x-post still no answer

Back from Saranac Lake and Dr. Hill's office. have to be on this feeding tube for at least 6 more weeks:( This really sucks! He still can't figure out what is going on and he's been to every advanced conference in the country and is actively still searching for an answer. I know he's not giving up and I know he's really trying to figure this out..... but it is still discouraging to have so much stomach pain and literally not able to get anything down let alone keep it down. I've ner had the dry heaves and vomiting so much in my whole life . I am living on baby food and tube feedings. Not sure what quailty of life this is, but I guess it is what it is.

 So sorry!!! Hope you get things figured out soon!!!

I'm not sure this will help, but I have Sphincter of Oddi Dysfunction.  Since my surgery, I have not a long term flare, but I have had months prior to my surgery when I could not keep food down.  Does it cause a lot of pain, I mean A LOT?  Yesterday I had a flare and had a pain of 10 and held no food down all day.  It may be a long shot, but I know it took me years to get my diagnosis after months of very intense pain, I finally found the right doctor.  I thought it was worth a shot to tell you my storry and see if you see similar problems.  For me the pain is a sever pressure feeling that is right under my sternum and radiates sometimes to the right or left and through to my back when it is most severe.  I really hope they find and answer.  I know how frustrating it can be when no one can tell you what wrong.  I actually found out by watching "Mystery Diagnosis" after getting to the point I literally wanted to die if I couldn't stop the pain and nausea.  After seeing an episode of Mystery Diagnosis and then doing my own research, I was absolutely convienced that this is what I had.  I finally found a doctor who listened and believed me and finally confirmed my diagosis.  I'm so sorry this is happening and pray they find an answer soon!   Please feel free to private message me!

I am so sorry you are having so much trouble.  I have a friend who had surgery a month after me, she ended up with adhesions on the outside of her pouch.  The doctor couldn't see them with the endoscopy.  Finally after months of agony they did exploratory surgery, found and removed the adhesions and now she is doing great!  

I hope they figure out what's going on with your pouch, and that you get back on track soon.

Sara in Maui