At my wit's end!!
#195164 - 07/13/05 11:07 AM
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SharonDCA
Reged: 08/01/04
Posts: 19
Loc: Kern County, Calif.
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I have IBS-D and it is raging out of control. It has been this way since April, at least, and getting worse. I use Heather's Acacia daily, as well as chewable benefiber. I have been on the "what to eat when you can't eat anything " diet for months. Every time I try to begin adding additional 'safe' foods my gut goes balistic. Peppermint & fennel tea each morning (I hate tea so this is a real accomplishment!) Immodium in huge quantities, Donnetal before each meal. I have Heather's cookbook and really try to follow her diet. No dairy, no meat of any kind, little to no fat, etc..... right now it's mostly bread (sourdough or sheepherders) and water, potatoes, rice milk (just a little), & plain pasta.
I saw my Primary Care Phsician last Friday and got a pat on the knee and a referral to a GI doc for a consult. My appointment isn't until the 26th of July and two more weeks of this looms like a big black abyss. I completed the hypnotherapy tapes in June. Please, does anyone have any helpful ideas???
Desperately,
Sharon in Calif.
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Hi, Sharon. Sorry to hear you're feeling so bad. I've been there, too!  I'm pretty sure that Chewable Benefiber contains SORBITOL.  Can you double check the ingredients on yours? Sorbitol is horrible D trigger--this might be what's keeping you from becoming stable. I'd stop it ASAP if I were you!
What safe foods have you recently tried to add to your BTC diet (which is supposed to be only for short term use). I think I was on the BTC diet for too long and I became fatigued and my stools were...different. It wasn't until I started adding safe protein, like chicken breast, and some more IF, like instant oatmeal and brown rice, that I started feeling better. Also are you using Immodium as a preventative or once the attack starts?
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Yes, this blasted benefiber DOES have Sorbital!! Missed that. I'm not big on sugar substitutes as I've seen the slides of the brain lesions they can cause. Well, that's gonna be gone.....
I realize the BTC diet is supposed to be short-term only and I'd be more than glad to move along...... I've tried to add a little baked chicken breast, scrambled eggbeater w/acacia, a fruit smoothie or a lean turkey breast sandwich on sheepherders bread. I've also tried adding some tofu or vegetarian hot dogs (they were 0 fat, no artificial sweeteners, but 17 grams protein). I'm searching for something with some protein! Not all these were added at the same time! But all have been tried.......
As for the Immodium, I only use it if I have to. I don't necessarily wait until the attack starts, but will take it when I get that crampy, achy feeling that says we are going to have a 'bathoom day' today! However, if the attack starts suddenly, I will try to get to the Immoduim ASAP. I have tried using it as a preventative and it doesn't seem to do much.
Thanks for the heads up on the sorbital!
I wish I didn't even need food at all......  .....
Sharon
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Check EVERYTHING. Taking Sorbitol everyday would kill me.
And use the Immodium as a preventative...every morning, first thing take a dose (2 tablets for you???) and then take another one if you get the warning signs.
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How much is too much Immodium? So far today, I've had 8 tabs. 2 would be a drop in the bucket
Sharon
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NELLY!!!
#195223 - 07/13/05 12:15 PM
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Linz
Reged: 09/01/03
Posts: 8242
Loc: England
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Okay, shouting out for Nelly as she is the champion Immodium guzzler. I know she takes at least that.
Have you tried taking doses regularly throughout the day even if you're not having D right then, so as a preventative?
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Nope. I've tried taking 3 in the mornings as a preventative, but after about 3 days of doing that my tummy gets unhappy.......
Sharon
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Re: NELLY!!!
#195232 - 07/13/05 12:27 PM
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Linz
Reged: 09/01/03
Posts: 8242
Loc: England
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How unhappy? I mean...what happens exactly?
You don't think you might be gluten or wheat intolerant do you?
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Maybe it will be easier to add in more foods once you get rid of the Chewable Benefiber. Evil sorbitol! Would you let us know if you experience any change in your symptoms once you stop taking it?
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It gets crampy and I can begin to get fecal incontenance. No, no problems with gluten or wheat......
Sharon
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Oh, that's not good! I thought Immodium was used to help fecal incontinence by improving anal sphincter tone. Have you tried any other anti-diarrheals, like Lomotil? It might help until you can become more stable through diet.
So, no problems with gluten or wheat...How about yeast or potatoes? Since you're still suffering from D, why not incorporate other foods anyway? Couldn't malnutrition from being on a restricted diet for so long cause more diarrhea? Have you tried a probiotic or something like soy yogurt?
I hope you get a lot more answers from visiting a GI. Will this be your first visit?
