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#68970 01-31-2008 08:43 AM
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x28007 Offline OP
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I am 7 months post treatment. Although I have had swallowing issues from a constricted esophagus, I am beginning to wonder if I am addicted to my PEG tube. Has anyone else had a hard time weaning off their PEG tube? If so, how did you manage it and what were your techniques? Any help will be appreciated.


Nine years out. New normal with limitations, but surviving and living life to the fullest.
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I only had my tube for 4 months total but hated it so much that I was bound and determined to be rid of it as soon as possible. However, once I decided to have it removed I found myself trying to make excuses to keep it a bit longer as I now believe I was developing a psychological dependence on it. I would start thinking to myself "what if I won't be able to swallow" and similar things. It almost seemed as though I had developed a drug like dependency on it and just had to come to grips with it and make the tough decision for removal.

Bill D.






Dx 4/27/06, SCC, BOT, Stage III/IV, Tx 5/25/06 through 7/12/06 - 33 IMRT and 4 chemo, radical right side neck dissection 9/20/06.
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x28007, Bill,
I still have mine... didn't get it until 1 wk after rad tx ended. By that time I was a big blubbering baby for lack of groceries and fluids... had to have it, and in fact had said I wouldn't have one... funny how things help us to change our minds about things. Installed 10/26/07, Friday afternoon... so, let's see, that's right around three months and a week for me and it's getting yanked out Tues. the 5th, and hell yes I've been hesitant and uncertain as to whether or not I'm ready to have it removed. I keep finding excuses to keep mine as well. I could have arranged to have it done last week, but just got up the nerve today to make the call... my PCP said last week it was up to me... ME? geez...Soups, chowders, mac n' cheese, shells, anything that can go down easy I'll try. Biscuits and bread broken up in a thick chowder goes down easy for me.

I really don't know because I've nothing to compare things to, I'm (thank God) relatively inexperienced at this sort of thing. However, I do consider myself fortunate, but I'm determined to get rid of the thing, although it has helped me tremendously during this trying time. So, come next Tuesay I will be saying goodbye to my dear friend PEG... it's going to be hard, but I've got to get'r out of my system. Best of luck you two.


John - Proud to be here...
Hemiglossectomy 08/02/07, 4 lower molars extracted prior to 6 weeks IMRT 09/10/07-10/19/07, SCC w/met to L neck lymph nodes, rad only, no ND. PEG 10/26/07-02/05/08.
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If you cant swallow enough nutrition for your daily needs,then you are not ready to have the peg taken out.
On the other hand if you are not trying to eat because you know you have the PEG thats a different kettle of fish.

Try going for a whole day without using it,and see what happens.Then try two days and then three.How you get on should answer your own question,and help make the decision easier.

Its just like walking on a broken limb without your crutches or a cane for the first time,until you know you are not going to fall over you cant throw them away.So take baby steps till you are up and running.

love liz


Liz in the UK

Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.

Never take your eye off the ball, it may just smack you in the mouth.
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This post has eased my mind a lot about having a peg. Dr sais I might need one after the rads and chemo kick in. If I hurt much more in my throat and head, I'll go for anything. It seems everything hit yesterday like a lot of units in a parade. LOL one at a time.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
EzJim #69075 02-01-2008 04:54 AM
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What Cookey said is really important. I am wondering why you think you might be "addicted". It's a strange concept to me-- because of my swallowing problems I have ahd my PEG for over 2 and 1/2 years (and, no, that won't happen to you--the degree of swallowing complications I have is very rare) and I am grateful for the nutrition it has provided me BUT there is nothing, to me, that could possibly be addicting about the experience of feeding yourself through a tube. There's nothing pleasurable about it. And there is so much pleasurable about eating--even when, like me, you're very limited in what you can eat!

However, eating is NOT pleasurable if you find yourself choking most of the time--been there and done that--if that is what's happening, you should go to a speech pathologist who specializes in treating dysphagia and see what they recommend. Don't stop trying to eat because of it. And I wouldn't call that addiction to the tube but more avoidance of a problem.

I still have my tube because for me to eat (really it's more like drink or slurp) all the calories I would need every day, using a nutritious blend of stuff included plenty of pureed veggies and fruits, I basically need to spend half my day eating.

I tried doing that this summer, when I wasn't working, and it worked fine when I wasn't working. It doesn't work so well when I am working. And no, I'm not willing to just drink 4 cans of Carnation VHC-not enough hydration there, for one. Since I take salagen, and am prone to kidney stones, I need plenty of hydration every day. And then there's the getting meds down thing--actually much easier through the tube.

