoyed a normal life; but over that time, and working through a number of doctors who have either retired or just moved on from their family practice, I have yet to meet a single one who had ever heard of the treatment options I have taken. Further, in spite of their seeing how my condition has improved, and to a (wo)man having offered the standard "just keep doing what you are doing" advice, they have never been able to suggest a single doctor or researcher who would be interested in looking at how or why this approach to our problems could be useful.If, indeed, I had not lucked or blundered into these supplements, I would presumably be prescribed a statin for my cholesterol, popping Immodium like jelly beans or on an anti-depressant for the D, a PPI for the GERD, some kind of anti-inflammatory for my arthritic hip and knees, a restrictive diet to keep my weight down and reduce the liklihood of diabetes that is rampant in my family since I could no longer be active, something--if something even exists other than a painful surgery--for my growing prostate, and god knows what for the liklihood of cancers, especially as I had spent some time in an asbestos mine in my 30s, always assuming I hadn't already died from that heart attack or driving off the road, asleep at the wheel. Then I would have a bandaid over every one of my "wounds." Of course I am lucky this has all worked so well and I know that given the number of causes for our problems that nothing will address all of them; but I can never believe that I am in any way special, given the numbers of others who have similar stories to tell.This commitment to my health came late in life and only after things had gotten so untenable that I could no longer pretend that I hadn't backed myself into a corner. Having had 10 years of pretty vibrant life as an effect of these changes, rather than just limping along, is an end that I would imagine everyone here would be pleased to share. Ciao.Mark
 

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Mark not sure what you mean by your post..but....As far as the bandaid?? I am guessing but..I was ONLY saying this is not the forum to discuss causes etc as we are NOT experts here. We are only sufferers. In my understanding... this BB is mainly for support and understanding.I can't tell you why none of your Dr's were interested in your supplement or why it works. Maybe you can contact the UNC Center for Functional GI Disorders or the IFFGD? Those are the premier research ctrs here. Perhaps they are the ones who need that info. Most Gen Practioners don't have time to be up on the latest and greatest research on each and every ailment. Soo not surprising they keep saying "Just keep doing what you are doing." to you.And by all means keep sharing what has worked for you here and hope it works for others.
 

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u know i've read alot of posts here................there have been many people who swear by this or that..........god knows i've tried so many & all of the ones people have listed here, even some Rx meds, which i do not think r that answer to anything doing with health...........but the fact that for u that the flavonoid works so well, only means that for u, that was the deficiency or the help u specifically needed...........everyone is so individual............i do think that any reasonable supplement should b given a 2mo try..........i have with so many things & i've spent alot of money on these things..........wish it were in the bank instead........for me tho, i had to say i tried this or that........for myself, it was a much more serious problem & as usual my body was trying to tell me something.........when u have excessive anything, u have to look at all the possible causes of something like this.........& when u have ibs-d for a long time, u got to look at inflammation..........because if u didn't have it in the beginning, u got it NOW!!!........& inflammation doesn't always start with the intestines........the inflammation can cause more D, even if that is not the underlying cause.........there is no one solution for anyone.........there r basics, tho...........
 

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I do have a problem when people label other people's treatments that work as "band aids".Pretty much everything mentioned by anyone (for IBS and any other chronic condition) is a bandaid if like me you take that to mean you gotta keep doing it if you want results. I think being supportive of people exploring more options is better than telling people what they are doing is wrong because you have a value judgment about that approach. But maybe I define support differently than everyone else.I do think sharing the likely good and the likely bad of every treatment is helpful, but you can do that without telling people they are bad for not doing it your way or the only treatment that is right is the one that works for you. Or at least I think people can do that, but maybe I am wrong.
 

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There is plenty of research out in cyber space on why an antioxidant supplement would help. Antioxidants limit the grown of non-probiotic bacteria, GSE is a natural anit-bacterial and anit-fungal. Antioxidants also protect against free-radical damage caused by numerous toxins and heavy metals. There is more to it but no one has put it all together.You can get rid of all your band-aids, if you can give your body what it needs to heal.
I do think sharing the likely good and the likely bad of every treatment is helpful
Hard to know what those treatments are for new members when they are all buried under thousands of topics. What are the chances of some of all the known "treatments and band-aids" getting pinned like the calcium thread. This would be most helpful to anyone try to make life manageable.
 

