I am sooo happy today my dr agreed to let me have my tube out im doing a happy dance and let me tell you it's very hard to type and dance at the same time...i'm not a good multi tasker

sorry had to tell someone too happy to keep to myself

Debz

Well congrats Debz. The question is 'can you dance and eat at the same time?' Gotta work on that multi-tasking. Enjoy.

Take care,
Eileen

LMAO Eileen ooo thanks to you and all your recipe ideas i can eat and do everything, not putting my food down for no one...

i have a question my Dr has said they remove my tube while im awake they just pull it out, ok now first let me say i am NOT brave at all mrs wimpo here, so this freaked me out a bit so i wanted to ask anyone who has had a tube how did they do yours and did you have a stitch in the hole? my Dr said they leave it open to heal by itself....will i leake?

thanks for reading debz

debz,

Yes, you are awake...its a quick yank and its out. Bill's sounded like a champagne cork popping. He said he had a brief moment of pain and then it was over before he knew it. The hole looks icky for a few days but heals on its own. Bill was instructed to not eat or drink a lot for 2-3 hours and then he had no restrictions except to keep a gauze pad over the hole for a day or two.

You won't leak if you are careful for just a few hours. Congrats on this milestone.

Deb (without the z)

I had mine pulled just yesterday! Wow, it was a weird sensation... literally, he just grabbed it, said "Hold on," and YANK! out it came with this sloppy POP! sound, like opening a bottle of champagne. There was a sharp little pain for a few minutes and then things calmed down. Just have an ordinary gauze and tape bandage over the little slit. He says it'll heal in no time.

Buzz says to tell you that when his PEG was removed it didn't hurt at all; he hardly felt it - just one little 'tug' and it was over. I, of course, had insisted that he take an Ativan beforehand, just because I was afraid that it would hurt him!

Lois & Buzz in NC

Aww thanks for the replys i have decided to put it on hold for now i have to build myslef up for that one, i had a little melt down last night told my hubby im keeping it in LOL i know its nuts after everything we go through with treatment and all but i really am a wimp.

thanks for letting me know Debz

Debz
courage!! This is not a big deal at all compared to what you went through. Believe me, if you do not NEED it any longer you will feel a lot better when it is gone! It is over in seconds and yes the idea of just yanking it out is strange. If you are concerned take some pain killers beforehand. (you probably have some left over from the radiation treatments?)

M

The Dr pulled mine out and I had a burning sensation for about 15-30 seconds and it was over with. It was not as bad as I "thought" it would be. It was such a relief to have it out and the freedom of not having to mess with it anymore. It closed up on its own and was healed in about 10 days. I kept a bandage over it for that time.

Aww thanks so much your all so sweet...i have to be honest when my hubby finds out i didnt call he wont be a happy bunny...LOL i think im more worried because mine is so sore now its really red and hurts to clean it so i wound myself up thinking thats really gonna hurt when they pull that out.

Markus i do have tons of meds left from my treatment i think i have about 6 box's of patches that i keep looking at i wonder if i would be able to donate them to someone who doesnt have ins, i also have some of those pills they gave me before chemo i remember them saying not many people have coverage for them so i know there has to be someone who could use them...anyone know how i would find out about this? or does anyone need some.

thanks again Debz

Debz - unfortunately, you can't donate any controlled pharmaceuticals, which would include any pain pills or narcotics, valium, etc. Sone organizations will take other types of medication if they are individually wrapped in the original tamper proof packaging....

Debz:

Thats GREAT news about the PEG coming out!!!!! You must be doing excellent. Im a big chicken about my PEG too, so dont feel bad. I also have a port that can be removed at any time. I told my doctor leave the port in til its time for the PEG to come out. That way I will be knocked out and wont feel it. After going thru so much, I just cant face it being pulled out. When my PEG site was bothering me and started getting red, I would put antibiotic ointment around the site and cover it with gauze. That may help you to make yours feel better.

