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
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 💀
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 😂
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)
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!
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.
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.
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.
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. :-)
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.
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. :)
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.
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.
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.
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.
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
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
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
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
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.
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
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.
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.
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?
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 :)
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 💕)
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
I wish my doctors were concerned about my hypoglycemia. I don’t have any other conditions, but if I don’t eat every 2 hours I drop into the 40-50’s. Al the dice I’ve seen only seem concerned about diabetes which I obviously don’t have
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
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)
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.
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
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
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.
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
No. When my illnesses started to get really bad I was in 8th grade. I made it 30 days into the year before I became homeschooled. I am about to start 11th grade now.
Emma i been getting threatened at php that if i dont start completing meals i will get readmitted inpatient again but this time with a tube and im so fucking scared but eating is so hard 😩
I am happy that you never lose your smile at anytime. I want to you to get holy pastor to prayer for you to recover from your illness. So that you don't have to youtube anymore. And get well forever.
My nose is so severely broken that my nerves are completely damaged on my right side. my other side is a really bad deviated septum. My nerves work completely fine on that side
@@kalexis6484 hi! so i’ve had the feeding tube in for 3 weeks now, getting it in was actually very painful in my opinion, going past the nose was a feeling i’d never want to experience and going down your throat just made you want to puke, sleeping i’d find difficult for the first few nights but then i got more comfortable :)
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
unfortunately because of my age and my Ehlers Danlos syndrome which causes extremely poor wound healing, also combined with the success rate of the pace makers, my doctors don't think I'm a good candidate for surgery right now and I agree.
When I got my ng tube they put it in wrong the first time they put it in wrong and I started having an axanity attack so they had to put in a second room😂😂
I realized i forgot to put my picture at the end but then i took it down to fix it and realized i edited it on my phone rather than macbook and so i couldn't fix it so i just reposted it :)
Life with Stripes - advice- if I was you I would put it in your description so you don't keep answering and getting people to ask. Btw I love U so much!!!
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!
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
This comment is 2 years old but im praying for you❤
Been there done that
@@ioletmcfarland3017 k
I have one to I hope you feel better
I don’t know how she dose this but she is great 😍😍😍
You are a great teacher! Thank you for the information you provided to us. God bless you!
you’re such a trooper. i definetly wont whine about getting shots now.
Getting a needle is like getting shot
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 💀
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 :/
Same
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 😂
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)
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!
Your such a warrior and such a trooper ❤
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.
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.
chronically Jaquie and Christina doherty do as well!
Also The Raw Life
Drew Harris Janice (the raw life) doesn’t have EDS or gastroparesis but she does have POTS! And narcolepsy.
I’m here from Amy! 💓
Love
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.
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. :-)
@@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.
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.
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. :)
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.
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.
Life with Stripes I switched to a j tube and then a g-j button and it's so so worth it. I promise.
It's the same problem but bigger tubing and that hurts more than you think
I have GP too and I might need a tube in the future. Sending you positive & healing vibes! Take care beautiful!!
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
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
Thank you so much 😊 for explaining about the feeding tube and being so positive.
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.
I really love her!!
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
Let herself tested for Dunbar-Syndrome, that costs GP in the most EDS Cases.
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💕
thanks for the suggestion! I will make that video soon :)
@@LifewithStripesget better soon
Do you have face Time ❤
OMG SO FLUFFY!!!! children's hospital Boston?
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.
I love how your so brave and positive it’s so inspiring I don’t know how u do it
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! 😊
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
Chronically Horror can you feel the feeding tube inside you? Sorry if I offend in anyway xx
You have pull over shirts so you won't pull the tubing out
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
@@saylahjane yes you can
I think Aspen from the Dale tribe was there too during that star wars thing
I am going to get a feeding tude now a am going to make my channel next week thank you you inspired me
Ugh feeding tubes are the worst! Feel better soon!
You are amazing!!
Your an inspiration. You go girl!!
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
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
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.
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
I have had a feeding tube the same kind since I was 2
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.
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.
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.
gillette lifetime (on phalen) has an adult & kids floor (kids upstairs). you'd love it. same... if not BETTER care/responsiveness.
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 😁
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?
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 :)
I’m in the hospital and I’m thinking about doing it for dinner.
Oh hey, I also have gastroparesis!
