Thanks for the tips everyone. My name is Dave by the way.

I guess I'll just need to practice at it. Right now my goal is to have my tube removed (it's a J Tube, not a PEG so feedings are much slower). I had a bowel obstruction after surgery resulting in what they called Superior Mesenteric Artery Syndrome. Basically nothing in the stomach gets through to the intestines. Hence the J-tube. It results from rapid weight loss (in my case about 50 pounds over 6 months).

I've gained about 15 pounds back so things in my stomach are starting to correct themselves. I get about 2 cans down orally a day now, and will just gradually keep increasing.

Does anyone have the experience that the throat feels like there's a lot less space then there once was. I swallow something small but it feels quite large. What can be done about that?

Jim - yeah there is not much information out there for those in our situation - it's really quite a rare thing it seems. My mom is working to get more attention paid to this actually. I'm 28 years old by the way.

I do have movement of my tongue thanks to the part that remains and it is not sewn down for whatever reasons. But movement doesn't help much when you can't feel anything anyway. That's my biggest problem. Speech-wise I'd say I'm about 75-80% of what I used to be. Certain sounds/words are very difficult but a lot of the time I sound as I did before - I suppose I'm lucky in that regard.

They've suggested that I might get this prosthetic thing that would lower the roof of my mouth (like a retainer) which make for less space for food to "get lost". Does anyone have that?

I agree a section devoted to those of us with this problem would be great.