PEG for LIFE

Hondo

 

I was just wondering if there were any others here who will have to keep a PEG tube in for life. I am right at 15 months now with my first PEG tube and it’s due to be changed next month. It has been a lifesaver to me but it has its times of just getting in the way and I want to just pull it out but then think, how will I eat. I found a new blender called a Nutr,Bullet that allows me to travel again because it is small enough to fit in my carry on and go with me anywhere. The thing I like the most about it is that I can put anything in it and make instant PEG food. I do notice that people stare at me or look at me through the corner of there eyes while eating but never say anything. Oh well I just keep doing what I am doing and eat my meal then go on my little way. I do have a question to ask, has anyone giving a name to there PEG tube. I call my PEG tube alien, because when it is hungry it starts to produce gas pockets that come out of the side of the tube and hurt really bad at times. I was in the kitchen one morning while my wife was making something to eat and my PEG got hunger and started with the gas. I slap it and said shut up alien your food is on its way; well my wife looked at me a said what. Then I told her I call my PEG tube alien because it feels like an alien eating my belly trying to come out when it is hungry, well she hit the floor laughing. Take care everyone and for those of you who have an alien or what ever you call it God bless.

 

Tim Hondo

Noellesmom

eat away

whenever and wherever, Tim. 

Jim had his PEG temporarily but I don't think he would hesitate to have it put in again, should the need arise.

 

Ladylacy

PEG tube

First time around my husband had his PEG tube for a year with no problems.  Now he will have it until the end of time.  He had it reinserted May 2012 when he started another round of radiation and chemo.  We were told in February that his cancer has reoccurred and spread and that his esophagus was very narrow and dilations don't help.  He is unable to swallow much of anything maybe a cup of coffee in the morning.  I have seen the machine you are talking about but we are scared to try anything other than the Nutren 1.5 he is on because this time the PEG tube is smaller than the first PEG tube he had.  Again he has had no trouble with the PEG tube.  And I don't think he has named it. 

Best wishes -- Sharon

debbiejeanne

tim, a few here have named

tim, a few here have named thier tube...lol.  glad u r able 2 travel again, that gives u something 2 look forward 2.  u r the first case i've heard of the peg tube making noises.  the rest of us just have to guess when our bellies get hungary...lol.

dj

sin9775

PEG For Life

Hi Hondo.

My brother has a PEG and he named it Seymour.  That name is from "The Little Shop of Horrors".  He says that Seymour is his friend. 

Your post has brought up an interesting issue.  Do you think you will need your PEG FOREVER???  Just how frequently do people have the PEG in for so long after treatment?  I am quite certain my brother thinks he will get his removed a month or two after treatment ends.  Should I prepare him for a lifetime with Seymour?  I wonder if his Doctors told him there would be a possibility that he would never be able to get the tube removed, if he still would have had it installed prior to treatments. Maybe having that backup plan was not such a good idea after all. 

 Feed me! Feed me! Feed me!
Feed me, Seymour
Feed me all night long
That's right, boy
You can do it
Feed me, Seymour
Feed me all night long
'Cause if you feed me, Seymour
I can grow up big and strong

~Shawn~

wolfen

sin9775 said:

PEG For Life

Hi Hondo.

My brother has a PEG and he named it Seymour.  That name is from "The Little Shop of Horrors".  He says that Seymour is his friend. 

Your post has brought up an interesting issue.  Do you think you will need your PEG FOREVER???  Just how frequently do people have the PEG in for so long after treatment?  I am quite certain my brother thinks he will get his removed a month or two after treatment ends.  Should I prepare him for a lifetime with Seymour?  I wonder if his Doctors told him there would be a possibility that he would never be able to get the tube removed, if he still would have had it installed prior to treatments. Maybe having that backup plan was not such a good idea after all. 

 Feed me! Feed me! Feed me!
Feed me, Seymour
Feed me all night long
That's right, boy
You can do it
Feed me, Seymour
Feed me all night long
'Cause if you feed me, Seymour
I can grow up big and strong

~Shawn~

Thanks For The Funny Story, Hondo

Although, I'm sure at times that it is not funny to you. My hubby resisted the PEG, but it did prolong his life. He very rarely complained about anything(he had me to do that for him, LOL). He just accepted whatever was necessary for his survival. I don't think he was ever on a first name basis with it.

Because I am a member of the colon forum also, I have several friends who are the other "end" of the spectrum having a permanent ilieostomy or colostomy. They too, have accepted whatever it takes to survive and I've heard a few of them give names to their "special friend", just maybe not as printable as "alien".

