Feeding tube patients: What's your experience?

I had a g-tube which I used 6 times a day to input ISOSOURCE packets while I could not swallow due to tumor in lower esophagus. I had 28 daily radiation and chemo treatments which eliminated the tumor and I could resume eating normally. One problem I had with g-tube was one day it poped out, and I had to immediately go to doctor to reinsert it. They put me under to do it. No other problems and eventually I had it removed which was easy after no using it for over a month. I did rense it out everyday while I had it. Do you expect to resume eating normally eventually?

Thank you for your response. I used ISO source (rehab), Vital (hospital)and now Jevity 1.5 at home. My tube is permanent since surgery isn't possible (too stressful on my good side). Won't do radiation, won't do higher levels of chemo because of possible serious common side effects. My feeding tube first popped out mid January after 3 months, I reinserted it myself (caught it before the hole closed and healed. The bladder eventually disintergrated and now duct tape keeps it tight, but I take it out or it still comes out frequently. I'm holding off on surgery replacement due to 3 previous issues from doctors , nurses, surgeons. Will do that when there is no other choice.

Oh, are you on a specific diet for life

There are a number of helpful videos on G-tube placement and maintenance available on YouTube and other internet sites. They have a provide a lot of very helpful information that will help you learn how to properly maintain your G-tube and deal with most issues that may arise.

Yes, when mine came out I looked up info online and did it myself. Found duct tape beats medical tape and can't beat the staying power, firmness and cost, napkins beat gauze too for cushioning and cost. I've removed, or my tube has come out dozens of times since January and I prefer being able to take care of issues myself. I clogged it with loose tea leaves, seeds,thick liquids and self removal and cleaning is the way. I notice though that the more weight on me the faster the hole heals. I went from an easy 2 hour plus window for reinsertion to less than an hour, or I have to put a sterile file in to repunture and widen. It is cool that it doesn't hurt even if I draw blood at times even inches deep.

Well, I'm glad that you seemed to have found an effective solution that works for you.

I've been battling Stage 4 squamous cell carcinoma for > 4 years. Due to total esophageal obstruction from radio therapy induced strictures, I had a G-tube placed over 2 years ago. It's literally been a life saver but far from problem free. I have them replaced every 3-4 months unless I have other issues arise. At times they have fallen out spontaneously, or have been pulled out when attached to overnight feedings. I am a retired doc so I at times I deal with the re-insetion of the G-tube myself. However, many people are not comfortable or capable doing this. I still make sure that a nurse or doc checks my repair efforts

That said, I have a few useful tips for dealing with G-tube issues that may arise when you don't have ready access to medical care.

With regard to your issues with your G-tube becoming dislodged, or falling out, it's often due to the deflation of the anchoring balloon that secures the tube's placement in your abdomen. Depending upon the make and width of your tube (French/gage/diameter) of the tube that is inserted, they will inflate the balloon with 5-10 ml of normal saline after insertion. Then they will gently pull back on the tube until they feel a bit of resistance. This lets them know that the balloon is properly inflated and they will then cinch down the external circular tab to snug the fit over the stoma.

At times, with normal physical activities the volume of the saline in the balloon may decrease and the tube is no longer secured internally. It may become dislodged and fall out. When this occurs, carefully clean the tube with sterile alcohol swabs or a 3% solution of hydrogen peroxide. Dry it and inspect it to be sure that there are no other obvious structural issues before attempting to reinsert the tube through your stoma. If you have it, use a bit of sterile lubricant on the end of the tube to help ease the reinsertion. After you've successfully reinserted the tube, you can re-inflate the anchoring balloon with 5-7 ml of sterile saline or distilled water using a luer lock syringe connected to the balloon infusion port. Your G-tube has 3 ports. A large center feeding port, a smaller drug infusion port below and to the side of the feeding port, and balloon port with a leur lock fitting opposite the drug infusion port.

Infuse your liquid drawn up in a luer lock syringe slowly through the balloon port to prevent balloon rupture. Once you've filled the balloon, gently pull back on the tube until you feel a bit of resistance. This indicates that you have successfully re-inflated the G-tube's anchoring balloon and it should remain in place. If the G-tube is damaged, irreversibly clogged or severely contaminated, you should not attempt to reinsert it.

