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PEG for LIFE

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

 

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
Posts: 1272
Joined: Aug 2010

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.

 

backachedp
Posts: 124
Joined: Oct 2009

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.

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

 

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

sabriene
Posts: 27
Joined: Aug 2006

I just read what you have written concerning your spouse.  Basically, I have the same problem.  My last treatment was in 06 but never really got to where I could eat a whole lot for basically was all soft food with lots of gravy and waffles with syrup. I was like him just lucky to be alive for mind was bad stage 4.  Then in the last part of June started aspirating and all went down hill.  However, couldn't eat anything so had to make two choices.  Either the peg or stomach tube and I didn't like the last option so now back with the tube. My guess in his situation if he cannot swallow or eat items he may have to make a choice like I did.  Tell him it isn't so bad after getting use to it again.  I am very anxious to hear how it all plays out with his appointment for I just had a barium swallowing test a couple of weeks ago.  This was my second test and it still shows I am aspirating some but overall better than the first one.  So I approached the ENT about maybe having laser endoscopic to that area.  They are now doing this in some places in the United States.  The ENT called me last week and said no they felt I was not a canidate for this type of surgery.  I would like to hear what his doctor has to say about this type of surgery.  Oh, I sure hope it doesn't come that he need that feeding tube but if it does I learned something.  My surgeon got my health insurance company to pay part of the bill for the supplements food I now use in the tube and they deliver it to the house which is very nice.  What he has to watch very close now is not to get pneumonia.  By the way how are his teeth?  Will sure be glad to hear what they tell him is the best way to go with all this now. Roger

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

 

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

Ladylacy
Posts: 457
Joined: Apr 2012

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

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

 

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

debbiejeanne's picture
debbiejeanne
Posts: 2229
Joined: Jan 2010

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

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

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

rachel12yrsuv's picture
rachel12yrsuv
Posts: 429
Joined: Feb 2013

Tim,

I cal my tube PIA pain in the ass!  Lol. Makes eating a breeze, i have been on Ensure 

therapeutic nutrition since January, all medical personal say me and PIA arenpartners for life, i am still  trying to beat it and eat normal again.  Science might not be anle to fix me but God can, and so i pray and try!  Till then, i am in best physical shape of my life  and cant show it off cause of PIA, understand the name now?!  Food tastes and smells fine to me just doesnt wnt to go down, a very sweet lady at my boyfriends lake cabin heard my story and she went and bought me a food processor so i am going to be trying some new things!  Excited and cautious at same time!

 

Pegger for life,(at least thats what they think!)

Rachel

 

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

 

 

I know what you mean PIA, guess what you can eat what anyone else can eat just make sure your blender can blend it fine enough to go through the tube. The Nutr,Bullet has opened my world back up to me again and I can travel and go where I want to go and eat what I want to eat. Don’t forget to always pray before eating and make sure you wash the tube out.

 

God Bless

Tim Hondo

sin9775's picture
sin9775
Posts: 191
Joined: May 2013

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's picture
wolfen
Posts: 1170
Joined: Apr 2009

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

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

 

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

debbiejeanne's picture
debbiejeanne
Posts: 2229
Joined: Jan 2010

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

CivilMatt's picture
CivilMatt
Posts: 2809
Joined: May 2012

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

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

 

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

donfoo's picture
donfoo
Posts: 1144
Joined: Dec 2012

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's picture
Hondo
Posts: 5608
Joined: Apr 2009

 

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

Ladylacy
Posts: 457
Joined: Apr 2012

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's picture
Hondo
Posts: 5608
Joined: Apr 2009

 

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

Skiffin16's picture
Skiffin16
Posts: 8053
Joined: Sep 2009

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

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

Hi John

 

No way my friend, I can eat anything you can just need a few shakes in the blender and down the old tube it goes. Life has a new meaning now that I can travel again and eat anything and any where I want. See you at Shells my friend.

 

 

John: I am at lost knowing Denny passed away, not much more to say about that.  

 

 Tim

luv4lacrosse's picture
luv4lacrosse
Posts: 1369
Joined: Jul 2010

I named my PEG tube Larry! 

