Shelby

I was one of the most ardent warriors in the PEG wars denouncing everyone who used a PEG were just not tough alpha males like myself. I pointed out the Michael Douglas never used a PEG. That was just an overreaction to the Pegophile bias on the forum. As Christine noted, we toned it down.

The fact is the doctors are divided on this. My RO and MO both said that their patients did fine without a PEG. I did and so did the cohort of about 30 of us getting radiation. None of us were dehyrdated or needed IVs. Meanwhile, Plenty of the pegsters ended up getting IVs and dehyrdation anyway (the formula made them vomit and nauseous) and lost just as much weight. When I posted links to statements from doctors at conventions and interviews about their observations on PEG dependency and swallowing complications, everyone went wild.
I used to get upset about it until I realized that posters were just echoing their doctor's opinions. Especially in Europe and Scandnavian countries, the medical opinion is that if you do not have a PEG, you continue to constantly adjust your swallowing so once TX is done, you bounce back much faster in regaining full swallowing ability.
That's why shortly after TX, I was eating real food and most Pegsters keep using their tube for three months or more.
They have to relearn how to swallow enough to get nutrition.
At the end, I did switch to drinking Ensure Plus, all liquid, but that's standard.
That was my biggest challenge when I first joined OCF, whether to stay in a forum that everyone used charged words like: the right thing, etc as though it was wrong not to get a PEG. But I'm a fighter and Once I stood up for the equally valid and opposing medical view (I am at a CCC) that it is just as good if not better to go without a PEG, then other OCF posters started posting that they do had also done it without a PEG. Prior to that, they were apologetic since the forum was scathing in denouncing you as irresponsible, silly, risking your life. As you can see from the posts, all of that is still there but not as explicit anymore.
As someone who did full TXs without a PEG and then due a recurrence and surgery needed a G tube I have a unique view. My opinion is that if you do not feel very strongly about getting the PEG either way, then why not? For me,I felt very strongly about not getting a PEG. The possibility of delaying swallowing fully was too risky. In hindsight, it was a great choice since shortly after TX, I did a victory tour of Italy and traveled thru the Southwest, eating up a storm . So when my cancer did come back, I had not lost any of those culinary times still using a PEG months after TX like most do.
Make no mistake, it is very hard to do without a PEG, unless you have a strong motivation. I'm also stubborn and received a deep psychological satisfaction from not letting the cancer force me to get a PEG (the surgery the second time did though)
Last but not least, the boogeyman that if you wait too long, it is harder to do or can;t be done only applies to the technical PEG (using an endoscope down your throat to light up the stomach and then inserting it). I know for a fact that you can get a G tube - same as a PEG, but inserted via 15 minute surgery by Interventional Radiology with a fluroscope so nothing goes down your poor throat. Most posters are unaware of this alternative procedure and technically they are correct since the E is missing so as my signature line show, G-tube, not a PEG.
Whew, that's long but it's important to know the other factual side so you can make your own decision.
Charm