Getting desperate
#243985 - 02/03/06 03:35 PM
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I am at my wit's end w/ doctors lately. For the few of you who have helped me w/ specific questions, I greatly appreciate it.
I need to know if this sounds like what anyone else goes through. Six months ago I started noticing diarrhea (watery to just loose). Nothing painful at first. Over the next few months it got much worse. I now experience near constant pain about two inches above my navel. It is not relieved by having a bowel movement in anyway. I also have a lot of gas and bloating.
I had a normal colonoscopy. All of my bloodwork has came back normal. No parasites. I had an endoscopy done, where the doc. found some "flattening" of the villi in my small intestine. But my biopsy was inconclusive so she said I have IBS.
I have tried Heather's diet in the past, albeit not for an extended period of time, and shown absolutely no improvement. The longest I ever made it was when I got to the point where I was eating cream of rice three meals a day because it seemed like anything else made me sick.
The only relief I have found is with Librax. I'm on 4 tab. a day. Nulev,and Bentyl didn't even touch the pain. It even still hurt quite a bit when I took a Tylenol #3.
It seems to be aggravated by alcohol. Once pork sent me in a spin, a couple of days later I tried it again and was fine. Got really sick one day after French onion soup w/o cheese. I've even gotten worse from applesauce and fat free saltines.
Any ideas would be appreciated to no end.
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i can't speak to the accuracy of your diagnosis, but if you're going to try heather's diet, you need to give it a good long chance to work - the break-the-cycle diet for 3 days tops, and then slowly, safely incorporating IF and protein. and an SFS, of course. it can take a long time to stabilize, so you have to give it a shot, and while you're trying to get stable, really not cheat.
of course, if the diagnosis is wrong, the diet won't help. to that i'd say get another doctor.
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jaime
ibs-a (mostly d) // vegetarian
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I suffered and still do sometimes with the same thing almost. I don't get D or even C that much but boy I sure suffer with upper ab gas and bloating. went through a spell where i was so sick I couldnt even eat rice. Well I kinda got better a bit then had the endoscopy done, had a hiatal hernia, had the colonoscopy done that is good. This is all just in the past yr. Well I got so sick I layed on the couch for 2 wks. Now, I have been staying to STRICTLY IBS foods, I cut out coffee, everything u name it. I have been on Nexium now for almost 4 days, I am starting to feel better. I find that if I sneak off from the safe foods it comes to haunt me. No gastro doc could explain the other problems (pain in upper ab) but I feel like I am stabalizing a bit now. Just hang in there oh yea I am back on the fennel tea fulltime.
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if God brought you to it. He will bring you through it.
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By good long while are we talking 3 months, 6, a year? Just curious because I don't want to stay on the Librax any longer than I have to.
How well do the peppermint caps work for most people? I tried the tea but I can't handle it (flavor). I actually don't like tea to begin w/ so any other ideas? I ordered the Accia so we'll see how that goes.
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I have read some posts where people have said 1 or 2 years. Definately more than just 3 - 6 months.
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Relief enough not to rely on an addictive medication is really the answer I'm looking for. I know it could take a long time maybe never for it to just get better or go away, but I would like the pain to be managable w/o a problematic drug.
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Have you tried using a probiotic before? Along with SFS it has given me relief of pain, D, and gas.
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Yes, I got the one that had 7 different types of flora.
Did anyone feel like they just didn't have IBS? I can't help but follow my gut (sorry no pun intended) and feel like it isn't something else. I guess it's probably because I've heard horror stories of doctors missing something because they made an IBS diagnosis w/o really paying attention to all of the symptoms.
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If you've has all the tests to check for something else and they came back negative, it's probably IBS.
Btw, probiotics usually takes 2-3 months to notice a difference.
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Did you Dr run blood tests for celiac disease?? Usually flattening of the villi in the small intestine is evidence of that.
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Kim
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My blood tests came back fine, but I had been eating cream of rice three meals a day at the time so I don't know if that had anything to do with it.
