Appetite after Peg Tube

My mother just had her Peg tube placed last Wednesday (March 31). This has been so hard to accept for her and me both. Trying to learn what to do with meds and her feedings have been challenging. The nutritionist had said she should take in 3 to 5 cans a day but that if she feels like there is something she can eat she can. She currently just has no appetite and feels like her stomach is full. Yesterday she only took one can and ate a little White Castle hamburger.

Does it take a little while for the appetite to come back or could this be the disease also that is causing a loss of appetite? We have been using the gravity bags and also the syringe, what seems to work the best.

I try to remain positive about all this and I do in front of her, but seeing her go thru this is just so hard.

Thanks to all for your support--God Bless

I am so sorry. Web is always hungry! Keep giving her at least the 3 cans/day plus the additional water. Have you tried a continuous feed? That may be easier as it is smaller amounts but continuous. YOU ARE DOING A FABULOUS JO for your Mother! hugs. Kay Marie

When my mother's peg was put in they based her formula requirements around how much regular food she was eating. At that time she had 3 small meals a day (nutritious meals with vegetables and beans and wholegrain cereals) and the nutritionist said she was to have 2 peg feeds a day. Then as my mother's meals got smaller they increased her peg feeds to 3, then 4.

I think that if your mother wants to eat solid food, and it makes her full, then it's ok to skip a peg feed or reduce it to half. If she loses weight then you would be worried about this, but if you can weigh her weekly and she is not losing, then you're ok. You do have to make sure she is getting enough water in - at least 6 cups a day either by mouth or via peg. That's really important.

sesl

indigosd said:

I am so sorry. Web is always hungry! Keep giving her at least the 3 cans/day plus the additional water. Have you tried a continuous feed? That may be easier as it is smaller amounts but continuous. YOU ARE DOING A FABULOUS JO for your Mother! hugs. Kay Marie

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They did mention using the pump for continuous feed but my mother is not ready for that emotionally at this time. She is still struggling with the PEG tube in general. Maybe within time that will get better. Today the nurse called and based on the results from a breathing test done the other day they are wanting her to wear a bipap machine at night, she really did not like this idea. Sometimes when I think about everything I really just want to scream.

Hi :
I am in the same position as you. My mother just got a Peg tube in on April 30, 2010 and for the first few days she was literally crying with pain. The doctor checked it out and said it was healing fine and he did not understand the reason for the pain. She is struggling with the tube and does not like to use the cans, andstill tries to eat but with great difficulty. My mother is only 63 and this disease has aged her and she looks 80. In the last 1.5 years she has totally lost her ability to speak. She has some frontotemporal dementia symptoms also so communication is extremely difficult. It is sooo hard to see her go through this.

I wish you all the best as it is also hard for the caregivers to see their loved ones go through this and feel totally helpless.

Thanks for listenning.

How are things going with your mother? We have good days and bad days. Mom has times where we still like to act silly and laugh but there are other days where she can get a nice card and she will just cry, that is so hard to take. Also she will see a commercial on TV showing food and just wish she could eat what she wants. She has now had a urinary tract infection she has been fighting and has not felt good, I am always afraid that she will not be able to fight something off like this. She also has a lot of weakness and headaches.

Some of this probably just does not make sense but sometimes you just have to release what is on your mind.

God Bless everyone!

NHAMM-

Did she get the bipap that you mentioned back in April?

She did get the machine but will not use it at this time. The Medical Center people came out last week and brought a different type of tube that fits under her nose instead of her whole head. She tried using it the first night and said that it seemed to suction her mouth together. I keep hoping within time she will try again so mayble it will make her feel stronger.

Thanks

My husband was tolerating one and half can a day. Slowly we built it up and now he is taking 3 cans a day. He is still able to drink some milk with some difficulty. He does not like the gravity drip and prefers the syringe.

ghii

hello I sorry your mother and you having such problems. My problems are simalar to your mother .Mine stared with cramps in my neck and then i had problems with swallowing .so i requested a tube because no matter how much i ate i continue to loose weight .
now with my tube i do 5 cans aday ,i started out doing the feeding only at night but with the bipap at night it seem to much, now I do 3 cans in the morining and two can in the evening watching tv or reading. I do most of the stuff with my feeding my self it make feel better than having someone else do it. my husband sometimes has to open the cans for me. i also find that i dont have much appetite but that doesn't stop from eating ice creame and when we go out i order desert. good luck I know you cando it.

My father passed away with als a couple of months ago. We found out toward the end it is very difficult to know exactly what to do. He never talked about his appatite but he new he had to take 8 cans a day and so he did that. Appatite is something to consider but I think it may just be coloric intake you are looking for. It is hard not to have the taste of food but if she wants to continue on with her living, she will have to take the recommonded calories. My father ended up not wanting to eat anymore because he just did not want to go on. It is really up to her to decide what she wants to do and you are not in control of that. He did not experience pain with his feeding tube.

My mother is currently doing three cans a day, she also prefers the syringe. She does sometimes eat pudding, milkshakes and experiments with some soup that is thick. She just does not feel good most days, has spells where she feels weak,

i cant seem to get 3 cans into me and i never feel full or empty so its so hard i have progressive bulba palsy so my neck and all in it has been affected i try and sip wine but often goes down my lungs so it puts me off eating by mouth but i miss the taste of food badly and resent not being able to just get something to eat when i feel like it :{ i am loosing weight but i thought that was all part of MND/ASL. anyone else find they dont feel hungry or full anymore on the peg?:roll:

all so i have to take the food in slow so gravity slow feeding is best as it travels up and into my lungs if i am not careful sorry just forgot that bit hehe

My hubby grinds my meds to a past then syringes them into my Peg then flushes after its easy you have to open capsules and get magnessium in powder look for liquid meds too all helps gettting it into the Peg hehe