What are the lifestyle changes with permanent G-Tube?

I'm writing this early Saturday morning while getting my "breakfast" through my G-Tube. I've had the tube since July of 2024 and without it I'd probably be dead. Mainly because trying to find nutritious foods that I could actually swallow without aspirating was extremely difficult. I was starving myself, becoming more frail and my immune system was extremely compromised. My life has changed because there are very few social activities that are not accompanied without food. Needless to say our restaurant bill is next to nothing. I'm lucky that I do like to cook and bake so I make most of my husband's dinners and he helps me with the tube. I am able to keep up with my hobbies of playing and collecting Mah Jongg sets, knitting, quilting, reading and baking. I've had a few problems with the tube but they were fixed. I am on my third tube, they last anywhere between 6 - 8 months and are easily replaced. Travel is confined but that might be my choice not the choice of others with tubes. More restrictions on my life style are because of my immune system rather than the tube. It took me about a year before I realized I'd be better off with the tube. I wish I had done it before I became so weak. My worry then was the G-tube would shorten my life and make it difficult - the actual opposite has happened, it has added time to my life and for the most part ease. Someone else has added about the necessity of cleanliness with the tube - a must. Also, I have purchase Waterproof PD Dialysis Catheter Wound Cover Shields so I can shower or bathe normally. My surgeon said I could go swimming but I'm not going to chance it. I'll have to get more than one opinion. I hope this helps. Good luck on your journey.

I have a question for everybody. I have a Mic-key G-Tube. I had to go to ER 2 months ago when my tube came out. Who do you all use to change your G-Tube out? It is expensive to go to ER and my gastroenterologist only does them in the hospital so they want to schedule for a whole procedure. Any advice?

@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.

@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,
Sorry to hear about your pending decision and swallowing challenges. I have been on a g-tube since my botched operation over a year ago.
I have silent aspiration when i eat and cannot drink any thing now after radiation without coughing. I hate to say permanent as I am hopeful. I still eat some to keep the muscles at their best. And am very careful about a clean mouth before eating so if I aspirate it does not turn into pneumonia. Get a tongue scrapper to make sure.
Life with a peg removes the stress around trying to get enough calories in and reduces risk of pneumonia since you are eating. It is tough to watch others eat and not participate. .. times like Thanksgiving and Christmas can be depressing. Maybe some type of combination would work for you.
Peg tube cleanliness is important as they tend to leak a little. This isn't too bad but should be watched to avoid infection. My first one had the tube extender attached and got pulled on clothing when I jogged and after a restless night in bed. There will also probably be extra tissues that grows around the peg as your body tries to heal the incision around the peg which can bleed. I exchanged my original one for a miki (spelling). These need to be changed out periodically...no big deal. 2 minutes process. I have heard that tubes may cause damage to the stomach lining but low risk and I had no choice. Be sure to ask you doctor. Major downside...no submerging in water...no baths or swimming due to risk of infection. Showering is ok.
Hope this helps,
Donna

I have a question for everybody. I have a Mic-key G-Tube. I had to go to ER 2 months ago when my tube came out. Who do you all use to change your G-Tube out? It is expensive to go to ER and my gastroenterologist only does them in the hospital so they want to schedule for a whole procedure. Any advice?

@hillx001 Your experience is very similar to mine. Thanks for sharing. Do you take anything by mouth? I still sip a little ice cream laced coffee in the morning and a swallow of 7-up or some other carbonated beverage at other times in the day. Mainly, to clear phlegm. Take care. PS: Are your tube changes regularly scheduled or do wait until the balloon deflates or other problems?

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.

@omaest
I do not take any solid food by mouth at all. I do take a few sips of carbonated water with some flavoring added each day to freshen my mouth and it helps to remove the phlegm. It usually causes a lot of coughing, so I limit my intake to a few small sips. My tube changes are set up to be at 6 month intervals automatically.
All good wishes,
Gary