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.
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.
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.
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
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.
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
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
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?
Gerry, Did you get the second opinion you wanted to get? Are you just looking for some other suggestion?
Nelie
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.
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.htmlI 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
Jim just a thought are you taking Prilosec or some type of proton inhibitor for your heartburn. Without the quart of saliva that we normally produce to rinse the acid out of our esophagus . we need something to help there. Good luck Joe
I love your sense of humor. Mine is helping me and I am just getting ready for surgery. Thanks and good luck.