PEG Tube

Working out with PEG tube
Speaking only from my experience, you should be able to continue some of your workouts with the PEG tube. Mine extended about 12 inches out of my stomach and I used an Ace bandage wrap to keep it secure to my body when I wasn't using it. That allowed me to jog with no problem, and to do some limited range stretching/movement in that area. You will need to avoid any exercise that puts a large amount of strain on your upper abdominal muscles, or risks stretching the tube out of place. Of course, you should get your tube doc's opinion and OK on this, since your situation could be different from mine.

Mike

Welcome..
Welcome to the forum, great folks here and tons of experience....

I also was STGIII SCC Tonsils (right) and a lymphnode (also right)..HPV+. That was Dx on January 2, 2009. Tonsils removeed, nine weeks of chemo, then and additional seven weeks of concurrent chemo and rads.

As Kent said, current treatment and recovery is very successful these days.

Here is the SuperThread, it has tons of info comoiled by many here, put to a thread by Dawn (Sweetblood22);

SuperThread

There is an entire section of links on the PEG... I think Dawn has even put links to photos of hers when she had it.

Best,
John

Skiffin16 said:

Education...
It's an education for sure...one with a fast learning curve at that....we have all been there.

Best,
John

peg & port
I got my peg and port the same day by two different doctors. Don't remember having any pain afterwards so recovery time was nil. Worked out with it until second round of chemo.
As I stated on another thread, be sure to pump the liquids in slowly. I always had severe heart burn and vomited once or twice until I slowed the intake process down. The only issue was a little redness and tenderness around the hole after 5 or 6 weeks.
As said before, you will get through this, you will!
Welcome and best wishes.

mls351w said:

peg & port
I got my peg and port the same day by two different doctors. Don't remember having any pain afterwards so recovery time was nil. Worked out with it until second round of chemo.
As I stated on another thread, be sure to pump the liquids in slowly. I always had severe heart burn and vomited once or twice until I slowed the intake process down. The only issue was a little redness and tenderness around the hole after 5 or 6 weeks.
As said before, you will get through this, you will!
Welcome and best wishes.

One hour to go..
...and I'll have my PEG in. Only dread I'm having is coming from the "bad luck kid" scenerio I'm just getting past now...I'm still in the hospital from the port placement fiasco. However, I've been off the pump that inflates my lung for 13 hours with many walks up and down the halls..and tho my lung is still deflated, I'm asymptomatic..no more breathlessness, or pain when I do something...so may be going home with a portable thing to keep the hole sealed.

Yes...HOME! where I belong...with my doggie and my man. I'm excited.

p

Mikemetz said:

Don't be shy
Don't be shy about asking questions as you move along with your treatments, recovery...and survival! Many treatment plans for HNC are remarkably similar, so there is probably nothing you'll face that one or more of us here hasn't experienced--and would be glad to share with you. This is a great resource in so many ways.

Mike

phrannie status ?
Phrannie, did you get your feeding tube in today ? How did it go ? How do you feel ?
I've been thinking about you since your post this morning.

phrannie51 said:

Yes...tube is in...
no complications other than gawd awful charlie horses in my gut...enough so that I spent this one last night in the hospital to put them to rest. I slept from noon to midnight, but now I'm feeling a lot better. Poor hubby didn't know what to do for me, a deer in the headlights...he never has seen me acknowledge pain....and was scared to touch me, I think. Sister Vickie jumped in, and got me situated in bed...got me some drugs...and some food...and I slept for the rest of the day and night. Will be going home in the morning.

p

that sounds good--your own
that sounds good--your own bed at home is always the best. Thank God for Sister Vickie. Don't worry, your husband will quickly figure out what needs to be done as your caregiver.

Kent Cass said:

P51
Finally! Know this early part of your experience has not gone as planned- just bumps in the road. Do not see your Port Surgeon as having any legit excuse for the lung thing, which is to say it likely/logically could have been avoided.

Dawn/Sweet used a wrap around her entire upper-body to hold the PEG against her chest. I used paper tape. And 2x2 gauze, though most prefer 3x3 that you custom cut to fit under the flap and against your skin- something that should be done daily, along with soap and water washing of the area. And would advise having your hubby get a bottle of coca-cola and put in the fridge- for use if you have a blockage of the PEG. Likely won't happen once/if you start regular use, but Coke is the stuff to clear the block. Jevity is what most prescribe, due to the fiber content, but there are also recipes out there. And flush with some water on a regular basis.

Top of your PEG a flexible clear plastic-like? Be a little careful in unplugging it, as that can tear. Took a long time for mine to, but did, so support the plastic area when you pull to open the tube up. There are different varieties. Mine type was first used for soldiers who got a tummy full of buckshot in the gut back in the Civil War, I tell people, as it seemed a bit 19th Century. But, oh, what a blessing it was. Feel real good about it, Phrannie- you got your insurance for the all-important Nutrition avenue already in place, so you're covered. Now, lets get this thing started to get old C out of you, because the year of 2025 is just up around the bend for you.

