I wish you luck with the second opinion.

This is not at all because I think you won't be successful at finding someone who can do something about your husband's stricture, but the other website I have found helpful, in terms of dealing with the day-in/day-out stuff of living with a g-tube is this site:

http://www.oley.org/index.html

I have been very concerned about if or whether I can ever do something like travel internationally again with a tube and there's lots of helpful information about that sort of thing at this site. I also find it helpful just to read other people's stories about how they cope. I am still committed to my battle to get of the tube entirely, but the Oley foundation site helps remind me that a full life can still be lived even with a tube.

Nelie

Nelie,
I believe that I was "addicted" to my tube which was implanted at time of near total glossectomy in Feb 2004. Because I had celllulitis complications in June 2004 after 36 radiation treatments, my otolaryngologist was hesitant in getting me on a swallowing therapy program. I had about a year of this off and on and passed the barium test Dec 2005. However I never got the hang of getting off the tube and thought I would have it until I passed. My only attempts were swallowing a 5 oz. glass of fruit juice daily.

Then in Nov 2006 I began to have tube problems. No one told me & I didn't ask about frequency of tube changes. I developed an infection on Nov 2006, cleared up with antibiotics. I saw a GI doc who sid I should replace the tube. He pulled on it a number of painful times and it would not come out. I had to have it replaced via endoscopy 1 year ago. In summer 2007 I noticed some pain occaisionally and mild discherges at times. I then began to accelerate a liquid diet of ProBalance with assorted flavor packs from Nestles which help make the drink taste. I must have sensed trouble ahead. It came a month later when my tube was replaced the second time. I started having worse discharges, pain and some bleeding which reached a climax on October 4, 2007 when I had bleeding at the tube site that would not stop. My wife called the emergency squad and the doctor at the ER removed the tube. By this time I was able to drink enough probalance and Carnation VHC to maintain weight.

The former tube site leaked badly at first but by Thanksgiving the leaking stopped. I tried some broccoli cheese soup but found I had heartburn so I stopped. Maybe the gas in the broccoli caused this but I returned to strictly probalance and VHC exclusively. I can't handle solids due to inability to control and feel the pieces in my mouth. I feel that I am very lucky to be able to maintain my weight with the somewhat pleasant tasting flavored nutrition (thank God for flavor packets) and I am so happy to be rid of the tube and the pain. I feel almost normal for the first time in a long time.

In retrospect I wish I had asked more questions and more aggressive in swallowing to get rid of the tube sooner but better late than never. I am grateful for the tube when I needed it but like any other good thing its time had passed when I should have been off of it.

I wish you the best in your struggles.

Jim
---------------------------------------------------------------- SCC Rt lateral tongue Dx 9/03, Surg 11/03 (T2/N0M0);recur SCC BOT and anterior tongue Dx 1/04; surg 2/04 (T4/N0M0) subtotal glossectomy, forearm free flap, floor of mouth reconstruction,pharyngoplasty;trach until 3/04;PEG; 36 rad (3/04-5/04)therapy 12/04-12/05; 2 esophagus endoscopies; PEG infections Nov-Dec 06; embedded tube replaced by endoscopy Feb 07; replaced Sep 07; bleeding, tube removed Oct 07

Jamaes, If you stay on the tube because you just aren't trying to swallow, or trying to swallow enough, and it's not because of swallowing problems but just a lack of effort, I can see that as being a problem. I don't know if I'd call it an "addiction" though since to me addiction implies a craving for something and I really have never met anyone (on this board or otherwise) who craved tube-feedings!

I'm curious--are you able to swallow pills? if not, how do you handle taking medication when you need it.

Nelie

Hi Nelie- I had a near total glossectomy and i can swallow most everything- Everyon'es surgery and anatomy are different and we all have different levels of success. Jim worked with a speech and swallowing pathologist to regain his swallowing abilities without asperation and clear the strictures in his throat.

I hope you will possibly get at least to swallowing liquid food- I noticed an immediate change in my energy levels when I was able to at least swallow liquid food- I felt so much more nourished.


