Feeding Tube

[Bert Kowaltschuk]

OK Group. All of you who have experience with feeding tubes lets hear the pros and cons. Dr. Strong has suggested I consider having one put in even though I am still able to eat most things. Problem is the fatigue factor. I tire myself out eating because chewing takes forever. Anyway I am leaning toward saying yes to having one put in. What do the rest of you think??

Bert K

[jimO]

Hi Bert
I got feeding tube back in April and I'm glad I did .I can still eat some food but like you fatigue became an issue, and thin liquids was choking problem so I wasn't getting enough water which was causing other difficulties (which we don't need anymore of)but now with feeding tube I'm getting water, I take all my medication through the tube which is extremely handy and now have enough energy to enjoy one meal and a few snacks a day if I choose to(but don't tell Dr.I'm still enjoying a bit of food) I was a bit leery about getting it but it has been helpful and I don't regret getting it. Just keep in mind getting a feeding tube doesn't mean you have to stop eating if you're still able, it just gives you more options, if you do get it I'm sure you will find a good balance between tube feed and eating by mouth (if still able) to make things more bearable for you.
Hope this helps in your decision.

Jim

[Bert Kowaltschuk]

Thanks Jim and Carol for your replies.

Your input sounds really sensible, Jim. I'll book myself in for the procedure.

Maple sap is running well here in Colpoy's Bay. My wife is making maple syrup which I still love with pancakes. There are some things I will definitely miss not being able to eat.

Take care,

Bert

[TBear]

Hi Bert:
My wife had her PEG installed as she was also having difficulty swallowing. It kept her from losing weight and becoming more fatigued and certainly speeded up meals! (breakfast had started to run into lunch and then into dinner) I was also able to feed her food that she liked... in limited amounts (drove the nurses crazy!) and, of course, her wine intake wasn't diminished. I once offered to send that down the tube too but it was met with more than a little resistance.
The bottom line, Bert is that you don't have to get all of your food and drink down the tube... just the stuff that maintains you... and if you've ever tasted a can of Ensure you'd know it's better that way! It will free up your day a bit more, and if your caregiver has a sense of humour, you can still have wine and beer.

[Bert Kowaltschuk]

Thanks TBear. I like the idea of putting wine down the tube especially since we have copious amounts in the wine cellar.

Bert

[Carol Deboer]

Hey Bert,

I like wine !!! So, if you have such a surplus, mmm, send some this way. ha... Henry loves wine too. Made our own for years. This is the first year we did not. I like white, Henry loves red. We have a little slurp of the nectar a couple times a month to get all the cobwebs out. ha... I'll be waiting for my shipment. lol

Hugs, Carol D.

[kd]

Hi there,

I just wanted to check in and ask when is it time to consider a feeding tube? We looked into a Barium Swallowing Assessment to see if everything was going okay but the Doctor ruled it out as there may be a risk of choking?? Well this is my concern without the assessment. What is the normal practice for assessing if a feeding tube is needed?

Thank you

KD

[TBear]

Hi KD:

Usually a speech therapist does the tests... but if swallowing is hard enough that choking is a serious threat, then feeding is probably already a problem. If it takes an unusually long preiod of time to eat a meal, and if they have lost or a having difficulty maintaining weight, then maybe it's time.
All the barium swallow is going to tell them is whether they have the muscular control to get the food from the back of the throat down the pipe. Check it out with the Dr.

Good Luck

[PeterG]

I'm new to this forum, but it looks really great. My mother has bulbar ALS, and it has been progressing slower than average, which we are very grateful for. She can still eat if food is pureed, so she doesn't seem interested in a feeding tube, but it takes a lot of work for her to eat enough to keep her weight stable. Is there any disadvantage to having it done before she really needs it? It'd be great to hear from people about what it's like to have one.

Thanks!
Peter

[Granny]

Hi Peter,
Welcome to the forum. I, too, have Bulbar ALS and my doctor highly recommended getting a feeding tube sooner rather than later. I guess it is easier that way. I got mine in September and did not use it until January. It was a positive thing for me. I can still eat some pureed foods, but don't have to worry about getting enough nutrition.
On another thread titled "Rilutek questions", Bobbyb listed several interesting web sites, including one that has information and personal stories about feeding tubes. You might find that helpful.
The web site is http://tpals.org

[TBear]

HI Peter:
We decided on the g-tube when meals started overlapping! Breakfast took 3 hours to complete followed immediately by dinner. That and of course the weight loss. I believe that it could have been done earlier in our case.
Good Luck

CHeers

T.

[Patsy]

Hi;
it is best that we persons with ALS not wait for the swallowing/eating/chewing/weight loss problems! I had mine done last year and now looking back, I wish had done a whole lot earlier!
Patsy

[TBear]

The thing is Peter, that having the feeding tube doesn't negate the fact than you may be able to have some stuff orally... although with careful consideration. Imagine that a glass of your favorite wine or beer is not so satisfying taken down the tube. My wife had a glass of wine with me every night. She wore as much as she got down, but it was something that she enjoyed and did not have to give up.
Good luck

T.

[PeterG]

Thanks so much to everyone who replied. It's great to hear everyone's stories. The http://tpals.org is especially good.

Peter

[MLECOLE]

My husband had his feeding tube replaced with a MIC-KEY Button a few weeks after his procedure. He really prefers having this instead of having a tube taped to his belly. I found a good picture on this sight that shows what one looks like.

http://www.hands-on-learning.com/medical_devices.htm

[kneecey53215]

my aunt was diagnosed w/als. she had a feeding tube put in even thought she does not need it yet.

she had read stories of people who went in to get one & their body rejected it because they had waited too long. the illness had progressed to quick.

from what she had said, you can live much longer if you have one.
my suggestion would be to get one before you may need it. :)
take care all! i pray for you everyday :)