Whatever it takes, my friend as I wish you well.

Luv,

Wolfen

debbiejeanne

sin9775 said:

PEG For Life

Hi Hondo.

My brother has a PEG and he named it Seymour.  That name is from "The Little Shop of Horrors".  He says that Seymour is his friend. 

Your post has brought up an interesting issue.  Do you think you will need your PEG FOREVER???  Just how frequently do people have the PEG in for so long after treatment?  I am quite certain my brother thinks he will get his removed a month or two after treatment ends.  Should I prepare him for a lifetime with Seymour?  I wonder if his Doctors told him there would be a possibility that he would never be able to get the tube removed, if he still would have had it installed prior to treatments. Maybe having that backup plan was not such a good idea after all. 

 Feed me! Feed me! Feed me!
Feed me, Seymour
Feed me all night long
That's right, boy
You can do it
Feed me, Seymour
Feed me all night long
'Cause if you feed me, Seymour
I can grow up big and strong

~Shawn~

shawn, very few people need

shawn, very few people need the tube for life.  it is usually people who's cancer came back and they did radiation a second time.  radiation does damage 2 the throat and sometimes people are unable 2 use thier throats.  i'm not a pro on this, i'm just going by the few on here who have one for life.  i'm sure someone who has it 4 life will give u a good answer.  ur brother will most likely get rid of his a month or 2 after treatments.  it's nice that u look out 4 ur brother.

dj

backachedp

Noellesmom said:

eat away

whenever and wherever, Tim. 

Jim had his PEG temporarily but I don't think he would hesitate to have it put in again, should the need arise.

 

Peg/Feeding Tube

I am not sure what the difference between a Peg and Feeding Tube is but I ure wish my Husband would get his Feeding Tube back....He cannot eat or drink w/o Aspirating he has a Swallow Dr Appt Wednesday and PFT Test Pulmonary Function Test he is going to ask for a Referral to Mayo here in MN to see if there is something they can do to help him he was Diagnosed Sept 29 2009 lost his swallow right away and never got it back.  He made them take the Tube out WAY too soon, but he insited that he could eat..NOT....I am hopeful he can get int Rochester and maybe they can help him somehow as he refuses the Feeding Tube PERIOD.  Yesterday he sucked on a small piece of onion for a few minutes and he said it tasted so good..but he had to spit it out but he can suck on stuff it just does not go down and his Mucus since Surgery in May does not come up....I just feel so bad for him but he rarely complains he is happy to be alive and so far Cancer Free Scan comming up the 24th I believe then the stress and anxiety start up agin...I so wish he could put on some weight...thankfully we have 2 wonderful Son's who do the yard work and most everything to help us.  They know Dad is not strong enough to do most anything anymore...I can't do yardwork due to my back issues and neck isuues..this is NOT how I thought we would be I am 51 he is 57 these should be the years we enjoy and we do enjoy each other, just not able to Travel or do much of anything but we did go to our Cabon for the 4th of July with both boys and thier Wives and Grandson thankfully we were not alone as we had a blow out on out Trailer....our youngest was right ahead of us and saw that we pulled over and he changed the Tire as Bob would not have been able to do it and ur Son got cut real bad lot's of traffic and it's quite scarry changing a Tire on the side of an Interstate.

CivilMatt

enjoy life

Tim,

Nice to see you and to see your PEG on your expressions page.  I see they chose the center location for yours, looks good.  I wonder why you were drilled on center and I was off to the side?

I went through two PEGs.  The first one hurt so bad I called it a “no good SOB”, the second one was installed during the middle of treatments and was a breeze to use.  While I did make friends with Mr. PEG,  I never got around to naming it.  You see, I wasn’t a very sophisticated cancer patient, I was  pretty much the run-of-the mill, scared to death, hurry up and get this over kind of guy.

I did have some good times with the PEG hanging out of my shirt or letting me know I reclined too far in my easy chair.  After I had it popped I sold it on Ebay to some old “moon shiner”.(lol)

Truthfully yours,

Matt

donfoo

Attitude

Love the attitude! If you are in it for the long haul may as well adapt as fast as possible and it appears you have. Especially, the stares and such. Not your problem, you just going about life "eating" just like everyone else. I am of the temperment that if I was feeling a bit off and someone just could not knock off the staring, I would get up and walk over and let the dangling alien burp once or twice! Make it informative, tell them what it is and what it does and why you got one and thank god you don't. Lots of times people are just curious and ignorant.

