New PEG tube for life

Papaw13
Papaw13 Member Posts: 13
in Head and Neck Cancer #1

Thank you guys so much for sharing your knowledge on the workings of this site and your experiences with the PEG. 

I have another question about what you all use and 2 Cal. Has anyone tried 2 Cal and it didn't agree with them? We tried it because we needed more calories (my husband continues to lose weight). However, he could never take more than 4 cans a day and it made him feel queasy and his tube was bubbling and spraying out some when we would prepare for the next feeding. We have stopped using the 2 Cal and switched back to Boost Plus and are not experiencing any of those issues. My husband is up to 5 Boosts now. He was taking 7 Boosts, until his last surgery a week ago. I think 3 surgeries in 2 months was too much!   

Comments

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #2
    He can survive on these calories but

    He will stay pretty skinny.  Five boost plus equals about 1800 cal, not enough for weight  gain.  i have a similar problem.  I dont have a permanent peg yet, though one may be in my future.  I'm pretty much on thick liquids for diet, however, being unable to eat substantial solid food.  Like him, at a certain density, I get all kinds of gas on boost.  Enough to bother my wife, the kids, the dogs, maybe even the neighbors.  Where is he at with just running food through the blender and putting down the tube?   My gut processes that food just fine, no tolerance problems at all.  And frankly, its a lot cheaper than the boost.  I suspect you'll have to do something like this to get around the gut issues you are seeing on the 2.0.  Other people with permanet PEG's may have other ideas.

     

    Best

     

    Pat

  • jim and i
    jim and i Member Posts: 1,788 Member
    #3
    prescription food

    You do not say if you have insurance or not. My husband was put on a peg tube before treatment and will probably be on it for life. He has always been on prescription food. It comes in cans, is nutritionally balanced and is delivered by a medical service. It is the only thing that kept him alive. The nice thing is the monitor the weight of the patient  to keep your doctor informed. They also provide a machine like an IV pole that can feed as fast or slow as the patient can tolerate. The pump can also operate off a battery so you can move about. They provided us with a backpack that the bag and pump fit into a backpack for going out. Jim eventually was able to go to bulous feedings which uses a big siringe to push two cans in about 10 minutes. Jim's oncologist signs the prescription when needed and is insurance pays all but a small deductable. I would be happy to answer any further questions, just PM me.

    Debbie

  • robswife87
    robswife87 Member Posts: 209
    #4
    jim and i said:

    prescription food

    You do not say if you have insurance or not. My husband was put on a peg tube before treatment and will probably be on it for life. He has always been on prescription food. It comes in cans, is nutritionally balanced and is delivered by a medical service. It is the only thing that kept him alive. The nice thing is the monitor the weight of the patient  to keep your doctor informed. They also provide a machine like an IV pole that can feed as fast or slow as the patient can tolerate. The pump can also operate off a battery so you can move about. They provided us with a backpack that the bag and pump fit into a backpack for going out. Jim eventually was able to go to bulous feedings which uses a big siringe to push two cans in about 10 minutes. Jim's oncologist signs the prescription when needed and is insurance pays all but a small deductable. I would be happy to answer any further questions, just PM me.

    Debbie

    Maybe a slower rate

    of feed. 

    Does he have just gravity bags or does he have a pump.

    If Rob was fed to fast it made hi sick to his stomach. 

    We also added Benecalorie to his Ensure Plus drinks for an extra 330 calories per drink. 3 times a day.

    Sandy

  • Hondo
    Hondo Member Posts: 6,636 Member
    #5
    Hi Papaw

     

    Sometimes you need to cut it with water so something else. I remember when I was using the Carnation Instant Breakfast which is about 512 cal it would make me sick to the stomach. But after I started to mix it with other stuff I was able to handle it with no problems.