Im getting a feeding tube in 3 hours you helped me
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 💕)
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
What's it like getting a feeding tube in your stomach I might be getting a permanent one myself because of swallowing problems.
I’m getting a PEG tube placed this coming Wednesday on the 28th! Eeep.. I’m scared..
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
I've had one for 7 months now had to have it replaced every week ugh
Gasteroparenteisis sucks, I was just diagnosed
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
I have allergies and I don't get enough nutrients and my mom said I could get a feeding tube. Is it really necessary?
Get better soon
What hospital was this? Which children hospital?
Good afternoon. I do hope that you are on the mend now?
bears make everything way better
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
How long for you to keep n.j tube in?
I wish my doctors were concerned about my hypoglycemia. I don’t have any other conditions, but if I don’t eat every 2 hours I drop into the 40-50’s. Al the dice I’ve seen only seem concerned about diabetes which I obviously don’t have
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
I have just had my first tube change had it changed 2 days ago my nose really runny sneezy NG
Just checked into my room, no not a hotel, a hospital.
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)
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
I have gi problems and I can't eat anything with out throwing up all day and all night for 2 years
I keep getting threatened tubed if i dont eat all my meals and im so scared it really happens....
Did you have to be NPO for the placement?
Danni Sams yes. For an NJ you typically are NPO but I don't think you have to be for an NG
I have had an ng tube twice because they took it out too soon
Get better your in good hands💗❤💚😘
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.
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
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
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.
how did you stay happy...
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
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
Have you been home schooled your whole life?
No. When my illnesses started to get really bad I was in 8th grade. I made it 30 days into the year before I became homeschooled. I am about to start 11th grade now.
I had an NG when I had anorexia and honestly I thought I was dying when they put it in!!!! Not pleasant in the slightest!!!!!!
Emma i been getting threatened at php that if i dont start completing meals i will get readmitted inpatient again but this time with a tube and im so fucking scared but eating is so hard 😩
I got a Feeding Tube win I was born
I am happy that you never lose your smile at anytime. I want to you to get holy pastor to prayer for you to recover from your illness. So that you don't have to youtube anymore. And get well forever.
My nose is so severely broken that my nerves are completely damaged on my right side. my other side is a really bad deviated septum. My nerves work completely fine on that side
I have an ng tube because I have autoimmune hepatitis and I have failed to thrive
me getting a feeding tube tomorrow: 😦
How was it? You alright??
@@kalexis6484 hi! so i’ve had the feeding tube in for 3 weeks now, getting it in was actually very painful in my opinion, going past the nose was a feeling i’d never want to experience and going down your throat just made you want to puke, sleeping i’d find difficult for the first few nights but then i got more comfortable :)
I’m happy you’re okay
@@lexalora1506 thankyou! i get it removed on friday!
I a ng tube it feels so bad when they put it in
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
Much love sweetheart ❤
Did someone checked you for dunbar-Syndrome via Ultrasound, its responsible for a GP in the most EDS Cases and cureable by a Operation.
Ive had my feeding tube since i was 2.
do you also have gastroparesis??
how are you doing now btw
How old are u
Good question.
My brother has gastroparesis and wonders what's next for him
im getting this before my surgery im scared kinda
i used to have a g tube and had to get another one 4 years later
in prayers and if I spelt it wrong I am 8
They use a pace maker for gastric stomach in Mississippi
unfortunately because of my age and my Ehlers Danlos syndrome which causes extremely poor wound healing, also combined with the success rate of the pace makers, my doctors don't think I'm a good candidate for surgery right now and I agree.
Can you still eat with your feedingtube?
Jackie Hopkins yes
God bless
I live in England as they always say wet Britain
I love greys anatomy!
I’m getting one in a few days
What happens when you sneeze?
when its in right it does nothing
When I got my ng tube they put it in wrong the first time they put it in wrong and I started having an axanity attack so they had to put in a second room😂😂
Can you still eat some food if you want to?
Brenna Olewinski You can, depending on how you feel and how you tolerate it. But it’s usually very painful.
im watching this WHILE being in the hospital lmao
Why did u repost ?
I realized i forgot to put my picture at the end but then i took it down to fix it and realized i edited it on my phone rather than macbook and so i couldn't fix it so i just reposted it :)
Life with Stripes - advice- if I was you I would put it in your description so you don't keep answering and getting people to ask. Btw I love U so much!!!