Peg Tube

I wonder if you could write to me if you have had experience with a PEG tube.  My father has it inserted already, and his trial run of radiation is tomorrow.  If all goes well, radiation (seven weeks) and chemo (weekly) start Monday.

This afternoon he and his "lady friend" are going to the infusion place to be instructed in the use of the feeding tube and how to keep it clean.  This worries me tremendously because between them they can hardly make toast.  I know that it is important to be upright during the feedings and to remain upright for an hour or so afterward. 

I seriously doubt my father's ability to handle this.  And she is no better.  I am hoping that the people who do the instructing will see that these are two people who are incapable of this responsibility and that they will recommend that they hire a nurse. 

What I would like to know now is what exactly is involved.  Can you elucidate me?

Is it really complicated? 

Thank you so much.

Maggie

I had a PEG for several months while I underwent radiation and chemo.  It wan't much of an issue for me.  The main thing is to keep the area around the insertion point clean and to flush the tube after use.  The hardest part for me was finding the energy to actually get up and use it.  I was assigned a nutritionist and she got me a pump that I used at night.  All I had to do was fill it up and connect it to my PEG.  It would pump the nutrition in while I slept.  It was not a problem for me either lying down or sitting up, so I don't know whether or not being upright is anything to worry about.

 It is important that he use it.  He will reach a point when he won't have an appetite and will have no desire for food plus his energy level will decrease to the point that he may ignore it.  Weight loss is a real concern during treatment and everything should be done to ensure that he gets enough nutrition.

If he and his friend aren't able to manage it, and you are unable to be there yourself, I would certainly consider a nurse or someone else to help them out.

Glenn 

 

On 7/26/2007 Surveyor wrote:

I had a PEG for several months while I underwent radiation and chemo.  It wan't much of an issue for me.  The main thing is to keep the area around the insertion point clean and to flush the tube after use.  The hardest part for me was finding the energy to actually get up and use it.  I was assigned a nutritionist and she got me a pump that I used at night.  All I had to do was fill it up and connect it to my PEG.  It would pump the nutrition in while I slept.  It was not a problem for me either lying down or sitting up, so I don't know whether or not being upright is anything to worry about.

 It is important that he use it.  He will reach a point when he won't have an appetite and will have no desire for food plus his energy level will decrease to the point that he may ignore it.  Weight loss is a real concern during treatment and everything should be done to ensure that he gets enough nutrition.

If he and his friend aren't able to manage it, and you are unable to be there yourself, I would certainly consider a nurse or someone else to help them out.

Glenn 

Thank you Glenn.  No I am not able to be there as I live in MI and he lives in AZ.  I am going to call my father tonight to see how the instruction went.  He tends to take all his paperwork home and promptly lose it, to say nothing of reading it.  I only hope he has been keeping the tube clean to this point.  He has had it checked once by the doctor who put it in, and he said everything is fine.

I know the weight loss is a big concern, and this also worries me considerably, as he hasn't been eating at all well up to this point.  I am so afraid he is going to lose a lot of weight, to the point that he will be medically unstable.

Thank you for writing.  I appreciate it very much.

Maggie

Maggie, Glenn told you pretty much the way it is with a peg tube. It was first a shock to me that I was going to need one.  However, seriously it has been a god sin for I wouldn't have lived w/out the tube.  I had 39 rad. treatments & two chemo's.  I finished my last treatment last June, and will probably get rid of the pet tube next month.  I have learned a lot of people get themselves in serious trouble getting rid of the tube to soon so he does need be in any hurry.  Once he get use to using the tube it is so bad.  By the way I lost 35 lbs. along with my appetite.  His energy level will not be very good for think that just goes along with the treatment.  You mentioned he is in Arizona, and just wondering if he is getting treatment at Mayo.  I had never been under the weather so this was a big shock to me.  My disease was bad so with treatment and your father doing what he is suppose to do he should be all right. You might suggest to see him he can purchase a product called Nutren 2.0 for it has 500 calories which is easy to use in the tube. Sounds like he will need approximately 3000 calories daily to keep him on track.  If he can't purchase it locally, then it can be ordered thru the internet.  I found it to be the best.  Tell him if possible try to keep as active as possible, and this will also help keep his mind off of the disease.  It will probably get a little rough towards the end of treatment so just keep a positive attitude.  I couldn't swallow for three months after treatment, but gradually it is improving.  His will all depend on where the disease is localted and how severe.  If you can I would like to hear how he is doing later with the treatment.  I am in Branson, Mo. but my wife was rasied in Phoenix.  To hot for me out there in the summer.  Roger

 

On 7/27/2007 Skippy wrote:

Maggie, Glenn told you pretty much the way it is with a peg tube. It was first a shock to me that I was going to need one.  However, seriously it has been a god sin for I wouldn't have lived w/out the tube.  I had 39 rad. treatments & two chemo's.  I finished my last treatment last June, and will probably get rid of the pet tube next month.  I have learned a lot of people get themselves in serious trouble getting rid of the tube to soon so he does need be in any hurry.  Once he get use to using the tube it is so bad.  By the way I lost 35 lbs. along with my appetite.  His energy level will not be very good for think that just goes along with the treatment.  You mentioned he is in Arizona, and just wondering if he is getting treatment at Mayo.  I had never been under the weather so this was a big shock to me.  My disease was bad so with treatment and your father doing what he is suppose to do he should be all right. You might suggest to see him he can purchase a product called Nutren 2.0 for it has 500 calories which is easy to use in the tube. Sounds like he will need approximately 3000 calories daily to keep him on track.  If he can't purchase it locally, then it can be ordered thru the internet.  I found it to be the best.  Tell him if possible try to keep as active as possible, and this will also help keep his mind off of the disease.  It will probably get a little rough towards the end of treatment so just keep a positive attitude.  I couldn't swallow for three months after treatment, but gradually it is improving.  His will all depend on where the disease is localted and how severe.  If you can I would like to hear how he is doing later with the treatment.  I am in Branson, Mo. but my wife was rasied in Phoenix.  To hot for me out there in the summer.  Roger

Thank you Roger.  His cancer is at the base of the tongue very far down, and is stage IV.  The doctor has stated his prognosis as poor.  My father is 87 years old.  I have been reading around online like crazy of other people's stories and am getting a picture of what is ahead for him.  I do not think he is at all aware of how unpleasant this will probably become.  He does have a positive attitude, but it may be more a lack of information than anything else.  He thinks radiation is going to be "a walk in the park." 

He only weighs 141, so if he should happen to lose 35 pounds I think he'll be in trouble.  I mean, a 6' tall man weighing 110?  And I realize he could lose a lot more.  He is not someone who pays much attention to the details of his care, and this really worries me.

No, he is not being treated at Mayo, although I did suggest that to him.  His doctors are in Tucson, where he lives, and are associated with the University of Arizona there. 

Thank you for writing.  I appreciate you for taking the time.

Maggie