Believe

kcass

Kent...This will be another one of your posts
that I will print out just like my list of questions to the Rad-onc...I want to have feeding tube instructions easily accessable. I guess the hospital will also be sending a Home Health Nurse out to show me how it works, but have no clue when that will happen. I'll have to investigate it a little when I get home.

I'm just ready to blow this joint. Looks like chemo and rads will start this coming Monday, so only a week late getting started, not such a bad delay (I certainly have waiting lots of weeks on other people's stuff). I've got all my stuff packed, and just need to get dressed, and hubby is on his way to pick me up.

The lung prick probably could have been avoided, it's hard to say what all took place...I do know that this has been pretty traumatic for the surgeon, and tho I'll probably not need her services again, we will be fiends for a long time. She spent hours with me, keeping in touch with me, bringing me things I might need at the hospital, totally unrelated to medicine...girlie things...I even met her children...LOL

So yes..we're back on the road now...and I do BELIEVE that I'm on the way to a long healthy life.

So everybody....I'll be seeing y'all from home next post!!

p

phrannie51 said:

Kent...This will be another one of your posts
that I will print out just like my list of questions to the Rad-onc...I want to have feeding tube instructions easily accessable. I guess the hospital will also be sending a Home Health Nurse out to show me how it works, but have no clue when that will happen. I'll have to investigate it a little when I get home.

I'm just ready to blow this joint. Looks like chemo and rads will start this coming Monday, so only a week late getting started, not such a bad delay (I certainly have waiting lots of weeks on other people's stuff). I've got all my stuff packed, and just need to get dressed, and hubby is on his way to pick me up.

The lung prick probably could have been avoided, it's hard to say what all took place...I do know that this has been pretty traumatic for the surgeon, and tho I'll probably not need her services again, we will be fiends for a long time. She spent hours with me, keeping in touch with me, bringing me things I might need at the hospital, totally unrelated to medicine...girlie things...I even met her children...LOL

So yes..we're back on the road now...and I do BELIEVE that I'm on the way to a long healthy life.

So everybody....I'll be seeing y'all from home next post!!

p

Instructions
I think it must be a thing hospitals do everywhere. I had my tube inserted, sent to a room to wake up and then sent home. No syringe, no instructions, no nothing. That night I found I had pneumonia and had to go back to the hospital for seven days. While there I was shown how to feed with the syringe and to flush it out with water afterward. I later went to a gastro md and had him explain the care and warnings to watch out for. I too was one who bandaged up the area (there is a 4x4 pad called a "drain sponge" that is already split and ready to place around the tube (I bought a case of them on ebay. Every day, went through tons of paper tape (Johnson brand sucked - I liked the 3M) and pulled every hair I had from my stomach area with the referenced 3M tape. I cleaned it with alcohol or peroxide and usually added some antibiotic cream as well. Now something I need to clear up before I proceed, this was all done 13 years post treatment so my body was not as messed up as it would have been before/during treatment. However now I simply let my tube hang loose (flop in the breeze as my wife says) do not tape it up unless my clothes dictate it, haven't needed the drain sponges and basically just leave it alone other than when eating. I always wear a snug t-shirt and clean the area at least twice a day and have only had three times when the tube cover snagged on my clothes and gave me that warm wet feeling..... I will recommend that if your tube has a clamp to pinch off the tube then don't pinch it off in the same place every time because that can and will cause the tube to wear out in that one spot and start to leak.

I will say my tube is my best friend and my worst enemy. It keeps me alive but is also a constant reminder.

Denny

PS Yes you can pour a beer down the tube but it won't clean it out but after a few you won't care :>)

Greend said:

Instructions
I think it must be a thing hospitals do everywhere. I had my tube inserted, sent to a room to wake up and then sent home. No syringe, no instructions, no nothing. That night I found I had pneumonia and had to go back to the hospital for seven days. While there I was shown how to feed with the syringe and to flush it out with water afterward. I later went to a gastro md and had him explain the care and warnings to watch out for. I too was one who bandaged up the area (there is a 4x4 pad called a "drain sponge" that is already split and ready to place around the tube (I bought a case of them on ebay. Every day, went through tons of paper tape (Johnson brand sucked - I liked the 3M) and pulled every hair I had from my stomach area with the referenced 3M tape. I cleaned it with alcohol or peroxide and usually added some antibiotic cream as well. Now something I need to clear up before I proceed, this was all done 13 years post treatment so my body was not as messed up as it would have been before/during treatment. However now I simply let my tube hang loose (flop in the breeze as my wife says) do not tape it up unless my clothes dictate it, haven't needed the drain sponges and basically just leave it alone other than when eating. I always wear a snug t-shirt and clean the area at least twice a day and have only had three times when the tube cover snagged on my clothes and gave me that warm wet feeling..... I will recommend that if your tube has a clamp to pinch off the tube then don't pinch it off in the same place every time because that can and will cause the tube to wear out in that one spot and start to leak.

I will say my tube is my best friend and my worst enemy. It keeps me alive but is also a constant reminder.

Denny

PS Yes you can pour a beer down the tube but it won't clean it out but after a few you won't care :>)

OH NO I DID A DOUBLE POST
:>(