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Until one is stable...
      #355058 - 01/30/10 01:03 PM
Windchimes

Reged: 09/05/09
Posts: 581
Loc: Northern California

Until one is reasonably stable, I don't think it is a good idea to give out suggestions to others that may only confuse them, or make them worse. IBS is a very personal thing, and everyone is different. We each and all need to find our own path. Heather's articles are very helpful as to reading material. Personal experimentation is sometimes the best, and then share after you have found what works for you. I discourage anyone suggesting things that they have not tried nor had success with. This is my take on these things, and stress is a key factor with IBS flares and lack of progress.

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Senior female, IBS-D, presently stable thanks to Heather & Staff

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Re: Until one is stable... *DELETED* new
      #355069 - 01/30/10 05:14 PM
Thai

Reged: 10/04/09
Posts: 104


Post deleted by Heather

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IBS-D

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No offense intended to anyone... new
      #355075 - 01/30/10 10:03 PM
Windchimes

Reged: 09/05/09
Posts: 581
Loc: Northern California

My post here was not directed at anyone in particular, just all of us partcipating on the boards in general. If you have found something that has REALLY helped, then please do share. Genuine help is not based on speculation. Sorry if you were offended. People with IBS can be rather 'touchy' at times. Please do not attack others on assumptions. We are here to support one another rather than fight with one another.

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Senior female, IBS-D, presently stable thanks to Heather & Staff

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Not offended, touchy, fighting or attacking.... new
      #355080 - 01/31/10 07:20 AM
Thai

Reged: 10/04/09
Posts: 104


simply disagreeing that one needed to have absolute success before posting what they were using or trying.
I repeat.....I want to hear about what everyone is learning, trying, using, etc....whether or not the results are absolute, stupendous or just maybe make them feel a tad bit better! Cuz if they feel a tad bit better then maybe for me it could be a bit better than just a tad.....

No hostility here just how I would like to see things, thats all.

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IBS-D

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Re: Until one is stable... new
      #355089 - 01/31/10 09:22 AM
Little Minnie

Reged: 04/16/04
Posts: 4987
Loc: Minnesota

Well I have certainly seen people get confused by posts of someone who presumes something that isn't true many times. But it is for the experienced members here to correct that stuff I guess. My main concern has been the fact that people with D say something is unsafe for them and people with C don't realize that it may be fine for them and vice versa. It is best to be descriptive on what something actually does to you when you say you can't eat it.

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IBS-A for 20 years with terrible bloating and gas. On the diet since April 2004. Remember this from Heather's information pages:
"You absolutely must eat insoluble fiber foods, and as much as safely possible, but within the IBS dietary guidelines. Treat insoluble fiber foods with suitable caution, and you'll be able to enjoy a wide variety of them, in very healthy quantities, without problem." Please eat IF foods!

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It's not a perfect world that we live in -nt- new
      #355096 - 01/31/10 10:12 AM
Windchimes

Reged: 09/05/09
Posts: 581
Loc: Northern California



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Senior female, IBS-D, presently stable thanks to Heather & Staff

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Re: It's not a perfect world that we live in -nt- new
      #355107 - 01/31/10 11:29 AM
Thai

Reged: 10/04/09
Posts: 104


What does that have to do with anything??
I'm lost here..........

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IBS-D

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What is stable, really? new
      #355135 - 02/01/10 08:28 AM
MikeCA1870

Reged: 03/30/09
Posts: 110


Because of following the diet and taking medication, I haven't had D in over six months. Is that stable?

Because on the other hand, there hasn't been a day where I haven't spent most of it in pain and discomfort. So in that sense, not very stable.

You know, there is a popular internet file sharing protocal called Torrent and what makes it useful is that if you want a file you don't need to get it from someone who has the whole file. Rather, you can get 10% from 10 different people with 10 different subsets of the file and so end up with all of it. The point is, any advice given here is worth noting, as if you put together the things learned by 10 people who maybe aren't stable or know it all, but know what they do know, you can still construct a useful knowledge base.

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One of the reasons new
      #355136 - 02/01/10 08:56 AM
Janey

Reged: 10/25/03
Posts: 1716
Loc: Maryland

the boards are helpful to so many is because it is a place where you can come to talk about what you are trying, what is working and what isn't.

