#feedingtube — Public Fediverse posts

RE: https://oldfriends.live/@paul/116488793878327130

As always, it's ok to #AMA about my feeding tube. In 2012, after getting my tube and getting no information about how to care for it or use it, I joined social media to advocate and help people, including posting YouTube care and instructional videos. On Twitter, my profile handle was #FeedingTubePaul

So, whether you need help with one, you or a loved one has been told you need one, you are choking and feel one might be in your future and you are worried, or just curious about 14-years with one, the diet, socializing with it, etc ask me anything. #Medical #FeedingTube #MedMastodon

We had to change out my feeding tube last night and it was the first time doing so since we got the new EN-Fit style tubes. We've been requesting legacy Y-Port tubes so we can use up our supplies. The new tube has a hard silicon ring at the bottom of the balloon tip to prevent a tube from popping out if the balloon that keeps it in burst.

This means, after you remove the water from the balloon and go to pull it out, it won't come out because the ring is larger than your stoma (hole going from the outside in.) You have to gently tug it out. It's a good idea, esp if you ever had a tube come out and the stoma close up overnight.

A hundred things went through our minds as to why it wouldn't come out after changing the tube every three or four months for 14-years and it just coming out, sometimes on its own because you have gas in the belly.

We pretty much hate the new EN-Fit feeding tubes. Everything has to be screwed in, the ports stay nasty, they don't let people with motor control issues to self-administer, etc. #FeedingTube #Medical #MedMastodon

As always, it's ok to #AMA about my feeding tube. In 2012, after getting my tube and getting no information about how to care for it or use it, I joined social media to advocate and help people, including posting YouTube care and instruction videos. On Twitter, my profile handle was #FeedingTubePaul

So, whether you need help with one, you or a loved one has been told you need one, you are choking and feel one might be in your future and you are worried, or just curious about 14-years with one, the diet, socializing with it, etc ask me anything.

I've now had my #FeedingTube for 14 years this month.

At the time, they still didn't know what disease I had and thought it was probably multiple sclerosis.

I've lived a normal life with the feeding tube, (outside of the disease that requires it.)

If people are facing the need for one, I always counsel them that anything they can do without needing one, they can do with one. It's just an alternate food source.

A lot of people think feeding tubes are for end-of-life care and that is the furthest thing from the truth.

Feeding tubes are for the living, not the dying.

#Medical #MedMastodon

11-Month-Old Girl Diagnosed with Rare Genetic Disorder That Affects Fewer Than 100 People: ‘Breaks My Heart,’ Mom Says

NEED TO KNOW Kayleigh and Ryan Dunn’s 11-month-old daughter daughter, Lorelei, was diagnosed with the rare genetic disorder…
#NewsBeep #News #US #USA #UnitedStates #UnitedStatesOfAmerica #Health #feedingtube #geneticdisorder #mobilitychallenges #PatrickLawlor #RyanDunn #WXYZ
https://www.newsbeep.com/us/567186/

11-Month-Old Girl Diagnosed with Rare Genetic Disorder That Affects Fewer Than 100 People: ‘Breaks My Heart,’ Mom Says

NEED TO KNOW Kayleigh and Ryan Dunn’s 11-month-old daughter daughter, Lorelei, was diagnosed with the rare genetic disorder…
#NewsBeep #News #US #USA #UnitedStates #UnitedStatesOfAmerica #Health #feedingtube #geneticdisorder #mobilitychallenges #PatrickLawlor #RyanDunn #WXYZ
https://www.newsbeep.com/us/567186/

RANT: Started using the new ENFit feeding tube bags and accessories. ENFit was an industry-wide change to "fix" a problem that didn't exist. I put it off as long as I could. Feeding tubes have been around since the 1800s, pretty much unchanged. There wasn't a problem "mixing up" feeding tubes with intravenous IVs. They could have colored coded the existing setup.

I shouldn't have to have to use a wrench to use my feeding tube or its accessories, like medication syringes. I shouldn't have to use an ENfit cleaning kit because stomach contents (puke) now reside in the connections after using them because you can't flush the cavity. #Medical #MedMastodon #enshittification #Enteral #Nursing #FeedingTube

I shouldn't have to spend a hundred dollars to buy various adapters to use my stocked up medical supplies or spend thousands to buy new ENFit supplies. Of course, nothing is being produced "generically" now. It's all proprietary and shared by the few large mega-medical supply manufacturers through a trade organization they formed just for enteral (feeding tubes) care called the Global Engineered Device Supplier Association

After 14 years with my feeding tube, ENfit has now taken away my #accessibility to use my feeding tube and self-administer some of my medical care.

The ENFit transition is a global patient safety initiative to standardize enteral feeding tube connectors, replacing old "legacy" connectors with a new, twisting design to prevent misconnections with IV lines.

https://stayconnected.org/enfit/

I've now had my feeding tube for 13 years.

Many people knew me as #FeedingTubePaul due to my previous social media accounts on other web platforms due to my advocacy and how-to videos.

It's important to know your choices when filling out your living wills, esp younger people, like if you want artificial nutritional life support. COVID showed us that people of all ages should be aware of their options. I almost didn't get a feeding tube because I was unaware of what life with one would be like. I'm glad I did. It took watching videos of children born with digestive issues living their best lives, just eating differently, to change my mind.

