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Cricket

Distinguished member
Joined
Feb 10, 2013
Messages
172
Reason
PALS
Diagnosis
07/2011
Country
CA
State
ON
City
Ottawa
Hi
Just have a few questions about feeding tubes. I think i have read most of the past posts re the peg. I also watched the very informative video from the als association regarding swallowing and feeding tubes.*

I was just wondering if anyone ever regretted getting a peg? (weird question i know but worth asking). Has anyone experienced their peg falling out or being pulled out by mistake? I am assuming that there is one type of tube. Could there be more to choose from? According to what i have read, it seems pretty easy to take care of. Any helpful tips?*Btw, thanks rose and others for sharing the blender food websites. They are helpful.

I know some of you are relieved and very satisfied with the peg. I didn't think i wanted a peg but choked on food the other night and had a really good scare and really scared everybody else. So, after a good cry, thought i'd start asking around since my next als clinic visit is in a few mths. Thanks y'all eh!*
 
Glad you asked that question Cricket. I want to hear the answers also. Plus I would like to know if you have any choice of whether to eat or not after the procedure...sherry
 
Hey sunewun :)
My understanding is that after the procedure one gets help figure out the quantity and calories for tube feeding (i really hope nobody is offended by this term). I also read that one can still eat by mouth after the procedure (well, till it is safe i guess). However, i am for sure no expert... cheers and ttys
 
I have never heard from a PALS who regretted getting it. My husband got his 2 months after his D X, and he does not LOVE it, but for sure NEVER regrets getting it done. Yes you can still eat normally with a PEG tube. Yes, people have had problems, but that is mainly due to an incompetent doctor. Just think, you can get ALL your necessary nutrients in a very easy way, and just eat the food you love to eat by mouth. Very easy to take care of. I do know of a couple PALS who had the PEG inserted at a very late stage, and sadly they did not do well. Get it early! Even if you only use it for water for a couple years. GET ER DONE!
 
Sounds like you're on the right track, Cricket. I'm having that discussion at Clinic tomorrow.
 
Hey sadiemae...got it loud n clear :) lol... thanks!
To momap53, tomorrow eh? Wishing you all the best 2morrow. I always get a little nervous (like before taking a final exam in school)
 
Hi Cricket,
Sadiemae said it right. The sooner the better. It's not hard to take care of. I think it's a natural fear to worry about it popping out, etc., but that's very, very rare. We all learn. It's all about keeping your nutrition levels up, staying hydrated without the fear of choking, and keeping the site and tube clean. It's daunting but such a relief too. Such a big step but such a helpful one too. But definitely worth a cry! Sorry you're going through this. Yasmin.
 
I'll be thinking about you tomorrow, Deb. Wish you strength! Take care sweet lady. Yasmin.
 
Hi Cricket,

I had a PEG because of throat cancer for many months. I was using a gravity bag and hooked it on the top of the door to the commode room in the bathroom and when I got up I was walking out and it got stuck on the bottom of the door. I was walking along and suddenly became the dog on the end of the chain, so to speak. It hurt, cracked a couple ribs but did not come out! There is a ball on the inside filled with water so it is tough unless it leaks. I had a new one swapped out in the office once and it wasn't bad at all. I put in a thing called a "button" that had an extension so you could snap it in for feeding. It was for more active people and the bulky tube didn't bulge out of my shirt. There was a narrow tube and a wider one for food. For what it's worth I cough and gag with every meal and just about every drink and have for many years. Just practice taking a good breath before you eat and don't talk while eating.
 
ALways sooner rather than later! Once the FVC drops it becomes more dangerous to do one. As Sadiemae said, you can eat with one as well. It's a bit uncomfortable in the early days--as any surgical procedure is--but do it when you are as healthy as possible.

Good luck!
 
We should also mention that if FVC is low, a PRG instead of a PEG has met with considerable success, and that BiPAP can be used during either procedure.
 
to any one getting a peg ask the dr putting it in what to do if it comes out and they can get pulled out or fall out but it doesn't happen often.. peg tube sites close very quickly so it's good to have a plan in place. also ask how often it will need to be changed, how often you should flush it with water if you are not using it and who to call if you have a problem.
if you absolutely hate it they can be removed and will heal over and after you get it you can choose not to use it but if your fvc drops too low you cannot get one so it's better to get one while you can.
also rose has some pictures if you want to see what they look like.
 
Thanks gang

Uptown... Ok have to admit i cringed a little reading about your fall...ouch! The info about the "button" helps me understand better how this works. Already feeling a little more brave ;-)

What is PRG? Hmmm! Will have to google this one.

Don't talk and eat... A good reminder

I guess it is like going in swimming cold cold water. Just have to suck it up, go for it and dive :)

It means a lot to me to read your feedback and advice. Thanks again.
 
Thanks marypat...good to know
 
Yes Cricket, I am a BIG supporter of PEG tubes.
 
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