Markus,

I don't get it either. The PEG is a tool, like any other tool. Would you turn down a cast on a broken arm? Or refuse to use a screwdriver to turn a screw? I had a PEG, lost almost no weight during my treatment and never had to be re-hydrated in the emergency room because I couldn't get enough fluids by mouth. I guess I don't see what all the controversy and angst is about.

Now, for those long-term users, I totally understand the anger and frustration. Totally.

Charm, I appreciate you not stepping on my blog. I enjoy these tense conversations. I have not even had this PEG for a week, and I already hate it. I have had nothing but pain with it. It is hard for me to walk, breathe, stand, sit. Anything where I use my stomach muscles, it hurts. If I had ti to do over again I do not think I would get it. Anyway, I was only doing what the Drs told me to do. Now I feel like i have lost control of everything.

Angelina,
on a more practical note, could it be that your PEG is too tight. I had that too the first few days, it felt like a stake in the chest.
I had it then loosened a bit and from that point it was ok.

M

My nurse called me on wearing a coat about half way through my treatment. She let me wear it though because she said I had been wearing it from day one (which I had)wasn't fooling her. I never thought to carry extra wieght. I ttok my pride in seeing my wieght stay stable. I did loose about 7 lbs after treatment stopped. i just made that up now.

Kelly

I didn't even have a chance to try and out smart my RO at Moffitt. Each time I was weighed I had to take everything out of my pockets and take my shoes off. It was also summer in Fl so all I had on was shorts and a shirt.

I remember the first "fight" I participated in on this site over 3 years ago was about the Peg. The pros and cons are the same now as then and I don't see either side crossing over.

OK, I'm fairly new here so forgive me, but why would there be a "fight" about peg tubes. They are required for some, not for others. Whats the big deal? If I had been forced to get one I would have. Fortunately I didn't have to.

Sorry the "fight" I am referring to is it's almost always a 2 sided discussion with few middle of the roaders. Also many of us are not forced to get the Peg as that decision is left to us and then that leads them to this site to ask the question, Peg vs no Peg, and then the debate starts all over again.

When I first came to this site which was after my Tx was completed I was vehemently against anyone getting the Peg as I concluded after reading many posts that there was a direct correlation to post Tx swallowing problems and having a Peg. Since then I have concluded that the Peg is certainly a tool, that when used properly, can benefit this Tx process. I have also concluded that it comes with a price which is putting up with the Peg itself and perhaps post Tx swallowing issues. So now I just try and warn people to keep swallowing throughout the Tx if they do get a Peg.

The PEG is a flashpoint because even doctors are divided on its utility. As DavidCPA noted, it's easy enough to find both documentation for the position that getting PEG can lead to post TX swallowing difficulties as well as for the position that without a PEG you will not get enough hydration or nutrition. A PEG can be an unnecessary crutch for some while for others it is a necessity.
Since many people (mostly male) eschew the PEG and have zero hyrdation and nutrition issues, pro Peggers assertions on those issue ring false. Reasonable people can disagree without being disagreeable so the PEG debate is constantly renewed on OCF when new patients turn to us for advice as unlike radiation or chemo, you can survive cancer without a PEG.

A PEG is hardly innocuous, just read Angelia's post and she only has had it a very short time. I always chuckle when I see it compared to a cast as I remember when all the medical advice was to tape your ribs and toes when they broke whereas now doctors realized that such a cast type binding hinders healing and so have discontinued it. Likewise the emergence of the "boot cast" to replace crutches. Without a PEG, one has the ultimate motivation to keep swallowing daily. I can say from experience just how easy it is to just give up swallowing once you get a PEG as well as how hard it is to relearn swallowing.

But the medical efficacy of a PEG is really a red herring. The underlaying issue is CONTROL of an otherwise uncontrollable force. Cancer TX does not allow you very many choices except for the PEG decision. For those of us with control and Authority issues, a PEG is a big deal. For those who have different issues in life, a PEG is not a big deal. Neither side will ever truly understand the other. There is room enough on OCF for both sides.

Let me try and give a less charged example that illustrates the same point. Just yesterday I went for my fourth Modified Barium Swallow Test at Georgetown hospital. As usual, the nurse escorted me from the waiting room to the radiology dept dressing room and instructed me to take off my clothes and put on a gown. As usual, I politely refused. Now what's the big deal either way you might ask? Well, I don't need a

Just realized I was typing in quick reply which cut off my post.

to finish off. I refused to wear the gown and moreover insisted that unlike everyone else in the waiting room that I would have my wife escorted there to stand behind the lead glass wall to watch the MBS since they were having a graduate student do that and there was plenty of room. While we were waiting (over an hour delay) we had plenty of time to observe other patient's similar request denied. They just accepted it, just like they accepted putting on the gown. For me, refusing the PEG since they could not show me any real probative evidence that I would need it, wasn't any different. so that's why there will always be "PEG wars" - its a matter of personality traits not medical science.
Charm

Margaret

thanks for validating my point about this being a guy thing
charm