This PEG issue will NEVER die! It's been going on since the beginning of the forum.

For the record I refused a PEG, one doctor was for it and the other AMA. I lost over 60 lbs and had a long and tough recovery. The RO had serious doubts that I would even survive. It took extraordinary work, narcotics and pain to maintain swallowing (even water). I was hospitalized 3 times for rehydration. Going PEGless is not for the faint of heart, a difficult and arduous path to take. There are a scant few here who mananged to do this without a PEG.

Conversely the PEG has saved many lives, in hindsight, I probably should have gotten one. One thing I will not do and encourage all others here is to give specific advice on the PEG issue. The purpose of the forum is to offer your own personal "experience, strength and hope" - not hand out biased or mean spirited comments about an individuals personal choices -even if YOU perceive them as well meaning. The vast majority of us are NOT doctors and we need to be careful about the fine line of sharing our personal experience and giving advice.

Maybe the muscles do atrophy and need retraining but they have specialists who deal with swallowing and stricture issues. If there is hard science that demonstrates that maintaining swallowing is a benefit - please show it to me. I honestly have not seen any studies on this - only anecdotal comments and theories.

Danny G, one of the original members here was on a PEG for years and finally got off it and has returned to normal. Since we all respond differently to treatment there is no "one size fits all" here. My swallowing is hardly perfect and I didn't have a PEG as I stated earlier.

PEG tubes also cause much consternation and fear for newcomers especially and we need to be sensitive to their needs as well.