PEG for LIFE

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"

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 

Hondo said:

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

Tim,

I cal my tube PIA pain in the ****!  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

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

DarrenMoo said:

Mother struggling to deal with a life without food

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.

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.

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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.

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