Mayo Clinic Connect
Male patient has a catheter as a J-tube. Other than stitches that can be painful, get infected, and break, what is a good way to secure the tube from falling out or stretching the stoma larger which could lead to stoma leakage?
Liked by Leonard
Many thanks for the responses. I know in many cases radiation of the neck can cause patients to be placed on feeding tubes as well as certain digestive disorders and short bowel syndrome and many diseases or conditions. How many others are using an alternative nutrition method?
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such priceless information for new G/J tube users. I love this conversation. Thank you for starting it. It's so very helpful!
Liked by Errol, Volunteer Mentor
I am a person with tube feeding J tube
I use a stretchy mesh around my waste to hold tube at a consistent position at waist – stoma level and change the tube every 3 months.
Liked by Errol, Volunteer Mentor, Colleen Young, Connect Director, Teresa, Volunteer Mentor
Hi @ellareed, How long have you been using the J tube? Is it permanent?
Liked by Errol, Volunteer Mentor, Teresa, Volunteer Mentor
@ellareed, Does this stretchy mesh cause the tube to lean to one side when you apply this mesh? Anything that will cause the tube to lean to any side or attempt to get it to lay flatter in hopes of eliminating the bulge it may cause under your clothing can put pressure on the stoma which eventually can lead to stoma leakage. Do you know what type of tube you have? I would like to help you find a better way to secure your tube safely.
Liked by Teresa, Volunteer Mentor
Another Facebook page is Tubie Tips and Tricks
Fortunately, he has learned to use a small amount of water (because fluid restricted -dialysis) with each bite and he is eating moist foods like a horse. He had his last radiation treatment on his neck April 2017. It was the treatment which destroyed what remained of his salivary gland. He tried hard to eat, but could not. He reached 116 lbs in June 2017. The tube was installed on June 24. He is up to 140 lbs! This after we started using real food in the tube, as well as formula.
He ties his in a knot, and it works for him. Works for me that I don't have to wash it.
Hello @gaybinator, I do belong to many sites but Tubie Tips and Tricks is a new one on me. I did join and do a lil browsing. I found it very interesting and I could fit right in. My main site for the past 5 years has been "Oley Foundation-Inspire." Oley does have other sites such as Facebook but I've always preferred Inspire. Some Facebook sites may have a quicker response time than Inspire. I just like posting in multiple groups who have feeding tube patients attempting to reach as many patients worldwide as possible.
You mentioned your husband didn't want to use the pouch due to needing to be washed. We do use the pouch and some are getting old. I wash them by themselves in hot water, soap, & a lil bleach. Throwing them in the dryer they can really stick to one another. I guess I've got about 20 pouches.
How is your husband doing with his tube, feedings, etc.?
I don't have a feeding tube, but I feed thru a hickman catheter secured into my chest.Anyone dealing with this?
Hi @wwill. I'm tagging @nicollissa on this discussion. She too had (has?) and Hickman catheter.
Will, Is the Hickman line a temporary or permanent nutrition solution for you? How long have you had it?
My hickman catheter was placed due to short bowel syndrome as a result of long term crohns disease and many surgeries, blockages, etc. It will be permanent solution as I was loosing weight and malnurished and not absorbing nutrients from my food. I have to explain to alot of people that I eat through my heart,not my stomach. The liquid perscribed nutrition goes thur a catheter in my chest into a large vein that goes into my aorta. It is then pumped thru the veins in my body. I add vitamins to the solution, and have been taught how to administer the feedings and care for the catheter. I have had my catheter for a bout a year and a half. I will have it the rest of my life. Also, I have problems with dehydration due to high output from my ileostomy. I can administer fluids thru the catheter also. I hook-up my feedings around 7:00p.m., and it runs overnight about 10 to 12 hours. It does take some getting used to. Sometimes in I life you do what you have to do. I hope this answers some of your questions. I think the confusion comes from getting fed thru a catheter that goes thru your heart and veins and by passes your stomach; v.s. a tube that goes into your stomach.
Liked by Teresa, Volunteer Mentor, C Elizabeth Clark
So with a feeding tube you do not have any taste of anything and you can not eat anything form your mouth. My doctor told me if I do not start eating more .That he wants to be me on a feeding tube. I just do not if I want to do that.
