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Feeding tube patients: What's your experience?
Esophageal Cancer | Last Active: Jun 25 10:24pm | Replies (53)Comment receiving replies
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.
Replies to "Speaking of j-tubes, I’m looking for some advice or suggestions. My husband is 8-½ months post..."
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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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.