Hondo

backachedp said:

Peg/Feeding Tube

I am not sure what the difference between a Peg and Feeding Tube is but I ure wish my Husband would get his Feeding Tube back....He cannot eat or drink w/o Aspirating he has a Swallow Dr Appt Wednesday and PFT Test Pulmonary Function Test he is going to ask for a Referral to Mayo here in MN to see if there is something they can do to help him he was Diagnosed Sept 29 2009 lost his swallow right away and never got it back.  He made them take the Tube out WAY too soon, but he insited that he could eat..NOT....I am hopeful he can get int Rochester and maybe they can help him somehow as he refuses the Feeding Tube PERIOD.  Yesterday he sucked on a small piece of onion for a few minutes and he said it tasted so good..but he had to spit it out but he can suck on stuff it just does not go down and his Mucus since Surgery in May does not come up....I just feel so bad for him but he rarely complains he is happy to be alive and so far Cancer Free Scan comming up the 24th I believe then the stress and anxiety start up agin...I so wish he could put on some weight...thankfully we have 2 wonderful Son's who do the yard work and most everything to help us.  They know Dad is not strong enough to do most anything anymore...I can't do yardwork due to my back issues and neck isuues..this is NOT how I thought we would be I am 51 he is 57 these should be the years we enjoy and we do enjoy each other, just not able to Travel or do much of anything but we did go to our Cabon for the 4th of July with both boys and thier Wives and Grandson thankfully we were not alone as we had a blow out on out Trailer....our youngest was right ahead of us and saw that we pulled over and he changed the Tire as Bob would not have been able to do it and ur Son got cut real bad lot's of traffic and it's quite scarry changing a Tire on the side of an Interstate.

Hi Backach

 

Sorry about the problem with the blowout but was great that your Son was right there for you to get it changed. I know what Bob is feeling as I been there myself with not wanting to have a PEG or Feeding tube as they call them. But after I came down with pneumonia it changed my mind. The pain in the lungs every time I would aspirate was too much and I knew I needed to do something. This is the way I looked at it, I wanted to be here to see and be a part of my grandchildren’s life and the only way that was going to happen is for me to do something. So I got pegged and it has been a blessing as my strength and feeling good again is back. I also need a pain pill or so to help with side effects but that is life and I do what I need to do to keep going. I am blessed in that I still work full time and can still travel with my Nutr,Bullet in my bag. I too am 57 and my wife is 60 we too had planned to retire early and enjoy life but things changed so we had to change with it the best we could. I pray that Bob will see the benefit in getting the PEG tube back in, and he can then do both eat and peg..

 

God Bless and I will keep you both in my prayers

Tim Hondo

Ladylacy

Shawn

My husband had his first PEG tube for about 1 year.  It was removed 6 weeks after his laryngectomy and he was able to eat again very slowly and with much water and several dilations.  The second PEG tube was inserted before the start of his second round of radiation and it has been a year and he still has it and will for the rest of his time.  Radiation damage, very narrow esophagus and reoccurrence of cancer that has spread.

Sharon

Hondo

Ladylacy said:

PEG tube

First time around my husband had his PEG tube for a year with no problems.  Now he will have it until the end of time.  He had it reinserted May 2012 when he started another round of radiation and chemo.  We were told in February that his cancer has reoccurred and spread and that his esophagus was very narrow and dilations don't help.  He is unable to swallow much of anything maybe a cup of coffee in the morning.  I have seen the machine you are talking about but we are scared to try anything other than the Nutren 1.5 he is on because this time the PEG tube is smaller than the first PEG tube he had.  Again he has had no trouble with the PEG tube.  And I don't think he has named it. 

Best wishes -- Sharon

Hi Sharon

 

You are correct; you need to be carful in feeding if he does not have the right size fret in his PEG tube. My tube is a 24 fret and that makes it easy for me to put just about anything through it, I also use dynarex Syringes as I found they work best . I suggest when he goes to get it changed aging tell the doctor you want a PEG Tube with a larger fret. I keep a spare PEG tube with me in case I am out of the US and something happens like; my tube pulls out. It is a Mic-key tube but only a 20 fret so only a temporary thing. Take care and wish you both the best

 

Tim Hondo

Hondo

debbiejeanne said:

tim, a few here have named

tim, a few here have named thier tube...lol.  glad u r able 2 travel again, that gives u something 2 look forward 2.  u r the first case i've heard of the peg tube making noises.  the rest of us just have to guess when our bellies get hungary...lol.

dj

Hi Debbie

You would know I got the bad one, my wife at night says that sometime she can hear the gas coming out of it; we told the doctor but he say its normal. I am due to get it replaced soon so hope the next one works better.

