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Anybody else on a PEG permanently?

jteeter45's picture
jteeter45
Posts: 3
Joined: Nov 2012

My diagnosis: no food or drink by mouth - ever - no chance of recovery of swallowing (nerve damage). I've been on Jevity 1.5 for about 6 months and am doing really well. I can do pretty much everything else I want.
Questions:
Who else is on PEG permanently?
What are your attitudes, worries, etc about never eating again?
I do have a blog: "Living on a PEG" //http://www.facebook.com/LivingOnAPeg?ref=hl
Any groups out there for folks like us?

longtermsurvivor's picture
longtermsurvivor
Posts: 1755
Joined: Mar 2010

a number of people are. Hondo and patricke come to my mind immediately. Attitude? Boy, both of them are great!~ I know patricke has run a marathon with his, and is getting ready to backpack the entire Florida trail, all one thousand and some miles of it. stick around, there should be a number of responses. Thanks for posting.

Pat

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

I've been tube feeding since a surgery I had last year (June 24th). As it stands right now, I can't swallow. My doctors and therapist don't think I will be swallowing again but I refuse to give up. After researching my last two swallow studies, I've come to the conclusion that it is the fibrosis in my neck that is not allowing the hyoid bone in my throat to move forward thus starting the swallowing mechanism. My neck is hard as a rock from radiation back in 2004. At times tears have started to form in my eyes when I see or think about a food I've enjoyed in the past. It's not easy thinking about being relegated to a tube the rest of you life.

As I said, I refuse to give up. I just got back from the chiropractor. This is my fifth treatment of a procedure known as the Graston Technique. It is torturous to go through but if it works, it will be well worth it. I'm not sure whether it is wishful thinking or not but my side to side range of motion seems to have gotten a tiny bit better. The chiropractor uses metal tools to dig into my neck to break up the fibrosis. He's very lucky that right now, I can't talk either otherwise my screams would probably clear out his waiting room. :-)

As a word of warning to all of you, if you feel your neck tightening up and it is becoming uncomfortable to turn your head, please don't wait to start doing neck exercises that can be gotten from a speech/swallow therapist. It will NOT get better if you just ignore it. For those of you whose fibrosis has taken hold, you can research what I'm going through at www.grastontechnique.com.

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

I been on the PEG for a little over 7 months now and I can eat anything anyone else can. My Wife was talking to Denny’s Wife a few months ago and from then on it was everything into the Health Master Elite Blender and pump it down the PEG. I do put a little in my mouth just to remember how it taste but then have to spit it back out. The new normal

PS: Welcome to the family
Hondo

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

Not sure about HONDO, unless that is recent....though he does have a lot of problems.

GreenD, Denny is one that I know of for sure, and has been for many years.

Although if I remember correctly, he can take in some liquids orally.

JG

longtermsurvivor's picture
longtermsurvivor
Posts: 1755
Joined: Mar 2010

he had one placed a ccouple of months ago. But heck, he'll be around and he can explain for himself. I could be wrong.

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

Just didn't think it was permanent, but could be...not sure.

How's the garden and MF...

JG

longtermsurvivor's picture
longtermsurvivor
Posts: 1755
Joined: Mar 2010

I had a great gardening year, despite the heat. We get pretty hot here, and this year was a smoker. Avg daytime high in Aug was 101. Combined with the humidity, wow. It melted my garden, made a zillion ping pong ball sized tomatoes. They tasted great.

The MF is gearing up to start my terracing project. Now that its cold, I can have at it, lol. I wasn't going to do that in the heat.

John I'd rather be fishing. Bass and crappie in Florida. who'd of thunk it? Been doing a bit of hunting, just no fishing. And going to a lot of Univ of Nebraska football games. Go big red......

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

Sorry I forgot to tell you, after the pneumonia 7 months ago they have to put the PEG in, I been living on it every day. Little or no hope to be able to swallow again. But that is OK because I can still Fish and then blend the fish in my Health Master Blenda.