     

    Take Care

    Hondo    

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    #6
    Peg Tube

    My husband is unable to swallow anything and has a PEG tube.  He gets his nutrition thru his insurance (Medicare) and it is Nutren 1.5.  It has 375 calories a can, he uses 6 a day.  It is gluten and lactose free.  He has no problems with this and has been on it now since May 2012.  He has always been very underweight and the doctors were concerned when he was first diagnosed with cancer due to his weight.  He did lose close to 20 lbs the first time around with radiation, chemo and surgery.  But since that time, even though he has undergone a second round of radiation and chemo he has maintained his weight and hasn't lost anymore, but then again hasn't gained any either.

    Sharon

  • TracyLynn72
    TracyLynn72 Member Posts: 839
    #7
    Ladylacy said:

    Peg Tube

    My husband is unable to swallow anything and has a PEG tube.  He gets his nutrition thru his insurance (Medicare) and it is Nutren 1.5.  It has 375 calories a can, he uses 6 a day.  It is gluten and lactose free.  He has no problems with this and has been on it now since May 2012.  He has always been very underweight and the doctors were concerned when he was first diagnosed with cancer due to his weight.  He did lose close to 20 lbs the first time around with radiation, chemo and surgery.  But since that time, even though he has undergone a second round of radiation and chemo he has maintained his weight and hasn't lost anymore, but then again hasn't gained any either.

    Sharon

    Nutren

    I also had Nutren, but mine was 2.0 and I had to use 3 a day.  I got through home healthcare and my Medicaid paid for it.  I had 5 cases delivered right to my door.  My rad onc ordered it for me. 

  • Papaw13
    Papaw13 Member Posts: 13
    #8
    longtermsurvivor said:

    He can survive on these calories but

    He will stay pretty skinny.  Five boost plus equals about 1800 cal, not enough for weight  gain.  i have a similar problem.  I dont have a permanent peg yet, though one may be in my future.  I'm pretty much on thick liquids for diet, however, being unable to eat substantial solid food.  Like him, at a certain density, I get all kinds of gas on boost.  Enough to bother my wife, the kids, the dogs, maybe even the neighbors.  Where is he at with just running food through the blender and putting down the tube?   My gut processes that food just fine, no tolerance problems at all.  And frankly, its a lot cheaper than the boost.  I suspect you'll have to do something like this to get around the gut issues you are seeing on the 2.0.  Other people with permanet PEG's may have other ideas.

     

    Best

     

    Pat

    Thank you Pat

    Thank you Pat. Our journey began a month ago with surgery to remove his tongue and a few other things. He started with a nose tube, until a week ago and then he got his PEG tube put in. So, I don't know when we will be able to use real food because the doctors instruct us to only use Boost, Ensure, etc... Do you know when? We stopped using the 2 Cal and the issues went away. He can tolerate the Boosts and Ensures better. This is all very scary right now. I enjoy reading everyone's positive comments. Good to know it can/will get easier. 

  • Papaw13
    Papaw13 Member Posts: 13
    #9
    jim and i said:

    prescription food

    You do not say if you have insurance or not. My husband was put on a peg tube before treatment and will probably be on it for life. He has always been on prescription food. It comes in cans, is nutritionally balanced and is delivered by a medical service. It is the only thing that kept him alive. The nice thing is the monitor the weight of the patient  to keep your doctor informed. They also provide a machine like an IV pole that can feed as fast or slow as the patient can tolerate. The pump can also operate off a battery so you can move about. They provided us with a backpack that the bag and pump fit into a backpack for going out. Jim eventually was able to go to bulous feedings which uses a big siringe to push two cans in about 10 minutes. Jim's oncologist signs the prescription when needed and is insurance pays all but a small deductable. I would be happy to answer any further questions, just PM me.

    Debbie

    No insurance

    No Debbie he does not have insurance. We are purchasing Boost Plus and Ensure.

