First Feeding Tube Experience

jcortney

I did not expect it to be as simple as it was.  The folks at the Rad center were adament that they wanted me to start at least one feeding a day so that 1) I would maintain/gain some weight and 2) know what to expect when I need it.  It turns out it's an extremely easy process, perhaps too easy as eating becomes harder and human nature is to take the easy way out.

The good news for me is I hate breakfast.  Always have.  Now, 30 minutes watching the morning news before leaving for Rads and I'm good to go.  Sometimes you just gotta love technology.

 

Joe Cortney

Dallas, TX

 

 

CivilMatt

Joe and the PEG

Joe,

 

Glad to hear you’ve made friends quickly.  I use to plug in and relax for a 2-can Jevity infusion each afternoon. For me it was hang it high and step on the gas.

 

As easy as the PEG is I always managed to drink one meal a day and swallowed lots of water and a glass of prune juice.  I may have spent as much time in the bathroom as my recliner but it was worth it.

 

Keep up the good attitude and keep moving forward.

 

Best,

 

Matt

D Lewis

I second that

PEG worked great for me.  It's horrible to contemplate, beforehand, but a good thing to have, in retrospect.  It will be even better, as a distant memory. And you'll have that nifty scar; the one you can tell folks is a bullet hole...

Deb

blackswampboy

the tube was a godsend

keep those calories flowing!

just don't forget to close it up before you get up and walk across the room. oops. ;-)

donfoo

Did you try without it first?

Hi Joe,

It seems like you started treatment recently so I was wondering if you tried to pass food without the tube first or did you decide right up front to go that route to minimze any weight loss?

jcortney

donfoo said:

Did you try without it first?

Hi Joe,

It seems like you started treatment recently so I was wondering if you tried to pass food without the tube first or did you decide right up front to go that route to minimze any weight loss?

Not quite sure what you are asking

So, I'll go with my best shot. i had nine weeks of induction chemo and am now on my 7th treatment of 60gy Rads w/chemo. I can eat most foods now (though my taste buds are going south rapidly) except for most meats and dry foods. My throat is a bit sore so until I sorted that out I lost some weight and they wanted lot make sure I didn't loose any more. 

 

Kind of a long winded answer for "yes I still eat normally the things I can" but I can see that the odds of maintaining my body weight without the tube would be very hard, if not impossible, once the serious side effects arrive ( or not, one can hope). 

Joe Cortney

Dallas, Tx

 

cureitall66

Got ours mid way...

He wishes he would have gotten it in the beginning but wanted to try it without it. But at about week 3-4 of tx it was getting more and more difficult to continue to eat and drink. He was not a happy camper that he had to deal with this PEG at first, but found it to be so simple to use that his feelings quickly changed. It's been a lifesaver. We are 4 weeks out of tx and still use it 100% of the time until his throat heals more  He just started his swallowing of water just a few weeks ago...hoping to move up to some soft foods this coming week. 

You'll be so glad you got this when you did! Glad to hear it's going well for you.

 

~C

phrannie51

Tho I got mine before treatement ever

started, I was scared of the darn thing.  I had NO clue how to go about using it....so (like you)....I had a home health nurse come and show me how to use it, and did a few practice runs even tho I could still eat just fine.  I managed to finish rads still eating pretty normal...however once I was doing the 5FU, everything went to hell in a handbasket, and my tube became my lifeline since even water was painful to put in my mouth.  I had to use my tube for 3 weeks out of every 4 during the last of the chemo's. 

Still....at the end the darn thing still kind of creeped me out....LOL.  I could hardly wait for the 4th week to arrive and I could start drinking my Boosts again.....and was completely motivated at the end of treatment to eat by mouth, and get rid of it.

p

donfoo

phrannie51 said:

Tho I got mine before treatement ever

started, I was scared of the darn thing.  I had NO clue how to go about using it....so (like you)....I had a home health nurse come and show me how to use it, and did a few practice runs even tho I could still eat just fine.  I managed to finish rads still eating pretty normal...however once I was doing the 5FU, everything went to hell in a handbasket, and my tube became my lifeline since even water was painful to put in my mouth.  I had to use my tube for 3 weeks out of every 4 during the last of the chemo's. 

