Feeding tube patients: What's your experience?

Question for aheid: how many cartons of Nutren 1.5 in 24 hours and how long does it take?
What is the mL/hr? I might have an idea about the nausea, let's first see the facts.

The J-tube just literally fell off once, new tube was put in within 3 hours which is critical, as the body wants to heal itself and close up the hole when the foreign object(the tube) falls. I am meticulous about cleaning the area around the flange - daily now - in the earlier days, there was more seepage and I did it 2 or 3 times a day. The stuff that comes out of the hole is nasty caustic and causes skin irritation and has high potential for infection. For cleaning I use barrier cream generously on a Q tip until it comes out clean especially under the flange. Then, depending on the condition of the skin, I either apply a layer of zinc oxide ointment or a layer of barrier cream. That is a daily decision. I got boxes of 4X4 split sponges from Amazon and change them liberally. I look forward to your answer on the mL/hr.

I survived via j tube feedings for months during my treatment, for which I’m grateful - but, maintaining the j tube was challenging. Mostly infections around it. Resulting from some leaking, but also friction between j tube and skin (that was a regular issue). Antibiotics took care of it.

If you have any kind of j tube issue, I’d address it promptly with the appropriate people. Likely different department than oncology, at least in my experience. Be persistent till it’s resolved.

Thank you for suggestions regarding formula. We switched to Nutren 1.5 and so far nausea is less but still occurs when he takes more than one container in succession. We will give it more time to adjust.

I have another question about j-tubes. My husband had to have his j-tube replaced two times recently. On both occasions they just deflated and fell out. My question is about leakage from the stoma afterwards. The leakage consists of bile mixed with formula and comes from around, not through, the tube. The first time this happened, the leakage stopped within several days. This current event has lasted a week so far. I think this may be caused by movement when pushing the new tube in—perhaps the movement widens the hole in the jejunum but then eventually the opening closes around the tube again. Has anyone had this experience? Is my assumption correct? Or is this something to worry about? Suggestions are welcome.

@dcramer, I hope you saw the helpful posts from several members. How is your husband doing? How are YOU doing?

I don't have an answer but a suggestion - my husband is taking NUTREN 1.5 made by Nestle.
He no longer has issues with diarrhea and the nausea has finally subsided. Just as general information,
not necessarily a priority, on Amazon the cost of Nutren 1.5 is $0.21/fl oz and the cost of Kate Farms
1.5 is $0.97/fl oz. I just ordered some more Nutren from Aveanna Healthcare Medical Solutions who provides us with the drip pole/motor rental as well as the daily bags and the price for the Nutren was almost half of Amazon. While the well being and recovery of our loved ones is the priority, here we are talking about what can amount to a significant amount over a period of several months. Of course, always check with your oncologist whether changing brands is acceptable for your particular case. We are each unique and only your doctor knows what is right for you.

This helped me tremendously but kind of expensive

Salmon, Oats & Squash - Pureed Food Meal for Feeding Tubes, 9.4 oz Pouch (Pack of 12 Pouches)
Visit the REAL FOOD BLENDS Store (Amazon)

Hello
I had a PEG tube for throat cancer treatment last fall.
I also had nausea problems when I used the tube. I found that I had to add the fluid a little bit at a time in order to not have nausea. If it went in too quickly, I would get sick. I finally found a food/liquid that would not make me sick. It was on Amazon

REAL FOOD BLENDS
Real Food Blends Salmon, Oats & Squash - Pureed Food Meal for Feeding Tubes, 9.4 oz Pouch (Pack of 12 Pouches)Real Food Blends Salmon, Oats & Squash - Pureed Food Meal for Feeding Tubes, 9.4 oz Pouch (Pack of 12 Pouches)
9.4 Ounce (Pack of 12)

I had to dilute it a little bit with water and i added a tablespoon of olive oil for extra calories.

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.

dcramer
I remember those days on feeding tube. I had esophageal cancer tumor and was on feeding tube for several months when I could not swallow food. We used 6 ISOSOURCE cartons a day to get nutrition. I was tired a lot and did have some diarrhea but not too bad. The really good news is the turmor was gone after 28 days of chemo and radiation. And now the feeding tube is gone but I still have port.
Don

What are people's experiences with nutrition for feeding tubes? How long does it take to adjust? When gastroesophageal cancer made it very difficult for my husband to swallow, he received a G tube. We've been using Kate Farms. One carton at a time through a gravity bag is OK, but he needs to have 5 a day to begin regaining weight, and when we up it to four cartons a day - divided into three feedings of 1 1/3 cartons each -- he begins to have diarrhea. Are there other formulas that are better tolerated? thank you so much. He's getting thinner and thinner.