Tube feeding required because of swallowing issues durning and after treatments

RJC-still-vertical
RJC-still-vertical Member Posts: 14
in Head and Neck Cancer #1

Many times folks going through treatments with radiation and chemo will experience swallowing issues and have to have a feeding tube placed. This helped me back in the early 90's when I went through my treatments allowing me to get needed nutrition. It is again assisting me now tgat the treatments I had way back when has now completely destroyed my ability to swallow without aspirating food into my lungs causing aspirated pneumonia's. As difficult as tgat is to accept for some it's not why I am writing this blog now and opening it up for discussion. The reason I am starting a conversation today is because of changes being made to connectors that allow those of us who survived cancer yet need tube feeding as our only option to get needed nutrition. Changes are being considered to change connectors with a new one called ENFit and is being proposed as a safety change so tgat mis connections do not take place. However this new connector is going to limit those needing tube feeding to an only option of commercial formula. Many tube feeders find that making their own homemade blends from natural foods is actually better in fighting the disease that is limiting their ability to eat or swallow. The new connectors will no longer allow theses types of homemade blends resuling in individuals only being able to use commercial formulas loaded with corn syrups as sugar substitutes, lab manufactured chemicals and processed milk by products for vitamins. As we read tgat natural diets are better for folks and tgat they need to get away from processed canned foods and return to natural whole foods the pharmacy manufactures are initiating devices through manufactures tgat will only allow those needing medical nutritional support through those same highly processed and lab engineered supplements. We are starting to try and fight this aspect by writing letters to medical folks, the non profits tgat support these changes and initiatives to educate them tgat what they are allowing is going to limit active individuals to a monopoly of manufactures that seems to be only concerned with charging high cost for nutritional supplements and stopping all use by those needing a good natural diet to fight these disease with no options. I am trying to make folks tgat may need an alternative to getting nutrition aware and educate them on what changes are coming unless we get folks to send emails to those that have the power to stop these companies now before it's too late. If you have an NG, GTUBE, or Jtube now and are using formula please look at the ingredients listed on your formula and asked if tgat is what you may want to live on the rest of your life. Blending is an option, a viable one tgat is based on whole natural foods, fruits, vegetables, and meats, poultry, fish, pork and sea food tgat has no perspectives, no high processing or chemical additives. Blending can use the same healthy diet folks are now changing to to address and fight disease naturally. This isn't an option that folks that can no longer eat should be stopped from using themselves. Hopefully this can be addressed and stopped. Ronald J. Coppinger BOT survivor since 1991!

Comments

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #2
    the change

    I don't understand what is causing the need for change.  

    Anyone who reads this site could face the problem being described.

    I don't remember the type or brand peg Jim had but would not like the idea of his nutrition being dictated by a manufacturer.

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    #3
    Tube feedings

    I know that the first PEG tube my husband had he had a clamp that closed off the feeding tube thus nothing came back into the feeding tube after he did a feeding, water or even medicine.  The tube itself was large enough to use for blended food.  We never did because we were told not to.  The second time he had a feeding tube inserted, the tube was smaller and didn't have the clamp to close off the tube, so therefore stomach contents could come back into the tube, although he never had a problem with it.  Again we were told not to use anything other than the nutrition that they put him on.  He didn't like this second type of PEG tube.

    The first one was put in by a different doctor than the second one.  Wonder if that had anything to do with it.  Also the first one was put in on an out-patient basis (he went home in about 3 hours) the second one he had to spend the night in the hospital.  Different doctors, different treatment centers and different approaches is all I can think of.  

  • phrannie51
    phrannie51 Member Posts: 4,716
    #4
    To whom....and where would one

    send their grievance?  Where is this information being posted?  Which companies are trying to take over the G-tube industry?

    p

  • Barbaraek
    Barbaraek Member Posts: 626
    #5
    I found this article on the

    I found this article on the ENfit device:

    https://www.ismp.org/newsletters/acutecare/showarticle.aspx?id=105

    I also downloaded this from a pdf that was on a different site here:

    http://www.corpakmedsystems.com/enfit-enteral-feeding-tube-connectors/

    "Will thicker formulas and blenderized foods pass

    through the new ENFit connector?*

    The ISO 80369-3 enteral feeding design standards

    were developed with current practice in mind

    and specific requirements to avoid any disruption

    of therapy. The bore size (or hole) in the ENFit

    connector was designed to be consistent with the

    current connector (commonly called a “Christmas

    tree” or “stepped adapter”). Therefore, feeding

    through devices with the ENFit connector is intended

    to be consistent with current practice. For more

    information, contact the manufacturer of the enteral

    device directly."

    Next time we are at the hospital for follow up i will ask the surgeon who placed our PEG tube and the dietician for more info.

    I anticipate that my husband will need his PEG for a while longer as he recovers from the effects of chemoradiation and I am interested in transitioning to blended foods, rather than using the nutrition formulas of Isocal, Osmolite and Boost Breeze that we currently are using.