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

Is it Larry PEG or PEG Larry, lol

 

Thanks

Hondo

fishmanpa's picture
fishmanpa
Posts: 1098
Joined: Jan 2013

I'm one of the odd ones that names "things". My truck is the "Silver Bulldog", my guitar is "Marti", my mandolin is "Blossom". I have nicknames for people who mean something to me. Marcia is my "Chiquita" and then there's "Little G", "Cha Cha", "Blue Eyes" and "Mermaid".... ladies whom I've remained friends with through the years. My cat recognizes "Booger" as much as he does "Socrates" ~lol~ 

However, I've not named my PEG. I despise the thing. It smells and has always been slightly uncomfortable. Admittingly, I needed it the first four weeks post treatment and probably should have had it weeks sooner. I haven't used it for hydration or nutrition since Memorial Day weekend so it's just an additional appendege that needs attention and cleanings on a daily basis. I'm having it removed August 6th when I see my RO. I'm looking forward to not having that nasty thing coming out of my stomach!

At going on 10 weeks post Tx, I find I'm not progressing in the eating/swallowing department as much as I'd like. I'm getting enough nutrition and hydration but eating is "work" for lack of a better word. My jaws tire after chewing and chewing and my swallowing is a challenge as my mouth and throat are still compromised and healing. I've read too many cases where a patient ends up needing a PEG for life due to post treatment issues. Even if the current issues are resolved, there is the distinct possibility of a recurrence that would necessitate a PEG or the eventual failure of my swallowing mechanisms. Scar tissue and stricture are possibilities that would require PEG feeding should dialtions fail to work. Aspiration can cause issues that are dangerous and life threatening. I was told by my ENT that my throat is narrower due to the surgery and scar tissue. The ramifications are yet to be seen. Has it changed my voice? Will I be able to sing again? My voice is certainly not ready for a gig and I have no idea at this point if I have the range or the timbre I had previous to cancer. I have gigs booked a little over a month from now and it's becoming quite evident that I need to cancel them :( 

The bottom line and truth is that any of us can end up with a PEG for life. I'm psychologically preparing myself for the possibility. I'm going to do what I can to prevent it from happening but it's not outside the realm of possibility. I never thought I'd suffer from heart problems or get cancer but it happened. It's something we should keep in the back of our minds and know that despite our best efforts it can happen. 

If it does I'll cave and come up with a name befitting of a piece of plastic tubing but until then........

Positive thoughts and prayers

"T"

 

 

 

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

I too never dreamed I would have to deal with cancer being a vegetarian and always taking care of my body; Cancer was for the other people. But no matter how good I took care of my body I could not control the environment that I worked in for over 38 years. As my doctor asked where did you get this cancer it is rare in the US, I knew then that's just about my luck. But you know all in all it made a stronger person out of me; yes I can’t do all the things I once did. And I always need help because I am not as strong as I once was. But my mind is still the same and it wants to do things its can’t do anymore. I loved more then anything Scuba Diving, it was my life and at times I would wish I was a fish because I loved the water. Now I can even go in the water for a swim because of my PEG and tubes in the ears. So I learned to do different things, I am glad now I am not a Fish because someone like Skiffin 16 would hook me and have me for dinner.

 

“T” don’t be offended if your voice is not the same and if you can no longer do the things you once loved to do. You are still a great guy and that is what matters the most, you can still play your guitar and still make beautiful music. So even if there is a PEG tube somewhere in the future for you just call it your song.

 

God bless and be with you my friend in life’s journey

Tim Hondo     

fisrpotpe's picture
fisrpotpe
Posts: 1317
Joined: Aug 2010

i have not had a peg tube, certainly i feel it to be magic for those who struggle thru treatments and others fighting the long term side effects. 

 

not sure what is going to happen yet when i have all my teeth pulled within the next 6 weeks. with the slow healing i have experience with having a tooth pulled is history that says healing after all removed along with scrapping of the bone to remove some necrosis is going to slow down the intake. so i am guessing i may be getting one after some time if recovery is too slow. 

good luck with your conversations with your friend! when i have free time i will be looking for a name in case i get a tube of majic. 

