what is a feeding tube?

[gilly]

hi guys.

can anyone explain to me what a feeding tube actually is... how they put it in... where it goes... etc? i am picturing my aunt with a long tube sticking out of her mouth that runs down her throat? can she use it from time to time and then take it out when she can / wants to eat on her own? i don't quite get it. does it travel around with you easily? what can you eat?

sorry for all the ???????????????? i am just wondering what's in store for us. she went to a speech patholigist today. hoping to get a little more help talking properly. it's very hard to understand her and she said water is almost impossible to swallow as is cheesecake (that's a real tragedy!). i don't understand how both are hard to swallow with such different consistancies.

thanks in advance for any info.
love nicole

[COlisa]

Hi Nicole,
Here is a pretty good overview of PEG tube. There is even a little picture so you can see how it works.

http://www.mdausa.org/publications/als/als4_5.html

Hope it helps.
Lisa

[gilly]

thanks lisa.
went to the site and it was very helpful. i hope my aunt is always able to eat a little something without the tube now and then. would hate to see her miss out on things like ice cream and pudding!

[Granny]

Hi Gilly,
I had a feeding tube inserted in September 04 and did not start to use it for food until Christmas of that year. I am still eating puddings, yogurt and some thick shakes, so your aunt probably has some time left yet to eat her favorite things.
For me, the tube has been a positive thing.
I have had my tube outside the stomach changed to a "button" which lays close to the stomach rather than having the long tube sticking out. This canot be done until you have had the tube for awhile. Ask your doctor if this is a possibility.
Hugs and prayers,
Leah

[gilly]

hi leah. thanks for your response. it makes a big difference to know that others have gone through these things and continue to get some pleasure out of some foods like ICE CREAM!!!! i can't imagine a life without ice cream! i admire all of you. so strong and inspirational. thanks again! so glad i found this forum. wish my aunt would join. she doesn't want to know anything about ALS. guess ignorance is bliss?

[lunarruna]

Nicole, my husband got a feeding tube in March--I was so nervous about managing it since he cant use his arms/hands......it has been so wonderful. With a bit of training I quickly learned the ropes of managing it, and it has removed all of the stress we had about eating/choking/meds, etc. He thought he would keep eating, but it was so nice to have it he quickly stopped risking choking and stopped eating completely, he gained weight back too. He does miss eating and hates to see all the TV commercials showing off luscious foods! The tube technology is really slick, they go in pretty easy, and are no problem. So something I dreaded for months ending up being nothing but positive!
good luck to you and your aunt...Beth

[gilly]

oh i know the power of those mean commercials advertising lots of yummy foods. i write tv commercials for a living! we can be brutal sometimes. i'll try to tone it down for your husband's sake!!!

thanks for the info on your husband's feeding tube. i am feeling so much better about the idea already. i know my aunt will not want to do it at first. it will be a tough sell but i love knowing that other people are having such positive experiences with it.

thanks so much! i really appreciate all the replies.

[lunarruna]

It took me about 3 months to talk my husband into the tube, I wasnt pushy about it but I just tried to get him the facts about scenarios. He doesnt want any life-prolonging measures like a ventilator, but with the feeding tubes it is really a quality of life issue. They dont necessarily extend how long someone lives but it removes the tremendous stress around eating eating and choking. I think he finally agreed to get it when we were spending so much time trying to get food into him..I think he may have done it more for me in the end. But he is glad to have it.
Cheers, Beth

[rickmcmahan]

I just had a PEG tube installed two days ago and I have a question or two for those out there who have had them for a while about proper use and maintenance. First of all, I am still able to eat enough food to sustain my health, although I am having problems at all meals and it takes me soooo long to eat. But I had the tube installed before I got to the point where I was weak. My symptums are bulbar onset so I am still able to walk and use my hands with only minor problems.

What is the best way to keep stomach liquids from escaping from the peg tube while I am connecting the syringe of food? Even when I am sitting in my recliner (layed back) I have had leakage during the hookup of the syringe? It appears to me that there is pressure from my stomach cause I always held the tube straight up as far as it would go above my stomach? Any ideas how to overcome this? Do any of you use a clamp on the tube before you pop the plug?

I have experienced during the first 24 hours of having the tube severe stabbing like pain n my left side about 4-6" away from the tube entry point just below the bottom of my ribcage. Have any of you experienced this sort of pain after the tube insert? My Dr. had to give me some strong pain medicine to help the problem? That was no fun I assure you!

I just noticed that my shirt had some stains on it. I found that my tube end plug had been leaking just a little bit onto my stomach area. Ever had this happen? What do I do? The plug is clean and fits firmly.

What is the best way to secure to tube to your skin? What type of tape or pad do you use?

That is it for me for now. I hope some of you can help me learn to deal with these problems. Let me hear from you. Thanks soooo much for your help.

