Getting a Feeding Tube 🏥

This was my experience getting an NJ tube placed for my Gastroparesis and severe hypoglycemia.

[@mystripedlife220]

Totally realised we have the same channel name and condition!! Found your channel when my boyfriend was searching for mine haha! Weird coincidence! I was just evaluated for gastroparesis yesterday but I've the opposite, I've got gastric dumping, where the food goes through too quick. Horrible and painful just like gastroparesis. Also have pots and eds 3. Even though it's not the nicest to experience, I hope that your tube can help manage your gastroparesis better and help you feel a little more human! Gentle EDS hugs!! Xx

[@chelseyfaye8778]

This comment is 2 years old but im praying for you❤

[@ioletmcfarland3017]

Been there done that

[@juhaa4180]

@@ioletmcfarland3017 k

[@zebrashark5339]

I have one to I hope you feel better

[@nbt3663]

You are so AMAZING. Your heart for others is beautiful. I have gone thru cancer and it can be so difficult. Thank you for your encouragement!

[@the7thwreck]

New sub from England! There is another girl called Amy Lee Fisher on here who i'm subbed to who also has Gastroparesis, EDS and POTS. You are an inspiration, your strength! wow! Hope alls well sweetie.

[@DahliaVonHellion]

chronically Jaquie and Christina doherty do as well!

[@drewharris7785]

Also The Raw Life

[@DahliaVonHellion]

Drew Harris Janice (the raw life) doesn’t have EDS or gastroparesis but she does have POTS! And narcolepsy.

[@erin3258]

I’m here from Amy! 💓

[@kirstysmith5244]

Love

[@alimorales868]

You are a great teacher! Thank you for the information you provided to us. God bless you!

[@abujagall]

I remember when I got my feeding tube for a couple months I had to have the peg tube put in just to give the incision in my stomach time to heal then I was able to move from that to a low profile tube/ button. Basically those two types of tubes are ones that are directly placed in your stomach through an incision in your skin. l knew it was going to help but believe me when I woke up I was in a lot of pain since I can't see that great my other senses are really high including feeling and that especially goes towards pain. A small bit of background my 24/7 nurse / caregiver is Lebanese and her husband is Persian or Iranian. I've lived with them since I became a young adult because my folks just can't keep up with my care anymore. Thanks to them I know Arabic and Farsi which is Persian Iranian language. Before going into surgery my caregiver played her Qanun a popular Arabic instrument and her husband played his kamancheh a Persian equivalent to the violin after the surgery I woke up to my recovery nurse putting the little oxygen thing in my nose since I have CF and anesthesia and my lungs don't always work out too great together. My recovery nurse new me really well and I was in so much pain I was calling my caregivers name and her husband's name and I was also saying Catholic prayers in Persian and Arabic. She knew I was in pain so she held my hand well the other nurse was getting me morphine and she could tell I really wanted my caregiver and her husband and she told me that they will be here soon. Then I fell asleep for short time in the recovery room again and I was waking up to hearing some music being played it took me a second to realize that it was my caregiver and her husband playing traditional Persian and Arabic music with their instruments and I saw my recovery nurse administering some morphine with the Beautiful music I could hear wonderful singing and after my nurse gave me morphine she held my hand and was calming me and it took me a second to realize that my caregiver was sitting right next to me singing Beautiful Arabic music while playing traditional music along with her husband. When I woke up to them playing and singing our traditional music that pain went away and I was in so much peace the rest of the nurses in the recovery room thought their music was so beautiful and unique. And when we came back to my hospital room I saw a big black case sitting on the couch my caregiver brought it to me and she sat it on my lap and opened it and it was my very own Arabic Qanun and her husband told me that he was able to get me my very own authentic Iranian kamancheh he told me that it was waiting for me at home and when we got home from the hospital he would teach me how to play it just like he does and while I was recovering when I was able to sit up a little bit my caregiver taught me how to play the Qanun. Since I have CF I was in the hospital for 4 weeks due to some infections that I caught so the last week of my stay I was able to play one of our traditional Arabic songs for the nurses

[@TelkaP]

Thank you for sharing 🖤 its so lovely that you have such a nice connection with your carer and her partner!