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Double evil Sorbital!! Yes, certainly I'll let you know if removing this little viper is helpful. It's really too bad too, it's so handy to have the tablets in your purse! Any other recommendations to replace it? I need something I can take along in my purse. I am also a migraineur and when I have to take a tablet with caffeine (I know!) having some SF going down first is helpful. But if I have to weigh the value of the caffeine in aborting the migraine to the chance of it giving me an IBS attack, the abortion of the migraine wins - hands down.
Sharon
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I don't get migraines, but I understand having to deal with different health problems and trying to weigh the pros and cons of which to deal with first! 
I've heard some folks mention Fibercon caplets. You might want to do a search, no time limit. A quick check showed that it doesn't contain sorbitol, but I'm not sure about the other ingredients. HTH! 
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...caffeine can be an essential medicine for us with migraines...but that's how I view it now: a medicine I need to take sometimes but one with side effects.
I like crackers with my caffeine personally when I'm sick. I *think* Fibercon do a safe tablet tho.
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...if I were you I'd see how I did by changing nothoing other than stopping the sorbitol (and triple checking everything). Sorbitol makes me so ill that I'd guess a daily dose of that would give me your current symptoms! 
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Linz (of course) makes sense! I think I got ahead of myself. One change at a time so that you can be sure what's causing or exacerbating the D. So, feel free to ignore my comment further down about changing your diet right now. 
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Re: imodium
#195251 - 07/13/05 12:54 PM
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SharonDCA
Reged: 08/01/04
Posts: 19
Loc: Kern County, Calif.
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I'm hoping for some changes when I see the GI. I have an HMO and seeing a specialist sometimes takes an act of Congress. This will be my first visit to this one. I saw one when I was a teenager and was having my first problems with this nightmare. Many moons ago!
I have had the same thought about adding foods anyway and have actually done that until the D gets just so bad or the pain blows me away. Then I go back to bread, water and potatoe.
No problems with potatoes or yeast. In fact, if all it had to deal with was bread and potatoes, my tummy might chug along fairly happily for a long time.
I take a Probiotic daily. It's mostly part of my regimen to prevent migraine and of course, Heather's acacia has a natural pre-biotic. As for soy yogurt, it makes me nauseaus as does soy milk. I have no trouble with tofu so I'm still trying to figure that one out.
I'd even be willing to be part of a clinical trial for a new med.
Sharon
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Stopping the sorbital is #1 for now.
Thanks!
Sharon
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Hi Sharon
I was just wondering whether it could be your gallbladder?
- if you still have one!!
Calcium supplements without Magnesium help some people with the dreaded d. For me, the Acacia has virtually wiped out my pain but I am still struggling trying to find the stability which I would like!!
All the best for the 26th.
Judith
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I know from your posts that your first priority is simply stopping the chewable Benefiber, but here's a link to Heather's SFS FAQ - you can window shop for a new SFS tablet. I'd definitely avoid the ones with IF, since you're so terribly D. Some people swear by Equalactin (you can do a Search) although I gather it's little pricey.
I don't know what sheepherder's bread is, but I do know the sourdough I see at my local grocery stores has whole wheat in it. Not very much, but for me even a little whole wheat can be a problem. I know you want to only change one thing at a time and that's certainly a good idea, but you might keep the idea of switching to French or Italian bread in the back of your mind.
I hope stopping the Benefiber tablets helps and I second Maria - please do post how you're doing once you eliminate it.
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[Research tells us fourteen out of any ten individuals likes chocolate. - Sandra Boynton]
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Well, it's been about a week now with no evil sorbitol and what a difference! It took about 4 or 5 days to feel pretty normal again, but after day 3 it was a big improvement daily. I called the company that manufactures Benefiber to see how much sorbitol was in each tablet and they wouldn't say. Afraid someone is going to steal their "secret recipe!" At this point I have been able to add foods back in with no trouble and things are looking much better. Thanks so much for pointing out to me what the evil ingredient was. I feel so dumb because I had read and re-read about fiber and the different types and even made notes of what brands were good, etc before I went to the store.
Sharon in CA
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Yay!
#198551 - 07/22/05 10:13 AM
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lalala
Reged: 02/14/05
Posts: 2634
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Sharon--
That's great news! I'm so glad to hear you're doing better and that you're able to add more food to your diet. Whoo hoo! 
Keep up the good work!
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I'm so glad to hear this. And don't feel dumb - I've done similar things. Sometimes there's just too much new info to process at once. I'll find I'm keeping a sharp eye out for, say, dairy in my bread, and proudly bring home a loaf that turns out to have eggs and HFCS in it. It gets easier as you go along. And isn't the Board great as a second pair of eyes?
Take care.
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[Research tells us fourteen out of any ten individuals likes chocolate. - Sandra Boynton]
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