Wishing you and the Wife a great & happy thanksgiving my friend.
Hondo

Vikeman10
Posts: 62
Joined: Jul 2012

Haven't given up yet, but docs aren't very reassuring and say with all the damage from radiation(twice) that it will be very difficult or extremely unlikely to get the functioning back, but you never know. I take one day at a time and am still able to smell the foods I loved so could be worse.
Randy

CivilMatt's picture
CivilMatt
Posts: 2807
Joined: May 2012

Hi jteeter45,

It does not sound like you have a lot of options. I was only had a PEG for a short while, but can see learning to live comfortably with one. I hope things spin your way.

Best,

Matt

Jametz426
Posts: 3
Joined: Nov 2012

I have been on PEG for one year and it will probably be permanent. It's a bummer. I am adjusting and happy to be alive. I have great support from family. I also cannot talk due to no tounge and lower lip

amr2662
Posts: 30
Joined: Apr 2001

I have had a feeding tube for almost 2 years. I am 13 years post-treatment and can't swallow well enough anymore due to nerve damage.
I strongly suggest getting a low profile "button" type such as a Mic-Key or AMT Mini One to help maintain an active lifestyle. Also, the Oley Foundation has a nice website for more information on tube feeding.

patricke's picture
patricke
Posts: 419
Joined: Aug 2006

Hey Jametz426, Living with a PEG is a bummer, but I see that you have the same outlook as me, in that my favorite saying to myself and others, is "I'm just happy to be here." Don't let a PEG stop you from doing the things that you love to do; doing them is all about finding solutions to do them while keeping your PEG safely secured. I too am unable to speak due to a severe tongue shortage, which is oh so frustrating. However, are you aware of applications for I Pads and computers that convert text into speech? They are no replacement for being able to speak fluidly, oh how I miss those days, I have so much to say, but they are very helpful. My favorite app is Speak It, and then there is Text Reader, so you have a couple of choices, and there could be more. Check these out if you are not already using one, they have been a great resource for me, even though I don't type as fast as I speak, but I am working on it...........

PATRICK

Greend's picture
Greend
Posts: 679
Joined: Feb 2010

I've been on the tube for over five years and will be till I die. It gets frustrating at times and it does restrict many things I would like to do but overall I've gotten used to it. I no longer do the Ensure, Jevity etc because after two years on this diet I simply could not gain weight and was constantly fatigued. At my wife's insistence I started blending regular food and that greatly improved the fatigue factor.

I do wish I could have more say about the type and brand of PEG I get when it has to be replaced but haven't been able to thus far.

Don't like having the tube but it has saved my life.

Denny

patricke's picture
patricke
Posts: 419
Joined: Aug 2006

Hey jteeter45, alas and alack, all is not lost (literally). I believe that you'll do just fine with your all liquid all the time diet, based on your attitude reflected in "I can do pretty much everything else I want." That attitude is the key to keep on havin fun, i.e., focusing on what you can do. I've been PEG'IN for 12 years now and it hasn't interfered with me continuing to do the things that I love to do, including running, hiking, backpacking, surfing, tandum skydiving, and oh, and let's not forget my personal most favorite activity, lawn mowing, to name a few. My biggest challenge to continuing to be active, at the outset of being PEGED, was how to secure my tube while doing stuff. First I used duct tape, which worked well, until after a couple of years my skin started staying red long after the tape was removed. Fortunately, at the time that the duct tape was no longer viable, I discovered the miracle of the Under Armour "compression shirt." I tape my tube to my chest with Nexcare cloth tape, put on the compression shirt, and I rock and roll.
Not being able to eat again is indeed a bummer, I won't lie, but it is, by far, not the worst thing in the world. I deal with it by being just happy to be here, although the Red Lobster shrimp fest, and other food commercials do tweek a bit of longing from time to time. I avoided pouring in public for quite awhile, because I was embarrassed, but one day thought, what the heck, I am going to pour in public, who cares, so I have ever since; it was a great decision. When I am eating out or otherwise out and about, camping, traveling, etc, I pack FiberSource HN for a healthy filling meal. At home, my most awesome wife, Diane, puts whatever the family meal is (breakfast, lunch, or dinner) into the amazing Vitamix blender with a fair amount of liquid (juice, milk, etc.), and in 3 minutes (yes, really, I said 3 minutes) it is liquified, and ready to go down the tube. Thus, I am able to enjoy a normal diet at home. The Vitamix is a little pricy, but for a long term investment it well worth it, and I have heard that the company provides a discount for folks like us who are purchasing due to having a medical condition. We burned out several conventional blenders before discovering the Vitamix. My motto is, "if it flows, it goes," so I pour down whatever I would have normally drink, e.g., coffee, tea, beer, wine, etc.
I try to clean my tube daily by pinching it off at the bottom, above the bumper, with a clothes pin, and then, using a dropper, I fill it with vinegar (acid content for cleansing), let it sit for 15 - 30 minutes, and then I use a Salinas PEG Brush, that I ordered on-line from MEL, inc, to gently scrub the interior a few times. I also pour diet coke down periodically to help keep it clean. This routine works pretty well for me, but eventually, my tube does become colonized by interestig and determined fungi, which after as long as I can extend it, necessitates having to have it replaced (always a fun time). My tubes usually last an average of 18 months, and then it's time for a GI doc visit for the pull and plulnge replacement act.
One last thing, I don't know what kind of internal bumper you have, but if it is the saline filled balloon type, be aware that it can spontaneously deflate, which once happened to me while in a bathroom stall, at a turnpike rest stop, on my way home from my mother-in-laws after Thanksgiving- yeah, that was interesting. The diaphram bumper is the most secure.
I don't know of any groups for us peggers, but there are probably some out there. I'll check out your blog. If you have any questions for me, please feel free to contact me. In the end, peggin is no big deal, and has little effect on my life, and I trust will be likewise for you. So jeeter45, keep on movin forward, and havin fun!

