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What are the lifestyle changes with permanent G-Tube?
Due to the beginnings of possible silent aspiration events and possible aspiration events during eating, what are lifestyle changes like if I were to need a permanent G-Tube. What are the pluses and minuses? What is life like with a G-Tube?
I have not had aspiration pneumonia at this point and am eating regular meals. I eat things that are easy to eat. Also, what are your suggestions for preventing the need to go the G-Tube route? What has worked and what hasn’t worked to prevent going down this route?
I appreciate learning from your experiences.
Thank You,
Phil
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I also had to go to the ER for one exchange because the balloon broke and the tube was too small. There is an office of General Surgeons nearby connected to my health care (Unity Point). I go to either the surgeon who inserted my first tube or the one who saw me at ER. Now, after reading what Gary wrote - I am going to see if I can make an official appointment in 6 months rather than wait for something to happen. The digestive care unit has been less than helpful and has only seen me twice in two years once was after I had developed an infection (surgical stuff left in during the insertion started to fester) and the other time just a check up.
@hillx001
Thanks again, Gary.
I learned something new about aspiration prevention: Swallow-Cough-Swallow
Take a sip, then cough, then take another sip, and repeat.
It is more powerful than just clearing after a bite. Worth a try.
I have also learned of a mouthwash to cleans the oral cavity to clear bacteria in the event of aspiration: 2 cups of warm water, l tsp baking soda, 1/2 tsp salt. Mix and use a small amount to swish then spit out. I’m using it before and after my meals and before bed. I keep it in a canning jar on the counter. I don’t mind the taste. It feels refreshing.
Stay well…
Phil
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1 Reaction@omaest
That sounds like a good idea. I only recently learned about Mayo Connect. It allows for great experiential information from people like us.
I enjoy the connections.
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1 Reaction@omaest
I have not crossed the feeding tube threshold at this point, so I’m still eating solid food. But, I may be experiencing some early problems that may include silent aspirations or aspirations when I eat. Because I cough. I’m setting up an appointment with the Mayer clinic to have another swallow study and related test. Hang in there.
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2 Reactions@taylorma
I have heard that there are situations where you may be able to change your tube yourself. I have a special-needs grandson, whose mother does those changes for him. So that may be an option.
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1 Reaction@praying4miracle
Most "Tubies" take baths, swim in pools or the ocean with no trouble...but public hot tubs or public pools are generally avoided. There are a number of Facebook Groups for us folks who are tied to a tube. Indeed I have learned more in those Groups than anywhere else...and I have educated many doctors as I've shared things I've learned. I've had my G-tube three years and now have the low profile MiniOne.
Hi Phil, I am 28 years out from tonsil cancer with lymph nodes involved. I had radical neck dissection, tonsillectomy and 37 radiation blasts back in the day (1998) before chemo became a standard with reduced radiation. I did not have a tube during treatments and lost 50 lbs. After radiation I slowly regained my taste and ability to eat. For the next 20 years I was able to eat with little problems. After that I began to have some issues swallowing, had swallow tests and adjusted my foods to include lots of sauces coupled with lots of sweet tea or ginger ale which helped with the swallowing.
About five years ago I progressed to no food and total dependence on Ensure orally. Three years ago I finally had an aspiration event with pneumonia. At that point the feeding tube became a necessity as my swallowing became so limited I had trouble even swallowing Ensure. Tube life is another story.... like others I don't do social gatherings as they're largely focused around food...so my life has changed greatly with much isolation.
I'll be 80 in a few months so I'm ok with the outcome. I had many very good years.
Best wishes...
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2 Reactions@oldjarhead ,
I get it about hot tubs and pools. I used to have a hottie and it took a lot of trial and error to balance things out.
Yes we should never stop learning. Sometimes we get so wrapped up with the outside would we forget about ourselves.
Keep learning and teaching. Best regards… ✅👍
@lummy
I change my own tubes now, after going to the VA and having an LPN do the change which I did for maybe three changes. I also buy my MiniOne buttons direct from AMT because the VA will only furnish the Avanos Mickey and it is a bit larger than the AMT MiniOne. I keep a couple of spares on hand should the balloon burst.
@taylorma
I have MIC-KEY tube also. My ENT does it in office, take 2 minutes max. So it can be scheduled before an emergency occurs. Best luck.
Donna