Feeding tube patients: What's your experience?

Posted by jwkelly72 @jwkelly72, Jul 23, 2023

I have a G tube in my stomach and am curious about what you tube feed, problems incurred, everything that has worked.. My tube is a permanent part of me and been keeping me alive since mid October last year. It is no different to me than my mouth, throat, esophagus except it doesn't get cancer. It is a Godsend.

Interested in more discussions like this? Go to the Esophageal Cancer Support Group.

I had similar nausea concurrent with feeding. In my case my retention disc had loosened and allowed the baloon/tube tip to descend out of position in my stomach. Sliding the retention disc back into proper position solved my problem.

I also have a velcro belt I found on Amazon that helps hold the tube in place.

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At age 78, I've been on a J-tube for 15 hrs/day for 4 months now because my stage 3 tumor in the lower esophagus was completely blocking oral nutrition and my surgeon wanted to avoid any stomach involvement before ultimate surgery. While I have been fortunate enough to presently be completely clear of cancer after a 6-week regimen of chemo and radiation, the tumor must still be excised in order to return to oral nutrition and to ultimately have the tube removed. The tube is a major nuisance and but for the tireless efforts of my retired RN wife I don't know how I would have managed the daily regimen for so long. I know the surgery, minimally invasive and now scheduled in 2 weeks at a local comprehensive cancer treatment and research hospital, will have a pretty dramatic effect on my daily dietary regimen, but I am determined to ultimately resume my former active lifestyle for my remaining years.

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Are you saying the balloon on your g-tube broke? If so, and if you don't want to go through our doctor, etc. (sounds like that is so) you can order them online. Amazon has them. Just be sure you order the same size you currently have.

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I saw somewhere that you mentioned a new g-tube would be $400. I was looking online because I was curious about mine...Posting links is not allowed, but if you look up Gastrostomy Feeding Tubes with Enfit Connector, and put in the size you have. For me, it's 18Fr and I see $49.80 for one identical to mine. Or, if yours isn't Enfit look for what you do use...it needs to work with whatever syringes you use. Prices seem to vary between upper $40s to $60 or so.
Putting in a fresh, clean undamaged tube every 3 months just makes sense to me.

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