Let's talk G-tube!

Hello Julie @jkhagen1 and welcome to the Head and Neck group. I do not have any experience with a g-tube, although my father had one many years ago during his treatment. He had no major issues other than irritation which was controllable with antibiotic and cortisone creams. Excessive granulation tissue seems to be unique to certain individuals. I am a veterinarian and very familiar with it in horses as they love to produce granulation tissue around wounds.. We also used caustic silver nitrate to inhibit it, or surgery, and it did not work well. My more recent experience with Manuka Honey.....a medical grade type of honey for wounds.....makes me think that it might help your situation. Open, chronic wounds will heal beautifully with it. I wonder if it would help to control the irritation from the tube that is stimulating the granulation tissue to form? That's the same theory as using the Nasacort where the steroid in it decreases the inflammation. It also inhibits bacterial growth so fights infection. You can order it on Amazon so maybe another thing in your arsenal to use?

I am putting Manuka honey in my cart now and will definitely give it a try! Thanks!

@jkhagen1, I'm tagging a few additional members who have or have had experience with a G-tube like @sandy8043 @7881188 @jclassey @kcterry @phyllisg @davidwrenn @dsh33782

You might also find some useful tips in this related discussion:
- Gastrostomy Tube (G-Tube): Difficulty finding a formula that works https://connect.mayoclinic.org/discussion/formula-difficulty-for-gtube/

Julie, have you found a solution to the granulation tissue irritation?

@colleenyoung Unfortunately no solution to the granulation irritation - I guess I'm just one of those patients. Thanks for this link. I *hope* I'm turning a corner. My taste is coming back and every week I see progress in swallowing. I am also finally accepting that this healing process is not linear. 90-day PET scan on Monday and hope to have a "cancer free" reading.

I tried living with a feeding tube for a year or so and finally decided not to have it replaced after it fell out for about the fourth time. For a while I had a mysterious perfume-like smell coming out of the stoma. I kept getting pneumonia from it and one time I was told that it had also triggered pancreatitis. I had to have a fistula repaired after I stopped replacing the tube.

Aside from the biological side effects, the Kangaroo Joey feeding machine was a hassle to use and I was not happy that the alarm that is supposed to alert the user that the tube is clogged or the feeding bag is empty is inaudible to me. The people who designed this device should know that many users will not be able to hear the high-pitched sound that they use as an alarm. They could easily build machines that emit different sounds or allow users to choose their own “ringtones” just like practically every cell phone nowadays.

Another mechanical annoyance: They didn’t think to give me a tool for unplugging the tube. I had to track one down online and pay what I considered an exorbitant price for what is basically a long skinny strip of plastic similar to plumbing tools that are used to unclog sinks.

I will consider agreeing to a new feeding tube if I ever end up in a nursing facility with a staff that actually knows how to keep it running and has the equipment on hand to do the job. Otherwise, never again.

Are you all aware of OLEY Nutrition Support? They support people with feeding tube.

"The Oley Foundation is a non-profit home nutrition therapy community and advocacy group.

Mission: To enrich the lives of those living with home IV nutrition or tube feeding through advocacy, education, community and innovation.

Vision: Oley envisions a world where patients are united, supported and empowered to thrive on home nutrition support."

My husband had ALS and had feeding tube.
I hope this is helpful.
Kathy

This is a great resource. I learned a lot and even found a couple more tips on dealing with granulation tissue.

Have you considered your diet as causative for the granulation?

@jenatsky - good thought. I have not considered it. I'm using 75% Kate Farms 1.4 organic complete nutrition.

UPDATE!! YAY! I tried a tip I found on the OLEY foundation forum (https://oley.org/). Apparently, Kenalog cream/ointment (Triamcinolone Acetonide .1%) helps minimize the granulation. I happened to have this on hand, so I tried it. Nearly immediate relief/shrinkage of the tissue. I've applied it twice (night and morning) and the discomfort is gone, and the tissue is about 50% smaller.