PEG feeding tube

[Kimmyliz12]

I attended an appointment to discuss having a feeding tube put in. I still manage some food and use liquid food supplements. My weight loss has slowed down. Ì just don't know what to do. Grateful for any advice and experience of having a feeding tube. Many thanks Kim

[enjoysalud]

Write PEG in the "search healthunlocked" bar.....top of this page on the right. MANY posts will come up.

Just like PSP that does not follow a straight road (among those who have been DX), so too the experience with the PEG.

Whatever decision you make, It will be the correct one for YOU.

Los Angeles, CA, USA

[Hidden]

Hello kimmyliz12

I know from only my husband wishes is that he had said no to peg,it's a very personal decision.my understanding is it dose not prolong quality of life but rather interfere with natural quality of dying.only my and my husband opinion.He is in his 10th year of PSP and quality of life is still somewhat good.

Not sure if this help.you and you alone only can make this decision.please do it sooner then later.

Good health to you.

Dee in BC

[Caz49]

Hi Kimmyliz12,

My husband and I talked about him having a PEG and after a lot of investigation etc. decided to have one put in. He was happy once it one done as he wasn't choking any more which distressed him immensely.

I wouldn't eat in front of him but he said it didn't worry him but I still would go out to eat.

He would ask me what I had, what it tasted like and what it smelt like. I felt really dreadful, and would say things like - not as good as I thought it would be. If I had coffee, he would ask to smell it . So I ordered coffee flavoured PEG food and as I put it through would let him smell my coffee. He liked me doing this.

It is a very individual decision, but we were happy we made our decision.

Wishing you well,

Caz

[sammy90210]

Hi Kimmy - first of all I wish you good health

My dad had a PEG tube out put in but he was at a very advanced stage and it just prolonged his suffering, in my family's opinion

If you wrote this message yourself it means you have thankfully excellent cognition and live a decent quality of life - so if eating food is almost impossible i.e. it causes choking etc then it could he good idea

If your weight is being managed well, then I would suggest not to go for it - any surgery or trauma or illness can and usually does take a patient a stage down in their dementia - and the PEG tube surgery itself or an infection from that could cause your condition to become worse (once a patient's dementia stage advances, it can almost never reverse, unless it's the side effect of a medicine being added or removed)

Plus, God forbid, if you do have a PEG tube and later you want to have it removed but your cognition is too poor to convey it, you will be trapped...

I am really sorry if I sound mean but that could be the reality... Please search for PEG in this forum and read the reviews - it's a very mixed opinion and it can go either way

Best wishes and plz feel free to keep asking for clarifications, we are all here to help in any way possible

[Kimmyliz12 in reply to sammy90210]

It's wierd that only thing affected is my movement and speech not mental capacity

[Javan]

PEG was the best thing for the old bag, she has had it for over three years and i think it has kept her out of hospital.

[Christine47]

My husband's PEG was installed in March. Athough he still eats regular food, but with occasional swallowing challenges, the gradual weight loss was disturbing. Since he has had it, he has gained weight and looks more like his old self. He gets a very good brand called Kate Farms Peptide 1.5 with 500 calories per serving. There are others like it that are organic, gluten, soy, corn and milk free and this one was recommended by his nutritionist. He is able to manage his blood sugar with it, unlike other commercial brands. He is now able to eat for pleasure. Another positive is hydration. He is now able to get adequate hydration via the PEG.

[Kimmyliz12]

Thanks for replying I still can't decide really helps to hear a personal experience