About the meds, if they are individually wrapped then ask your oncologist if they have anyone who needs them. Its really a shame to waste expensive medication when others must go without due to the costs. I forget which one, but my chemo nurse told me the one pill I took was a $100 pill. Good thing for insurance.

Congrats again!!!!!

I had some issues with irritation and redness around the peg too. Naturally, I wanted to keep it as clean as possible and disinfected the heck out of it. (Bad idea) When I finally regained my senses I just scraped off the gunk that accumulated around it and washed it once in a while and the irritation and redness went away.
Christine, the port is also not a big deal but it does take longer to take it out (maybe 15 minutes).

M



M

Hi guys thanks bunches again....

Me2 i never thought about the drugs that way "controlled substance" that would make me a dealer..LOL oh boy

Christine hi there, the patches are in their own little packets all sealed i think they are called fentinol or something like that, good knock out meds, those are the same little pills $100 each they are supposed to stop the nausia but didnt work for me, still i will ask at the clinic i went to maybe they can pass them on. thanks for making me feel better about the peg...hugs...

Markus i think your onto something i wash my peg everyday in the shower and then clean it off with this stuff hubby got for me and its so sore maybe too much washing.

well i just called my mother in law ask if hubby could move back with them...LOL...apprently he was at work (works at the same hospital i had my treatment) and he just happend to bump into the peg Dr (yeah right) of course when she called me i knew he had told on me...so looks like i have to suck it up and get it done.

Debz,
I was in Houston following Hurricane Katreina when I was due to have my tube out. The ENT I saw there told me she would normally take it out but because it had been put in by a surgeon she was going to send me to a surgeon for the removal. The surgeon pulled and pulled without success. He called the manufacturer of the device - he had pulled a small section out and read the manf info on the tube, just like on the side of a tire! After getting instructions he still could not get it out so he made an appointment for me to see a gastroenterologist. The gastroenterologist gave me a shot, took the tube in his fist, twisted his hand and yanked. Out it popped. much less pain than getting a tooth pulled with novocaine. It was weird get a shot in the belly but it worked. He said that the surgeon just was afraid to pull hard enough.
Don't be afraid. Get the thing out and you'll have more time for other things like eating from real dishes and having coffee in a nice big mug.

Debz:

Are you scheduled for the PEG removal yet? I was given the ok to have mine removed too. Im having it done along with my port at the same time. I will keep my fingers crossed for you. Please let me know how yours goes.

Hey all, well i did it yesterday, have to say though it hurt like hell good news is because my HR was 100 and change they gave me something to try to chill me out (my Dr was laughing my HR was fine untill she walked in the room...LOL) i slept all day on whatever they gave me, but it's all done and feels great to not have that constant pain or tube hanging around.

thank you all for the encouragement.

Tube free Debz

Great job Debz! Not having the tube is like a new freedom.

Hi Tom, thanks, and your right it really is, was the oddest thing this am to have a shower and not have to worry about it.

How are you doing? have you had a follow up Pet scan?, thats next on my list keep putting it off...LOL

Debz:

Congrats on getting rid of the PEG. You were very brave to have it out like that. Do you feel ok now? Are there any stiches?

Congratulations on getting the peg out! What a milestone! I bet it feels so much better without that thing dangling down from your stomach. I am happy for you! :-)

I've had mine in since April 07 (11 mos) and I want it out so badly! Do you have any recipes that you can share with me? Maybe it will help me to start eating better so that I can get my peg out too. I have only been eating soups and beans and drinking Ensure.

Debz,
The shower without a peg tube was the first great thing for me also. I also didn't have to sleep on my back anymore. It took about 10 days for the spot to heal up. I still drink the Carnation VHC drinks for the nutrition.

