I had a near total glossectomy in Feb 2004 and a PEG tube was implanted during the surgery. I was not to;ld or was I wise enough to ask about how often to replace. So I went along with it with no problems until about a Nov 2006 when I developed several infections. Antibiotics (augmentin) cured it for the time being. I had swallowing therapy and passed the Modified barium swallow test bur wasn't aggresive enough in regaining my eating. In other words, I allowed myself to become tube-dependent.

In Jan 2007, the top of the tube became corroded and my local GI doc tried to pull on it to remove it. He pulled several times andit was very painful. My next step was to go to where the original tube was placed on Feb 2007. They found the tube had been in so long that it was hardened and embedded so it had to be removed by endoscopy. Another was implanted endoscopically. The second tube was called a "Mickey" button. Theu told me to come back 6-7 months later to have it replaced. I was beginning to have some occaisional pain in the tube area.

The second tube came out fairly easily much to my pleasant surprise. This one was a balloon type that he inflated after insertion. There was some bleeding but not bad. I confess that I took some pain meds before the procedure.

About several days later, I noticed some bleeding from the area and some of the discomfort like an occaisional "stab". I thought I had perhaps got infected there and got some augmentin from my doctor 4 days later. Took it for 3 days but noticed bad diarhea and I felt a little dizzy. So I stopped the medicine and this went away. During this time the bleeding became more frequent. Like a heavy spotting but only occaisionally but never had any bleeding or pain at night when I was lying down. This leads me to the conclusion that the movement of the tube inside must be the cause of the discomfort and spotting of blood. The bleeding has reduced considerably since going off the antibiotic yesterday.

Thanks to a brave soul named "misskate" (who posts on cancer blogs) I began I concentrated program of taking more and more nourishment orally in August. I now believe that I can sustain myself without a tube if I had to.

Has anyone had similar PEG tube problems? I think my best course is to go back to the doctor and ask the tube be removed permanently.

Some lessons I want to pass along to new PEG tube users is to inquire when the tube should be replaced. I know I should have done it but when you have this disease you are thinking about so many other things. Still, no excuse.

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 still have; 36 rad (3/04-5/04)therapy 12/04-12/05; 2 esophagus endoscopies; PEG tube problems Nov 06 to present