[@Albylion]

This video helps. I'm getting a feeding tube next month to help diagnose a mystery allergy. I didn't know what to expect, but this helps.

[@sophiatucker04]

Thank you so much for sharing this. I’m about to to have to go to inpatient for my Anorexia and ARFID and I’m gonna have to get tubed and I’ve been terrified. This gave me some relief so thank you.

[@oliverlikescats4736]

Just in case you still have hypoglycemia after you start feeds, you could try glucose gel. It can be absorbed through the mucosal lining in your mouth, so you don't have to worry about slow absorption due to gp. Some brands of gel are kinda gross, but there are good ones out there (of course I can't remember the names)

[@Lucas_Terry]

22 years old have had an a NJ tube to many times to count you seem to be doing alot better than I was when I first had mine I still can't get passed the feeling when it drops down the back of your nose 😂

[@ChronicallyUnique]

Is it weird that I like watching your videos while I'm in the hospital? Lol your awesome!

[@Peaches14580]

Your such a warrior and such a trooper ❤

[@rileylongoria7323]

Hey! I was diagnosed with Type One Diabetes (I’m not 100% that’s why you had a pump but you talked abt bg levels so i figure) but is been a hard couple of months and I definitely don’t cope as well as you do, you’re a real inspiration to me and have really helped me through this period in my life!!!! Stay Strong, love ya!

[@ailingowl3674]

Thank you so, so much for making and sharing this. Have hEDS, intermittent eating issues, and get sooo many blood sugar crashes. But there's so little info that I've found so far, especially about when it was finally decided to go into using a tube of any sort.

[@愛-t9w]

Ailing Owl Hi! I know this is an old comment but I was diagnosed with GP and I have hEDS as well. Eating even a banana has gotten really painful but I don’t know how to propose a tube to my doctor, if at all. Would you mind sharing part of your journey and process to getting a tube? Thank you. :-)

[@dutyofcall7659]

@@愛-t9w Hey let yourself check for Dunbar-Syndrome which costs GP in the most EDS Cases. its a bloodvessel Compression because of loose tissue.

[@littleman4810]

Your so beautiful I love your attitude about life I hope everything is ok for you I go to children’s in Philly a lot and I lived there for 3 years because I was born with a lot of things that was not normal for me I’m 16 now a life is good I just got my feeding tube out of my stomach yesterday and it was weird. I love your vids and I hope all is well have a great day. :)

[@audreybrooks4063]

I don’t know how she dose this but she is great 😍😍😍

[@kimberlywitucky9493]

Thank you so much 😊 for explaining about the feeding tube and being so positive.

[@jessicadanielle0484]

you’re such a trooper. i definetly wont whine about getting shots now.

[@iczxedd4116]

Getting a needle is like getting shot

[@baileyleanne5914]

Good luck with your feeds! I have been with a NJ for two years now so know I few tips and tricks if you wanna talk I'd love to :) and I go to that hospital too, I have to travel about 5 hours but it's worth it!!!

[@LifewithStripes]

Do you have any tips for unclogging an NJ??? Mine is really stuck and I've tried hot water, coke and lots and lots of tries but i end up with it sprayed everywhere :)

[@chronicallyhorror]

Bailey i dunno if u will see this after all this time but i would like to talk to you about the nj tube im in hospital right now an losing weight like crazy n cant drink any liquid an can only tolerate a few sips of the nutrition drinks xx

[@TiffaniNtanos]

I have GP too and I might need a tube in the future. Sending you positive & healing vibes! Take care beautiful!!

[@glow_with_cindy]

You need to do a Star Wars marathon! I hope you are doing better. I know there is no cure. I have EDS, MCAS, and a bunch of other stuff, so I understand some of what you are experiencing.

[@mariamutz2452]

Hope you feel better

[@darrenclark2945]

You are an inspiration to us all. I have Vascular Eds, diabetes type one and a ileostomy with arthritis, and find it all a challenge, but after watching you go through more than I do, keep it going, you are strong and help us all.

