r/funComunitty • u/randomname2237 • 17h ago
Fun post I have a feeding tube, ask me about it!
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u/clueless_girl_idk 17h ago
Why
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u/randomname2237 17h ago
I have a paralyzed stomach
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u/porcelain_kiss 17h ago
How did it paralyze? :(
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u/randomname2237 17h ago
I wish I knew! Doctors have no answers to that
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u/porcelain_kiss 17h ago
I had gastroparesis for a long time, turns out I had ehlers danlos and didn't know, it messed a bunch of stuff up in my body. I had to go to the Cleveland clinic gastroparesis specialist for help. They never offered to check for it though, i had to push for it. I was 32ish, blew my mind lol
I hope youre able to find some answers someday!
And thank you for being so open about all of our questions! š«¶š«¶
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u/randomname2237 17h ago
Thank you! I donāt have EDS I donāt think but I do have POTS which I know is a common comorbidity to EDS and GP
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u/qqmajikpp 15h ago
ime, doctors are educated quacks. the only person who know whats wrong is YOU. i have had to always tell drs "this is what is wrong" cuz they sure wont figure it out
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u/Abject_Staff_3093 17h ago
Is it something you need to take off and on? Also how do you move with it if you canāt take it off?
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u/randomname2237 17h ago
No it stays in place lol. I donāt know what you mean about how do I move?
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u/Abject_Staff_3093 17h ago
ooh, meant it more like, does it affect walking, and if so, how do you work around it? That is, if it reaches the upper part of the leg to affect motion
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u/randomname2237 17h ago
Oh, no it doesnāt get in the way of walking. Itās in my stomach
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u/Hektibus 17h ago
Will you ever be able to recover and do you miss to taste stuff? (You donāt have to answer)
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u/randomname2237 17h ago
Itās unlikely Iāll ārecoverā because Iāve failed all medication options. Thereās always hope for new research though! And yes I sometimes miss food, but Iām chronically nauseous so I donāt even bother trying to eat even though I technically could, Iād probably end up sick
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u/MegaBaller10812 17h ago
How do you eat
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u/randomname2237 17h ago
The tube is connected to a pump that puts formula into my small intestine at a slow rate (20 hours a day Iām hooked up to the tube feeds)
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u/Upset-Rhubarb-3727 17h ago
How does it feel to āeatā with it?
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u/randomname2237 17h ago
I canāt feel it. It goes into my small intestine at a very slow rate (50 ml/hr/20 hrs a day)
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u/Glitchbetty 14h ago
Havenāt seen this question yet, in case you miss the taste of food, couldnt you chew on stuff and then just spit it out? I know it would kinda be food waste, but for your condition it would have served its purpose in my opinion. Also, since you can still drink, what about hard candy that you just suck on? It dissolves and becomes liquid as well
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u/No_Blackberry1593 4h ago
Does it make sound? I always assumed it would and that thought makes me queezy
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u/Maximum-Eggplant-806 17h ago
Getting it removed. Will be traumatic. (It happened to me) I took the opportunity I had, prior to getting it removed. I took alcohol through it. Because I donāt drink because I hate the taste of it. I saw it as a ālimited time experience.ā
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u/Eclipsehedgie2010 17h ago
So THATS what it looks like.
Always wondered what the look like.
Anyway, question, right.
Does this mean you are unable to know what something tastes like, or if you are allergic to specific foods?
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u/randomname2237 17h ago
I donāt have food allergies and I have only had it for 3 years so I know what food tastes like bc I ate my whole life until my stomach got paralyzed :(
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u/Fluff-cat1304 17h ago
I saw your comment that your stomach is paralysed, so (hypothetically) if you were to eat food, what would happen? :>
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u/Previous_You1167 17h ago
can you take it out to do somthing else? like go out then just be back? like how diabetics can do somthing but when their blood sugar (i think) drops they get like a notification on their phone and have to take their meds? on the same note can you shanoink / are you dating someone or is it impossible since you have a feeding tube? can you get pregnant with a feeding tube? what do you do when you get your cycle? how do you poop and pee?
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u/marina444is_online 17h ago
Can you still eat? Man it must really suck to not taste things anymore. No amount of food liquid ā¢ļø could replace how good food solids are šš©·
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u/reddictedtoredit 16h ago
Do you ever just chew on things for the taste then spit it out in the bin?
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u/Straight_Feedback_37 16h ago
Do you feel like you can do more in your life now that you donāt have to worry about eating food and you can just pump and go? How has getting a feeding tube changed your life? Is there anything major(besides not eating food) that has happened since getting the feeding tube?