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Why can't the links at the top of every page labeled treatment and medications and diet work?Also the stories link is all about collecting all the what works all in one place for easy access. If you have not posted your success story on the stories section please do so. It also is a link at the top in the blue and light yellow bars on every single page of this board. I am always suggesting people who want to read a bunch of "what worked for me" to go check that out. It really is a good resource and is there for the reason of gathering all the bandaids together in one place.If we pin a bazillion posts at the top of a forum page that takes up a lot of room and can limit the number of new topics that will show up on the front page and anything that falls off the front page without getting answered usually will never be responded to, and I don't think that is fair, either.Also how do we pick which of the people who took Levsin (to pick something) as the one post that gets pinned. Pretty much everything gets several posts every month and if we pick one person's as the pinned that could make everyone else that posted about whatever feel bad about not being the one selected for the honor.Direct links if you can't find them in the menu bar on every page.The success stories link: http://www.ibsgroup.org/taxonomy/term/25Treatment: http://www.ibsgroup.org/treatmentDiet: http://www.ibsgroup.org/ibs-dietMedications: http://www.ibsgroup.org/medicationsHere is the link to the announcement of the Medical Advisory Board which was put in place to make those pages sources of good informationhttp://www.ibsgroup.org/forums/index.php?showtopic=114042We do try to make sure that important information is located in compact places and have an FAQhttp://www.ibsgroup.org/forums/index.php?showtopic=104883
 

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Sorry Mark, highjacking your post. I'll make this shortKathleen or any moderator, the links are great, they are a good start, but that lack any personal expierence. Some topics are already covered in the sub forums... proboitcs, calcuimI would like to start a topic, Pinned treatments ideas, where anyone can suggest a topic that they would like to be pinned, on the pinned topic will be a link from the forum search engine to all past threads on such topic. If the topic is worthy and not just some scam then the topic would be pinned in the correct subforum. this will save the moderator team any run around work with finding topics and in the long run will free up some of your time, since you wont be answers the same questions from the last 10 years and for decades to come.Would you be Ok with this?Just trying to help those looking for answers.
 

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The problem is every pinned topic bumps a new topic off the page.So if we have too many pinned topics then there will only be room for a couple of new topics and most are only responded to while they live on the first page.The STORIES section is ALL personal experience for those that want that. I know it gets read a fair amount and I wish more people would participate because it is the best place to go if you want to read a bunch of what worked for me posts. The link in my sig is to my story in the story section and I know it gets read a fair amount because of that. If you think your story isn't getting enough attention, PLEASE write it up and post it to the story section then link to it in your sig. That will get more attention than if you pinned your treatment of choice to the top of the forum. I find a lot of people don't tend to read the pinned topics all that much until you send them there anyway.I just don' t think we can have 25-50 pinned topics on the front page (and everyone will want their topic pinned) and have anyone ever have their new question answered. Other boards using this software do have a bazillion pinned threads and then you miss most of the new posts because they fall off the front page so fast.Even if the topics are pinned most people won't open then and will start a new thread rather than post on the pineed topic. Unless we want to start making it so no one can start a new topic unless it is verified and we have to spend more time getting people to find the right old topic. That works OK with a stable population of posters but here a lot of people come and go.I just don't want to have people have to go the the second or third page just to find new questions. Once the question falls off the front page it WILL NOT get answered. Having the minimum number of pinned topics makes it so more people get a chance to ask a question and get it answered. I don't know why that is a bad thing. Especially since the "treatment that worked for me" has a home on the board. And I don't want to get into fights between which person's brand of which supplement should be the one in the pinned topic or they think brand A needs it's own pinned topic and the more different topics pinned...I just worry about how many people will be peeved off the wrong thread on the same treatment gets the pinning. And i don't want to go through 15 years of posts to find the first person that ever mentioned every single thing. As first mention may be the fairest thing.
 