[@alyssataylor2004]

i got admitted to a children hospital so i had to get one today:( mine hurt so bad it’s so uncomfortable but i ended up throwing up and it came out with it 💀

[@愛-t9w]

alyssa taylor dude that sucks. why do u have ur tube? i may be getting one sometime in the future and i don’t rlly get to talk to ppl with them :/

[@katrickshot3614]

Same

[@LINKINservicedog]

Oh my gosh one of my dogs looks exactly like yours. She wears a soft jacket in the winter and is so so adorable. I love your positivity a lot. Stay strong.

[@chronicallyonlineroza]

You don’t know how much I love greys anatomy 💕💕I hope you get well soon

[@Mimi22241]

I was just wondering why you didn't get a Gastric tube/Jejunal tube instead of the NJ, I'd think you'd have more freedom moving around and possibly less discomfort with G-tube/J-tube? Love your positive personality BTW.

[@LifewithStripes]

We are trying an NJ tube first to make sure that it works and then we will be placing a surgical tube in my abdomen. We wanted to be sure this is the best option before we do the more invasive option, especially since i don't heal well from surgery.

[@LINKINservicedog]

Life with Stripes I switched to a j tube and then a g-j button and it's so so worth it. I promise.

[@ioletmcfarland3017]

It's the same problem but bigger tubing and that hurts more than you think

[@lannercooper5538]

OMG SO FLUFFY!!!! children's hospital Boston?

[@nicoledriffill]

My daughter who is 21 gets her nj tube tomorrow she has heds and gastroparesis. Your video has help ease her anxiety over the procedure

[@dutyofcall7659]

Let herself tested for Dunbar-Syndrome, that costs GP in the most EDS Cases.

[@morganclarke2970]

I really love her!!

[@ckk797]

You are amazing!!

[@yzziizzy1238]

I love how your so brave and positive it’s so inspiring I don’t know how u do it

[@ronaldrobles5757]

Since I was born premature I had a NJ tube installed and eventually I had to go from NJ tube to PEG tube do to severe Autism and also the feeding issues I had when I was younger.

[@rebeccarampa6245]

Thank you. My son is 15 and getting a feeding tube right after Christmas. I have more and more questions as time goes, so thank you so much for sharing.

[@myriamaburto157]

I am going to get a feeding tude now a am going to make my channel next week thank you you inspired me

[@samanthajester3312]

I think Aspen from the Dale tribe was there too during that star wars thing

[@SamirCCat]

It hurt to got the tube set once? When I was anorexic I got one set 3 times a day for several months. These periods happened a lot during my 5 year illness. I used to count all the times I got one set, but when I was up in 300 I stopped (no joke). I didn't mind it, it was better than eating. Talking with it was weird, and I got nose bleeds. But all nasal cavities are different.

[@anonymousbeing2645]

This isn’t meant to be pervy but, how do you change your shirt with the tubes? U don’t have to answer this question. Just curious! 😊

[@chronicallyhorror]

Hey i just read your quesquestion an seen it was ages ago an no answer so thought i would answer u.....so i have a port a cath in my chest an so when im hooked up to IV infusions i have to wait till im not linked up then i just get a shower an change my clothes then i get re attached to my tubes once im done....you can always pause the iv or feeds if you spill anything on your tee an need to get changed quickly so theres always that option too

[@saylahjane]

Chronically Horror can you feel the feeding tube inside you? Sorry if I offend in anyway xx

[@ioletmcfarland3017]

You have pull over shirts so you won't pull the tubing out

[@ioletmcfarland3017]

I had a port _a_ cath and a pic line and a Hickman i had all 3 of them different times you cannot get all of those at the same time cuz you can get infections in your arteries and to the heart muscle

[@ioletmcfarland3017]

@@saylahjane yes you can

[@sparkler18466]

The blanket behind you, is awesome. May I ask where you got it?? Hope the tube helps you feel better!