I think it is impossible to wait until you are stable to post. Part of the process of getting stable is trial and error and being able to come to the boards for support. Where else can we go where people understand completely what we are going through?

Someone may be trying something that might not work for them but by posting about the experience the idea is out there and it might work for someone else. I personally have read about things that I never thought of trying. Some of these seem like a good idea for me and others don't but I wouldn't presume to tell someone else what they can or can't try. Like you said, we are all different and what works for one may not work for another.





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Janey

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For Janey new
      #355138 - 02/01/10 09:20 AM
Windchimes

Reged: 09/05/09
Posts: 581
Loc: Northern California

Janey, I think I did a poor job of what I was attempting to express. I was talking about posting medication suggestions when the poster has not tried them at all, thus no personal experience either way to share.

I wasn't meaning no posts at all until stable. The boards are here to ask questions and learn from the responses.

You were correct and appropriate in the feedback.



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Senior female, IBS-D, presently stable thanks to Heather & Staff

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Re: What is stable, really? new
      #355139 - 02/01/10 09:28 AM
Windchimes

Reged: 09/05/09
Posts: 581
Loc: Northern California

Mike, it would seem to me that you are stable having arrested your diarrhea problem for six months now. Thank you for sharing your success with the diet.

As for the abdominal pain and discomfort, I have been able to eliminate that entirely with Heather's peppermint capsules, one in the morning and one in the evening, both taken one hour before I eat.

--------------------
Senior female, IBS-D, presently stable thanks to Heather & Staff

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Re: Until one is stable... new
      #355142 - 02/01/10 10:00 AM
Sand

Reged: 12/13/04
Posts: 4490
Loc: West Orange, NJ (IBS-D)

I have a feeling I've missed a lot of the backstory on this but since the topic is near and dear to my heart, I'm going to jump in anyhow.

I've never believed it's appropriate for people to use these Boards to argue that Heather's approach is wrong or that she doesn't know what she's talking about. The whole point of the Boards is to provide support for people who want to try Heather's approach. So if someone wants to insist that dairy products are fine or soluble fiber is nonsense, this isn't the place for them.

However, if someone has tried Heather's approach and it hasn't worked, I think it's perfectly fine to post saying, "I tried this, it didn't work for me, here's what I'm going to try next, bye-bye" and then leave. If someone who didn't have success with Heather's approach leaves, tries something else, and has wonderful success with that approach, I think it would be great if they would come back and say so. I believe that what we currently call IBS will turn out to be a whole bundle of different conditions which makes it logical that even an approach like Heather's, which works wonderfully for many people, won't work for everyone. If something else does, it's courteous to come back here and say so. Not because that means Heather's approach is wrong but because something different may work better for someone who isn't having success with this approach.

Nonetheless, I don't see anything wrong with people discussing what they're trying in the medication and treatment lines, whether prescription, over the counter, or alternative. I'm IBS-D but when I was active on the Boards I would tell people who were IBS-C that other Board members had said they were successful using a stool softener or adding more insoluble fiber or whatever. Similarly, I never took Imodium daily as a precaution myself but I don't see anything wrong with my telling someone who's IBS-D and miserable that it's worth a try. Similarly, I read discussions about Lotronex long before anyone had tried it - and participated in those discussions myself. I can read and ask questions of my GI guy; I was able to figure out the risks and rewards of various medications and don't see anything wrong with passing that knowledge along to other people on the Board who might benefit from it.

Am I super-interested in the biology behind IBS? Nope. Frankly, ShawnEric's posts make my eyes glaze over. So I don't read them. But if people who are interested learn from his posts that some studies show that Eye of Newt and Tongue of Bat have been shown to be effective in treating IBS, then good for him and for them. They can ask their GI about it. There's no harm in suggesting things. I think we're all intelligent enough to evaluate the difference between "I hear such and such works well" and "I tried such and such and it was like a miracle" and then make our own decisions about what we do and don't want to try.

