Tube feeding issues causing reflux

@0pko0 I’m sorry your husband is having so much trouble with his tube feedings. Has it always been a problem or is it something new? A basic solution is to sit up during or right after the tube feeding. I attached a link for an article here. It may have some helpful info.

Discussions | Esophageal Cancer | Mayo Clinic Connect. this discussion group may also have some information

What has his doctor said, especially after the aspiration and pneumonia?

Thanks for the information. My husband had tube placed in 3/2020 due to lack of swallowing ability. His aspiration pneumonia cycle started 3 months after switching to Katie’s Farm this year He is doing all the right things for feed , motility is good and it baffles doctors what to do. Very frustrating.

@0pko0 you mention that the reflux started several months after starting Katie’s Farm. Was there a specific reason for starting this formula? Have the doctors suggested stopping it to see if there is an improvement?

@0pko0

I was on a feeding tube for over a year a few years back. I doubt I can help though.

I was on a constant feed… 24 hours a day except the last 4 months when I weaned off. I cannot remember the name of the formula.. it smelt awful! My husband took care of setting it all up.. filling the bags.. crushing meds. I am blessed that he takes such good care of me. It sounds like you are just as caring as he is and your husband is blessed to have you.

I slept in my recliner. Otherwise I had to prop up at.. I think 35° angle. That was not comfortable. Adjustable beds were out of my range and insurance would not pay for one. My recliner was comfy though. Medicare and my supplemental insurance would probably pay for a hospital bed now.

There are different types of feeding tubes and many formulas too. It appears his problem started with the new formula. It sounds like his body is rejecting this new formula for some reason. Allergies are usually more noticeable… that said my granddaughter when she was a newborn it was only obvious to a specialist she went to that she was allergic to something the baby formulas had in them. She outgrew the allergen that all the other formulas contained and drinks plenty of cow's milk now. So maybe your husband has an allergy to something in the formula. The only way to know for sure may be to change it to something else.

ZeeGee

We were trying to get off the corn syrup, sugar formulas, etc. Very frustrating since docs don’t know what to do. A friend (dietician) suggested to put him on real food diet, like Liquid Hope, Compleat since that might be more difficult to reflux from tube feeding.

@fourof5zs id be very interested to know how you weaned off the tube feedings. Was learning to eat solids again difficult? You sound like you’re doing well and you’re so knowledgeable!

@0pko0 @becsbuddy

I started on foods by slowly replacing amounts of formula with baby food consistency foods (see attached photo.. it has written on it what the food is. .. it was put through a food processor.. I only ate about 6 spoons of that food). I drank Carnation Instant Breakfast (I did the bottles that were high protein). Protein helps with energy. I crushed medications that were crushable and put them in applesauce to get down. I have as many medications as possible either chewable, liquid or a patch. I still take Flintstone vitamins… I don't like the gummies. … make sure you have vitamin-d checked. It helps get all the other vitamins to work.

I had a gastric bypass (not for weight loss, but hiatal hernia).. so could not eat much to begin with and really had to take it slow. I ate something every 2-3 hours during the day. When you eat often you are never hungry. I eventually had my formula overnight, which freed me from the bag during the day. As time went on I went to soft cooked veggies and fruits and chewed well and swallowed.. and tender, juicy meats. Then no formula at night. I had to maintain weight for .. I think it was six weeks before they would remove the feed tube.

I now eat something every 2-4 hours. Our bigger meal is at midday. I can eat about 1 1/2 cups of food. I make it more veggies than meat because they are easier to swallow than meat. Some meats need sauce or gravy to make them easier to swallow. Veggies and fruits are cooked tender. I am still to eat no raw fruits and veggie other than ripe banana. I might could do avocado, but I am not fond of them. Not all foods taste the same as it used to. My husband had errands to run yesterday so dinner was take-out.. Carter's fried chicken. He got him a fried chicken breast and me fried livers. .. which still taste good to me. I had macaroni and cheese and fried okra for sides. So I have come a long way 🥳 . I don't eat that way often. My digestive system does not always react well to fried food. Carter's fried food are not very greasy.

I have the most trouble swallowing white potatoes no matter how they are cooked.. even soupy mashed. Rice is another one I have trouble with. Strange is I can eat fried rice with no difficulty. Breads are hit and miss.. some I can and some not.I have eaten a lot of eggs for protein.

It is a slow process and a dietician may be needed to help.

ZeeGee

@fourof5zs Such good and helpful information. Thank you! Are you still moving forward on the diet?

@becsbuddy

My swallowing problem is achalasia… so I have to go back to softer or creamy diet sometimes. No cure.. I am still doing esophageal dilations to help me out.