Anyone Caring For Someone who Uses A Feeding Tube?

Hi @duvie, I see you've met others in the caregiver group on this discussion https://connect.mayoclinic.org/discussion/struggling-to-care-for-copd-patient/ But I'm glad you started this discussion specific to the topic of caring for someone with a feeding tube. I'm tagging @gaybinator @adriennef @jano so that they may be able to answer your questions, in particular your first one about "what is a good way to secure the tube from falling out or stretching the stoma larger which could lead to stoma leakage?"

Is the feeding tube permanent or temporary?

@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.

Hi @duvie! I had a feeding tube for over 2 years- mine was a mic-key button. From what my doctors told me, the leakage and stretching are inevitable 🙁 I found some awesome "pads" on etsy. They can easily be washed in the washing machine, and seemed less expensive than the gauze.

I love @gaybinator's idea to check out the Facebook page. There are many unique challenges to using a feeding tube! Of course, we are always happy to answer any questions too!

How long has your patient had the tube?

Hello @colleenyoung, nice to meet you. It's always nice to meet other members as I did on Srugling to Care for COPD patient.
I was very surprised when I typed in the search bar, "feeding tubes" there were no matches. Maybe I needed to type more in to the search bar.

According to; Feeding Tube Awareness Week Media Page which can be downloaded as a PDF states;
"Seventh Annual Feeding Tube Awareness Week February 5-9, 2018. New York, NY - The Feeding Tube Awareness Foundation is celebrating its seventh annual Feeding Tube Awareness Week from Feb, 5 to 9, 2018 (Realizing its passed but has important info).
About a half million children and adults in the United States alone rely on feeding tubes, a number that is expected to increase.
Feeding tubes are not just for those at the end of life, they provide necessary nutritional support for children to live,grow, and thrive. There are well over 350 conditions and diseases that can require tube feeding in children." This is just one of many paragraphs mention in this article.

That's why I was so surprised to not find any matches or groups specifically for feeding tubes or TPN with so many who depend on a
feeding tube or TPN for survival.

The tube is permanent. Thanks for your response.

Hello @gaybinator, I attempted yesterday to respond back to your comment. Got half way through it and had to leave it to care for Jo (COPD patient).
Hopefully I'll be successful this time, lol.

Radiation sure takes its toll on saliva and swallowing aspects of the throat. We also use a tubie pouch which we get from Amaon along with tubie pads. much like @adriennef picture but ours has a snap. Using the tubie pouch sure helps protect the tube especially if someone is using a feeding pump.
The tube coming from a pump can get caught on anything or if you have a dog that likes to jump can pull the tube completely out.
I like your idea of drawing a gasket. Shows a sense of humor despite having a tube.

I'm glad you mentioned Adult GTube Feeding which I'm already a member. Ron (founder of Adult GTube Feeding) and I have exchanged comments both in his group and on Inspire's site many times. I'm sure he's probably attended Oley Foundation"s annual Conferences however I never met him to my knowledge. I've missed the last two. Real Food Blends is one of the booths set up at the conferences for others to check out.
They even had some samples to give out when I went.

Since you are also on other sites and you mentioned Real Food Blends I suppose you already know about EnFit. Well that's another story.

Thanks for responding.

Hello @adriennef, I'm glad you were able to have your tube removed.
Yes, the risk of the stoma becoming stretched out and resulting in leakage is a real possibility. Many Drs and nurses aren't aware how to best stabilize the tube from any movement, in/out, up/down, or side to side to help reduce or prolong the stretching of the stoma.
I I have used the Hollister drain attachment that has an adhesive tape and a zip tie to secure the tube. However, I find the adhesive sometimes creates skin damage due to the adhesive. Also the Hollister drain attachment doesn't give someone enough room to clean or treat any irritated skin.
there are adhesive attachments that are generally used for TPN to secure the central line. I have never used any of these but I know others have to secure their feeding tube. Maybe a Mic-key would be good as a G-tube but balloons are not recommended for J-tubes since they take up a large portion of the intestine which could cause blockages.

Love the tubie pads. I notice yours don't have any snaps. Ours has a hole in the center with a slit and snap. It's what I use along with 2 strips of paper tape to better secure the catheter. I also use plumbing faucet washers cut on one side to use as an outer bolster under the tubie pad. Hate when stiches are used to hold a catheter but understandable for new patients.

He ruptured a hole in his esophagus back in Oct of 2009. Drinking straight Vodka damaged the esophagus. We have been caregivers for 8 years.

Thanks for the response. Sorry for rambling on. I tend to do that many times.

Hello Everyone,
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?

Oh wow...I don't think I even knew that. I had a total thyroidectomy and did not need radiation at the time. I am not so sure I would opt for radiation at any point. As far as alternative methods, I use only certified therapeutic grade essential oils and supplements as well as staying away from non-whole foods and sugars (I know this is controversial, but I believe sugar feeds cancer) Hope this helps. Blessings

Hello @stefanie, Welcome to Connect. I see you joined the beginning of March. I wish I had gotten back to you sooner but sometimes time is limited. Surprisingly, many times patients are not told of the possibilities that could happen as a result of various types of treatment options.
Unfortunately, radiation could take it's toll but even though it could make it harder to swallow, it could also help someone to survive a particular disease or medical condition. I'm glad to hear you didn't need radiation at the time. I have met 2 members of another group who have been using a feeding tube for 40 yrs.
I have met quite of few feeding users that have been cancer survivors both recent and long term survivors.

I would not want to discourage you or anyone else from getting necessary treatment that one's medical team recommends.
Yes, I have also heard that cancer feeds off of sugar. I don't know about certified therapeutic grade products.
Could you help me as well as others to understand what they are and the health benefits?

Thanks for the response

For my husband we use medical tape to secure it and a cloth gauze next to the skin or shall I say in beteeen the plastic and skin then it is all taped down with a cloth tape