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doctors want to remove feeding tube im not ready yet

survivor31's picture
survivor31
Posts: 72
Joined: Apr 2010

Hi all I hope all is well with everyone at my doc appt he want to remove my feeding tube but im still not comfortable with mt food intake by mouth on my own due to my lack of taste when did most of you no when it was time to get it removed , my family think ive become dependant on the feeding tube and thinks it is time but im scared maybe i will start losing weight if it removed .

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Well-meaning family members can get on your nerves sometimes, can't they? Several times I've heard "Why do you buy things you know you couldn't eat last week?" Well, hoping I CAN eat them this week, of course, but some in my family can't relate. I'm sure your family sees getting rid of the tube as another bit of proof that you'll be fine, so keeping it means you might not be. I also got a couple who are like "The tumor's gone - you're fine now". Did you tell your doc about your fears? Can he/she help you map out a game plan (maybe certain high calorie supplements) to go with if you should start to lose weight? I got my tube removed yesterday - but I've been ready for it to go for some time - the three month PET scan was all we were waiting on. It does make me feel good that your doc thinks it's time. I know it must be scary to think you may not be able to maintain your weight, though. Good luck. Let us know.

SASH's picture
SASH
Posts: 276
Joined: Apr 2006

You have to be your own advocate and speak your mind saying that you aren't ready for the tube to be removed. In my opinion, you need to be able to take in enough calories by mouth for a period of time and not be using the tube. Once you are able to do this and you haven't used the tube, that is the time to talk to the doctor about removing it.

I wanted mine out as soon as possible, but I was the one controlling my food intake. Once I was able/allowed to eat by mouth, I started. It was slow and painful, but at that point I had the tube to supplement the mouth feedings. I gradually increased the food by mouth and lowered the tube feedings. Once I was done with all tube feedings and was only getting nutrition via my mouth and maintaining weight, I knew it was safe to have the tube removed.

Only you can determine when it should be removed.

MarineE5
Posts: 745
Joined: Dec 2005

Survivor31,

I am glad to hear that your Doctor feels that you are at a point now that he/she feels you are ready to have the feeding tube removed. Yes, you may have some reservations about having it removed now, when you aren't tasting food. But, you will be one step closer to feeling a bit more yourself. Just try to take in 12 times the calories that your current body weight is. In my case, I weigh 220 lbs. so I need to take in 2640 calories a day to maintain my weight.

You can do it, besides, it is summer time and you'll be able to go swimming again : )With the feeding tube, we can't.

My Best to You and Everyone Here

chris731's picture
chris731
Posts: 24
Joined: Jul 2010

I agree with Sash, remove the tube when your comfortable and ready to have it removed. I've had mine in for six months, and next week I'm getting it removed at my request. I haven't used it at all 2-3 weeks and it's becoming a nuisance.

sportsman
Posts: 98
Joined: Feb 2010

You definitely need to get the tube removed as soon as possible to help your throat muscles not deterioate anymore than they have. However most doctors will tell you once you start intake by mouth that you must maintain your current body weight for a period of time before removing it. I to had become dependant on mine as I did not want to swallow. It is a hard decision but you must make it on your own and not your family. Our families love us and take care of us but we know our bodies and we must listen to what they say to us. May sound corny but that is just the way it is. I hope if you have lost a lot of weight that you are able to gain it back. I lost fifty pounds from 194 lbs. to 144 lbs and a lot of this was pure muscle. I have gained 24 lbs. back and now maintaining about 168 lbs. after three years. Good luck and God Bless.

davidgskinner's picture
davidgskinner
Posts: 81
Joined: Dec 2009

I got mine out as soon as I could, but that was me. One thing about this cancer stuff is that it reminds you in such a forceful way how much you depend on others for advice and expertise. But in this instance, you get to do what you want to do.
Another issue this brings up is the notion that if you look "back to normal" on the outside, people sometimes expect you to be your old self and "just get on with it." But it doesn't work that way, at least it doesn't for me.
So, since we are all offering advice that you can pick and choose, I would say just do your best to eat and swallow a bit more each day, and get the PEG out when you're good and ready.

Tanager75
Posts: 86
Joined: Aug 2009

I had to maintain my weight for 3 weeks without using the tube before they would take it out. I was able to finally do this but I had to hold my nose and guzzle the high calorie ensure. I'm still working on taste at about a year.

mark

lady4darknight's picture
lady4darknight
Posts: 90
Joined: May 2010

Survivor, I agree with everyone here that while our families all mean well,only you can decide if you are ready. Are you never using it? Are you eating everything by mouth? Are you maintaining your weight? These are all things to consider. I have managed to start eating since the 4th of July very slowly at first and now I eat 5 small meals during the day and lots of pudding and ice cream. The only thing I do with mine is flush it and it has become a pain so I am hoping to have mine removed next week. In the back of mind I think about the fact that I might not be able to eat one morning and panic with out it, but I know that I became dependent on it during all that time I couldn't eat. And I really want to go floating at least once this summer..lol. When your ready, you will know. Discuss your fears with your doctor too. Best to you.

Debbie

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

31- my Drs. all said I could have my PEG removed some 6-months after my last rad, as I wasn't using it at all. I told each of them I was gonna keep it until after the results of my 1-year PS/CT, and not a one of them had a problem with it. And, yes, I did get it out in early-May. Active treatment is over, 31, so now you rule the game.

As for taste, I would advise you go to work trying different foods- to find the ones's you can make a go of it with. Over 15-months after my last rad: Breakfast for me is 1 1/2-bottles of Ensure (I have to get-up at 4:25 AM to get to work by 6), a salad, or cheeseburger and ice cream for dinner, and an awesome chef-style salad for supper is my diet, with snacks here and there at work. New taste buds demand new foods to be the ones that taste the best.

Good luck, girl

kcass

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Hi Survivor,

Sound like you have been doing well for the Doctors to think you're ready to lose the PEG. I had reasonable intake by mouth by the time I had mine out, and didn't 'need' the tube though I did continue to use till the last day as I was pumping 'Vital Greens' in with the tube which is a great 'Super Food' with very utilizable phytonutrients etc. It is a bit nasty to take by mouth.

Bottom line is you need to be ready. If you are not tell him you wan t keep it another couple of weeks or a month whatever. Just say 'No'.

Stay well.
Scambuster

survivor31's picture
survivor31
Posts: 72
Joined: Apr 2010

thanks everyone I choose not to get it removed yet I have to be sure that I can eat breakfast luch and dinner without it and right now im only eating one meal a day but him gonna go into what i used to call warrior mode wnen i was going through tratment to force myself to go through the agonizing treatment and apply that same attitude twords eating thanks again guys ur the best bless u all

survivor31's picture
survivor31
Posts: 72
Joined: Apr 2010

thanks everyone I choose not to get it removed yet I have to be sure that I can eat breakfast luch and dinner without it and right now im only eating one meal a day but him gonna go into what i used to call warrior mode wnen i was going through tratment to force myself to go through the agonizing treatment and apply that same attitude twords eating thanks again guys ur the best bless u all

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

I can appreciate the 'warrior mode' but as long as you have the tube, it's not necessary. My advice is to take it easy on yourself. The tube is there so you wont have complications from poor nutrition, the likelihood of which is greater if it is removed before you are able to eat properly.

The trauma of this treatment demands our attention to the details of recovery. We've been brutalized by chemo and rads which caused significant damage to these fine swallowing structures (about 50 muscles involved) and it will take time to get back to doing what comes naturally.

I have a problem with a stricture which wont allow food down or air up, yet I'm not too anxious to get the PEG out. I'm ok with waiting.

Best,

Mick

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