Feeding tube patients: What's your experience?

Posted by jwkelly72 @jwkelly72, Jul 23, 2023

I have a G tube in my stomach and am curious about what you tube feed, problems incurred, everything that has worked.. My tube is a permanent part of me and been keeping me alive since mid October last year. It is no different to me than my mouth, throat, esophagus except it doesn't get cancer. It is a Godsend.

Interested in more discussions like this? Go to the Esophageal Cancer Support Group.

I had a j tube put in before treatment (chemo, radiation plus chemo, then surgery) because I could not swallow.

I could swallow after first chemo but kept tube because my taste buds got whacko and food tasted terrible.

The j tube stayed until several weeks after surgery. I didn’t eat normally for 7 plus months.

Having the j tube so long was best for me. I lost weight with it, but would have been worse if my only nutrition was eating. I couldn’t stand eating. The j tube took eating pressure away.

So, the j tube helped save me.

Having said that, the j tube is annoying. I had significant issues with friction, irritation, and infection with the tube. Three rounds of antibiotics. We finally figured out how to direct the tube so it didn’t drag - pull down - the tube causing skin issues.

We cleaned it closely every day. Eventually, we did not follow advice on keeping the disc tight against my abdomen - that just caused trouble. We experimented until we found best way for me, and my skin.

I’d do the j tube the same way again. I’d learn sooner how best to direct the tube (via tape) to keep it from causing problems.

I’m happy to discuss if you want to call.

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My husband had an esophagectomy last June and received a j-tube during surgery for feeding purposes—the j-tube is inserted into the small intestine rather than the stomach. He's had problems ever since: nausea, vomiting, bloating and intolerance. We've gone through three different brands of formula hoping to find a brand that he can tolerate. Taking more than one container in succession triggers the nausea, etc. The tube has fallen out (or its balloon has deflated) a few times, necessitating a trip to the ER each time for replacement. However, he can't yet eat enough food to sustain himself without the formula so, as a necessary evil, it's here to stay—at least for awhile. On the upside, he no longer has cancer and the tube and formula are keeping him alive.

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@hondo88

I have tonsils cancer. Already gone through 1st round of chemo and radiation. Completed it in January 24.
I have a port and that was a great thing. But it took me forever to cross that bridge. Once they told me it could be removed down the road and not permanent, I went all inn. I’m jumping back into treatment end of this month but I’m concerned about all the weight loss and trouble eating. I am leaning towards a feed tube to combat weight loss from the get go. Is that permanent? Or can it also be removed in the future. Does anyone know.

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@hondo88
I did get port and feeding tube during treatment. I lost about 20 pounds, but gained 10 back once I got on regular ISOSOURCE canisters 6 times a day for feeding tube. The side affects where no fun, but the end result of no remaining cancer was worth it. Let me know if I can answer questions?

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I have tonsils cancer. Already gone through 1st round of chemo and radiation. Completed it in January 24.
I have a port and that was a great thing. But it took me forever to cross that bridge. Once they told me it could be removed down the road and not permanent, I went all inn. I’m jumping back into treatment end of this month but I’m concerned about all the weight loss and trouble eating. I am leaning towards a feed tube to combat weight loss from the get go. Is that permanent? Or can it also be removed in the future. Does anyone know.

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@davidwrenn

From the image you provided, the G-tube does appear to be somewhat deformed. It still appears to be patent. Is your husband still able to receive infusions through the tube? If so, what is the diameter of French (Fr) measurement of the tube?

It appears that the tube deformities apparent in your picture are consistent with repeated physical deformation of the tube, perhaps related to folding, pinching or kinking the tube or the use of a metal hemostat or clamp to stop outflow of infused fluids while switching between catheter tipped syringes or feeding bags.

Where and how often do you or your husband clamp the G-tube when you need to perform infusions? You should use a plastic hemostat to clamp off the tube as it will not damage or deform the soft tubing.

Of course it could be that the current tube inserted is defective but I doubt that they would place a defective tube.

If the tube continues to deteriorate becomes occluded or has reduced flow, it should be replaced.

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My husband pinches it daily to try to break the food up at the opening. We flush it with 100 ml of water every 4 hours, He's on a 12 hour continuous feed, but he has his chemo, iron infusions, and Immunotherapy done at City Medical Dallas. It's still working fine. Thank you for your help.

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@red77465

pic included so you can see what I'm talking about.

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From the image you provided, the G-tube does appear to be somewhat deformed. It still appears to be patent. Is your husband still able to receive infusions through the tube? If so, what is the diameter of French (Fr) measurement of the tube?

It appears that the tube deformities apparent in your picture are consistent with repeated physical deformation of the tube, perhaps related to folding, pinching or kinking the tube or the use of a metal hemostat or clamp to stop outflow of infused fluids while switching between catheter tipped syringes or feeding bags.

Where and how often do you or your husband clamp the G-tube when you need to perform infusions? You should use a plastic hemostat to clamp off the tube as it will not damage or deform the soft tubing.

Of course it could be that the current tube inserted is defective but I doubt that they would place a defective tube.

If the tube continues to deteriorate becomes occluded or has reduced flow, it should be replaced.

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@dcramer

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.

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My Husband is on osmolite 1.5 and does 6 a day by 12 hour continous feed at 120 ml per hour, then does chicken broth by mouth to keep his sodium up. He was doing 8 boxes of Osmolite a day. He was 175lbs when Diagnosed with stage 4 esophageal cancer 1/31/24 and is now up to 188lbs as of last week. Still having issues with low iron. He has iron infusions, Immunotherapy, and Chemo every other week, but his iron is still extremely low. Had to have 5 bags of blood transfused to get his hemoglobin up from 7.1 to 9.0

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@red77465

This is all awesome, thank you. What should my husband do or who does he need to talk to about his tube connected to the stoma is all warpped looking? It looks like it has melted in some areas towards the top near the stoma.

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pic included so you can see what I'm talking about.

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@davidwrenn

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.

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This is all awesome, thank you. What should my husband do or who does he need to talk to about his tube connected to the stoma is all warpped looking? It looks like it has melted in some areas towards the top near the stoma.

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My husband has a G tube, though not permanent as of yet, but it has kinda changed in appearance. Towards the top near the stoma it looks like it has melted because it is so warpped. How does he go about having a new tube line put in?

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