PEG Tube fears and swallowing issue

Logan51
Logan51 Member Posts: 468 Member
in Head and Neck Cancer #1

Having seen several posts over the years that basically say if you get a Feeding Tube you lose swallowing ability, I am compelled to call said line of thinking what it is- BALONEY. 

I had a PEG all thru tx back in early-2009, and actually kept for 15 months in case the C came back. During tx one of my best friends were ice cubes, along with sipping water and taking pills, which kept the swallowing in action. Simple as that. Post-tx, first pudding, then pancakes and soup until some 4 months out, which is when it was back to eating and drinking whatever the traditional way. That was all in 2009. From cookies to pizza, eating was good, post-tx, for almost 10 years.

I did have to get another FT put in place when swallowing became an issue in 2019: caused by collateral Rad damage to the esophagus- not because my body forgot how to swallow. Scar tissue grows, and the top 1/3 of my esophageal passageway was with stricture. I have been FT-dependent since 8/2019, though I still use ice cubes and swallow with my chin against my chest, and am proof that getting a FT for C tx is okay. In my case, that's the only way I got Jevity nutrition for some 9 weeks so...it was essential.

And I'm not the only one who is FT-dependent, so don't let anyone who suggests a FT is some kind of boogedy-boogedy get in your head. The notion that you have to stop swallowing if you get a FT during tx is bogus. All it takes to keep it all good is sipping water. 

That said, there are different types of Feeding Tubes. The long PEG tubes are what I had and have, rather than the Mickey or balloon tubes- which it's my understanding from a Dietician who knew of people with said type of FTs, can lead to infection issues and have to be replaced every so often. 

 

Comments

  • wbcgaruss
    wbcgaruss Member Posts: 2,467 Member
    #2
    Well Logan......

    Thanks for the little update and info.
    I was already in your camp.
    The feeding tube installed does not mean losing swallowing ability.
    The fact that you quit swallowing does.
    And though people may get a feeding tube to prepare for the worst scenario if you can eat or swallow liquids do so as long as possible.
    If you can't eat during treatment after a while then do swallowing exercises usually provided and watched over by a speech therapist.
    I was feeding tube dependent for 3-4 months in 2013 since I could get nothing through but did swallowing exercises several times a day and as the swelling went down from the radiation treatments I resumed eating and drinking slowly a little bit at a time as my recovery allowed.
    Doing the swallowing exercises I never lost my ability to swallow.
    I also had a feeding tube again in 2019 when I was in the hospital for a lymph node operation and had complications that extended my stay and caused me to get one put in.
    Take care Logan-Wishing You The Best-Take Care-God Bless-Russ

  • LitlCJdoll
    LitlCJdoll Member Posts: 245 Member
    edited October 2021 #3
    In the fight

    Logan, I will reply in more length as I can, to this subject you've raised.Right now, Here Today I am in the fight of my life trying to hang onto my precious swallowing by mouth --- Not my ability to, because I can swallow liquids, Full liquids, and even pudding, but it is rough at times....---- but I'm fighting because at least one of these Hospital doctors, would welcome having  me go NPO, or to clear liquids as I'm on now.. Because I'm aspirating, as I have consistently for the past 4 years 9 months...probably longer and did not know, all because of a monster size tumor which altered the way I swallow. Then massive surgeries to rid me of 6- 7 different tumore, -- that sealed the deal, as far as destroying my former normal swallow....

     

    Anyway, a SLP came in today to assess me....

    So, we went over my myriad swallow studies...and the fact that I get esophagus dilated every 6- 8 weeks ( which is a different subject but affects my swallow too. Maximum diameter I have to swallow through is 7- 8 Millimeters and that's on the Day of the dilation. From there, it begins closing again. Tomorrow I was due to have one, in fact, but because of pneumonia infection, no can do.)

    I told the SLP, who knows me well  ( I am " her kind of people") she told me today)--- I told her that one of my Anesthesiologists told me 6 weeks ago, that " Crystal, you are going to aspirate whether you are NPO or not. You are as pirating your saliva, and the Reflux.  So, you may as well keep swallowing your liquids"

    I agree 100%.  The Teaching Fellow Pulmonary/ critical care medicine doctor over my case --- He agrees too. He told me to hang onto my swallowing orally as long as I can. He acknowledged its Human, to want to take in by mouth.

    Am I stupid or what? Here I am inpatient, wth my gd #6 Pneumonia... Ah, but its a bacterium, once again as in June, which is from my GUT. this bacterium is not from what I am swallowing by mouth. No, Klebsiella pneumoniae comes from the intestines ONLY..  Nowhere Else.

    Thus, I did not swallow it.  It came up via Reflux and I aspirated it. Which happens whether I swallow liquids or not.

    See?? In fact, when I tube feed and am NPO, my Reflux is Worse.  This whole scene would hapoen, regardless...

    So the SLP asked me, " What does Crystal want to do? For Quality of her Life..?"

    Easy answer, I want to have the go ahead to drink my liquids, as I'm able. ( even if I drown myself in the process. I no longer care. Hello Randal, I will be seeing you soon)

    So, there it is. I want to try to be at least a little " normal" by exercising my oral fixation of drinking as most people do.. Well, as I can, you know.

    Also, with tube feeding alone, my tummy BURNS and hurts so much---  liquids I take by mouth dampens that down.  Although I could syringe them in with same effect I'm sure.

    Then I'm back to the oral fixation and wanting to drink. ( There's a good Honey Ale beer at home cold in the fridge awaiting my return)

    Crystal

  • Logan51
    Logan51 Member Posts: 468 Member
    edited October 2021 #4
    understood

    but to my knowledge the reflux has not been an issue with me or anyone else I know of on the Forum. The avoidance of that, for me, might be the way I spread out my feedings,  with the max I do being 1-1/2 cartons of Jevity. Have not experienced lung infection that I know of, am now over 27-months FT-dependent, and am sorry about your continued problems, Crystal.

    The point of my starting this thread was to discredit the general notion you lose swallowing ability if you get a FT, which I consider Baloney, to help one thru tx.

  • LitlCJdoll
    LitlCJdoll Member Posts: 245 Member
    edited October 2021 #5
    4 years 9 months

    Hi Logan, 

     

    I have been 100% Dependent on my feeding formula, now for 4 years and 9 months ------ because I cannot get my nutrition by swallowing .  However, to address your topic, dear, Just because one is Feeding Tube dependent does Not mean they have to stop swallowing and you are therefore proved correct by Little Me. Because I have continued to swallow the entire time.  Well, except after my Glossectomy, Tracheostomy, Mandibullrctomy, Free flap, tonsillectomy, salivary gland removal and neck dissection when i was NPO for a long time.

     

    Then my SLPs helped me and I began oral liquids.

    So, no, even long term feeding tube dependence does not mean an  end to ones swallow, unless they themselves restrict it. The SLP s are there to help.

     

    Crystal

    By the way, these 2 antibiotics I'm getting 24/7 by IV are giving my terrible tummy trouble and yes Reflux of burning acid  up into my mouth. Whew!! Painful. My tummy is not happy at all..

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