I know it must be very difficult - Start slowly swallowing water then liquid ensure types of drinks and tehn more and more thicker drinks and build from there-- swallowing food does a great job of
loosening up the esophagus. At first it hurt me really badly and gave me kind of a heartburn feeling to swallow any solids at all but I just made myself keep doing it and it felt like the act of swallowing the food itself loosened things up and got me back into the swing of things.

Thinking of you Nelie!


K

Hi Kate, I must have been unclear somewhere. I am swallowing liquids and things up to the consistency of pudding and yogurt--as long as they are smooth or only have very small bits of stuff that don't styick to my very-scarred mouth and throat. But I can't swallow a lot at a time--it's partly because my esophagus is narrower than normal but it's also that my epiglottis is worn away so I actually have to do kind of a "double swallow" for every mouthful to push it back to the esophagus--and that works with liquids but not with anythings solid--including even tiny pills.

And ebcause that double-swallowing thing takes longer, and takes concentration, it takes me half an hour to have a bowl of soup. So unless I am swallowing all day I can;'t get all my nutrition that way (especially when my job gets busy-I used to barely have time for a piece of pizza at my desk as I worked--now I barely have time for a can of Jevity ir Ensure.

I do use the protein drinks and Ensure some but I really can't stand them and I just can't make them the mainstay of an oral diet. I have found lots of soups I can have and I add yogurt, ricotta cheese, sour cream, etc. to add calories.

If I had to, with lots of fatty food and carnation VHC I could probably come close to doing all my calories orally but I could not get medication down well I don't think. I have a couple of things I have to take on an empty stomach, they aren't supposed to be taken with food, so I can't mix them into a drink or something (and one is part of my breast cancer treatment so I don't want to mess around with getting it down right). That's really the biggest hurdle right now I think. That and my fear that my throat might close up so much and so quickly that I would really need to supplement with the tube and wouldn't have it. Swallowing alone, at least when it's liquids, doesn't seem to be enough to keep my esophagus open. I was swallowing regularly before and it didn't keep it from almost totally closing up.

Nelie

I too am having swallowing problems...I was diagnosed with SCC last July and had 2/3 of the base of my tongue removed in Sept...they placed a graft from my thigh and I have healed up nicely...I have been on the tube since surgery and am still unable to eat...I can get a little applesauce, yogurt, that sort of thing to go down as far as the Adam's apple area, that's about it...then I cough it all up...I have been seeing a therapist and doing swallowing exercises faithfully for months...I am really getting discouraged and, sometimes, depressed...other than this issue, I'm looking and feeling great...back to my usual high level of activity with lots of energy...does anyone have any tips or suggestions for getting past this last hurdle?...thanks, Katie

Katie,

Two things:

1. It would really help posters if you edit your signature line like mine so we can answer more precisely and you don't have to constantly repeat yourself;

2. You should really start your own post rather than trying to find an old one that suits your question.

Just trying to help.

just want to pass on a little of what worked for me I had my tube a couple extra months was leary of getting rid of it! CHOCOLATE MILK FROM THE STORE. Its viscosity made my throat work harder. Milk shakes work a litttle better but it took a long time for my throat to heal it will get better be patient. Joe

Joe:

I am another believer in chocolate milk. Its 400 calories per pint, I still drink it sometimes. Now, its mainly milkshakes. During treatment chocholate milk was too thick, I drank Yoo-Hoo.

Chocolate milk and chocolate soymilk are both staples in my diet!

Katie, I've struggled with swallowing problems since treatment which ended over three years ago. I won't go through all the ins and outs of what happened to me but I will say this--keep doing your swallowing exercises and keep swallowing as much as you possibly can. If you stop doing either of those, your swallowing will get worse because your swallowing muscles will atrophy.

Also, it may be time to get another opinion on why you can't swallow if you don't feel you are getting the answers or making the progress you need even when you do the recommended exercises. It turned out that the x-ray/video from a modified barium swallow that I had early on had not been read right (they had overlooked that I had a pretty large esophageal stricture) and so all the exercises I was doing faithfully weren't helping because I was like a clogged sink--stuff backed up. It took a lot of running around and travelling elsewhere to find that out and it is soemthing I shouldn't have had to go elsewhere to find out but mistakes do happen so be aggressive about things related to this.Swallowing disabilities are hard to live with I think you want to know you've done everything you can before assuming you may not get your swallowing ability back.

Nelie