[Leslie]

Hi Rick,

my dad got a peg in April and it has been a great benefit! But there was a little break in period. As for the pain, my dad experirnced pain around the insertion site for about a week. He was pretty uncomfortable but I think he managed with pain meds OK. If the pain is excruciating I would call your doctor.

As for clamping it off before you put liquids in- my dad just clamps the tube off with his hands (folds it back on itself) then places the syringe in the port and lets go of the tube- should avoid any spillage. If he is just putting water in, he put the syringe end on (without the plunger) and lets us all enjoy his "burping" noises!

I'm not sure where the leak is coming from... if the stopper end is tight there may be slight leakage from the insertion site on your abdomen. my dad's took a few days to totally "seal" but he has no problems now.

My dad adheres the tube with a slick little adhesive strip that has a folding attachment that the tube sits nicely in. we get them through the medical supply store- I will have to get back with you on the exact name of it. we used tape for a while but it never worked that well and my dad was cussing every time it had to be changed! i hope all goes well and I will get back with you on the adhesive strips! Take care, Leslie

[lunarruna]

Hi Rick....we have a small plastic 'hemostat' type scissors clamp and I never open the tube without clamping it first...I couldnt believe they didnt show us that in the hospital, our home health nurse showed us...before I had the hemostat I used one of those black binder clips that you clip documents together with!
My husband took codiene/tylenol for two dys after getting it and was uncomfortable, but I dont know about shooting pains--sounds like should check with doctor on that.
It leaks around the point where the tube exits the stomach, and at first we cut a 4x4 gauze dressing and slipped it in there, after it healed up some we just leave it open and I clean out the scabbing that develops each day.
To hold the tube we use "SecureCath" medical tube holders (used to hold catheters in place)....they are an adhesive strip with a velcro strap on it, I apply it to his side and leave it on for about 3-4 weeks no problem, and the tube is held in the small velcro strap.
Cheers, Beth

[Leslie]

rick,

the info. on the adhesive: "FLEXI-TRAX" large 4"X 1.5" made by ConvaTec 1-800-422-8811

Use "Protective Barrier Wipes" (before applying the FLEXI-TRAX) made bt ReliaMed 1-800-409-2848

both are covered by insurance, you will need a script from your doctor

Also my dad does the Carnation instant breakfast drinks-560 calories per can- you have to order these too.

any more questions, we all will try to help! Leslie

[rickmcmahan]

Thank you all sooo much for your info on how to manage my new feeding tube. Thank goodness the pain is gone now and the leakage at the plug end of the tube has been solved. I had a small hole in the tube just belw the plug assembly that was the source of the leak. My doctor had me x rayed after my pain was there to see if the new tube was leaking inside. But it was just fine. He said that some people just have more discomfort than others. It was great to be told about the Securecath and flexi-trax straps to secure the tube to my skin. It gets old using all that tape!!! I will obtain this type of strap soon.

Thanks sooooo much for all of you r responses to help me during this new experience. Without you and others how would we deal with our new life? Hope each and every one of you have a great day. I wish I could give you all a biiiiiig huuuuuug!!!!!!! Rick:smile:

[saras_daughter]

my Mother had bulbar onset ALS, and her PEG tube was just wonderful for her. It couldnt be seen unless she needed it, because it 'tucked' into her bra, etc.

and then towards the end, where she was bed bound, we would clasp the tube (the hinge tube part) onto a pin, (a closed type) and it was always available.

it took like maybe 15-30 mins to get her tube in, and we changed out everything when they got old in the office, it was just in and out in the drs. office.

she maintained her weight, and the 'foods' were just yummy she said.

it was one of the best things in her fight against this disease.

let us know how things go!

(((HUGS))))

big smiles!

[anne]

My mom is at the point were swallowing is getting difficult. The clinic is pushing for her to get a feeding tube. I have been reading the postings on this site which is very helpful. I would like to know if she can feed herself with the feeding tube or does someone have to do it for her. She is very independant, lives at home with my brother but he works during the day. My mom's mobility and fine motor skills are excellent. Thanks again. Anne

[Al]

Hi anne. If she can still work a can opener and pop a lid off a pill container to open the tube she should be ok with feeding herself. My friend was able to do his own. AL.

[anne]

Thanks Al. Happy Thanksgiving. Anne

[Al]

Just in case our American friends didn't know it ,it is Thanksgiving up here this weekend in Canada. Thanks Anne, same to you and your family. AL.

[TBone]

granny,

how long do you have to have the feeding tube until you can get the "button"

[gapeach]

My husband has just gotten one a couple of weeks ago. His motor skills are still fine as he has bulbar mostly. He can use his by himself. It is just a matter of holding the tube up and inserting a syringe and gravity does the rest. It is not difficult to do. Best of luck to you!
gapeach

[Al]

Hi TBone. Welcome to the group. I am not 100% sure but I think I read somewhere that you have to have the tube for 3 months before the button can be done. It may be under feeding tubes in the search feature at the top of the page. AL.