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Posted: Mon Nov 30, 2009 3:37 pm
by bbforyears
Thanks for the suggestion, JC. I believe that is the Bravo test, but I might be wrong.
Iva, you are my inspiration. I have read your posts from this site and from an acid reflux forum. You're actually the one (although you didn't know it) who made me press my doctor about the possibility of bile reflux (which was confirmed via Endoscopy). Your case sounded so similar to mine.....
Posted: Tue Dec 01, 2009 3:21 am
by TIRED
elliot what did the dr.say???
Posted: Tue Dec 01, 2009 11:22 pm
by elliott
bbforyears wrote:Elliott,
Please do keep us posted on your test results. Did the tech mention anything to you about your pressures? Sometimes they will tell you something, sometimes they won't.
I know what you mean about the probe and manometry. They did the manometry first and I thought I was going to puke. It was pretty uncomfortable to say the least. I was like...uh....I have to wear this thing for 24 hours? The tech was like "No, the tubes will be much smaller for the ph monitoring." I said "Thank god, because I don't think I could handle these tubes for 24 hours!" It was still uncomfortable for the 24 hour study (especially trying to eat) but not nearly as horrible as that manometry!
I really hope you get some answers from this.
They put me on another medication now since I bombed my Gastric Emptying Test. Now I take Reglan too. Reglan is an awful drug! I've taken it only twice and have already had horrible side effects. They have me on 10 pills a day now...Kapidex 2X daily, Carafate 4X daily and Reglan 4X daily (although I am NOT taking it that many times a day--I would be comatose if I did).
They had me do another barium swallow on Wednesday. I passed that one with flying colors. I know in my heart of hearts that the meds are what is slowing my digestion down....I never had a problem with constipation before the ppi and Carafate. In fact, I had the opposite problem.
It is so frustrating sometimes, isn't it? In my case, I KNOW what is wrong with me, but the doctors are still baffled as to why/how. They want to blame everything on my "slow" stomach now....before that they said I had Nutcracker Esophagus and that is what was causing the reflux. They now know I don't have Nutcracker Esophagus. So very frustrating! I cried for 2 hours on Wednesday when the surgeon said he's too scared to do a Nissen on me. I was like "If I had a Nissen I wouldn't have to take all these damn pills and my digestion would speed up!!!" How can one have chronic diarrhea for 6 years and have slow digestion? It's impossible! Since being on all these pills I have been to the hospital 3 times for an Ileus. You can't tell me there is no correlation there!
What more do I need to say LOL. Everything here is my exact story.
They won't give me the Nissin, as there isn't sufficient evidence (acid) to justify the op.
Doc said bile reflux would be rare, and he was right in my case. No reason for a healthy person like me to have bile reflux, and test show that I have Nothing exiting the stomach opening abnormally. I look healthier than a normal person my age. Pressure, ph, it's all normal.
The doctor said (almost hesitantly), as we already know, that 'there are things that tests cannot find'. I sense we might be after something that we may not be able to chase with current medicine.
..
Anyway, yeah careful on that Reglan, if you see odd symptoms, stop. That medicine can cause permanent jaw spasms, suicidal depression, and various internal problems. I have been curious to take it again, as I don't remember whether it worked or not! It was 3 years ago when I first tried it. Recently the doc prescribed it again (and the look on his face, you can tell they don't like prescribing it)
Me, I'm off to the gastric emptying test
this is another test that makes sense, related symptoms sound familiar ... I'll see what happens.
Posted: Wed Dec 02, 2009 4:41 am
by bbforyears
Oh, Elliott...I am so frustrated for you! At least in my case they KNOW I reflux....they just don't know why! I am almost positive you have some sort of reflux too and I agree that the tests don't always show it.
I don't have a hiatal hernia and my manometry showed my pressures on the low end of normal with elevated pressures between my distal and proximal. But I did reflux a bunch (acid) during my 24 hour test at the distal and proximal. My ENT told me that it only takes 1 episode (even seconds) at the proximal to cause damage and symptoms for 2 straight weeks. Maybe you weren't refluxing that day but still had symptoms?