    Thank you,

  • Papaw13
    Papaw13 Member Posts: 13
    #10
    Hondo said:

    Hi Papaw

     

    Sometimes you need to cut it with water so something else. I remember when I was using the Carnation Instant Breakfast which is about 512 cal it would make me sick to the stomach. But after I started to mix it with other stuff I was able to handle it with no problems.

     

    Take Care

    Hondo    

    Thank you

    Thank you Hondo. Yes, we have switched to just Boost Plus and Ensure and we are thinning it with water. So far he seems to be tolorating it well. I hope one day we will be able to offer encouragement to others as you and so many others do. Since this is all new to us we aren't there yet. But, we do enjoy reading everyone's positive posts. 

    Take care

     

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #11
    Papaw13 said:

    Thank you Pat

    Thank you Pat. Our journey began a month ago with surgery to remove his tongue and a few other things. He started with a nose tube, until a week ago and then he got his PEG tube put in. So, I don't know when we will be able to use real food because the doctors instruct us to only use Boost, Ensure, etc... Do you know when? We stopped using the 2 Cal and the issues went away. He can tolerate the Boosts and Ensures better. This is all very scary right now. I enjoy reading everyone's positive comments. Good to know it can/will get easier. 

    If there are no problems with the PEG

    Like infection, bleeding, aspiration, there is likely no reason to delay any of this.  I personally think sometimes inertia and lack of a progressive plan on the part of health care teams delays this sort of progress.  Ask the question straight up of them, soon.  To get from just ensure to blending your own there is a learning curve.  You will need a special blender, because everything needs blended to the consistency of ensure.  You will need a series of consultations with the nutritionist, and to do some nutritional homework.  All of this will seem a little overwhelming for a moment or two, but you have lots of time to learn all the nuances.  The sooner you guys are able to take back some control over this, the better you are going to feel.   You can live forever on boost, but it isn't a lot of fun.   BTW, if you are stuck buying Boost Plus or Ensure Plus, the cheapest price I have found is on ebay.  There is a seller there that ships cases nationally for about 1.14 per 8 ounces, including shipping.  Far cheaper than local prices.

    Pat

  • Papaw13
    Papaw13 Member Posts: 13
    #12
    Hondo said:

    Hi Papaw

     

    Sometimes you need to cut it with water so something else. I remember when I was using the Carnation Instant Breakfast which is about 512 cal it would make me sick to the stomach. But after I started to mix it with other stuff I was able to handle it with no problems.

     

    Take Care

    Hondo    

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  • Papaw13
    Papaw13 Member Posts: 13
    #13
    Hondo said:

    Hi Papaw

     

    Sometimes you need to cut it with water so something else. I remember when I was using the Carnation Instant Breakfast which is about 512 cal it would make me sick to the stomach. But after I started to mix it with other stuff I was able to handle it with no problems.

     

    Take Care

    Hondo    

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  • Papaw13
    Papaw13 Member Posts: 13
    #14
    Hondo said:

    Hi Papaw

     

    Sometimes you need to cut it with water so something else. I remember when I was using the Carnation Instant Breakfast which is about 512 cal it would make me sick to the stomach. But after I started to mix it with other stuff I was able to handle it with no problems.

     

    Take Care

    Hondo    

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  • Papaw13
    Papaw13 Member Posts: 13
    #15
    Hondo said:

    Hi Papaw

     

    Sometimes you need to cut it with water so something else. I remember when I was using the Carnation Instant Breakfast which is about 512 cal it would make me sick to the stomach. But after I started to mix it with other stuff I was able to handle it with no problems.

     

    Take Care

    Hondo    

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  • Papaw13
    Papaw13 Member Posts: 13
    #16
    Hondo said:

    Hi Papaw

     

    Sometimes you need to cut it with water so something else. I remember when I was using the Carnation Instant Breakfast which is about 512 cal it would make me sick to the stomach. But after I started to mix it with other stuff I was able to handle it with no problems.

     

    Take Care

    Hondo    

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