i am 8 mos post tx and am wondering if any of you could give me your input as to whether or not i am ready to have my PEG removed. i can take my meds by mouth now. i drink ensure and smoothies and can eat some solid foods now. i usually only do one tube feeding a day and that is early in the morning when my tube starts tugging on me at about 5:00 AM. i have been doing this for about three days now. my doc says i should be able to go three weeks without using the PEG at all before removing it. can any of you tell me your stories on how you had yours removed and when you knew that it was time? oh, the main reason i'm scared to have the PEG removed is because i keep having to have esophageal dilations because of the radiation side effects.

I was 3 months post RX and had gained back about 10 pounds.

I had not used it for about 6 weeks when i had it removed.
The real trick is being able to get enough nourishment by mouth and keep it going.

Kevin

It sure sounds to me like you're ready. If your doc is insisting on that 3 week thing, I would avoid that tube feeding in the am and have something orally for a couple of weeks instead just to show the doc. Once your stomach is full in the am, the PEG shouldn't give that "pulling" sensation, though you probably should flush it a little everyday even when you don't use it.

I understand your fear about not having the PEG when you still have to have dilatations, that is one of my issues too (though I have some others, like the medication issue, which you have overcome) but as long as you can get in for those dilatations quickly when needed (also a problemfor me as the place I have this done is in another state), it doesn't seem like your need for those means you should still have the PEG forever.

Be sure to come back and let us know when you get it out. We'll all be cheering!

Nelie

I think I would not be in too big of a hurry to get the PEG out if you are continuing to have esophageal dilatations for radiation side effects. Your doctor is giving you good adice telling you not to take it out until you are able to go 3 weeks without using it. Also make sure you are getting enough calories in orally every day and I know that takes a lot of work when swallowing is difficult and slow at times. You say the PEG tube is "tugging at you", what exactly do you mean by that?
My husband was anxious to get his out after a month of not using it for feeding but was not able to swallow his pills (didn't like them crushed). He ended up having to back to using it because his swallowing became more difficult and he couldn't consume all the calories he needed orally. Do push yourself to consume as much as you can by mouth and only use the tube feeding to top up your calories if you haven't consumed enough through the day.

I assumed "tugging on me" referred to something that happens to me in the morning where it is almost like there is some sort of suction force from my empty stomach going on where it feels like the flange (is that the right word? )around the G-tube, which is usually not tight against my skin is VERY tight and uncomfortable against the skin. It eases up when I open the tube and flush some water down it. And eases more once I get something substantial (not just water) in my stomach.

But maybe my assumption was wrong.

Nelie

i think the tugging is caused by the stomach "growling" and moving the balloon around which causes the flange to pull in tight. so, yes nelie, you are pretty much right about what the tugging is.