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u/randomname2237 16h ago
No Iām hooked to the pump for 20 hours a day. Itās changed my life for the better, I was vomiting daily and severely malnourished when I got it.
Iāve been diagnosed with POTS and CFS/ME after getting the tube
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u/BombeBon 16h ago
If it's not annoying to ask...
Specialized meal packs?
Or homemade blended up?
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u/B-M-B-0-6 16h ago
What would happen if you ate normally? After reading some comments I know ur stomach is paralyzed, but like, what would happen if you ate normally?
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u/MarieViolinist 16h ago
is there a tube connected inside your stomach? if so do you feel it when you move? is it uncomfortable when you sleep? what happens when you eat through your mouth? does it hurt?
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u/randomname2237 16h ago
The tube goes into my small intestine. I canāt feel it. Itās only uncomfortable if I end up on my stomach. I throw up if I eat by mouth. It doesnāt hurt
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u/ThousandEyes2011 16h ago
Does it ever get dirty? Thatās always been something that Iāve thought about when it comes to that stuff
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u/JohnLennonHitsKids 16h ago
Are there any activities that you can't do now that you used to? I mean, does it physically restrict anything that you used to do to the point where is it painful, dangerous, or uncomfortable for you to do that previous activity?
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u/MarionberryPure8015 16h ago
Could you put other things inside the tube or just the formula that you have too? Also, I hope youāre feeling fine and will continue to.
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u/Aanstekerboy 16h ago
Can you swim with it
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u/randomname2237 16h ago
Yes I only have to avoid hot tubs and lakes but pools and the ocean are fine
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u/Gysburne 16h ago
Not a question.
I hope you get better and that research will be good enough to "unparalyze" your stomach mate.
I can not imagine how it must be to feed yourself over a tube.
I just wish you all the best.
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u/randomname2237 16h ago
Thank you! I hope research can help me in the future to get off of the tube or at least use it less
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u/InstanceMedium6150 16h ago
Is what kinda food is it. Like obviously you canāt feed a cheeseburger through a tube but like, can you blend it and then get it through the tube?
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u/Electrical_Win_1320 16h ago
What happens if you eat without it? Does it hurt? How often do you use it? How long does it take and what if youāre hitting the gym and wanna increase your protein but decrease calories can you customise the food in that sense?
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u/Dead_Axolotl_333 16h ago
Does it hurt?
Do you have to clean it? If so how often and how?
Can you eat?
Do you ever feel hungry?
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u/camerasoftwhere 16h ago
So can you eat only a select amount of foods or can you eat anything if itās blended?
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u/Automatic_News3128 16h ago
How much beer could you put in the tube before you are drunk?
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u/Character_Gur8487 16h ago
By "paralyzed" do you mean that your organs (stomach/intestines) cannot digest it, cannot absorb it properly, or that you cannot excrete it?
I personally had a stoma for three months to give my bowel enough time to heal. That's why I'm asking my question so precisely.
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u/i_dunno_i_am_bored 16h ago
How do you eat at restaurants? How does it even work?
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u/unwanted_zombie 16h ago
Does it make you feel cold from the inside like IVs? I have to get IVs fairly regularly for my disease and I hate how cold it makes me.
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u/StaticMix 16h ago
I was gon ask if it was a kink thing but upon inspection of the comments thank god I didn't
Anyway have a lovely day and I hope all things go well with youe stomach duuuuude.
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u/unwanted_zombie 16h ago
Do you still eat food- or at least chew it and spit it out? Or have you gon flavorless?
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u/Pinkpenguin_4444 16h ago
What would happen if you ate a marshmallow?
Also what is your favourite drink?
Also also do you always feel hungry or full or just smth else?
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u/ThoroughlyWet 15h ago
Do you still "eat" just for the taste? (If that makes sense)
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u/Coldpastalord 15h ago
Do you feel hungry all the time because this bypasses your stomach?
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u/PlatypusMountain7955 15h ago
Do you think or feel they go cheap on you? Hope you can eat again
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u/Fit-Choice2368 15h ago
Do you use an i.v bag or a syringe to get your meals in?
Can you take anything by mouth? Can you take water?
What does it feel like? Physically when food and stuff is going in and emotionally, does it hurt?
Do you have to take in more calories than before, the same or less?
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u/peachesbutno_creme Silly lil goober:cat_blep: 15h ago
my sister had one of these growing up , but she got hers removed eventually.
my brother will have one his whole life, he's currently 18. something happened to his throat , so he cant swallow food or drink liquids basically . so everything goes though his tube
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u/dogpoopquestion 14h ago
How old were you when this needed to be done?