[@likeeddiebauer]

We are going through everything you've gone through. My fiancé had the POP procedure AT Southpoint Cleveland clinic by allemang and Dr. M cline. Her sugars are bottoming out in the 40's she has gastropyresis as well and she is having nothing but issues with her nj tube. It's clogged as we speak tried everything but meat tenderizor

[@StephenMatrese]

New sub from Pennsylvania Try hooking the tube behind your ear, it's usually more comfortable Also, occlusive dressings without gauze are much more comfortable

[@somethingsalazar2613]

theres a chance that i’ll be getting a feeding tube when im older (my medical condition means that as i grow, my stomach will be weird its kinda complicated but ive had problems where when i have a growth spurt i throw up all my food) so ive had them in short term but never long term so im hella nervous.

[@yukirose9925]

I had to have a toob in my right tear duct. It hurt and I had blood coming out of my eye. It was weird.

[@elizabethdanica7614]

Your an inspiration. You go girl!!

[@simplyleah4359]

just think it is incredibly easy to take out and clean

[@freyabowles6252]

I love your videos they’re so inspirational! I’m also a Grey’s fan 😂❤️

[@Aliciaaa09]

I have the same disease!! Prayers

[@KerryRetkoceri]

maybe you could do a video on how you set up your feeds and make it so you can go out with them etc. just a suggestion, stay strong x💕

[@LifewithStripes]

thanks for the suggestion! I will make that video soon :)

[@TaylorBogdanoff-e9s]

​@@LifewithStripesget better soon

[@TaylorBogdanoff-e9s]

Do you have face Time ❤

[@savannahm5529]

gillette lifetime (on phalen) has an adult & kids floor (kids upstairs). you'd love it. same... if not BETTER care/responsiveness.

[@sabrinacrew516]

My friend had a feeding tube for an eating disorder and she ripped it out on purpose and tried to run away from the hospital

[@strugglingcollegestudent]

That happens a lot I was anorexic and trust me they won't get far I'm sorry to hear that she's struggling I hope she recovers soon

[@mouthbreather3590]

I have Eds and last year I had a feeding tube also I will keep you in my prayers because it’s so so so hard and painful but I have the hyper mobility type of eds and last year I had gastro perisis and I still have bad gastric problems

[@irisydavidmendezguerra7731]

Jesus Loves you, he wishes to heal you and restore you back to health. We might not understand all things but Jesus said in his word "Hearing this, Jesus said to Jairus, "Don't be afraid; just believe, and she will be healed." When we believe in Jesus, his Life fills us, Seek Jesus with all your heart. He can heal you. May God Bless you

[@kelseywhaley8721]

What Children's Hospital do you use? I also have EDS, Gastroparesis, and POTS and have been to two different ones. One 45 minutes from my house and one 5 hours away.

[@abbyshoop22]

DanceFever 625 its the children’s hospital in Minneapolis I believe!

[@PrincessG3387]

Love video

[@clairerobbins694]

Your puppy is adorable 🥰 I have a chiweenie ( chihuahua dauchschaund mix) and she is an adult but she is just ten pounds and she acts like such a baby 💕)

[@jeanettelavoieart7702]

I remeber the antibiotic wipes when i was in the hospital and i always wanted them to be warm so they would put them in the blanket heater

[@alexamurphy948]

What camera do you use and what software do you use to edit? I want to start my own channel, but want to know what I should use.

[@galaxycat5940]

I get tubed alot... I complain soooo much and try and pull it out after watching you im gonna do my best to not complain thank you 😁

[@madyjoyce8517]

I know this is so long ago and I probably wont get a response but I have a few questions. Do you still eat or drink normal foods with the tube? What happens when you get a cold like you have to blow your nose?

[@愛-t9w]

Mady Joyce Blowing your nose is fine, albeit kinda nasty feeling. With gastroparesis, you can’t really eat anything. Depends on how paralyzed your stomach is, but most people with GP don’t eat. You’ll just vomit and risk dislodging your tube. You can drink :)

[@aldckids9627]

Ugh feeding tubes are the worst! Feel better soon!

[@davidfinney2052]

Good afternoon. I do hope that you are on the mend now?

