Lots to say.....

Well, I have not had a confirmed diagnosis but from the tests I have had, my symptoms, and talking to other folks who have this...well I am 99.99999999% sure this is my problem. Now this is a very broad group of disorders. What we think I have is Ineffective Esophageal Motility Disorder. This is something that is incurable. I mean there is nothing at all they can do to fix the problem. Now there are things to do to help manage the symptoms, these I have to learn. For right now I am on a complete liquid diet. Yes you read right. LIQUID ONLY! I can't have solid food. It stays in my esophagus for too long and takes lots of fliud to actually wash it down. Even just two crackers chewed and chewed and chewed will take hours to go down.

So....how did I find all this out? Well tummy issues have always been in my life. I just never really thought it was anything bad. They always said IBS. So we left it at that and went on with life. Then last fall I started having major indigestion. Then I ended up with major pain at the connection between my esophagus and stomach. So to the doctor I went. She said I had esophagitis most likely from reflux. So off to the GI I went. WIth these two appts started my road of trying different reflux meds and a scope up one way and down the other. The GI discovered I had a very small spot of Barrett's Syndrome, a small hiatal hernia, and a very raw stomach and esophagus from acid. So they put me on a new reflux med. I seemed to be ok for a bit. Then I got a stomach bug. Boy did that hurt!! After that bug things went from ok to really bad! So back to the doctor I went. They changed my meds again, this time I went on protonics. Didn't work...well, I wonder if it worked for the acid but the chest pain was the issue.

Now hind sight is better than fore sight. During this time I was noticing my chest hurt a lot. I also was using my inhaler because I assumed it was my asthma.  Then I noticed it was when I ate and it was getting worse. I then payed closer attention to it. I ended up noticing that my chest felt full of food but my stomach still felt empty. Strange. Still didn't really think anything of it. Then it got really bad. My chest was hurting really really bad. I felt like I just couldn't eat. So back to the doc and the GI doc again. They sent me to get a Motility test and my pcp put me on Nexium.

The Motility test results haven't been read by the doctor yet, but from what the nurses said during the test and what I could see on the screen....it didn't look good. The nurses said I had a large hiatal hernia, doc had said it was small at the time he did scope. They also said there was NO movement of my esophagus at all. The fliud they had me drinking just stayed there. It didn't go down at all!! I was watching the screen...it seriously just stayed there! No muscle contractions..nothing. Um...that's not a good thing.

So that was last week. I am waiting very impatiently for the doctor to read the results and talk to the nurses who did the test. From there we will know more. I have been able to get in contact with some other people who suffer from this. They h ave been helpful to say the least!! I found out that the best Motility Specialists in the USA are in Boston, ya know 30 mins from me!!! So hubby is currently writing down questions and comments we have for the GI when we go see him, hopefully end of the week. We need to learn all we can.

So that is me in a nutshell right now. If you h ave any questions please ask and I will try to answer!! We are new to this as well.

Robin