     

    Barbara

  • Maria Liolios
    Maria Liolios Member Posts: 2
    #6
    Ladylacy said:

    Tube feedings

    I know that the first PEG tube my husband had he had a clamp that closed off the feeding tube thus nothing came back into the feeding tube after he did a feeding, water or even medicine.  The tube itself was large enough to use for blended food.  We never did because we were told not to.  The second time he had a feeding tube inserted, the tube was smaller and didn't have the clamp to close off the tube, so therefore stomach contents could come back into the tube, although he never had a problem with it.  Again we were told not to use anything other than the nutrition that they put him on.  He didn't like this second type of PEG tube.

    The first one was put in by a different doctor than the second one.  Wonder if that had anything to do with it.  Also the first one was put in on an out-patient basis (he went home in about 3 hours) the second one he had to spend the night in the hospital.  Different doctors, different treatment centers and different approaches is all I can think of.  

    Hi my name is Maria Liolios

    Hi my name is Maria Liolios from Canada Ontario I've had cancer sence 2003  I have a peg  becaus I can't swallow my food so frustrating this is my first time here hopping it will help me to feel better about myself and knowing I'm not alone it's been like hell and back but some how I still manage not to give up hope thank you for hearing out 

  • Maria Liolios
    Maria Liolios Member Posts: 2
    #7
    Ladylacy said:

    Tube feedings

    I know that the first PEG tube my husband had he had a clamp that closed off the feeding tube thus nothing came back into the feeding tube after he did a feeding, water or even medicine.  The tube itself was large enough to use for blended food.  We never did because we were told not to.  The second time he had a feeding tube inserted, the tube was smaller and didn't have the clamp to close off the tube, so therefore stomach contents could come back into the tube, although he never had a problem with it.  Again we were told not to use anything other than the nutrition that they put him on.  He didn't like this second type of PEG tube.

    The first one was put in by a different doctor than the second one.  Wonder if that had anything to do with it.  Also the first one was put in on an out-patient basis (he went home in about 3 hours) the second one he had to spend the night in the hospital.  Different doctors, different treatment centers and different approaches is all I can think of.  

    Hi my name is Maria I have a

    Hi my name is Maria I have a peg and I was told to use only resource 2.0  when they put th in I only waited half hour then went home  how is your husband doing I know it's hard to adjust but we don't have a choice when you want to eat and you cant it's frustrating I know the feeling it is nice to be able to talk with people going through the same change  in our life maybe one mirical will come when this tube can come out but for me it won't becaus they say that food is going into my lunges and can't be fix so I hope he's in better shape then me  God bless you he is a lucky man to have you in his life

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #8
    Maria Liolios said:

    Hi my name is Maria Liolios

    Hi my name is Maria Liolios from Canada Ontario I've had cancer sence 2003  I have a peg  becaus I can't swallow my food so frustrating this is my first time here hopping it will help me to feel better about myself and knowing I'm not alone it's been like hell and back but some how I still manage not to give up hope thank you for hearing out 

    hello, Maria, and welcome to

    hello, Maria, and welcome to our wonderful family.  now, you will never have to feel alone.  we will always be here for you.  there are several in our family who are on feeding tubes for life, so you have company.  while i have much troulbe swallowing, i am able to.  it just takes a little longer and my food MUST be chewed to mush!  hey, why are you up-side-down?....lol.  you may get a nose bleed from that...lol.

    welcome,

    dj

  • Hondo
    Hondo Member Posts: 6,636 Member
    #9
    Maria Liolios said:

    Hi my name is Maria Liolios

    Hi my name is Maria Liolios from Canada Ontario I've had cancer sence 2003  I have a peg  becaus I can't swallow my food so frustrating this is my first time here hopping it will help me to feel better about myself and knowing I'm not alone it's been like hell and back but some how I still manage not to give up hope thank you for hearing out 

    Welcome to CSN Maria

    Hi Maria

    I too live on a PEG tube for life, but it is not so bad now as I am going on 4 years with it. I can still travel by myself just need to carry a blender with me on the road

     

     

    God Bless

    Tim

  • Fullrecoveryplease
    Fullrecoveryplease Member Posts: 7
    #10
    Radiation and feeding tube

    I have adenocarcinoma parotid cancer with lymph nodes and lungs involved.  Meeting with radiologist and oncologist this week.  expecting chemo and radiation course of treatment.  Does everyone get a feeding tube?  Does it help if I do swallowing exercises?  Can you be eligible for immunotherapy before going through chemo? Looks like a long road ahead but I'm anxious to start treatment!

  • wmc
    wmc Member Posts: 1,804
    #11
    Fullrecoveryplease said:

    Radiation and feeding tube

    I have adenocarcinoma parotid cancer with lymph nodes and lungs involved.  Meeting with radiologist and oncologist this week.  expecting chemo and radiation course of treatment.  Does everyone get a feeding tube?  Does it help if I do swallowing exercises?  Can you be eligible for immunotherapy before going through chemo? Looks like a long road ahead but I'm anxious to start treatment!

    Welcome to the H&N Group

    Welcome and sorry you need to be here. You might want to start a new thread so everyone will read it.

    I din't have much knowledge on chemo but I don't think immunotherapy works on all cancers. From research it only helps some.  You will heve questions for your doctor and I recomend writing them down. He will say or answer you and it will through you and you will go blank. Write them down and leave room for answers and hand it to the doctor. Mine wrote the answers down as he explained them.

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