peg users

[smwelder]

for all of you pals that use a peg and a peg only, although you only use a peg can or do you still taste your food but no chewing or swallow it?

 

[pudge44]

I want to know this too! my husband is booked to get his peg april 25th, do you already have yours?

 

[LizT]

do you mean can you taste it from a tube feeding? or are you asking if people still put food in their mouths to taste it?
if you are talking about tasting it from the peg, then no. it cant be tasted, unless you have indigestion and some comes up into your mouth. youve got to use your taste buds to taste.
as for the latter- my pals never put food in his mouth after he started using the peg. too much of a tease. and depending on how well your tongue works, can be very dangerous.

 

[BarryG]

Once you are at the point that you are peg only then there is no tasting, period. I have absolutely no control of where anything goes once it's in my mouth so to taste, chew and spit or anything like it is way too dangerous. I have not tasted food for well over a year and while it is not fun it is life and I'm still here with no aspiration pneumonia so far.
Sorry, ALS sucks especially when it takes away one of the fundamental pleasures in life.

Also have to add that when you can't even swallow your own saliva then getting your mouth going with the taste of food is not a good thing and leads to a lot of suctioning.

 

[pudge44]

My husband has to be pegged tubed, proceedure date is set for april the 25th but I have questions for all who have had this proceedure done, what was post op like e.g. how long was it before you could lift things etc, how long were you in hospital, how long before you went back and got the tube buttoned to your skin instead of having the long bit ? please answer and ty

 

[BarryG]

Kim, the length of hospital stay and recuperation time varies widely between us with some having the procedure done as an outpatient and little time to be doing things as before and others spending days in hospital, lots of pain and weeks of getting used to it. I spent 4 days in hospital in Feb 09 because I didn't do well when they first tried to do the placement with just a sedative so they tried again the next day with a general anesthetic and that went well. I never had any real pain but others do and I was back to my normal self in a week. I think that it's irresponsible to not spend at least one night in hospital to be safe and also it is very important to get training and equipment so that you know how to use the tube and care for it.

The original tube is good for up to 18 months. I am not sure how long you have to wait before switching to the button type as I have never done it. Many people like them but others say they are more trouble than they are worth. The doctor who did my placement and also did the replacement to the balloon type doesn't recommend them because of plugging and cleaning issues. And really, the non button type is no big deal as it's hidden under my shirt and I only tape it at night or when I'm in the shower.

 

[Miss]

My husband has his peg placed as an outpatient in day surgery. I would highly recommend an overnight stay. His was a bit too tight, and ended up causing him considerable pain that night. If he had been in the hospital, they would have loosened it, and that would have been it. Other than that, he was back to normal immediately. His peg was places 07/10, and he still hasn't started using it.

 

[twinmommie72]

I had mine placed 3 weeks ago and it was outpatient. I'm just now getting to the place where it doesn't hurt as bad. I felt it should have been inpatient. The pain was horrible for me and no training was given, however we were given instructions from the copier. :-? Luckily I have a super sweet retired nurse right across the street. Make them do an over night stay. Have alot of pillows ready to prop him up in the bed. Hugs and prayers xoxo

 

[Phil M]

Icecream was the last thing I could eat by mouth. I sure do miss eating!

 

[ZenArcher]

I've had my PEG for almost a year and I have a very weak swallow. Every now and then I will get a small piece of something that dissolves for a taste but I've found that a lot of things taste "off".

 

[kelly]

My hubby is on 2 years and 3 months with a feeding tube. Every once in a while he will have a taste of ice cream..but otherwise it is just to difficult to navigate and swallow. He is keeping his weight on and looks great......

 

[smwelder]

pudge44 yes i do have mine. i had it done befor i needed it . I got the first type of tube done its the kind that has a external tube thats about a foot long then after two months or less and i healed so to speak i got the button type peg, its flush with skin and to use you insert the tube, its kind of a twist lock. i still eat but i started useing it now for pills and ensure be cause theres times its hard to swallow

 

[smwelder]

yes Liz i was asking do people taste food by mouth but not chew or swallow

 

[HarlequinHeart]

I've had my PEG for almost a year and I have a very weak swallow. Every now and then I will get a small piece of something that dissolves for a taste but I've found that a lot of things taste "off".

My mother had her PEG put in place yesterday, and she describes her eating ability the same way. She's tried some mashed potoatoes and things of that nature, but for the most part she says everything tastes "off". Even things she used to love taste strange to her now.

Edit: And to answer your question a little better as far as swallowing goes, she is currently able to swallow pills and mushy foods, but she gets anxious about it fairly quickly. It appears that her ability to swallow may leave her soon, although it's hard to say how quickly. For now she will eat a few bites of mashed potatoes or tiny pieces of corn and peas before she gets too tired to continue.

 

[BarryG]

HarlequinHeart, is your mom taking Rilutek by mouth? When I was trying to swallow those little pills they would sit on my tongue as I struggled to get them down and I found that it really affected my taste and everything tasted bad as a result. Also as my bulbar progressed my mouth hanging open all of the time combined with the real difficulty to clean my mouth (I can't really rinse well) dries out my tongue which affects my sense of taste. It isn't really important to me as nothing goes in my mouth anymore but it might be part of what's happening with your mom.