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.

aheid | @aheid | Jul 12, 2024

We switched brands one last time to Vital One peptides, which is supposed to be more digestible, but even that wasn't tolerated. Hubby subsequently had his j-tube removed and is now on TPN (IV nutrition)....it is easier on him because it goes right into his bloodstream but it, too, has caused problems. With not using his digestive system, his gallbladder filled with sludge (more likely when someone who is on IV nutrition). On the upside, vomiting is almost totally gone but he continues to have issues with nausea—emanating from the abdomen. The j-tube was removed more than one month ago and he still leaks bile from time to time—I was under the impression that it closes within hours. His "recovery" is and has been horrible.

relicmeister | @rselicmeister | Jul 17, 2024

I have had a g tube for 2 weeks but since starting chemo I get nausea before I get enough nourishment into myself, even with a pump unless I keep the pump running constantly or set the ml per hour high then the nausea is a problem.
Since my esophagus is blocked nausea isn’t able to be relieved - I cannot vomit. I take an anti nausea but there’s nothing for immediate relief. Should I ask my doctor for something like phenergin? I’ve had that in suppository years ago but it burned bad as I recall. Any ideas? Still losing weight as well 115 now ( 67 yr old male 5’6”) 135 my precancer weight

aheid | @aheid | Jul 18, 2024

You might try prochlorperazine—it's available as a suppository. Good luck.

Anonymous379414 | @anonymous379414 | Jul 18, 2024

My husband started on Jevity 1.5 but now he’s on Boost High Calorie which runs about530 calories and 22 grams of protein.

Colleen Young, Connect Director | @colleenyoung | Jul 24, 2024

In reply to @anonymous379414 "My husband started on Jevity 1.5 but now he’s on Boost High Calorie which runs about530..." + (show)

Welcome, @mmiles04. How is your husband doing? Is his feeding tube permanent? How are YOU doing?

jlbrown7 | @jlbrown7 | Mar 10 1:40am

03/09/2025

Hello, my brother was diagnosed recently wur Esophageal Cancer ( Squamous cell). My brother is 79 y/o, life time tobacco user and presented with difficulty swallowing solids and lately limited liquids.
He was provided with a feeding tube.
Any advice or recommendations would be appreciated.
Thanks for taking time to read my letter and I'm glad to have access to this message board.

Colleen Young, Connect Director | @colleenyoung | Mar 22 2:00pm

In reply to @jlbrown7 "03/09/2025 Hello, my brother was diagnosed recently wur Esophageal Cancer ( Squamous cell). My brother is..." + (show)

Welcome, @jlbrown7. I moved your question about the the feeding tube to this related discussion:
- Feeding tube patients: What's your experience? https://connect.mayoclinic.org/discussion/feeding-tube-patients/

How is your brother doing? What treatments is he having?

davidwrenn | @davidwrenn | Mar 23 9:52am

I too am a 6+ yr survivor of ESCC. I've had a G tube due to massive, totally occlusive esophageal strictures. It's been a critical part of my prolonged survival although there have been a few bumps in the road along the way.
I've made a few posts about my experiences and advice re appropriate care and maintenence tips for feeding tubes last year. You should be able to find it if you look at my profile and posts. If not feel free to sende a reply via this forum and I'll be happy to share my experiences.

jensaks | @jensaks | Jun 24 9:22am

In reply to @jwkelly72 "Thank you for your response. I used ISO source (rehab), Vital (hospital)and now Jevity 1.5 at..." + (show)

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.

jensaks | @jensaks | Jun 25 5:24am

In reply to @aheid "Speaking of j-tubes, I’m looking for some advice or suggestions. My husband is 8-½ months post..." + (show)

@aheid

Speaking of j-tubes, I’m looking for some advice or suggestions. My husband is 8-½ months post esophagectomy surgery and he still has daily bouts of nausea and/or vomiting (at this point, the “vomiting” is mostly refluxed bile). Constant nausea prevents him from eating an adequate amount of “real” food and so he is still on j-tube enteral feeding.

The worst aspect of this, is that the formula itself seems to cause nausea, particularly if he has more than one container in a row. We currently use KateFarms (we started off with Osmolite after surgery but switched brands in case the Osmolite was causing the nausea, which is obviously not the case as we have the same scenario with KateFarms). I give him one container in the morning, one in the afternoon and one in the evening in an effort to stretch it out. In addition, in order to give him enough calories, we try to get either two glasses of Boost, or something to eat. If he is on the formula overnight, it is worse; he will wake six to eight times overnight to vomit. This is no way to live.

He takes Ondansetron and Prochlorperazine to combat the nausea—they don’t do the trick. He has had several visits with an acupuncturist to combat the nausea—but he still gets nauseous. I’ve also gotten him acupressure bracelets and purchased peppermint oil spray to soak in a cotton ball—none of these things work. We also have an appointment for a hypnotherapist. I’ve tried slightly reducing the milliliters per hour feed rate of the formula—but that doesn’t seem to have made any difference. Perhaps it should be reduced further.

Vomiting or nausea frequently stops him from completing a container of formula or finishing food after one or two bites and the resulting lack of calories has created a nutritional anemic condition…with his red blood cell and hemoglobin counts now being below normal—as a result, he has shortness of breath, is weak, cold, tired and fatigued all the time. In all, he’s lost between 65 and 70-lbs., since the surgery.

Surely my husband is not the only person who’s been up against these problems after an esophagectomy surgery. I’m looking for advice or suggestions, hopefully from someone who’s successfully dealt with it and I will be eternally grateful for whatever information you are willing to share.

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I have a gastrostomy tube...I'm being treated for squamous cell cancer of the tongue. I had lost 100 lbs. by the time I started treatment...have stabilized to where I seem to gain and lose the same pound or two now! I started on Jevity, and they added protein packets, but I felt sick all the time. I think it was the protein packets, because I did better when I took those away. I didn't use a feeding pump once I got home from the hospital...I used gravity, but VERY slowly. I typically would feed 1 carton over about a 45-minute period. I'm not getting nearly enough protein, so I'm now trying out Ensure Plus, which has 30 grams of protein per carton. Now I'm eating mostly by mouth (very limited choices and amounts, and eating is laborious and not that fun), but I use the tube for medications and extra fluids primarily.

Our middle son was born with a rare genetic disease (Menkes Disease), and we fed him via feeding pump/gastrostomy. He could tolerate SO little volume and speed. We fed him continuously (with little breaks here and there). We diluted his formula (Osmolite) and fed him at 35cc's per hour maximum. If we sped that up, he would vomit. You might just think of tinkering with the speed of feedings. Obviously, being a full-grown adult, your husband probably can tolerate a lot more than 35cc's per hour, but try adjusting downward by 5cc's at a time and see if you hit on a speed that he tolerates but will still give him enough nutrition. Osmolite has the advantage, by the way, of being a low osmolar weight formula. That means it is closer to the body's fluid weight. The 1 cal. Osmolite has low osmolality. Osmolite 1.5 is high. So you might try him back on Osmolite at a slow pump speed and see if it helps.
I hope this helps some...nausea and vomiting are awful, and I'm so sorry.

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