Sandy (177) - This is in answer to a question you asked about "PEG wars"on a previous thread and which refers to feeding tubes. I have not had direct experience with this although at one point in my son's recovery I had to threaten him with it because he wouldn't eat. Briefly, there are varying opinions on whether to use it or not. Until someone with actual experience gets to you, you could do a search on this page to bring up some very interesting, helpful and informative comments on the subject, or search on the main page of OCF as well. Continued good wishes to you and your family and in your caregiver role.

Thank you, Anne-Marie! I think it will be the best direction to go.

Sandy

Just like Captain Louis Renault in CASABLANCA, I am Shocked, Shocked to find out from one of your posts about OCF that [quote] there are an inordinate number of smart-asses who are members! [/quote].

As far as a PEG goes, that's really Joel's decision and as AnneMarie noted, opinions vary. Most of us ended up following our doctor's recommendations since some encourage them while other doctors find their patients do fine without. The "war" happen when one side or the other asserts or implies their choice was better or better medicine. It usually arises when a newbie asks: Should I get a PEG?

Charm

Hi Charm! Smart-asses? SMART-ASSES!?! yep, you betcha. The very best kind, too!

You are absolutely right. It is Joel's decision. I am such a control freak. I got accustomed to speaking for him when he lost his voice. I've been trying to stop mothering him...but it's a role I'm comfortable with. Thanks for the reminder!

I can imagine that people get pretty passionate about PEG feeding. It's hard to go into a situation and trust the professionals' recommendations and then live with the choices. A person has to almost be married to his or her treatment plan. So, defending a choice or a protocol is absolutely understandable--and necessary to have the confidence to deal with the whole thing. No one wants to think they made the wrong choice. It is another piece of the psychological puzzle that I think gets overlooked by the medical community.

Thanks for the input!
Sandy

It is a very big psychological puzzle at that, I ended up with the PEG a little over halfway through treatment. It almost defeated me, at that point I felt like a fighter in the corner begging them to throw in the towel. My team was different, they showed so much confidence in me and were almost positive I would go through without one. I personally feel getting the PEG should be your choice but knowing what I know now I shouldnt have been so stubborn. Getting that bad boy installed in the middle of chemo and radiation was probally the worst situation I have ever put myself in, really. Long live the PEG, it kept me trucking for sure.

Your Friend,
Nate

It is helpful to hear personal experiences with and without the PEG tube. He's a very thin guy--about 6' tall and 152 lbs. He's already having a problem getting weight back on after a throat infection in November. He wants to wait until he needs it. But, like you said Nate, waiting until he's in the middle of chemo and radiation might not be a good idea. I'll make sure to pass along to him everyone's thoughts.

Thank you!

Sandy

Ok here we go again...I didn't want nor end up with the PEG and if I were to have to go thru it again I wouldn't opt for the PEG. Now I did have a really really rough time with Cisplatin and nausea so at one point (my first week post Tx) a doc told me that I should try a nasal tube and I did and it really helped me over the hump. I have preached about the nasal tube often over the years and I still don't know why more docs don't offer that as a nonsurgical, just as effective, totally pain free alternative to the PEG. Most of us usually only need feeding assistance for a few weeks so why not have it put in ( 1 minute sitting in a chair) when it's needed and pull it out (I did at home in 10 seconds) when it's not?

I had the Nasal tube for approx. a week after surgery and I must say that for me it was the most uncomfortable irritating thing in the world. It kept getting kinked up in my stomache and was just all kinds of a pain in the ass. The PEG is not much fun either but after a while it is not so bad,just a nuisance. When I went to my therapist the last time she kept saying I was depressed because of marijuana use, I told her I was depressed because I hated the PEG and wanted to feel normal again. PEG came out, I started healing and eating again and what do ya know? Most of my depressions are gone, I am not on any meds and feel though the PEG helped me along it definately kept me a debbie downer.

I hated the PEG, but was glad I had it when I was recovering. Was very glad to get it out. But, I agree, it was eventually more an annoyance than anything else, particularly when I went back to work and I was figuring out how to dress. I always had to have slacks with pockets, and I would put the end in the pocket, and wear a loose shirt or sweater to keep it covered. (Of course by then, everything was loose because I had lost so much weight.)

Ron had the nasal tube, pulled it out twice by himself(gross)he said it hurt his throat more when he swallowed. He refused any kind of feeding tube...which as you all know me and him had our battles about eating to which he went down to 120lbs @ 6'1" but it was his decision and no matter how much I cried and begged him to get some kind of feeding tube, he continued to try and drink those protein drinks by mouth, which I guess was a good thing, kept his swallow reflex going. Now he is an eating machine! But he only eats Stouffer's mac and cheese his favorite to slide down, and stouffers chipped beef and white bread not toasted and no crust and fettucini alfredo, and he can eat cookies when soaked in milk not choco chips that easy but those almond windmill cookies without the almond slivers in them. He does ice cream and shakes and ramen noodles he can get down. but no like ground meat. BUT he is now up to 137lbs! woo hoo! fatty lol