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I am worried if I don't keep trying Heather's diet, I won't have any chance of not feeling well.
I'll keep doing this until something better sounding comes along.
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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I think if it were something other than IBS they would've found it by now. I was worried at first but I've had enough tests you'd think something would show up. I really should go get the water tested. I guess it's possible that I have IBS that's being aggravated by bad water?? That sounds stupid, but if people can get sick from drinking water in Mexico, surely they can get sick from drinking Iowa well water.
Oh well.  I'll manage.
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jen
"It's one of the most serious things that can possibly happen to one in a battle -- to get one's head cut off." -- LC
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Re: I don't know
#209205 - 08/28/05 07:36 AM
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Sand
Reged: 12/13/04
Posts: 4490
Loc: West Orange, NJ (IBS-D)
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I'm kind of with LittleMinnie here - I'd suspect something other than IBS. I know you think the well water thing sounds stupid, but if you haven't been tested for parasites, I think that might be worth pursuing. It will be miserable because my understanding is that you have to do 3 separate stool samples, but it might be worth it. I know you've talked about having another colonoscopy and I think that's a good idea, especially if you've been having blood and "coffee grounds" in your stool.
As for SFS, there are non-gum SFS - Heather lists them here. Also someone (Dalia?) has mentioned just pure psyllium (sp?) as a possibility.
There's also a really off-the-wall SF. I've never tried it, but the Website says it's similar to pectin, so if you can tolerate applesauce, maybe you can tolerate this. Here's the post where I ran across it. (I have no idea why this stuck in my head, but it did.)
I do hope you find something that helps you feel better. Take care.
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[Research tells us fourteen out of any ten individuals likes chocolate. - Sandra Boynton]
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I am actually supposed to submit a stool sample to the GI -- they only asked for one, though, not three. Only problem is that I work full-time 45 minutes away from the GI's office during the same hours that the office is open. It's possible I could leave work early one day, but there is NO WAY I am walking into the bathroom at work with the "stool sample accessories" and getting it done there. I would just have too much performance anxiety plus I would die if someone was in the bathroom and saw me carting my huge brown paper grocery bag out of the stall. ("What's SHE doing in there?!") My only option is to do it first thing in the AM and getting my husband to take it in (who works in the same city as the GI). But I rarely ever manage to have a BM first thing in the morning unless I am having D, and I don't want to send in a stool sample that sloshes! So this stupid stool sample is hanging over my head. (Hm, that sounds disgusting, doesn't it?)
I used to get "coffee grounds" in my stool all the time, but it's been a couple months since it happened. I thought that the coffee ground effect was blood only if you were throwing it up? I am worried about making myself paranoid so I try to avoid doing research on the Internet.
I have tried all of the SFSes on Heather's list except Equalactin, Fybogel, and Konsyl -- I haven't found any of them in the stores here. I'm debating trying slippery elm but am a little leery of all those unregulated "health supplements". Is this Konjac stuff a gum as well? The link refers to it as "Konjac gum". I'll have to read through it more later. I hate buying stuff off the Internet that's supposed to help with your health, though, I feel like I'm one step away from hanging up holistic crystals over my bed.
Thanks for all of your suggestions! I love these boards. I never dreamed that someday that I would be cheerfully discussing my bowels with a whole bunch of people I've never met.
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jen
"It's one of the most serious things that can possibly happen to one in a battle -- to get one's head cut off." -- LC
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I think it may be easier to discuss my bowels with a bunch of people I've never met than with people I have to actually see face to face on a regular basis. 
I know what you mean about the stool sample hanging over your head (and it is an interesting visual). I was so glad Heather's diet worked for me because otherwise I would have felt compelled to do multiple samples to be sure I'd ruled out every parasite known to humankind. I was even considering the whole Smoky Mountain Labs route or whatever it is. I had this king size picture of me mailing stool samples to someone. Oh, please.
As for the "coffee grounds" thing, you might be right about it only being a problem if you're throwing it up and, if so, I'm sorry if I worried you for nothing. And I think you're very smart to avoid doing Internet research - you wouldn't believe some of the stuff I found about IBS before I found Heather's Website.
I didn't pick up on the "gum" thing with Konjac - I just saw the "similar to pectin" part. As for hanging holistic crystals, I actually did accupuncture for a while and it helped - for a while.
The other thing that helped - for a while - was Elavil, but it does have side-effects.
I do hope you find something that helps and soon. IBS-D is miserable and besides that it's amazing the amount of energy required to run the doctor/test marathon.
Take care.