 

Nice to see your post Hondo

 

john 

jim and i's picture
jim and i
Posts: 1561
Joined: May 2011

Great to see you on the board, I miss your post. Jim has not named his tube but he has accepted he will have it for life. There are several reasons, First he is a vegan and cannot get enough calories, he still has swallow issues with everything but liquids, and many things still taste bad or bland. He avoids the hunger craps by eatting on a set schedule and using the Jevity. Anything he drinks is just added calories. He is not like you when it comes to eatting in public. He will not use his PEG in anyones presence but me. Not even family. He has decided he will take living and fishing over food.

God Bless you.

Debbie

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

I am with Jim on the fishing part, and John has a boat so let’s go…..I guess after showing myself to an un-number of doctors & nurses in the passed 10 years I have very little pride left. Eating with my PEG is just another way of life now and one I will live with for a long time to come I pray.

 

God Bless

Hondo

 

 

donfoo's picture
donfoo
Posts: 1144
Joined: Dec 2012

I know you are an old veteran at this by now, so this may be for some noobie PEGGers. Who gives a crap what they think while you push food into your stomach to survive? It is no different than someone taking a bite a bit differently. It so disturbs me to read how intolerant people can be and just be unknowingly rude at times with these stares and double takes.

Living here in the Bay Area, it takes ALOT for anyone to take notice of what anyone does or looks like in these parts but I suspect there are many other parts of the country where societal and cultural norms are far narrower.

Just remember it is their expression of ignorance rather than anything to be attributed to you when you see this sort of gawking or comments. Use it as a teaching moment to get the turtles to pop their heads out into the world a bit more, will do them good! LOL don

katenorwood
Posts: 1804
Joined: May 2012

As I read through all of this link I smiled.  You are truely an inspiration, as others to find the humor in what life throws at us.  You're awesome !  Katie

amr2662
Posts: 30
Joined: Apr 2001

Tim,

As you know, I will have my tube for the rest of my life as well.  I wanted to let you know that you should be able to still swim with PEG tube.  Chlorine and salt water swimming were approved by my doctor.  Lakes and streams are out unless the tube can be covered completely watertight.  I can cover my button style tube completely with a tegaderm dressing that keeps it dry when I kayak.  If you are as active as I am you might want to look into getting a Mickey low profile or the AMT Mini-one next time you have your tube changed.  Some people claim that the low profile types have to be changed more often, but I have had 2 and each lasted over a year before I had them changed. 

Meredith

 

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

 

 

Thanks for the advice I have an appointment next month and will ask aboutMickey low profile. I have a spare PEG tube I carry with me when traveling out side of the US it is a Mickey button type but only a 20 fret. The problem with that is I make my own food and it is too small for me to get what I eat through it. I was hopping they make them bigger and I will ask my Doc when I see him next month. I am glad to see you are getting almost a year before having to replace your PEG.I am 15 months right now on my first tube and I believe the doc is wanting to replace it when I see him. If it is OK with you please stay in touch as I can't get any advice from doctors and sometime the best advice is other who had lived it and been there.

 

God Bless

Tim Hondo

 

DarrenMoo
Posts: 4
Joined: Nov 2013

My mother had a peg put in a couple of moths ago and is really struggling with the prospect of a life without solid food,  I am  writing on her behalf because she is only getting used to computers,  she is really looking for the perspective of people who are going through the same thing as opposed to medical people who have not, she always loved her food and her cancer has nearly taken a back seat such as the profound affect this has had any advice or tips would be greatly appreciated,  her name is Anna and she is truly an amazing person.

phrannie51's picture
phrannie51
Posts: 3601
Joined: Mar 2012

and welcome to this forum.  There are a few folks on here who have a PEG for life, who I'm sure you'll hear from.  This is an old thread, however....and I think if you go to the first page (go to the top of this page and click on "Head and Neck Cancer" and click on it)....it will take you back to the original page and at the top of that page right under HEAD AN NECK CANCER you'll see "Post New Forum Topic"....click that and start a new thread all your very own.

p

DarrenMoo
Posts: 4
Joined: Nov 2013

Thanks so much phrannie51 I will do that.

 

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