it has been over two years now and i am not much closer to eating normal i have managed to put on 10 lbs and that is mostly from boost. am i the only one that the drs did not tell about all these after effects? i am new to this and dont know it reall works yet so any help woule be nice.if i could get a e mail with suggestions that would be nice as i doubt if i can find my way back in here.

I just got a peg tube 2 months ago and I am very depressed. I cannot eat by mouth I had a swallow test yeterday and fail again a lot of asperation. I am looking for answers too about life on a feeding tube. Is there such a thing. Any help would be appreciated

Paulie do you have a feeding tube? How have you put on 10 lbs? Can you eat at all? Do you asperate? Any feedback would be welcome.

Paulie & JIm,
It would be really helpful if you could both tell us where your cancer was, what sort of treatment protocols they followed, and what the diagnosis of your swallowing problem really is. It's impossible to guess or offer suggestions without knowing. As an example, I had almost half of my jaw, and most of the interior lining of my mouth removed and then reconstructed.

I can now eat pretty much anything, but it wasn't without a lot of work. There is life on a feeding tube, don't ever think otherwise. If there is life, there is hope, and there are coping skills. Even with a feeding tube, you're alive...everything else is a minor inconvenience.

There are several members of this Board that live very full lives, and have for years, without taking any nutrition orally. Hang in there, don't lose sight of the fact that you're still with us, and we're here to help you deal with those inconvient realities of surviving the Beast.
Wayne

I am a diehard hard head. Since the people in here made me wake up and go for surgery at James Cancer Center at Ohio State. I made my mind up that I was going to eat and swallow within reason after surgery. I just kept moving my tongue to different locations in my mouth. Now I do it with small amounts of food and kinda of turn my tongue and twist my head in the opposite side where I had the surgery. It hurts , but by George I am eating. Not a lot, but it's better than baby food. I forced words out of my mouth and even had the Dr say that I was way ahead of what they expected me to be doing.. My surgery was the 3rd of this month and I am home and not nearly as miserable as I feared I would be.. Don't give up and force your body to do your will. It's working for me.. Go for the Gold all of you and be a fast healer like I am.. The prayers from around the qworld seem to have made a big difference for me. I'm praying for all of the people we meet on here..

EzJim and Dragan are you tube free and able to get enough nutrition by mouth. My main problem is severe asperation. My epiglottis is not closing and tongue base not functioning correct either causing the problems all due to earlier radiation and chemo and now I am aging and tissue changing. .

Jim,
I am tube free, and have been for a long while now. Have you had any dilation done? I know that helps in some cases. Jim is right; you have to keep trying, small, SMALL bites of food, lots of water, lots of chewing, and paying attention when swallowing.

It won't likely be easy, but don't stop trying. I was told during radiation that it was imperative to swallow something every day. It only takes a short while before you lose muscle memory, and swallowing ability suffers profoundly. Are you working with a therapist? I think I would be asking about that if you're not.

They can give you a lot of exercises to do, and they help, a lot.
Wayne

Dialation will not help me it is the epiglottis not closing properly and throat muscles being stiff not pushing the food down. I just started working with a swallow therapist and I am working on swallow exercises now too. I will try all that I can to eat again. The tube life is just not for me. It is so unnatural and depressing tome. Thanks for the encouragement from all.

Hello Paul

Follow all the above suggestions.

Read the first two forums and you would benefit to have a "signature" for yourself so we all know what your RX & TX entail.This will help everyone. I suggest reading/searching the following words and reading the pages of interestv I mailed to you. Call me anytime, but posting gets more houghts from many people.

Look up:

TRISMUS
CAN NOT SWAOLLOW
HELP WITH SWALLOWING.
SWALLOWING EXEERSIZING
ETC, ETC,

GOOD lUCK, PETEY

Hello my dear friends.

Thank you all for your support and comfort.

My thoughts are raceing, and there is so much to say. I need to start respondingv in shrtr notesxas I forget toome back and "report".

So I will give a quick ramble to try to get caught up here.

Here is what I do for my meds.

8am: 515 mil gr Sul tabs, 1 tab sertaline 1 tab 2.0 ativa(now2.0 Lorraspan) / mouthwash/ steroidss 4 per day decreesing i pill per wk. breakthru, 100 mg per hour if newedeed for pain., same withlorrazapan butevery 3 hoursf needede,

repeat at 8pm with same repeat if needed. This took 1 week of trial and error to getdown to a science. YOU NEED TOUR DOCTOR AND NURSE TO DO THIS, NOT YOURSELF. i RECORD WHAT i NEED AND THE ADJUSTED THE MEDS.

Its IS HARD TO TAKE MEDS ANSD THEN WRITE DOWN YOUR THOUGHTS COHERENTTLY. MOUTH WASH AND PRUNNE JUICE 3X A DAY KEEPS AWAY THRUSH ANS CONSTAPATIONN.

I DRINK AS MUCH ICEW CREAM, LIQUIDS, MILKSHAKES, ENSURES AS POSSIBLE.

nO ONE SHOULD BE IN PAIN, BUT DO NOT OVER MEDICATE. Report ANYTHING UNUSUALY IMMEDIATLY 24/7. Some ONE ALWAYS ANSWEERS THE PHOME AND IS READY TO HELPYOU STAT.

i NEED TO BREAK BOW AND WILL WRITE BAK SHORTLY.

Hello Hello Connie

I will give a quick run through, but you must be on the same page As the doctor as he must rx the drugs and ok them. No 2 people react alike and I AM NOT A DR.

8 am 1 DOSE 515 MORPHINE SUL TAB TWICE A DAY (EVERY 12 HOURS.) (ONE ADAVAN TIMES 4 TIMES needed.2 MG)

MORPHINE SUL SOL EVERY HOUR AS NEEDED FOR (BREAKTHRU) IF NEEDED.

I will give a quick run through, but you must be on the same page on the doctor as he must Rx. the drugs and ok them. No 2 people react alike and I AM NOT A DR.

8 am 1 DOSE 515 MORPHINE SUL TAB TWICE A DAY (EVERY 12 HOURS.) (ONE ADAVAN TIMES 4 TIMES needed.)

MORPHINE SUL SOL EVERY HOUR AS NEEDED FOR (BREAKTHRU) IF NEEDED.

I will give a quick run through, but you must be on the same page on the doctor as he must rx the drugs and ok them. No 2 people react alike and I AM NOT A DR.

8 am 1 DOSE 515 MORPHINE SUL TAB TWICE A DAY (EVERY 12 HOURS.) (ONE ADAVAN TIMES 4 TIMES needed.)

MORPHINE SUL SOL EVERY HOUR AS NEEDED FOR (BREAKTHRU) IF NEEDED. write back if not clear as I just took them and am a little tipsy.

There should be NO PAIN! Waiting to hear from you soon. Petey