PEG Tube fears and swallowing issue

Logan51

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. 

 

wbcgaruss

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

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

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

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..