What are the lifestyle changes with permanent G-Tube?

@omaest
Thought sent this already. my apologies if it didn't post.

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

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 was advised about three years ago to consider switching to a feeding tube. About a year ago, I was hospitalized with aspiration pneumonia, and from that point on, my swallowing gradually worsened. I continued to lose weight with no end in sight.

I’ve now had the feeding tube for almost four months, and I adapted to the schedule and formula fairly quickly. I’m gaining weight and, overall, I feel better. Honestly, I’m rarely hungry and don’t really crave food anymore.

The hardest part for me is the social aspect. Dining out is infrequent, and when I do go, I’m not very happy. It’s difficult sitting there, looking around at others my age (70) enjoying their meals and each other’s company. Because of that, I don’t see much travel in my future.

So, the bottom line: if you can avoid a feeding tube, you’re better off. But if swallowing issues are harming your health, it may be necessary. In the meantime, if you haven’t already, consider swallow exercises and dilation if your doctor recommends them
Good luck!

⸻

I was advised about three years ago to consider switching to a feeding tube. About a year ago, I was hospitalized with aspiration pneumonia, and from that point on, my swallowing gradually worsened. I continued to lose weight with no end in sight.

I’ve now had the feeding tube for almost four months, and I adapted to the schedule and formula fairly quickly. I’m gaining weight and, overall, I feel better. Honestly, I’m rarely hungry and don’t really crave food anymore.

The hardest part for me is the social aspect. Dining out is infrequent, and when I do go, I’m not very happy. It’s difficult sitting there, looking around at others my age (70) enjoying their meals and each other’s company. Because of that, I don’t see much travel in my future.

So, the bottom line: if you can avoid a feeding tube, you’re better off. But if swallowing issues are harming your health, it may be necessary. In the meantime, if you haven’t already, consider swallow exercises and dilation if your doctor recommends them
Good luck!

@steve55, For one we haven't been to a restaurant for quite some time but when we go I order a drink, usually Grey Goose over ice and sip it throughout the meal. The sips are very small and the glass is usually still quite full as the ice melts but it gives me something to do while the others are eating. And I think it makes the others more comfortable for me to have something too. The biggest problem is my inability to join in the conversation as my voice is also being effected. Our socialization is mostly in our home as I still like to cook and plan menus. Our close friends do not mind that I feed myself at the table while they eat. Take care!

@steve55, For one we haven't been to a restaurant for quite some time but when we go I order a drink, usually Grey Goose over ice and sip it throughout the meal. The sips are very small and the glass is usually still quite full as the ice melts but it gives me something to do while the others are eating. And I think it makes the others more comfortable for me to have something too. The biggest problem is my inability to join in the conversation as my voice is also being effected. Our socialization is mostly in our home as I still like to cook and plan menus. Our close friends do not mind that I feed myself at the table while they eat. Take care!

@omaest
See below. Hope this works for you.
Since you can remove the tubes after feeding, it really cuts down on the friction issue. You will need to replace them periodically but it takes two minutes - they use the same hole - just remove the old and replace with a new one.
The nurse assistant was done with mine before I even new it.
Good luck
-Donna

@omaest You mention your restaurant bill. How do you deal with restaurants assuming like me you are not able to eat anything.