Here is a +decade old short profile about the reasoning for my #FeedingTube from the makers of the Mic-Key feeding tube. #MedMastodon

It records the beginning journey for me. #Introduction

Edit: They changed their website after merging companies.so the link to Wayback Machine. https://web.archive.org/web/20200805134551/https://tubefed.com/tales/meet-paul-chambers/
#MedMastodon #Parkinsons #Health

I've been meaning to write this post for several months now to talk about our daughter's problem and, above all, about this center, https://www.notube.com, and the benefits it has brought us- well, rather, our daughter. Thank you NoTube!

https://jcletousey.dev/en/posts/2025/03/13/no-tube-with-notube/

#personal #family #healthcare #feedingTube #NoTube

Random #FeedingTube life coping hack from of 14-year feeding tuber:

I gargle with a half shot of Johnnie Walker Black Label scotch and my wife makes my lip care balm out of bacon grease so I can still enjoy the taste of bacon.

2/ Here's a YouTube embed of that video I shared as my first Tweet in 2013 about Changing my feeding tube at home. #FeedingTube

CW: the video shows a medical procedure at home. Some might find it disturbing starting at minute 4:20 as the feeding tube is removed and a new tube is inserted into the body. It's not disturbing to me. It's part of my routine life now, after 12 years with a feeding tube. #MedMastodon
https://www.youtube.com/watch?v=odroWlO06MI

Out of the blue, wife brings me some homemade lip balm & it's made out of Slim Jims. She was like, figured you were tired of bacon flavored. Of course, never. It'll pair well with my Johnnie Walker Black Label mouth rinse

Find you a life partner who will blend up Slim Jims as lip balm &you'll have a lifelong life partner

Shoutout to my wife! I don't know which I like better... The homemade bacon flavor lip balm or the Slim Jim

Every little taste source helps after 12-years with a #FeedingTube

For 10 years, I've consumed nothing but feeding tube formula through a feeding tube. Can't swallow food or liquids.

Turns out, the calories in my "complete, balanced nutrition with fiber" prescription food comes from corn syrup, canola and corn oil. Junk food levels.

I now have to add a diabetes medication because my glucose level and A1C is above normal.

#FeedingTube #Health #Healthcare #Medication #Diet #Nutrition #parkinsons #MSA #ParkinsonsPlus

Today, I have a rare craving.

Pinto beans, fried potatoes, chow chow and shortening cornbread but there is no way to turn that into a tastable (belch) feeding tube meal.

It would just give me bland taste, musical toots (gas) and bloating.

Before I got my #FeedingTube in 2012, that was my regular meal of choice, going back to my youth. I was raised (in Ohio) by my coalmining grandparents from Cumberland Cap (Kentucky). We was poor.

I've eaten thousands of bowls of soup beans. LOL #AMA

Many people know me as #FeedingTubePaul due to my previous social media accounts on other web platforms, advocacy and how-to videos.

Here is a decade old short profile about the reasoning for my #FeedingTube from the makers of the Mic-Key feeding tube. #MedMastodon

It records the beginning journey for me. #Introduction

Edit: They changed their website after merging companies. I'm changing the link to Wayback Machine. https://web.archive.org/web/20200805134551/https://tubefed.com/tales/meet-paul-chambers/

https://tubefed.com/tales/meet-paul-chambers/

Over a decade with a #FeedingTube & when we go to dinners with people, either out at a restaurant or in the home, this usually is my setup

A large mug that my formula is poured into, a syringe to "eat with," a coffee cup of "flush" water and usually something from the menu like a cup of coffee cooled, juice, etc. Sometimes I need something with fizz

I will order a virgin Bloody Mary if there is a bar or something off the menu purred. Bartenders will mix drink me about anything, including meat

More than a decade with a #FeedingTube, strictly on medical formula, and I barely get cravings for old food anymore but today I have a hankering for iron skillet shortening cornbread, pinto beans with thick slices of onion, chow chow (like a cabbage relish) and fried potatoes with a stiff, strong cup of black coffee.

I used to eat that 4 or five times a week. We always had an ole fashion pot of pinto soup beans and a pan of cornbread in the house.

11 years ago this week, I got my #FeedingTube. I was nearly dead when I consented. Teens with tubes, living active lives, convinced me tubes were for the living & not dying. #MedMastodon

Here's a photo of my late Jake waiting for me to return home from the hospital. Wife said he stayed in that window the entire time I was gone.

Was blessed to have him for 16 yrs, vibrant, but elderly, until last few days of his life

Next week is the 2nd anniversary of him crossing over the rainbow bridge

Approaching my 11th year with a feeding tube.

I normally am fed with a pump but when it is time for dinner, or if we go out to dinner to a restaurant or event, I make a "plate" and push a jug of feeding tube formula in over time, as if I am taking bites.

It also helps those I am with not be so self-conscience about eating in front of me.

Often, I will order something, too, like a shake, milk, non-acid juice, coffee etc.

#MedMastodon #FeedingTube #Health

Time to put up the #ChristmasTree
#Christmas

#FeedingTube #Xmas

When I got my #FeedingTube in April 2012, #Parkinsons, over a decade ago, it took 3 months for my food addiction to end

Supporting Elon's Musk's :elon: #fascist takeover of #twitter not so much

There are some users I am going to grieve and miss. My hope is eventually they show up around here

I'm #SelfHosting my own instance & the #Fediverse will always be my new home

I do need to hire/find someone trustworthy @Gargron @stux to make sure my server is secure and optimized

#TwitterMigration

Having a #FeedingTube for ten years now, #ThanksGiving dinner for me means exchanging the mic-key low-profile feeding tube for a 24 French sized G-tube and enjoying the turkey and all the side dishes pureed up as 'smoothies' to push through my tube.

Can I taste without "eating?" Do you taste the Taco Bell the morning after? So, same theory.

#Introductions
About me:
https://tubefed.com/tales/meet-paul-chambers/

@stux

My monthly #FeedingTube supplies and formula are billed over $10,000 per every month.

Luckily, Medicare helps with most of it, including driving down the max that I may be billed to around $100 per month
#HealthCare #Medicare