Feeding tube patients: What's your experience?

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.

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)

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.

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

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.

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.

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.

After you clean the area around the flange and secure the split sponge with 2" paper tape, do you secure the hanging tube to the body? I place it parallel with the flange on either side of the flange and secure it to the body with a couple of strips of 1" paper tape. That prevents the weight of the tube and tip from pulling the inflated balloon downwards. Let me know if this is not clear and I will post a picture of what it looks like when done.

These pictures show how the tube is secured to the body to prevent its weight from dragging the whole contraption down and out by sheer gravity. Also, by using different 1" paper tape from the 2" tape used on the split sponge (with no overlap), I can access the port throughout the day for hydration without disturbing the sponge or the flange. I also tape the tube to the body while tube feeding is going on with the pump - again, to prevent gravity pull.

First, formula is delivered at 100-ml/hr (I slowed it down from 110 per). Husband seems unable to tolerate too many cartons in succession and also deals with them better during the day rather than overnight (less nausea). I give him four containers per day, either broken into three separate times, or all overnight. Four containers will give him 1,500 calories of formula plus 530 calories for one container of High-Calorie Boost. I try to get him to consume 2,000 calories total for every 24-hour period. Of course it’s not easy as he asks me to stop the formula if and when he becomes nauseous. Food consumption orally is very little so we must rely upon the formula. As a side note, his not eating very much is due to a mental block—afraid of vomiting. Just the other day he had his first session with a hypnotherapist and we feel that this will be a success. Once he eats regular food and gets rid of that tube, I believe everything will come together.

What you are doing, as it relates to tube maintenance, is almost exactly what my husband has been doing all along. The differences are minor: he uses Hibiclens for cleaning and Desitin as a barrier cream (which includes zinc oxide). He also tapes the end of the tube the way you do and uses the same type of tape that you describe, and also gets the split sponges from Amazon.

He has the balloon-type j-tube, which is the type most likely to come out. The original tube when placed during surgery was in from early June until late October. When it was eventually replaced, he received the balloon type. The problems thereafter were: tube deflation (which was re-inflated) followed a week later by the tube falling out and being replaced (with leakage around the tube for several days); and then recently the tube just fell out during a feeding—it was replaced in the local ER and the leakage has been present since (8 or 9 days ago).