Still....at the end the darn thing still kind of creeped me out....LOL.  I could hardly wait for the 4th week to arrive and I could start drinking my Boosts again.....and was completely motivated at the end of treatment to eat by mouth, and get rid of it.

p

Seems like PEG is almost a given

Well, I was hoping more like John got by without the PEG but it seems it is pretty common and actually not such a bad thing once you get used to the idea and it actually serves the vital function of keeping the body properly nurished.

Don

hwt

donfoo said:

Seems like PEG is almost a given

Well, I was hoping more like John got by without the PEG but it seems it is pretty common and actually not such a bad thing once you get used to the idea and it actually serves the vital function of keeping the body properly nurished.

Don

No regrets

I had a g-tube after my surgery and through tx. When you've had a feeding tube in your nose 2 weeks in the hospital, you are actually thrilled to have it somewhere else. Glad I didn't wait til I really needed it. I don't think I was ever totally reliant on it but it was kind of peaceful getting nutrients that way. I finished tx in May and the ONC wanted to leave it in 12 weeks until my first scan, just in case. The doc that puts  them in at the hospital said he saw no reason to leave it in because if I needed it again, he could put it back with minimal risk. I had him yank it as it was standing between me, a good shower and swimming. Glad I made that choice. Funny how 7 months out, all I recall is the convenience of it and that I was glad I had it. I guess it would make me sound weird if I said I sometimes miss it. 

jcortney

hwt said:

No regrets

I had a g-tube after my surgery and through tx. When you've had a feeding tube in your nose 2 weeks in the hospital, you are actually thrilled to have it somewhere else. Glad I didn't wait til I really needed it. I don't think I was ever totally reliant on it but it was kind of peaceful getting nutrients that way. I finished tx in May and the ONC wanted to leave it in 12 weeks until my first scan, just in case. The doc that puts  them in at the hospital said he saw no reason to leave it in because if I needed it again, he could put it back with minimal risk. I had him yank it as it was standing between me, a good shower and swimming. Glad I made that choice. Funny how 7 months out, all I recall is the convenience of it and that I was glad I had it. I guess it would make me sound weird if I said I sometimes miss it. 

Truth be told, I hated the idea of getting the PEG

Everything about it creeped me out.  Now, after two days of using it (just one meal a day) to get me over the 2K calories the dietician wants me to have I'm really glad it's done.  It's one less thing to worry about but, believe me, it will be gone the first day that it is possible for it to be gone (along with the chemo port).  It's a constant reminder (beside my bald head) of this rude interruption of my life.

Please everyone, be safe and smart over the New Year Eve celebrations.

 

Joe Cortney

Dallas, TX

Kent Cass

jcortney said:

Truth be told, I hated the idea of getting the PEG

Everything about it creeped me out.  Now, after two days of using it (just one meal a day) to get me over the 2K calories the dietician wants me to have I'm really glad it's done.  It's one less thing to worry about but, believe me, it will be gone the first day that it is possible for it to be gone (along with the chemo port).  It's a constant reminder (beside my bald head) of this rude interruption of my life.

Please everyone, be safe and smart over the New Year Eve celebrations.

 

Joe Cortney

Dallas, TX

15 months w/PEG

JC

Got my G-tube a couple weeks before tx started, being told it was not optional with what they had planned for me. And, used exclusively from the end of week #1-#8, of tx, and slowly weened myself back to eating a couple weeks later. And, in my case- it was truly an essential Godsend. That said, I was pretty-much eating most anything I wanted by 4-months after the last rad, but kept my PEG for well over a year after I last used, just in case I had C come back on me. That is to say- you can even get used to it- I did. Yes, it takes getting used-to, but being able to bypass the problem areas of H&N C&R to get the necessary Nutrition needed to fight the best fight possible just makes sense, even if it's only as a supplement route. Just remember- need to keep the swallowing function going with frequent water sipping, at least, and wash the area daily and change dressings. Jevity 1.5 rules!

kcass