I've got another appointment with the surgeon tomorrow. I really hope he can do SOMETHING to help me besides medicate me on these dangerous drugs. I think Carafate is the safer of all of them and seems to offer me the most relief. I don't want to be on Reglan at all!
Another strange symptom I wanted to share with everyone. I have earwax for the first time in years. I told everyone how my ears always felt "wet" and "full" before the meds. Before them all I ever was able to dig out of my ears was a white odorless pus like substance. Now I feel normal again because I have earwax. Ha ha!
Posted: Fri Dec 04, 2009 12:05 pm
by iva
Eliott,
forgive me if u have mentioned it yet, but what was the case with your LES, was it loose or vice versa?
Bbforyears, glad to know I`ve been helpful somehow...What about your Nissen plans?
Posted: Thu Dec 10, 2009 9:13 pm
by elliott
iva wrote:Eliott,
forgive me if u have mentioned it yet, but what was the case with your LES, was it loose or vice versa?
Bbforyears, glad to know I`ve been helpful somehow...What about your Nissen plans?
Hello Iva, LES is looser than normal, according to 2 doctors, normal according to a 3rd.
Back to my above plight, My original GI concurs (with the doc that he referred me to) that there are some things about esophageal and digestive reflux issues that we simply do not know. Both of the GIs have detectable bad breath when they speak to me up close. I find it pretty interesting how many doctors tend to have a 'smell'!
Anyway after the last appointment, my doc set up the stomach emptying study, I was at the desk arranging co payments etc, and the doc came out to the front, stopped me and apparently, he 'just' remembered a link to bloated stomach and bacteria, lactose intolerance, wheat allergy and felt it important that I also took 3 separate breath tests. (which happen to be on huge holidays)
I have never done any of these tests and feel confident I'll find something out, and I'm glad that he considered it before I walked out. Doctors seem to be listening a lot more than they did a few years ago, perhaps my attitude and angle approaching doctors have changed. I'm used to the BS and know how to get through now.
Thanks everyone for sharing, it really helps to hear similar stories, and makes it easier for me to detail things with my own doctors. Good luck.
Posted: Fri Dec 11, 2009 8:52 am
by iva
Eliott,
your posts are as interesting and useful as always, tnx. Just as bbforyears I am positive u have reflux, since LES is loose according to two docs. And it takes little acid to have bb..
I hope further tests will reveal smth. Good luck!
Posted: Fri Dec 11, 2009 3:24 pm
by wnaysha
iva,
did the surgery you did to stop reflux help reduce bb at all?
tnx : )
Posted: Mon Dec 14, 2009 7:37 am
by iva
Wnaysha,
the surgery helped reduce bb, but it is not gone especially when I eat anything.
Posted: Fri Jan 08, 2010 9:11 pm
by elliott
Hi guys,
Been awhile since these breath tests take long to schedule. Good news is that finally, I have had a breakthrough. During the "fructose" breath test, I didn't even have to finish (tests are 3 hours) because the doc immediately noticed I was positive. So this is the first confirmation (ever, in 3 years) that I have a definitive internal issue.
I had already taken the lactose test, and next I have a wheat test.
Hey, if all I have to do is find the connection between my diet and fructose, I can easily handle that. Guess I'll know more after my last test and official doctor review. I'll keep everyone posted.
Posted: Fri Jan 08, 2010 11:57 pm
by elliott
http://www.foodintol.com/matrix.asp
May or not not have anything to do with halitosis, but take a look if you like.
Posted: Sat Jan 16, 2010 2:27 pm
by elliott
Correction: last test was not wheat allergy, it was small intestine bacteria overgrowth (SIBO) test.
Basically they give me a cup of lactalose solution, and track the level of hydrogen/methane that develops in my breath.
I'm looking forward to the results of all of this stuff. I wish I had done it earlier.