← Return to What are the lifestyle changes with permanent G-Tube?

Discussion
Comment receiving replies
Profile picture for praying4miracle @praying4miracle

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

Jump to this post


Replies to "Hi Phil, Sorry to hear about your pending decision and swallowing challenges. I have been on..."

@praying4miracle
Donna,
Thank you so much. This helps me a lot. I will talk to the Dr about stomach lining damage. I’m setting up appointments now to go to the Mayo Clinic, Rochester MN
Best life,
Phil

@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.

@praying4miracle
Donna - what does your tube look like? I'm ready to get another one because of leakage around the tube - I've had this done three times and each time the tube extender was wider around. Each time the extension is also less flexible and my clothing seems to bother it as well as movement of my arms, twisting, etc. I have a G-tube (inserted surgically rather than endoscopically). My issues started when the incision started festering and it was found the surgeon had left a drainage tube or something in my stomach.

@praying4miracle, I am now having problems with my G-tube because of the extender - can you describe what you have?