[@simplyleah4359]

I have had a feeding tube the same kind since I was 2

[@MackRoss-z7x]

I remember having a feeding tube during birth and I couldn’t eat anything and constantly vomiting from eating anything and I had to be fead through a tube now I’m 18 and I don’t have a feeding tube anymore.

[@KRYSAXXPOSED]

I also have gastro paresis just diagnosed having surgery Wed nervous but when I had my many hospital stays I ended up with a bunch monkeys

[@030397mcp]

I’m getting a PEG tube placed this coming Wednesday on the 28th! Eeep.. I’m scared..

[@bethangibby4857]

I have just had my first tube change had it changed 2 days ago my nose really runny sneezy NG

[@miracletaylor596]

I have gi problems and I can't eat anything with out throwing up all day and all night for 2 years

[@gracealexandra4506]

I've had one for 7 months now had to have it replaced every week ugh

[@sophiekostal2139]

What goes through the feeding tube? Sorry if I am asking a lot of questions. You are a great inspiration.

[@LifewithStripes]

No worries, I'm always happy to answer questions! While i was in the hospital it was Nourish, and then i was on Liquid hope which is the adult version of Nourish. But they clogged my tube too much and they weren't compatible with my pump so today i started Kate Farms. So far its working great and is my favorite!

[@jasminedoyle1724]

Sorry if this is a stupid question but do you still need to eat normal food as well?

[@immortalvelociraptor7810]

Jasmine Doyle you don’t have to but sometimes you can, depends on diagnosis and how the patient feels

[@izzyb3728]

Just wondering when you got your tube in, were you told to drink or did they just put it in with out a drink ?💗

[@sabasatianyou]

What's it like getting a feeding tube in your stomach I might be getting a permanent one myself because of swallowing problems.

[@SuperMaxibaby]

horrid things ,ive just had rig directly to stomach fitted .very painful proceedure but feeding is so much easier ,no ph tests before hand either ,good luck

[@TaylorBogdanoff-e9s]

Are you feeling better when you get the feed tube

[@The_Forseti]

Clinical dietitian here. I just want to clarify that you were at a goal rate of 60ml/hr in a post pyloric nasojejunal feeding tube? Did you have any GI distress with that?

[@jadamoreland6395]

I have allergies and I don't get enough nutrients and my mom said I could get a feeding tube. Is it really necessary?

[@dorate100]

u got this girl i know ur pain i have had to get 2 of them in my life time and have another one now at agw 19

[@itssmalls1751]

how did you stay happy...

[@joannas6746]

What hospital was this? Which children hospital?

[@tierracaccitolo]

Gasteroparenteisis sucks, I was just diagnosed

[@arielyoung3818]

try a tens unit for stomach pain

[@andyg2456]

So glad you shared this! There’s a possibility of me getting a tube because of a really bad flare and I’m sooooooooooooo nervous. I was wondering, does insurance cover the cost of a tube and feeds?

[@camrendiaz3448]

I have a feeding tube and when my mom cooks food I cry because I can’t eat I only can eat the milk I wish I had someone’s stomach without a feeding tube so I can eat what ever I want to eat

[@makariegray7640]

I have a feeding tube the doctor said the order of taking my it out is gaining weight but the problem is I eat so much I just don't gain no weight I cry every times when I don't get it out but also had my when I was 3 months and I'm 12 Now but I weigh 53 pounds but I don't weigh 60 but the weird part is that I keep gain weight an I had too go through the same stage as u so when your doctor say it time 2 take it of your nose they going to have 2 put in your stomach but I hope u get better cause I'm not

[@joannas6746]

You seem very healthy what was the problem for the ng tube? N u r using kangaroo same as my son as gtube. The pump is ok

[@my_journey_as_z]

with gastroparesis ng tubes can still cause vomiting nausea because it still goes into the stomach whereas the NJ tubes bypass the stomach and go directly in the the small intestine

[@lilybennett5919]

I had an ng tube and my nose was sour and I had a scratchy throat but after the next day I was a lot better

[@ashleyjackson8595]

I need to have my own tube feeding when my parents died in the future.