 

Take care and God bless you both

Tim

Hondo

Hi Shawn

 

Yes I totally lost the ability to sallow without aspiration, so that means I will have one for life. Great name for a PEG Seymour, I think I will make a song for alien.

 

Wishing you the best

Tim Hondo

Hondo

wolfen said:

Thanks For The Funny Story, Hondo

Although, I'm sure at times that it is not funny to you. My hubby resisted the PEG, but it did prolong his life. He very rarely complained about anything(he had me to do that for him, LOL). He just accepted whatever was necessary for his survival. I don't think he was ever on a first name basis with it.

Because I am a member of the colon forum also, I have several friends who are the other "end" of the spectrum having a permanent ilieostomy or colostomy. They too, have accepted whatever it takes to survive and I've heard a few of them give names to their "special friend", just maybe not as printable as "alien".

Whatever it takes, my friend as I wish you well.

Luv,

Wolfen

Hi wolfen

 

Yes I remember the struggle you both had doing all you can to keep your husband alive. I try to keep a positive attitude all the time for my Wife and children as they are also going through a lot having me sick. There is nothing in this world more wonderful then a loving caretaker; I would not be hear with out the assistance of my wife caretaker. God bless you for all you did and continue to do as a caretaker.

 

Tim Hondo

Hondo

CivilMatt said:

enjoy life

Tim,

Nice to see you and to see your PEG on your expressions page.  I see they chose the center location for yours, looks good.  I wonder why you were drilled on center and I was off to the side?

I went through two PEGs.  The first one hurt so bad I called it a “no good SOB”, the second one was installed during the middle of treatments and was a breeze to use.  While I did make friends with Mr. PEG,  I never got around to naming it.  You see, I wasn’t a very sophisticated cancer patient, I was  pretty much the run-of-the mill, scared to death, hurry up and get this over kind of guy.

I did have some good times with the PEG hanging out of my shirt or letting me know I reclined too far in my easy chair.  After I had it popped I sold it on Ebay to some old “moon shiner”.(lol)

Truthfully yours,

Matt

Hi Matt

 

I am not sure why the doc put my PEG in the middle as it does get in the way a lot, but I did not know it could go any where else. Believe me I also know about the run of mill scared to death hurry up and get it out syndrome. I was very fortunate to have a lot of people praying for me, and the power of prayer is what I believe helped. When I first got the PEG it was a pain because I had to almost undress just to eat, now all my under shirts have a little hold cut in them for the PEG tube and now I can just reach in and pull it out. Thanks

 

Take care

Tim Hondo

Hondo

donfoo said:

Attitude

Love the attitude! If you are in it for the long haul may as well adapt as fast as possible and it appears you have. Especially, the stares and such. Not your problem, you just going about life "eating" just like everyone else. I am of the temperment that if I was feeling a bit off and someone just could not knock off the staring, I would get up and walk over and let the dangling alien burp once or twice! Make it informative, tell them what it is and what it does and why you got one and thank god you don't. Lots of times people are just curious and ignorant.

Hi Donfoo

 

My wife and I stopped one time in Houston to eat and the waiter came over and just my wife ordered. He seen my tote bag and every time he passed he kept looking to see what I was doing. When he seen the tube come out and me pumping we could see him trying to get closer with out us knowing; My wife and I just laugh. I was eating one time and had a little kid come over and stood right by me and asked what I was doing. So I told him and boy he went over and told his mother everything about that man over there who could eat and talking at the same time. We need to sometime just be as children are.

 

Take care

Hondo

Hondo

Noellesmom said:

eat away

whenever and wherever, Tim. 

Jim had his PEG temporarily but I don't think he would hesitate to have it put in again, should the need arise.

 

Hi Mom

 

I said never again about radiation but when the time came I did what I had to do. All in all the PEG has a lot of advantage over eating through the mouth, the only thing missing is being able to taste the food.

 

Wishing you all the best

Tim Hondo

luv4lacrosse

Larry

I named my PEG tube Larry! 

Skiffin16

Shells Restaurant & Seafood Pasta...

Man Tim...., you mean no more seafood pasta at Shells with me.... Dang, sorry to hear that, but at least your still alive and kickin it...

As you know Denny Greene is on a PEG.... I haven't heard hide nor hair... I think I tried reaching him on FaceBook as well...

I'll give that a check....

 

WOW..., sorry that I did that Tim...

Apparently reading his wife's FB page Denny passed away January 5th of this year.... Another great guy..., he was a retired Major in the Air Force if memory serves me...

Keep the fight brother...

John