What are your thoughts about feeding tubes?

[Jennifer O'Brien]

I am very glad I chose to get a feeding tube. I got it two years ago when my speech pathologist noticed early changes in my speech and I shared that I’d begun to choke when I drank water and other liquids that she described as “thin.” My team encouraged me to get the tube placed while my diaphragm was still strong, to withstand the twilight anesthesia during the procedure. (Though I know people also get it when their diaphragm is already somewhat weakened.)

For the first 20 months, I used it only for water hydration, for a bad tasting med no longer being used by most (Relyvrio), and for an experimental therapy. In recent months, I’ve begun to use it as part of my nutrition, using Kate Farm, which is vegan, nutritious and also tastes good (It’s thick, so I used to drink a little, as well).

The tube is easy to maintain – a quick wash around the area with a Q tip and a fresh gauze once a day – and use of the tube is also easy once you get the hang of it, using a plastic syringe to connect to the tube for medicines and water, and gravity bags for food, which frees up my hands to type on my phone and computer. My 89 yo mother, among many others, can administer it.

I experienced little discomfort when the tube was placed, just some tenderness when I took a deep breath or coughed during the first week because the muscles around the tube were engaged.

One caution: the tube and the fixture used to administer the liquid dangles (unless you get the button fixture, which I did not want). You can try to secure it with a cloth band around your waist (lots sold online), but I found them uncomfortable. I tuck it in the top band of my underwear, which works well but runs the risk of it being pulled out if it snags on my underwear when I’m taking it off.

If you snag the tube and it falls out, put a bandaid/bandage on the area and go to the ED. They can usually replace it quite easily as an outpatient procedure. (You could also ask the team that surgically implanted the tube track for a spare tube so you could bring it to the ED to ensure that the replacement tube fits with the internal track.) In my experience, the incision site began to close quite quickly, within 20 hours, so best to get the replacement quickly, to avoid needing a second surgical procedure.

[Jennifer O'Brien]

I chose to get the feeding tube because I was/am satisfied with my quality of life, and had/have a support system to help me use it.

[Lisatodd]

My husband was diagnosed in Nivember 2023 Abd few weeks later he had feeding tube placed in. In beginning he was getting formula and food. And about 6 months not able to swallow and all meds and formula. He uses pads around the tubing. He uses the cinches to hold tubing. About every 6 months he gets infections and family doctor gave us silver meds to put on to heal it up. I guess I am not sure why you are asking should you do that. For us it wasn’t an option. He was losing weight about 60 pounds prior to us finally getting answers. He said he wished he was in wheelchair. Losing being able to communicate and eat is the worse. Using the feeding tube helps to make sure he is getting his nutrients and able to control weight.