Feeding tube patients: What's your experience?

I too am 100% on a PEG tube for nutrition. My tube was placed to avoid aspiration pneumonia and to get a balanced diet as the radiation and chemo I had years ago has gradually deteriorated my ability to chew and swallow. I lost jaw bone tissue and teeth about 7 years after treatment and the lack of saliva from day 1 has caused dryness in mouth, heavy mucus. I have experienced flatulence too - but it seems to occur when I do not have enough water and become dehydrated and/or constipated. To remedy this I have been increasing the amount of water I use to prep and flush the tube. This does help. I have had a tube since July 8, 2024 and had quite a few problems with the initial tube because of an infection caused by something left inside by the surgeon when it was installed. It took awhile to get that healed, plus the balloon also deflated. Finally at the end of March I got a new tube and it has been working quite well. I do have seepage, but by keeping the area clean and dry and applying moisture guard I can avoid stomach acid burn. Anyway, I'm glad to have found this group to share incidents and ask questions. Take care.

I am 100% on a PEG tube now for nutrition and hydration as a result of inability to safely swallow following radiation for scc of base of tongue years ago. Having been diagnosed as type 2 diabetic a few years ago, I have been taking 7 cartons of Glucerna with Carbsteady 1.2 CAL (8 oz. ea.) each day for the past 11 months. While my blood sugar level is acceptable and the formula is well tolerated in all other respects, I have problems with gas that is rather extreme while on this formula. In addition, I have developed a foamy saliva lately (the past 2-3 months), that is impossible to swallow and affects my speech. I am constantly in need of spitting it out. It only bothers me during the daytime. At night I generally have a dry mouth. My physician thinks that the gas or flatulence I am experiencing is coming from the sugar alcohols that are in the formula. The foamy saliva is apparently related to the xerostomia I have had for many years.
I am wondering if anyone other PEG users have experienced similar problems and if they have found a solution.

I deleted my comment because I have a g tube not a j tube but I'm wondering if the collar around the tubes is similar. The collar on mine slips away from my skin, I think because of the moisture barrier cream. What was your solution? I'm wondering if it might work for me.

@gdj I have a j tube and the disc on th tube doesn't stay close to the skin. I think because of the moisture barrier cream I use makes it too slick. I need the cream because of minor leakage from the hole. what was your solution?

I saw somewhere that you mentioned a new g-tube would be $400. I was looking online because I was curious about mine...Posting links is not allowed, but if you look up Gastrostomy Feeding Tubes with Enfit Connector, and put in the size you have. For me, it's 18Fr and I see $49.80 for one identical to mine. Or, if yours isn't Enfit look for what you do use...it needs to work with whatever syringes you use. Prices seem to vary between upper $40s to $60 or so.
Putting in a fresh, clean undamaged tube every 3 months just makes sense to me.

At age 78, I've been on a J-tube for 15 hrs/day for 4 months now because my stage 3 tumor in the lower esophagus was completely blocking oral nutrition and my surgeon wanted to avoid any stomach involvement before ultimate surgery. While I have been fortunate enough to presently be completely clear of cancer after a 6-week regimen of chemo and radiation, the tumor must still be excised in order to return to oral nutrition and to ultimately have the tube removed. The tube is a major nuisance and but for the tireless efforts of my retired RN wife I don't know how I would have managed the daily regimen for so long. I know the surgery, minimally invasive and now scheduled in 2 weeks at a local comprehensive cancer treatment and research hospital, will have a pretty dramatic effect on my daily dietary regimen, but I am determined to ultimately resume my former active lifestyle for my remaining years.

I had similar nausea concurrent with feeding. In my case my retention disc had loosened and allowed the baloon/tube tip to descend out of position in my stomach. Sliding the retention disc back into proper position solved my problem.

I also have a velcro belt I found on Amazon that helps hold the tube in place.

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.

Are you saying the balloon on your g-tube broke? If so, and if you don't want to go through our doctor, etc. (sounds like that is so) you can order them online. Amazon has them. Just be sure you order the same size you currently have.

I too am a 6+ yr survivor of ESCC. I've had a G tube due to massive, totally occlusive esophageal strictures. It's been a critical part of my prolonged survival although there have been a few bumps in the road along the way.
I've made a few posts about my experiences and advice re appropriate care and maintenence tips for feeding tubes last year. You should be able to find it if you look at my profile and posts. If not feel free to sende a reply via this forum and I'll be happy to share my experiences.