Feeding tube patients: What's your experience?

I have tonsils cancer. Already gone through 1st round of chemo and radiation. Completed it in January 24.
I have a port and that was a great thing. But it took me forever to cross that bridge. Once they told me it could be removed down the road and not permanent, I went all inn. I’m jumping back into treatment end of this month but I’m concerned about all the weight loss and trouble eating. I am leaning towards a feed tube to combat weight loss from the get go. Is that permanent? Or can it also be removed in the future. Does anyone know.

@hondo88
I did get port and feeding tube during treatment. I lost about 20 pounds, but gained 10 back once I got on regular ISOSOURCE canisters 6 times a day for feeding tube. The side affects where no fun, but the end result of no remaining cancer was worth it. Let me know if I can answer questions?

My husband had an esophagectomy last June and received a j-tube during surgery for feeding purposes—the j-tube is inserted into the small intestine rather than the stomach. He's had problems ever since: nausea, vomiting, bloating and intolerance. We've gone through three different brands of formula hoping to find a brand that he can tolerate. Taking more than one container in succession triggers the nausea, etc. The tube has fallen out (or its balloon has deflated) a few times, necessitating a trip to the ER each time for replacement. However, he can't yet eat enough food to sustain himself without the formula so, as a necessary evil, it's here to stay—at least for awhile. On the upside, he no longer has cancer and the tube and formula are keeping him alive.

I had a j tube put in before treatment (chemo, radiation plus chemo, then surgery) because I could not swallow.

I could swallow after first chemo but kept tube because my taste buds got whacko and food tasted terrible.

The j tube stayed until several weeks after surgery. I didn’t eat normally for 7 plus months.

Having the j tube so long was best for me. I lost weight with it, but would have been worse if my only nutrition was eating. I couldn’t stand eating. The j tube took eating pressure away.

So, the j tube helped save me.

Having said that, the j tube is annoying. I had significant issues with friction, irritation, and infection with the tube. Three rounds of antibiotics. We finally figured out how to direct the tube so it didn’t drag - pull down - the tube causing skin issues.

We cleaned it closely every day. Eventually, we did not follow advice on keeping the disc tight against my abdomen - that just caused trouble. We experimented until we found best way for me, and my skin.

I’d do the j tube the same way again. I’d learn sooner how best to direct the tube (via tape) to keep it from causing problems.

I’m happy to discuss if you want to call.

We use Nutrin 1.5. It has no taste or smell and right now Medicare covers it but I had to buy the first cartons via Rx at Publix and it was not that expensive if I recall.

Admitted to hospital via ER for starvation, dehydration and severe pain from EC w/ Mets to spine 10 days ago and had surgery for g-tube on 2nd day. Due to inactivity of digestive system and opiates, it’s been difficult getting used to bolus feeds which caused intense discomfort and only a week later getting tolerable, though I feel stronger ( nourished) but still in great pain. I’m getting jevity 1.5 cal. Bought a metered feed pump and IV pole for night time feeds we hope to begin soon- Have appt with nutritionist in couple days. Meanwhile, radiation and chemotherapy began Mon. And Wed respectively. Glad to be home and that therapy to defeat this cancer has finally begun. Been a very difficult month.

Just started 50 micrograms fentanyl patch as I’m about to be done with 4 mg dilaudid every 4 hours ( plus 25 micrograms patch) which has only kept pain from being 8/9 but never less than 5/7. If the 50/ hr patch isn’t working I’ll have to see what will be offered for the constant breakthrough pain. Now that I’m able to get enough nourishment, pain really is the main problem- and a debilitating one at that. I’m skeptical that I won’t be worse off in a couple days. Also every swallow of a trickle of liquid hurts , then triggers a bunch of hiccup spasms, which is annoying. 2 more treatments of palliative radiation and 2nd round of 1st series of chemo begins Wednesday. I’m watching for any signs of improvement of either pain or swallowing because it’s all I can do ( other than prayer which is my priority)

My husband was switched from IsoSource to Nutren due to diarrhea. It has less fiber. But they also found that he had an infection after they did a stool culture. Once treated with an antibiotic he was better.

My husband had a ton of green fluid come out when his became dislodged. The people in interventional radiology stated it was the fluid surrounding the intestines and it stopped when he got his j-tube replaced.

I was on ISOSOURCE for several months and had some diarrhea but it got better.
Don