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I haven't writen my story because I don't have IBS. I feel like it would not apply/or out of place to the IBS forum.I userstand you point about topics falling the first page and no one reading them.I'm not saying you should find the first ever post about a certain treatment. Here is what I'm thinking.EXAMPLE:L-glutamine (Add to OTC suforum)L-Glutamine is a free-form amino acid that's excellent for stopping diarrhea and also very healing for the gastrointestinal tract. It is the primary nutrient for the mucosal lining of the intestine. Take it on an empty stomach if you want the anti-diarrhea action. When combined with food, it does not have an anti-diarrhea effectForum Search result for L-glutaminehttp://www.ibsgroup.org/forums/index.php?a...=%2BL-GlutamineDisclaimer -It works for somepeople and not for others, as with most things it is up to the user to find out if it works (or something like that)If people want to add on to this topic they can or just review the search results. If some adds a new psot about this topic a moderator will just redirect them to this pinned topic. I dont see the forum having a that many pinned topics and the topics that do get pinned will be spread out over many sub forums. I dont foresee any pinned topics on the general discussion. Your thoughts?
 

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My concern is even if we have one for Bentyl and one for Levsin everytime everyone gets any other anticholinergic that acts the exact same way but happens to be generally prescribed for something else they will insist it needs it's own thread because it is a different name and how dare we name this one and that one but not pin a topic for their one.There are a dozen or so anticholinergics and then you have every antidepressant under every name from every different country and that is dozens, and I could list off at least a couple dozen different supplements even if you don't start off with each different brand of probiotic that anyone ever tried that might need it's own pinned topic.....it starts off one or two and could very easily become dozens for each forum because people want each name with its own post. I know how people tend to be. :(If you want the list to find the terms to search the main links get most things, and I hate to get into you endorsed X's pet theory but not mine stuff. I have enough migraines without having to mediate that.Anyway I put a link to the moderators and if any of them think they want it as a pet project I will not stand in their way.
I also worry about all the people that X doesn't work for getting peeved off if something that didn't help them gets special attention.
 

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I think people ought to just use the features we already have and use the, IMHO, terribly under-utilized "Search" function.
 

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If you want the list to find the terms to search the main links get most things, and I hate to get into you endorsed X's pet theory but not mine stuff. I have enough migraines without having to mediate that.
You said it, not me
joking, jokingI can see where it would be difficult to stop what gets pinned and what does not. IMHO Different brands would not get pinned. For couse there would be a big disclaimer that these pinned topics may or may not help, it up to the user to figure it out. the mods don't have to do the leg work, let the forum community give back a little. It is the least some of us can do to give back to the forum.So sorry Mark, did not mean for this, I should sent a PM to Kathleen.
 

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Like I said: If folks would a. read a little and b. USE the features that we already have here, they could find what they need.Brands are the least of the problem....There is no way to say "x" get pinned and "y" doesn't Pat. Let's just encourage folks to use the tabs on the menu bars, the FAQ and the Search function. THAT would be helpful from the Community.Thanks
 

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I think people ought to just use the features we already have and use the, IMHO, terribly under-utilized "Search" function.
Agree 100%. It fun what you can find with that feature from back in the early days. Maybe we should but a HUGE SEARCH BUTTON right at the top of each sub forum.This is part of my job coming out in the forum. There is a vast amount of useful info on the forum, BUT it is very unorganized. We could use some standardized work instructions and data organization to make the years of knowledge and expierences easier to access.
 

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Discussion Starter · #15 ·
It's OK Pat. I really wanted to just interject a little story for BQ from my long ago childhood. When I was about 7 or 8 I used to ride around with a neighbor girl, Susan D, on their double driveway after dinner. We would talk about whatever was of concern at that age. At some point she asked me where I went to church. I said the Christian Science Sunday School. They were Catholics. I understand that those two groups did not get along together; but, hey! I was only 8. In any case, we never rode around together and never really spoke again, in spite of living so close.When I first posted this thread, I was afraid that I would no longer get to play with BQ. I am glad that it doesn't seem that it will work out like that. Thanks BQ
Mark
 

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Pat, Well, glad we are in agreement then. :(Mark, Still not sure what you are talking about but I am glad that you are glad.
 

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Mark, you have been and continue to be a inspiration for myself and others. There is so much negativity on these boards at times that I don't bother comming back here for weeks at a time. I appreciate your help and I know others do as well. Keep up the positivity!
 

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Mark, I absoutely agree. Yu ar esuch an inspiration and I so appreciate that We need all the positive thinking we can possibily get. Keep up the good workDeeDee
 
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