For Dencha:

Hi Carrie,

Sorry it has taken me so long to respond to your question, but things have been very busy and this is the first time I've had a moment to sit down and post to a thread. 

I'll try to answer your question.  If I still leave a question in your mind, please follow up with that question in your next post.

First, my reflux had been an issue (and been treated with PPIs) for probably 15 years.  Fortunately, I'm not one who has had difficulties with PPI side effects that make it impossible for me to take them.  I have been moved from Prilosec to Nexium and finally, Protonix. 

I have never had the lump in throat symptom from my reflux.  I did get both typical and atypical symptoms...occasional severe heartburn of the garden variety, as well as asthma flare-ups, which is my atypical reaction.  Fortunately I have a very astute primary care doctor who looked at some evidence (especially a gastritis/esophagitis/asthma flare-up that landed me in the hospital) and surmised that my reflux was much worse than it let on, and much of it was silent.

At that point I was moved to two PPIs a day.  My asthma doctor concurred that my reflux was one of the culprits that was making my asthma much worse. 

My GI doc never bought it.  My first one (whom I later fired) never even ordered testing (even though his office was treating me in the hospital) and was very negative on any of the surgical fixes--both Nissen and the newer technologies. 

My second GI doc did testing, including an endoscopy, but my esophagus was healthy without any inflammation, so of course he did not think I had a significant problem that needed anything more than continued PPIs.  My PH scores were always within normal limits.  I did have a small hiatus hernia.

My poor PCP...he knew I had a problem that was creating very unhealthy lungs.  After 4-5 years of GI foot-dragging, my PCP referred me to a surgeon himself.  The surgeon did some testing and along with my PCP recommendation, felt I should have the surgery.  Finally, this moved my GI doc to offer me the possibility of surgery.

I have never heard of anyone who had a loose LES one time and a tight one the next.  I even discussed this possbility with my first GI doc and was assured that I couldn't have intermittent LES effectiveness.  It was insufficient and that was it.  Once loose, always loose. 

Since you've had your gallbladder out, did your GI doc ever discuss the possibility of bile reflux?  Sometimes people with gallbladder issues get gastritis and even esophagitis from bile reflux.  That would explain why PPIs don't help you. 

My GI doc said that Carafate suspension is the best protection from bile reflux for both the stomach and esophagus.  Has anyone ever mentioned trying that?

Here is some information from Mayo Clinic about bile reflux:

http://www.mayoclinic.com/health/bile-reflux/ds00651/dsection=causes

Good luck!  I hope you get to the bottom of your problem and get things straightened around quickly!

Best wishes,

Denise

Oh, Marcello...you say that to all the girls!

Hi Carrie,

When I had my endoscopies I was being treated with PPIs and because of that I didn't have any inflammation or leisions in my esophagus.  That did make it more difficult to identify that I was having a problem, but with time and lots of persistence we got things figured out and treated.

Carafate is GREAT at protecting esophageal and stomach tissue, but I really don't think it'll make any difference regarding what they find in an endoscopy.

Don't be scared.  Whatever they find out you'll do just fine. There are such great medications and technologies out there now.  Even if you did need surgery, it's not all that rough.  Sure you'll read of people who struggle through the recovery, but the effort is well worth the positive improvements.

Try to relax and work on positive thinking.  Make an image in your mind of a positive outcome, and don't let negative worries take over. 

We're here to support you through the process!

Hang in there, Carrie.  You can do this.

Best wishes,

Denise

Oh...I wanted to add...I haven't been taking any PPI's because they aren't working for me... I've been downing a Zantac here and there, but really nothing more than that except I tried some expired Aciphex that I had in my cabinet the last few days...Not really sure it's doing anything though. Still having that "reflux" feeling and the chest pain.

Denise:

You know I would think that he would of thought of that...he really is a very good doctor but just doesn't not think this is reflux...again..I disagree. I'm feeling really depressed over all of this. My chest pain last night was really bad. I'm taking a trip to Disneyland with my two kids (26 & 17) and I really wish I was feeling better and not so worried over all of this.

Denise - do you mind if I ask how old you are?

Also, I'm kind of wondering if maybe this has something to do with my lyme disease and maybe this is a nerve-related issue and I'm spasming or something. I have Lyme but I'm still always brushing off the MS diagnosis too because I have 20 lesions on my brain but UCSF says no to MS. Athough..they want me back in December for a repeat MRI.