Generally, you have a window of about 2 -3 hrs before your stoma will begin to close. If you are not able to access a healthcare facility facility in that time frame, you may be able to maintain your stoma's patency (keep it from closing up) by inserting a clean small diameter straw no larger than the diameter of your G-tube through the stoma. Sterilze the straw with 70% alcohol or 3% hydrogen peroxide and let it dry before insertion if you can. If you don't have alcohol or peroxide, it may be cleaned with fresh clean water or saline. Also, if you have it, use a bit of glycerin lube to coat the straw to ease the insertion of the straw. Many people also keep Foley catheters in their G-tube emergency kits which can be inserted in their stomas to keep them from closing up before they can get their G-tube replaced.

You should assemble a portable emergency G-tube kit equipped with these items and carry it with you when you travel to deal with any issues that may arise.

With regard to the care of your stoma to prevent irritation and infection, every 1-2 days you should visually inspect it and the area around it for signs of obvious infection, swelling or redness. You should gently clean the area around the stoma with either a Q-tip dipped in 70% isopropyl alcohol or a sterile alcohol swab. Its's normal to see a bit of discharge or leakage of gastric contents that may accumulate and form a crust around the tube where it is inserted through the stoma. After you've cleaned the area around the stoma, you should slip a a sterile split gauze pad between the plastic anchoring disc and the stoma. The gauze will cover and protect the stoma from irritation by the plastic cinching disc, absorb any discharges You should secure the gauze with several strips of tape to keep it in place. Your use of duct tape while effective, does not allow for free air exchange and may prove uncomfortable to remove by people with fragile or sensitive skin. I'd recommend Nexcare tape for sensitive skin.

As to dealing with clogs or blockages, you may infuse a little Coke or other cola into the tube with a cather tipped syringe. The carbonic acid in the Coke//cola may dissolve the clog within 10 - 60 minutes. You can attempt to provide a gentle push-pull with the syringe plunger to provide a bit of agitation to help clear the blockage.

If this is not successful after repeated attempts, you can use flexable plastic probes or a thin flexible wire probes (avaiailble on line) to dislodge or tunnel through the blockage. If either of these options fail to work and restore free flow of liquids, go to a health care facility as your tube may need to be replaced.

To prevent clogs and obstructions from forming, you should flush the G-tube several times daily with water. If you are using a pump for your feeding deliveries, you can set up a flush of at least 50-100 ml every 1-2 hrs to keep the tube clear of feedings buildup. Also, if you are using various pureed foods for your feedings you may consider a weekly cleaning with a dilute solution of papain (meat tenderizer). Simply prepare a dilute solution of the papain and infuse about 10-15 ml into the tube, clamp it at a point just above the entrance to the stoma and close the cap on the infusion port and let the solution sit for 15-60 min or longer. You can roll the tube between your fingers to help brake up any obvious clumps while the papain solution is digesting the material coating the inner wall of the G-tube. The solution should digest most of the protein film and build up that may have accumulated from pureed foods,

After 15-60 min, flush the tube with 50-100/ ml of water to clear the papain solution. Visually inspect the tube to see that it is clean. If not, repeat the process allowing the papain solution to work a bit longer. I've left it in to work overnight with no issues.

Also, if you are administering slurries of various medication pills, tablets, powders or supplements, you should flush your G-tube with at least 25 ml of water after every administration to prevent clogging.

I hope you found this information informative and- useful.

Great extra info, thanks. I do things a bit differently. I use antibiotic ointment mostly for feeding tube insertion, I have a home kit and backpack kit. Duct tape works for me and my skin is fair/sensitive. Tape residue is the only issue and I use alcohol wipes to remove it. My balloon deflated then disintergrated months ago. Fortunately I can remove the tube at will do I don't need to go to the emergency room. I prefer my moveable tube to an anchored since my hemiplegia has me using my mouth as a holder for the syringe and tube flap which did tug hard at the tube/balloon. Add to that my left paralyzed and fisted hand gets the tbe caught in it and I don't realize it for awhile. Fortunately my tube care works for me and being a low level masochist helps. Since my surgical team, doctors and nurses caused me more pain an suffering, I know I'm the most competent to maintain it. So far 9 months later I'm still alive ,still on this tube. Will keep this way unless it's impossible for me to and I have to go back to the butchers. Only reason I would do a replacement surgery is because buying one privately is like 300 dollars and that would come out of my pocket without reimbursement. I spent enough on med supplies in the first months at CVS, Walgreens. Now duct tape and napkins do the job inexpensively and effectively. In the end each of us feeding tubers have to decide what works best with trial and error, patience and calmness. Best wishes and blessings.

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.

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

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.