And all my docs (MO, ENT, and gastroenterologist who put it in) are telling me tnhat given where I am with my swallowing they receommdn not pulling it yet. I get about 1/2 to 2/3 of my calories each day from eating, the rest come from tube feeds. I still hope I can improve on this in the future.

having to use a tibe for a lentght of time does not = addiction. But if you are not trying to eat, and there's no good reason why you aren't eating, well, that's somehting I haven't had to deal with.

Nelie


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
Nelie #69186 02-02-2008 05:51 PM
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x28007, Nelie, John, EzJim, William, Cookey, JBNish:

Looks like I'm the second most senior user at 490 days, 10 hours, 4 minutes and 32 seconds up to.....wait for it....one heartbeat ago. But who's counting?

What a range of g'tube experience you folks have. I fought against the peg right to the point where my Oncologist threatened to cancel my final chemo treatment the following day unless I regained the 8 pounds I had lost the day before. Came close, but in the end, I had dropped below our agreed threshold weight, and it was the peg or no chemo. The doctor had cheated, I reasoned at the time, and vowed never to divulge a personal goal to someone else ever again. (She knew that my primary goal throughout treatment was to survive my last scheduled date with Cisplatin!)

Now here I am, 490 days, 10 hours, 7 minutes and...sorry, the timer goes off now.. with this hated appendage still choosing the menus in my life. I have even allowed myself to contemplate a future with a permanent g'tube, and that is how far my mind has wandered. Mind you, it would sure be a lot more tolerable if they made a turkey or steak flavoured formula; on second thought, no tube would mean a much larger dish load to clean up! Hmmm....

On the brighter side, I am able to eat ice cream without too much problem so long as I maintain a particular sitting angle, otherwise it pools up in my throat and aspiration becomes a real threat as my epiglotis does not fully function. I think the texture, temperature and viscosity of the ice cream all combine to make it work in my favour whereas Jello and pudding do not.

Most people think I am kidding about my ice cream training aide, as though flavour and joyous mental imagry played a part in my selection. I guess I would have to feign the loss of my taste buds to build any credibility on this point.

I confess that I am able to drink a piping hot mug of freshly brewed and ground organic coffee in the morning, which is the second reason I wake up every day.

In all seriousness, I may now be in a position where I could expand the scope of what I might eat, without increasing the risk to my dentition, and gradually allow normal feeding habits to overtake g-tube convenience, reliability, efficacy, cost to nurture and the best damned blood chemistry I've ever had.

Does that sound like something a former gourmet scratch cook with a $100 per ounce balsamic vinegar habit might say? Food and food preparation used to be the only reason I woke up every day, but that was before cancer left a bad taste in my mouth!

Until recently I haven't been able to clean my teeth properly and two of my dentists spooked me with the knowledge that my teeth were deteriorating at an alarming rate, thanks in part to the lack of saliva. The thought of exascerbating the problem by introducing food related bacteria turned me off of further experimentation until I could maintain better oral health. That day could now be here, finally, thanks to a few months use of the Therabite device.

I have had many months of therapy with a Speech Pathologist, but its now on hold until I can re-start the Therabite again; I have some exposed bone due to osteoradionecrosis on the lower mandible that hasn't fully healed, and the strething exercises became too painful. Until then, all I have been instructed to do is practice "hard swallowing" as often as I can. There doesn't seem to be any other exercise or procedure that can help my condition, and electronic stimulation is not an approved procedure in Canada as yet. I don't want to challenge the knowledge base of the pathologist, but I do speculate about her lack of on-the-job experience and whether this might have something to do with such few treatment alternatives.

I am hoping to find more information about swallowing techniques and the how-to of eating in a post-radiation scenario by researching this website. Reading your posts has furthered this process and I thank you all very much for letting me ramble on.

Good luck and good lunching to you all...

JT2


Age 55 at Dx,smoker 30 yrs ago, drinker 8 yrs ago; Stage 4 Squamous cell carcenoma T4a N3; 35 radiation tx, 3 chemo w/ Cisplatin, radical neck dissection,40 hyperbaric dives pre-surgery. Clinical remission since May 2006; Update: declared cancer free July 16, 2010! Miracles can happen...
JT2 #69799 02-12-2008 01:49 PM
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My husband has been unable to swallow due to severe stricture. Perhaps it was the radiation...whatever. The stricture is in the lower larynx. All doctors say nothing can be done. He is totally dependent on the PEG. It has been three years. He went for exercises, stimulation... nothing helped. Suggestions?

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Gerry, Did you get the second opinion you wanted to get? Are you just looking for some other suggestion?

Nelie


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
Nelie #69832 02-13-2008 11:32 AM
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I contacted Kettering in NY. A woman got back to me with the name of a gastro doctor. He needs copies of the records of treatments done so far. That is where I am now.
Thank you so much for your concern. People make it all bearable. Everyday there seems to be more and more issues. It is so hard to figure out.
Thank you.

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