[@annakatejohnson8353]

what hospital is this at? just did a stint at brenners children’s and this looks just like my room in winston salem

[@kayelabenseman524]

your puppy is soo cute is she a miniture chihuahua??? :)

[@jackiehopkins5118]

How long for you to keep n.j tube in?

[@heatherwilson9610]

Let me know how it goes I get my gtube feeding tube surgery on Tuesday so I'm super nervous scared to death really but hoping this will help better life

[@heatherwilson9610]

Much love sweetheart ❤

[@mikeyarnone899]

I love this video. I have a ND tube which goes into your duodenum in my intestine. I'm 13 and I have to have it everyday and it is great I am gaining weight. I have sma syndrome and that means I dont get my nutrients.

[@irisydavidmendezguerra7731]

Jesus can heal you, he has the power to take away completely anything that is making you sick. He has the love to restore and nurse you back to health. Seek Christ will all your heart, and cry out to him for he wants to be a part of your life. You are loved, Jesus wishes to set you free from bondage. God bless you

[@STYLESBYLIFEBEAUTYNMORE]

How does this work with gag reflux

[@愛-t9w]

LIFEBEAUTYNMORE Usually when they’re placed you can be put under anesthetic. :)

[@lizsun261]

back here 2 years later after my doc mentioned a tube :/ im so terrified of getting one (which means i have to learn everything about it so im -hopefully- not as scared lol)

[@Ninadabarbiee]

How is it? My doc said if I don’t start eating a lot more (which is hard) that they’re gonna put me on a tube

[@84953]

There's another advantage to being sick around now besides the improvement in technology. A parent can stay in the hospital overnight with you. When I had my surgeries in the 60's, there was no way that parents could stay with the kids. I'm still haunted from time to time with the memories of the kids that were younger than me but able to understand that mom or dad wasn't there, but couldn't understand why. So there was often this constant crying from the kids that was not like that of a child in pain or scared, it was that of a child who wanted their mommy or daddy and couldn't understand why they weren't coming back.

[@NicoleSams614]

Did you have to be NPO for the placement?

[@LifewithStripes]

Danni Sams yes. For an NJ you typically are NPO but I don't think you have to be for an NG

[@minarii1]

I’m 13 and have a eating disorder, they said if I don’t start forcing myself to eat everytime I might get a feeding tube! I hope I don’t get it I’m shaking I’m so scared! 😔

[@galaxycat5940]

Im also 13 with an ed i get tubed alot... If you end up geting tubed dont pull it out i did and they threatened a permanent one in my stomach Best way to cope in my opinion is count down from 5000 and don't ask how many calories you are getting. TRY relax watch netflix or something it will be over before you know it I hope this helps xx

[@strugglingcollegestudent]

@@galaxycat5940 oh sweetie... I'm so sorry. I hope you are in recovery the feeding tube is no fun

[@galaxycat5940]

@@strugglingcollegestudent thanks im going alot better now than i was

[@coleminge9013]

Is it uncomfortabl

[@averihartsfield261]

when you first found out that you had gastroparesis did you get the tube right away? im suuuuper scared because i have to go to a GI doc because i have every symptom so im scared that i will have to get a feeding tube right away if i have it

[@clarytaylor8582]

Averi Hartsfield i’m not mickie, but i can guarantee that they don’t go straight to a tube for GP. there’s meds and other treatment they try beforehand. they generally only go to tubes as a last resort.

[@janedoee2278]

I’m in the hospital and I’m thinking about doing it for dinner.

[@lannercooper5538]

When I would have my sodium through my iv it would go off every 2 seconds cuz I would accidently kind the iv cord every 2 min especially when I would be sleeping. I twist and turn a lot when I sleep. It got a moved around so much air was going into the iv, into my arm. I'm like SH!T that's bad. The iv machine would go off all the time.

[@lannercooper5538]

LOL

[@skylincoston9456]

Get better your in good hands💗❤💚😘

[@free2bkittenforever]

Oh hey, I also have gastroparesis!