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[Research tells us fourteen out of any ten individuals likes chocolate. - Sandra Boynton]
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parasites
#209299 - 08/28/05 05:15 PM
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jen1013
Reged: 05/06/05
Posts: 1322
Loc: the wabe
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but can parasites make you sick for over a YEAR??? Plus wouldn't you be able to see evidence of them? (Ahhh, I long for the days when I could just go to the bathroom without anxiously examining the toilet paper ... )
I was on Elavil for two weeks. I went off it because I had turned into a depressed, neurotic wreck who sat around crying and eating massive quantities of Skittles. I was also falling asleep at work if I sat down for more than 2-3 minutes. I know I should have stuck with it longer, but I was getting really scared about the way I had become.
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jen
"It's one of the most serious things that can possibly happen to one in a battle -- to get one's head cut off." -- LC
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Re: parasites
#209398 - 08/29/05 09:40 AM
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Sand
Reged: 12/13/04
Posts: 4490
Loc: West Orange, NJ (IBS-D)
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I don't know enough about parasites to answer your questions definitively, but I think parasites could make you sick for a year and I don't think there's necessarily any sign of them. You can do a Search on the Diet Board for "parasite" with no time limit and you'll get a lot of hits, including some from people who actually had the little suckers and one that mentions the Smoky whatever lab. There's also a post that talks about a 6-7 days explosive D pattern sometimes being indicative of giardia (I think it was).
I'm beginning to think I'm making you feel worse rather than better and that's not what I intended. It's just that if I had intransigent IBS-D that didn't respond to Heather's approach, I'd be turning over every rock I could find to see what else could be going on.
As for Elavil, I didn't do the depressed and neurotic part, but the "Elavil sweet tooth" is a classic I definitely participated in. As for falling asleep, oh, yeah. I started taking Elavil on Thursday. On Saturday a friend came to stay with us for a week's visit. On Monday, we were going to Kykuit (the Rockefeller estate). We all got dressed and had breakfast and I went upstairs to put on my earrings. I sat down on the bed for just a minute and half an hour later my husband was waking me up - he's come up to see what happened because I just disappeared.
The falling asleep at a moment's notice disappeared after a week or two, but I continued to crave 9, 10, 11, sometimes 24 hours of sleep a night. Because the help from Elavil wore off after a few weeks, my doctor kept pumping the dosage: 10mg, worked for a few weeks, stopped; 25 mg, worked for a few weeks, stopped; and so on. I got up to 75, I think. At that point I still wasn't depressed, but I was totally apathetic. I really couldn't think of any good reason to get out of bed in the morning - not sad, just utterly disinterested. After a month of two of that, I found Heather's diet, went on it, and went off the Elavil.
Long story, but the point of it is that for me Elavil wasn't a long-term solution - it didn't work for more than a few weeks at each dosage and the ultimate side effects were unendurable. It did, however, give me a few little breaks in the then constant D and that was psychologically very helpful. (Read: it kept me from throwing myself under a speeding tractor-trailer.) However, I wasn't working, so if I wanted to nap at 10:30 in the morning or sleep for 14 hours, I could.
One last thought and I feel kind of stupid even suggesting this, but you might try posting what you're eating. I can't imagine there's anything in your diet that's causing problems, but it's sort of the last thing I can think of.
Take care.
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[Research tells us fourteen out of any ten individuals likes chocolate. - Sandra Boynton]
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and that you take the test BEFORE you stop eating gluten. Celiac is overlooked for ten years on average in the US, so double check that they have tested you for this - if they haven't, insist on it asap.
- 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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that's not possible!  No, seriously, it does help to talk about it. If nothing maybe that's 15 minutes less DH has to hear about my bowels.
I have often thought about posting my diet on the fitness board. But I don't see it as helping. I have never eaten anything without searching on the boards to see how safe it is. My diet is pretty limited, anyway. During the week for meals, I generally have 2-3 cups applesauce plus lots of bland starchy stuff -- saltines, safe muffins, pretzels, ff tortillas with 1/2 t reduced-fat PB, mashed potatoes. (Most days I have ff saltines for breakfast.) I will also sneak some chicken and tuna in, but on the whole I don't get enough protein. I know how to eat -- if my stomach is empty, I eat ff saltines or pretzels and wait a little bit before attempting anything else. Because I also have GERD, I hardly ever eat stuff like tomatoes, onions, or garlic. I do eat more sugary desserts on weekends, but I stick to more "basic" desserts that are really pretty much just SF and sugar.
I have become such an obsessive label-reader that when I was looking for shampoo, I picked up the bottle and read the ingredients, and then put it back because it had sorbitol in it.
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jen
"It's one of the most serious things that can possibly happen to one in a battle -- to get one's head cut off." -- LC
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and my endoscopy didn't show anything, either. But thanks for pointing it out 
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jen
"It's one of the most serious things that can possibly happen to one in a battle -- to get one's head cut off." -- LC
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