I finished my treatment Aug 3, 2007 and had my first PET scan on Nov 20th - three months after treatment which is standard operating procedure. From my first PET scan I had two uptakes, one on my tongue and the other in my neck. They ended up taking another biopsy on my tongue and it came back clear. I am scheduled for my 6 month PET scan on April 29th. The funny thing is that my ENT said he wasn't going to do any scans and just watch me clinically. My RO is the one that ordered the PET scan at my last visit in March. He wasn't concerned about anything, just felt it should be done. I have learned from my ENT and others on this forum that the PET scan is only part of the tools in evaluating. I can remember that JeffL had a few good postings on this. He told me not to get too worried about the first scan after treatment. Things may show up that are false positives. Check out some of JeffL's postings on this to ease your nerves. I felt the same way you do.

I am 7 months out from finishing treatment and feeling great. I am up to 3 miles running on my treadmill - until this ugly weather in Ohio gets warmer. I eat most of the foods I want. I even took my 12 year old daughter to an Avril Lavigne concert last night up in Cleveland. I am praying things keep heading in the right direction.

I seemed to have the most problem with skin irritation caused by the various types of tape I used to secure the tube. Every tape I used caused irritation to the skin and I could only move the thing around to so many different positions from one day to another. Getting the thing yanked out was a day to remember. The pain was nearly unbearable but only lasted a minute or so.

Bill D.

EVERYONE,

Since the subject matter is PEG tubes and Bill mentioned the tape irritation, I need to suggest to those that are still dealing with it that they purchase a couple of those 4 inch wide(6 inch even better if you can find it) ACE bandages with the velcro closer and use that to secure your tube. Bill found it to be very comfortable (make sure the velcro doesn't touch the skin.) Just wrap the ace around your abdomen and close..move the velcro where it is comfortable. It's easy to pull the tube out to feed and then tuck back. They are washable...and breathable..made life so much better than that awful tape that irritates and leaves residue (we tried both cloth and paper and they both left sores after a day or so.) DON'T BUY THE ONES THAT HAVE SELF STICK..THEY ARE AWFUL...GET THE SOFT/REGULAR BANDAGES!

Congrats to those that have "graduated" from the PEG...to those still dealing with it..try the ACE!

Deb

My father in law had a peg tube and it fell out three times in a 3 month period. I am new to this site and am hoping that some of you on this stream will see and respond.
Did you all have problems with your tube? My father-in-law was very active prior to his diagnosis and tried to remain active by golfing, doing yard work and exercising. He found the tube cumbersome and the tape irritated his skin.

Most tubes will fall out after about 10 mos anyway...that's what my doc told me. Mine did, so I went to the ER and had a new one put in. I've never heard of tubes falling out as many times as your Father-in-law's did though, and in such a short period of time too. What did his doctors say? Did they say it could have been from his activities?

I have had my current PEG for almost two years and no sign of it falling out. My doc has basically said I should try to keep it in for as long as I can. There are different kinds of PEGs that are anchored in the stomach slightly differently from what I understand. I ahve enver heard of one falling out three times in 3 months either.

Nelie

The time I specifically remember was when we went golfing one afternoon and he came back to our house. He was complaning about the discomfort around the tube area. He lifted up his shirt and it fell on the floor. So that time it was from the golfing. It fell out once while he was sleeping as well. Where you active while the tube was in?

I have been hiking, bowling, done some yoga and gone dancing. I have also done daily active stuff such as carrying heavy boxes during an office move, running up and down stairs, hauling brush around in the yard, trimming trees and hedges, planting and watering plants etc.

I don't play golf so I can't say how all that compares in ativity level, and I will say that I didn't do this kind of stuff until several weeks had passed after my present PEG tube was inserted (but not because I was worried about losing the PEG, it was because I had had a more serious surgery right after the PEG was put in and was feeling very weak and in pain from that) , so maybe there's a difference between me and your fatehr in law, but I wonder if in his case they put it in right or made the incision too large or something.

Nelie

Sounds like you are very active. Don't stop and best of luck.
thanks for the input.