As for confusing newbies, yes, that can be a problem. I honestly believe that newbies are better off reading Heather's book and/or the Website outside the Boards first, and only coming to the Boards when they understand what Heather's approach really is. The Boards tend to deal with questions at the margins, so you hear about people who cannot tolerate rice and people who can tolerate egg yolks. Interesting and useful once you understand Heather's diet but confusing to someone who is hoping to learn all the ins and outs of the diet from the Boards. I realize, however, that it's unlikely newbies are going to stay off the Boards so I simply hope that people on the Boards will be clear about how what they are doing or suggesting differs from Heather's guidelines and refrain from assuring newbies that they don't really need to do all that stuff Heather suggests. I also hope that newbies will understand that they really need to do the reading outside the Boards in order to make informed decisions for themselves.

I think part of your concern, Windchimes, may arise from the fact that this is not a forum where we share our Experience, Strength, and Hope in the way that trio is usually thought of. Crosstalk is encouraged; advice is sought and welcome when given; mentioning professional credentials is perfectly valid and does give someone's advice more weight. The slogans for these Boards would be Each One Teach One and Live and Let Live.

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[Research tells us fourteen out of any ten individuals likes chocolate. - Sandra Boynton]

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windchimes new
      #355146 - 02/01/10 12:24 PM
Little Minnie

Reged: 04/16/04
Posts: 4987
Loc: Minnesota

I got that out of your post. You were saying when people advise others on stuff but have no proof that their advice works it can harm others.

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IBS-A for 20 years with terrible bloating and gas. On the diet since April 2004. Remember this from Heather's information pages:
"You absolutely must eat insoluble fiber foods, and as much as safely possible, but within the IBS dietary guidelines. Treat insoluble fiber foods with suitable caution, and you'll be able to enjoy a wide variety of them, in very healthy quantities, without problem." Please eat IF foods!

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Nonsense -nt new
      #355162 - 02/02/10 02:16 AM
capricorn1942

Reged: 10/06/03
Posts: 248




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ibs-d (pseudo)with pain and bloating

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This is not nonsense, it's a perfectly reasonable suggestion. new
      #355175 - 02/02/10 12:16 PM
HeatherAdministrator

Reged: 12/09/02
Posts: 7799
Loc: Seattle, WA

Her statement, "I discourage anyone suggesting things that they have not tried nor had success with," makes perfect sense.

The boards are supposed be focused on the Eating for IBS diet. If that doesn't work for you, this is not the board for you. Obviously there are individual variations and shades of gray, but suggestions that are radically outside the dietary guidelines are not appropriate for this forum.

- Heather

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Heather is the Administrator of the IBS Message Boards. She is the author of Eating for IBS and The First Year: IBS, and the CEO of Heather's Tummy Care. Join her IBS Newsletter. Meet Heather on Facebook!

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Re: This is not nonsense, it's a perfectly reasonable suggestion. new
      #355178 - 02/02/10 01:24 PM
capricorn1942

Reged: 10/06/03
Posts: 248


Yes, this is obviously a true statement if what is meant is that we should not mislead others. But in this case, does it even need to be said? Also, many members point out studies and other articles about drugs/supplements they have not personally tried. I appreciate all honest postings and have not found any to be otherwise.

Is it also true that until relatively stable one should not post...?

I do follow the EFI diet fairly closely and I use your peppermint capsules. I get some help from each. I still have all IBS-D (pseudo) symptoms - pain, discomfort, bloat, etc.

I stick with this board for:

1. The solace I get from reading posts from sincere board members who are always trying to help.
2. The fact that I have never gotten any help from IBS drugs prescribed by doctors, chinese medicine, naturopathic doctors, and etc.
3. It seems to be the only game in town with any plausible, somewhat effective way of dealing with IBS.

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ibs-d (pseudo)with pain and bloating

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All of your points are great... new
      #355184 - 02/02/10 03:40 PM
HeatherAdministrator

Reged: 12/09/02
Posts: 7799
Loc: Seattle, WA

And no, someone doesn't have to be stable in order to post. That would sort of defeat the whole purpose of the boards.

But, I would hope that people would do a LOT of reading first, familiarize themselves with the diet, learn the safe foods and triggers, and then ask questions about the areas where they're having trouble or are unclear.

Coming in cold and asking broad questions makes it hard for people to give much help in a post. There's too much introductory info people need to absorb first, before they can have specific questions to ask.

XXOO
H

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Heather is the Administrator of the IBS Message Boards. She is the author of Eating for IBS and The First Year: IBS, and the CEO of Heather's Tummy Care. Join her IBS Newsletter. Meet Heather on Facebook!

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