I had an interesting session with my doctor on Thursday. Thankfully I have an appt. in March with a specialist in my are who is known for being the "best".
I ordered the celiac gene and stool sensitivity test from Enterolab. It came with a free milk sensitivity. I'm hoping that with the gene test I'll know once and for all whether or not I could be celiac. It also came with the fat malabsorbstion, so I'll know if I'm losing any nutrients.
I thought the flattening would be definitely celiac also. There are other things that can cause it but they are more rare.
Coming to find out that 1 in 125 to 150 North Americans have celiac and that it takes on average 11 yrs to diagnose scares me. There are so many complications possible if it goes untreated.
I just don't know at this time what I should be eating. I had about 8 fat free saltines last night and they sent me into an attack. It's so frustrating not knowing what's wrong.
Please forgive me for being so unaccepting of an IBS diagnosis. My mother in law has suffered from it for 30 yrs, so it's not like I think it's some fluff problem. I just at this time don't know if it "fits" me.
I just needed advice from others since I am having a very hard time with doctors right now.
Thanks
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i was put on Librax, but chose not to continue it. I didn't "feel right" on it. I am not trying Heather's peppermint caps and hoping for the best.
BTW, I'v been at this diet for over a year now, and still sufferering Big time. 
I also question my diagnosis. I have a nonfunctioning gallbladder and also gluten antibodies...but a negative celiac gene test and a normal endoscopy.  So, I can't decide if I need to be gluten free, wheat free, or neither.
I think if all the tests had come back normal I could accept the IBS diagnosis. I wish I never had these other tests done. All it did was cause anxiety, stress, confusion, and unanswered questions. This stress is just as bad for IBS as sorbitol, in my opinion.
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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Will definitely make the results unreliable. You need to be eating gluten before having the blood tests in ordr for them to be valid.
Are you eating gluten now? Before your Enterolab tests? Well, that wouldn't effect the gene test, but will it effect the gluten sensitivity testing?
I agree with doctors...none have given me a solid answer on what I have. No one knows and will not confirm any speciific diagnosis. Isn't that their job?
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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Wow, this is really bothering me. You have been on Nexium for 4 days and are noticing an improvement?? That's awesome. I have been on Nexium for 4 MONTHS and haven't noticed a marked improvement in my reflux. I have a hiatal hernia, also....I have been on Prilosec, Prevacid, Protonix and now Nexium and all of the other ones have worked better than this Nexium is.....I just don't have all the negative side effects with Nexium that I've had with all of the other meds. Maybe I should go back to Prilosec....I don't know what to do....I've been laying on the couch for almost 6 months, now, and the doctor's just keep using me as a guinea pig putting me on this med, putting me on that med. All of them just seem to make me feel worse!! Uggg....I'm so done with doctors. I'm just done! I was stabilizing pretty well a few weeks ago until the psychiatrist got ahold of me and put me on Lexapro. Now, I'm sick again and just feel like total crap! Back to square ONE!!!
Glad you're getting better, though!
Michelle 
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IBS-D. Hiatal Hernia, GERD
Unstable
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Sorry you are having such a tough time.
I am on Librax, too. I have been on it for about 5 yrs. I started taking 3 tabs a day one 30 minutes before each meal. It has really helped me since most of my IBS is stress related. It helps relax me and my tummy. Anyway I am down to one tab a day now in the morning. I know there is a possibility of it being addicting and I have asked my doc about it. She said that as long as it is helping me that it was OK. I did go from 3 tabs to 1 tab a day without any problem. I don't know what will happen, though, when I decide to quit all together.
There was a time that all I lived on was mashed potatoes, chicken noodle soup and bread.
Good luck
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IBS-D. Hiatal Hernia, GERD
Unstable
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I was just reading this post, and i too have been on Nexium since Feb 1 and oh boy !!! with taht and a 100% IBS sfe diet I FINALLY feel human again after being so sick I couldnt do a thing
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if God brought you to it. He will bring you through it.
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