PEG (Feeding system)

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billybob

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Joined
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Reason
PALS
Diagnosis
09/2017
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US
State
FL
City
The Villages
I have now been advised to have a PEG port placed in my stomach since my breathing has taken a turn for the worse. I can still eat and drink, but I was told my FVC was now down to 50% so it's time to do this procedure before my breathing becomes even more compromised. The procedure would be done at the Univerity of Florida Health/Shands in Gainesville. Has anyone experienced this procedure? If I don't need to use it at this time, is just the port placed with a cap on it? Thanks so much, fellow PALS:smile:
 
Yep, tons of us.

Do it, don't hesitate.

But be warned, it'll hurt for a week or two.
 
Just about all of will get a peg tube. When I first got mine, it was same as reason as yours. My FVC was at 68. I didn't start using it until I got trached las January.
 
Do eet.!
In addition to the other good advice here there's also the compelling reason to save your muscles for pleasure eating and pump everything else through the PEG. Also it is easier to keep weight on by supplementing meals, although in my case I went over board. I went from a low of 148 to 210. I have now settled in to a comfortable 190.
YMMV. -
 
lots of good info on here about feeding tube s. You don't have to use it for food but you will need to flush it with water daily. It's really no big deal after a couple weeks..
 
Right time, right move. Don't be scared, the benefits far outweigh any doubts about being pierced through the belly.
 
Yes the tube is a good move, I was almost called a liar when I reported that I had no pain with my operation but that was the case, no pain what so ever. I use it to take all my terrible tasting meds and vitamins. I still eat in the normal manner.
Al
 
Thanks, PALS, for all the great input. I am leaning toward a Mic-Key low profile button. Is that possible initially, or does another type have to be used first and then replaced my a mic-key button?
 
Pain levels after surgery vary. Nearly everyone experiences pain however, but some only need panadol, others need stronger meds and for a week or so. Just be prepared for this, it's better to be pleasantly surprised if you have very low pain. However it's really important to control the pain as you will breathe shallow if you have pain there at the base of the ribs and this is bad.

You will have a dangler tube placed, then you can opt for a button around 6 weeks later if all heals normally from the initial insertion.
 
Thanks, affected, I appreciate your response. Do you know how painful, or the extent of the replacement procedure is? After the stoma is healed, is changing to a button easily and quickly done at a doctor's office?
 
In the US, some docs are placing the button initially, without the need for a dangler first. Ask what is recommended and why.
 
That's a new update, and the first time I have heard some are placing button initially, it never used to be that way (in the US).

So yeah check on that!

Usually changing through a healed stoma is not terribly painful and the older the stoma the 'tougher' it becomes so changes really end up a snap :)
 
The safety of de novo placement of buttons in Radiology has been established for some time -- like everything else, it often takes a while for everyone to get on board and as the authors note, the disconnect between gastros/their suppliers and radiologists is real.

I've attached a 2003 (Ireland/UK:p) paper describing placing the buttons first thing, as an example.
 

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I had it done 2 years ago as my breathing dipped below 50% like you. I still use it exclusively for taking pills. No feeds, no water, just pills crushed to a powder and mixed with water. I have a 1/4" tube about 8" long with a Y port on the end. The procedure takes about 20 minutes and is no worse than a bad trip to the dentist. I don't need it for food and water, but it is there when I do. It hurts like a bugger for a week and then you just clean it by soaking a drain sponge in saline and letting it sit for 10-15 minutes. That's it, easy peasey.
Vincent
 
I had it done 2 years ago as my breathing dipped below 50% like you. I still use it exclusively for taking pills. No feeds, no water, just pills crushed to a powder and mixed with water. I have a 1/4" tube about 8" long with a Y port on the end. The procedure takes about 20 minutes and is no worse than a bad trip to the dentist. I don't need it for food and water, but it is there when I do. It hurts like a bugger for a week and then you just clean it by soaking a drain sponge in saline and letting it sit for 10-15 minutes. That's it, easy peasey.
Vincent
Thank you so much for this article! When I eventually have my consult appt, I will be loaded for bear!
 
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