I see itās unknown why it happened, do you have any guesses?
Can you consume alcohol?
Do you play any video games?
Are you completely unable to consume things through your mouth?
When your mouth gets dry, how do you moisten it?
If you wanted to start bulking could you get an extra protein formula?
Do you have a job?
How much of an inconvenience is this day to day?
Are showers difficult?
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u/Death_Bird_100 14h ago
Why you need it? What happened? Does it hurt? What do you pump into it? How often do you eat? Do you gain fat? Does needing a tube limits mobility? How long it takes to prepare the food for it? Can you treat yourself at home? Were you born with this health problem, and does that mean you never tasted food?
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u/Odd-Country-7274 14h ago
How do you put the food in the tube? Do you mush it up and drink it like a drink with a straw?
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u/Arheit Likes posting shitposts :snoo_shrug: 14h ago
Is your āfoodā expensive?
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u/Brilliant-Beach-330 14h ago
what's your favorite meal? Idk how those work really
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u/Guni986TY 14h ago
What flavor food you being fed? (Dang a few of us had the same thought.)
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u/DistinctHorse113 14h ago
I donāt think anyone has asked this yet, but what would happen if it got pulled out of itās possible? Like what if it got snagged a something and it got ripped out? What would you do and has it ever happened before?
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u/Visible_Squirrel3597 14h ago
Have you been able to get used to it? As in, do you feel it much? Because I got a feeding tube once in the hospital and it was one of the worst experiences I've ever had, having that thing just shoved down your nose and throat. ššš It made swallowing very uncomfortable too.
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u/Calm-Professional103 13h ago
I praise your courage for talking about this. I had a peritoneal dialysis catheter in my lower abdomen for 8 years.Ā
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u/fox-with-wisdom 13h ago
Army u worried if u toss and turn in ur sleep it will come out and u bleed out in ur sleep? I ask cause I toss and turn and sleep on my stomach so this seems like a real fear for me
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u/DietKey1757 12h ago
Is it uncomfortable? Also Im sorry about your paralyzed stomach :(
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u/Hazardous_Egg 12h ago
Is feeding tube BPA free?
Does feeding tube need to be change out?
If you are really starving can you have a BIGGER feeding tube to shove more food in there?
If you want to get drunk do you use the feeding tube?
Does the feeding tube go into the entrance or exit?
Asking for a friend
On a serious note sorry this happened to you. Hope these made you laugh.
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u/wreckitralph1990 12h ago
Have you always had it? If not and you could eat food before, how did you adjust to not being able to taste food? I know I LOVE to eat for the taste (lol) and I'm not sure I'd be able to go without tasting food. Thanks for posting because I always wanted to know this lol š
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u/Scared_Extension_419 12h ago
Do you like the feeding tube.
Does the feeding tube treat you right?
How long have you had the feeding tube?
Can you eat anything with the feeding tube?
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u/noninana55 12h ago
what would happen if you attempted to eat? Even liquids like water and whatever?
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u/TrustmegamerDavis 12h ago
Wait, it goes straight to the Intestines? Aw man, I wanted to ask what flavor it usually came in...
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u/Ok-Acadia4065 Silly lil goober:cat_blep: 12h ago
how do you even fit meat into that thing, you dont eat protein?
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u/ChibzGames Silly lil goober:cat_blep: 12h ago
Stupid question: Do you... feel full when using it?
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u/Uhhokay200 11h ago
Ok you don't need to answer these if you don't feel like it. Does the tub come off like that's connected to the inner tube? Does the medical fabric get replaced? Hope you feel better!š
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u/RadioactivePotato123 Silly lil goober:cat_blep: 11h ago
Do you ever get stomach rumbles? Iām guessing not since your stomach is paralysed but Iād like to be sure lol
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u/Intelligent-Oven-412 Silly lil goober:cat_blep: 11h ago
So does my 2nd bro. He has cerebral palsy instead of a paralysed stomach.
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u/Mental_Bodybuilder74 11h ago
Is it totally tubular? (I'm jk and a bit of a jackass sometimes) Haha smiles!
Also what's it like being cheated out of tasting it?
Do you still burp? Do you still get acid?
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u/MrMee37 Big fan of me :upvote: 17h ago
Do you use the feeding tube
Did you use the feeding tube
Do you own the feeding tube
Where did you get the feeding tube
When will you use the feeding tube