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Janie H

Senior member
Joined
Jun 23, 2013
Messages
714
Reason
PALS
Diagnosis
06/2013
Country
US
State
South Carolina
City
Rock Hill
I just want to share my experience with anyone who is on the fence about getting a PEG tube. I got mine in January and it came out in Febuary, had to get another one put in, since then everything has been great. I don't have to worry about drinking anything unless I want to, cuts down on choking. I can still eat but when I can't I don't have to worry, it's in place. Please rethink if you have decided not to get one. I don't have to worry about the 20 vitamins that I take a day, they go right in the tube. I was asked by the clinic to get one before I needed it and I'm glad I did.
 
I couldn't agree more!
 
Ditto, except it can't eat
 
'm wondering how long I will last when I can no longer drink the smoothies ... any ideas?
 
That is great Janie. I so agree getting it early is the way to go if you plan on ever having one.
Max, when people can not take in any liquid they usually last 7 to 14 days but if they can take in a little it can be much longer. If you get enough water equivalent and are not getting enough nutrition that go on for a very long time especially of you are starting from a good weight and nutritional status. I totally respect your right to choose if you are sure.
 
>I totally respect your right to choose if you are sure.

:)
 
I worry too much, it is everybodies personal discision
 
Getting the peg earlier was the best idea for my pals. He has been able to maintain his weight and no problems so far.
 
I was terrified of the PEG until we actually had one implanted. The doctor recommended it in December, but I wanted to see the pulmonologist again before making that decision. No one had actually told me what a peg tube is, and as I'd never heard of it, I thought "peg" was a word. To me, a peg was something you hang stuff on, and I couldn't imagine what you'd hang from a peg tube hanging out of your body! I looked it up on the internet and discovered PEG is an acronym for percutaneous esophogeal gastrostomy. My husband, the patient has no discomfort from it at all, though we are not yet using it for regular feeding. I flush it twice a day and clean and dress the port once a day. I also use a bit of antibiotic salve (mycitracin) around it. That seems to help with cleaning it because the "crusting" doesn't stick to his skin. It doesn't really need a dressing but it keeps his clothes from chafing it. Does anybody know how to gently remove the tape residue from his skin?
 
If you are referring to tape residue from taping down a dressing, don't tape it to the skin. Just use a gauze 4 x4 or 2x2. Get the kind that is split to fit around the tube or cut them yourself. Overlap the edges and put a strip of tape across the overlapped edges, not on the skin. If you are taping the tube to the skin, that isn't necessary. Unless he has a tube that doesn't have a bumper or balloon in his stomach (very unlikely) it doesn't need to be taped down at all. Just use a dab of vaseline to keep the crusties soft You don't actually need to use anything--soap and water will get them off-- and it is best to save antibacterial and antifungal ointments for actual infections. If there are red, lumpy bulges around the edges of the stoma use a dab of cortisone cream on them. They are granulation tissue, common because the body will keep trying to close the stoma. Granulation can be extremely painful and bleeds easily so just using cortisone cream at the first sign of sensitivity around the tube will prevent it, usually with a single application.
 
no peg death 6-8 dayts :)
 
I just don't know what I'd decide if I it were me. My mom had colon cancer and was on a peg for a short time. She made them remove it because she hate it and missed eating. She survived 2 years without it but that was with cancer and not ALS. Dad is 79 and has limb onset ALS. He refuses to ever have a peg. The only thing he has agreed to so far is a bi-pap and pwc.
 
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