PATRICK

Greend's picture
Greend
Posts: 679
Joined: Feb 2010

Patrick

You mentioned the diaphram bumper which is what my first peg was and it lasted the longest of them all. I was told (forget who it was) that the diaphram can only be inserted the first time (surgery) so every tube since has been the balloon which last me less than 9 months on average (one came out in two weeks).

I am also assuming that the diaphram bumper is what I called the mushroom?

Denny

patricke's picture
patricke
Posts: 419
Joined: Aug 2006

Hey Denny, no doubt we are talking about the same type of internal bumper. My doc has always installed a tube with a diaphragm/mushroom bumper, which is not the most pleasant of experiences, but the "discomfort" only lasts for a couple of minutes after the old tube is yanked out, and the new one is plunged in. The good doc even replaced it in his office during a visit last year; that was great. So, you might want to re-visit the subject with your doc the next time you need to have yours replaced. I hope that you are as active as you want to be even with your trusty tube. Being able to continue to engage in the the activities that I love has helped immensely to enable me to cope with having a tube. If there is anything that you are not doing because of your tube, and you want to brainstorm about a solution for you to do it, let me know and maybe we can come up with something that might work. Finding solutions for doing stuff with my peg has been an avocation for a long time, and now there's not much that the tube prevents me from doing. I've skydived, run a marathon, backpacked for 6 days, hiked to the top of Mt. Washington (6,000 ft), and surfed (my greatest love) with my trusty tube, so I can't imagine that there would be anything that you can't do; oh, and I was cleared to scuba dive with my tube.

PATRICK

Greend's picture
Greend
Posts: 679
Joined: Feb 2010

Actually the reasons I have had to replace my tubes has been more for leaks than the saline leaking out. For some reason they always seem to develop pin hole leaks at the worst possible times. Once in Mexico I patched it with duct tape until I could get to the doctor the nest day. I don't hold back as much for the tube as I do for the problems I've been having with pneumonia. My worst case happened New Years eve in 2009 when we were on a cruise and I got very sick with limited medical services available. As you know its really more of being a pain in the butt carrying my blender with me every where. I have decided to get a Vitamix for my next blender based on your comments. Appreciate the information and hope you just keep on keeping on.

Denny

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

I have only been on the PEG for about 7 months now and the way it is looking I will have it the rest of my life too. No matter what I have tried to do to get my swallowing back it has failed. I tried DPNS it did not work, I did Ultraviolet treatment it did not work, I did Laser Nerve Stimulation it did not work, I am doing HBO treatment right now but not for the swallowing problem; It looks as if when the nerve is dead it is dead.

I wonder how it is that some of us are affected more by the treatment than others, did our doctors do something wrong or is it just our number.

Anyway I am here with you guys doing life on the PEG.

Hondo

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