Nelie,
I believe that I was "addicted" to my tube which was implanted at time of near total glossectomy in Feb 2004. Because I had celllulitis complications in June 2004 after 36 radiation treatments, my otolaryngologist was hesitant in getting me on a swallowing therapy program. I had about a year of this off and on and passed the barium test Dec 2005. However I never got the hang of getting off the tube and thought I would have it until I passed. My only attempts were swallowing a 5 oz. glass of fruit juice daily.

Then in Nov 2006 I began to have tube problems. No one told me & I didn't ask about frequency of tube changes. I developed an infection on Nov 2006, cleared up with antibiotics. I saw a GI doc who sid I should replace the tube. He pulled on it a number of painful times and it would not come out. I had to have it replaced via endoscopy 1 year ago. In summer 2007 I noticed some pain occaisionally and mild discherges at times. I then began to accelerate a liquid diet of ProBalance with assorted flavor packs from Nestles which help make the drink taste. I must have sensed trouble ahead. It came a month later when my tube was replaced the second time. I started having worse discharges, pain and some bleeding which reached a climax on October 4, 2007 when I had bleeding at the tube site that would not stop. My wife called the emergency squad and the doctor at the ER removed the tube. By this time I was able to drink enough probalance and Carnation VHC to maintain weight.

The former tube site leaked badly at first but by Thanksgiving the leaking stopped. I tried some broccoli cheese soup but found I had heartburn so I stopped. Maybe the gas in the broccoli caused this but I returned to strictly probalance and VHC exclusively. I can't handle solids due to inability to control and feel the pieces in my mouth. I feel that I am very lucky to be able to maintain my weight with the somewhat pleasant tasting flavored nutrition (thank God for flavor packets) and I am so happy to be rid of the tube and the pain. I feel almost normal for the first time in a long time.

In retrospect I wish I had asked more questions and more aggressive in swallowing to get rid of the tube sooner but better late than never. I am grateful for the tube when I needed it but like any other good thing its time had passed when I should have been off of it.

I wish you the best in your struggles.

Jim
---------------------------------------------------------------- SCC Rt lateral tongue Dx 9/03, Surg 11/03 (T2/N0M0);recur SCC BOT and anterior tongue Dx 1/04; surg 2/04 (T4/N0M0) subtotal glossectomy, forearm free flap, floor of mouth reconstruction,pharyngoplasty;trach until 3/04;PEG; 36 rad (3/04-5/04)therapy 12/04-12/05; 2 esophagus endoscopies; PEG infections Nov-Dec 06; embedded tube replaced by endoscopy Feb 07; replaced Sep 07; bleeding, tube removed Oct 07