Congratulations on getting the peg out! What a milestone! I bet it feels so much better without that thing dangling down from your stomach. I am happy for you! :-)

I've had mine in since April 07 (11 mos) and I want it out so badly! Do you have any recipes that you can share with me? Maybe it will help me to start eating better so that I can get my peg out too. I have only been eating soups and beans and drinking Ensure.

Debz,
The shower without a peg tube was the first great thing for me also. I also didn't have to sleep on my back anymore. It took about 10 days for the spot to heal up. I still drink the Carnation VHC drinks for the nutrition.

I finished my treatment Aug 3, 2007 and had my first PET scan on Nov 20th - three months after treatment which is standard operating procedure. From my first PET scan I had two uptakes, one on my tongue and the other in my neck. They ended up taking another biopsy on my tongue and it came back clear. I am scheduled for my 6 month PET scan on April 29th. The funny thing is that my ENT said he wasn't going to do any scans and just watch me clinically. My RO is the one that ordered the PET scan at my last visit in March. He wasn't concerned about anything, just felt it should be done. I have learned from my ENT and others on this forum that the PET scan is only part of the tools in evaluating. I can remember that JeffL had a few good postings on this. He told me not to get too worried about the first scan after treatment. Things may show up that are false positives. Check out some of JeffL's postings on this to ease your nerves. I felt the same way you do.

I am 7 months out from finishing treatment and feeling great. I am up to 3 miles running on my treadmill - until this ugly weather in Ohio gets warmer. I eat most of the foods I want. I even took my 12 year old daughter to an Avril Lavigne concert last night up in Cleveland. I am praying things keep heading in the right direction.

I seemed to have the most problem with skin irritation caused by the various types of tape I used to secure the tube. Every tape I used caused irritation to the skin and I could only move the thing around to so many different positions from one day to another. Getting the thing yanked out was a day to remember. The pain was nearly unbearable but only lasted a minute or so.

Bill D.

EVERYONE,

Since the subject matter is PEG tubes and Bill mentioned the tape irritation, I need to suggest to those that are still dealing with it that they purchase a couple of those 4 inch wide(6 inch even better if you can find it) ACE bandages with the velcro closer and use that to secure your tube. Bill found it to be very comfortable (make sure the velcro doesn't touch the skin.) Just wrap the ace around your abdomen and close..move the velcro where it is comfortable. It's easy to pull the tube out to feed and then tuck back. They are washable...and breathable..made life so much better than that awful tape that irritates and leaves residue (we tried both cloth and paper and they both left sores after a day or so.) DON'T BUY THE ONES THAT HAVE SELF STICK..THEY ARE AWFUL...GET THE SOFT/REGULAR BANDAGES!

Congrats to those that have "graduated" from the PEG...to those still dealing with it..try the ACE!

Deb

My father in law had a peg tube and it fell out three times in a 3 month period. I am new to this site and am hoping that some of you on this stream will see and respond.
Did you all have problems with your tube? My father-in-law was very active prior to his diagnosis and tried to remain active by golfing, doing yard work and exercising. He found the tube cumbersome and the tape irritated his skin.

Most tubes will fall out after about 10 mos anyway...that's what my doc told me. Mine did, so I went to the ER and had a new one put in. I've never heard of tubes falling out as many times as your Father-in-law's did though, and in such a short period of time too. What did his doctors say? Did they say it could have been from his activities?

I have had my current PEG for almost two years and no sign of it falling out. My doc has basically said I should try to keep it in for as long as I can. There are different kinds of PEGs that are anchored in the stomach slightly differently from what I understand. I ahve enver heard of one falling out three times in 3 months either.

Nelie

The time I specifically remember was when we went golfing one afternoon and he came back to our house. He was complaning about the discomfort around the tube area. He lifted up his shirt and it fell on the floor. So that time it was from the golfing. It fell out once while he was sleeping as well. Where you active while the tube was in?

I have been hiking, bowling, done some yoga and gone dancing. I have also done daily active stuff such as carrying heavy boxes during an office move, running up and down stairs, hauling brush around in the yard, trimming trees and hedges, planting and watering plants etc.

I don't play golf so I can't say how all that compares in ativity level, and I will say that I didn't do this kind of stuff until several weeks had passed after my present PEG tube was inserted (but not because I was worried about losing the PEG, it was because I had had a more serious surgery right after the PEG was put in and was feeling very weak and in pain from that) , so maybe there's a difference between me and your fatehr in law, but I wonder if in his case they put it in right or made the incision too large or something.

Nelie

Sounds like you are very active. Don't stop and best of luck.
thanks for the input.