@fcleaner1 You can see my husband's story above posted in May of 2018. He would not be here without the tube. It was removed 3 weeks ago. Unless you have swallowing issues, the tube doesn't prevent you from taking food by mouth. You can also put your meds through the tube.
Liked by Colleen Young, Connect Director
I only have expierience with a tpn thru a hickman catheter. If you can still swallow and it is ok with your doctors, you may still eat what they advise. And yes, that you can taste. But I cannot taste my tpn solution, which is what keeps me alive.
@duvie @coleenyoung @adriennef @jano
My husband lost his saliva glands to radiation, so the tube will be permanant. We have been fine with the tube just hanging and looped around itself so it doesn’t hang below his shirt. We clean around the stoma with gauze dampened with some wound cleaner, then cut a “flower” from a Telfa pad to put behind the bumper. (This was the only picture I had! I drew a gasket on it because we were talking about blowing a gasket. It was funny at the time.)
The belt has a slit in the back to put the tube through, then you coil it and enclose in the Velcro pouch. It is available from Amazon and other places. My husband has not used it. It would have to be washed.
Some people use a lanyard for support.
I highly recommend Adult GTube Feeding Facebook page to you. People from around the world share their problems and solutions for g and j tubes. You will find that Real Food Blends (RFB) is frequently mentioned. They are pouches of real food for tube-fed people. It is covered by Medicare as formula is. I think it is absurd that doctors push the formulas when the tube is just a method to bypass the mouth. What doctor would recommend that someone eat exactly the same thing every day? Yet many are reluctant.
I have a GTube and I dont use anything to cover it. Just wash it with the soap water when I shower, dry the skin carefully and attach the end to my bra or with a silicone tape. At the beginning I used the pouch and some slit gauze but the doctor told me just to wash it in the shower and it is working great. Hope this helps.
Liked by Colleen Young, Connect Director, Kanaaz Pereira, Connect Moderator, Becky, Volunteer Mentor
Hi. My husband's feeding tube balloon deflates about every 3 months and we have to go to the emergency room to have a new feeding tube put in. Any experience with this? Haven't heard from anyone else who is having this happen. Thanks.
Liked by Becky, Volunteer Mentor
@walisky Hello and welcome to MayoClinicConnect. Here at Connect, we help support and help each other. Have you mentioned this problem with the tube deflating to your husbands doctor? Is your husband seeing a gastroenterologist? Usually these specialists have a specialized nurse who is able to help with feeding tubes. Why don’t you give the office a call to see what they might suggest? Have you already learned how to care for and manage the tube and the stoma? Gee, that’s a lot of questions! See what you can find out in the next day or so. You can also go to the wound and ostomy nurses website. They have a function to help you locate a specialized nurse near you. http://www.wocn.org Let us know how you do! This isn’t an overnight fix, but it will give you some future resources
WWILL, What a splendid solution for your independent care for you. Yes, we do what we have to do.
From 1998 to 2000, my husband's mother used a G-tube at home with us as inexperienced caregivers and a family care nurse who didn't know how to provide tube feedings. The home health care nurse firmly changed the plan for a reasonable schedule with a reasonable amount of nutrients. My mother-in-law decided we could manage without a home care nurse, so we advertised for a Monday-Friday aide with tube feeding experience and airway care for a partly-paralyzed throat. In 1998, I took a class in Managing your Home Care Provider presented by Washington State's Protection and Advocacy and learned how to advertise with a concise newspaper ad, how to do a telephone screening interview, A local voluntary care management service provided by a cloistered convent of women who had been health care professionals maintained a list of certified home caregivers and upon our application with a fee, provided a list of daytime providers for part-time employment. My mother-in-law decided to personally interview three of the applicants. One patted her on the head, causing a very short interview. The single parent young woman with nursing home experience was hired for 5 days a week. We learned the payroll process for a domestic worker that the IRS and the state expected. We set up a medication and nutrition and aspiration care schedule and personal care routine, sharing the round-the-clock tasks. My mother-in-law and her son provided payment to the caregiver. Sadly the tube feeding process and aspiration care was not the best, with at least one bowel infection and declining health. Tube feeding with a combination of nutrients, including real food, might have been better. I hope enteral nutriton care for folks with swallowing problems has improved immensely!
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