As a nurse educator, who teaches families all about how the care/use of their child’s feeding tube and feeding pump, it is so cool to see you teaching that same knowledge to a wider community. You should be really proud of yourself for rocking the knowledge, helping normalize/destigmatize the tube, and helping prepare others who might find themselves needing a feeding tube!
Never heard of the condition before so thanks for that. As a nurse i value that a lot and also that you normalize it. It's super cool. Keep being awesome!
Just seeing this thumbnail made me feel sick... so many memories... I had to have three NG feeding tubes as part of my treatment for anorexia. In a way, it was life support for me - I was starving, and the tubes were necessary to keep me alive. It was absolute hell for me. I have a sensitive gag reflex (can't even swallow pills), and each tube made me miserable in different ways. The first one was the worst, as I was hysterical. Instead of calming me, the nurses held me down and forcibly inserted the tube as I scream and thrashed. They even had to take the tube out and reinsert it, since I was thrashing around too much. It was inserted into my left nostril, and I gagged and cried, but didn't vomit until a couple days later, when they put medicine through the tube. I could taste every flavor of Boost that they put through the tube, which was an odd sensation. I had that tube for eighteen days, and I eventually learned to eat with it in. They removed it rapidly, as I requested, since a long withdrawal would have been misery all over again. It felt like throwing up a straw - through my nose. The second tube was better in some ways, as I wasn't hysterical this time. It was inserted into my right nostril, and it felt just as bad as the first one did. It was downhill from there. I dry heaved for some time before vomiting. Fortunately, the tube stayed down, as it is possible to vomit the tube up-! This tube was a "punishment" for me. I was drinking enough Boost to survive, but my doctor wanted me to eat more solid food. So when I didn't finish my meals, instead of giving me Boost, I was given a feeding tube as "encouragement" to eat more. The tube bothered me, as usual. I could feel it in my nose, in my throat, and in my stomach. When I didn't eat for three days due to the discomfort the tube caused me (I was fed by the tube), the doctor took the tube out and resumed offering me Boost. The tube was horrific for me, as usual, and the fact that I was given it when I didn't need it shook me to my core. I realized that I couldn't trust doctors, and I still don't. My third and final tube was the best of all, and yet the worst. This time, I was in a facility instead of in a hospital. I was taken into an office and closed in with multiple doctors and nurses. As soon as I saw the tube laid out on the table, I began to panic. I begged them to not put it in, and they told me they had to - I was losing too much weight. So I begged them to give me some time to breathe, and to my surprise, they actually did. They let me calm myself down, and didn't insert the tube until I said I was ready. This was a huge improvement from the past two tube insertions. The tube was inserted into my left nostril again, and it was miserable. The gagging, the feeling of a straw stuck in your throat, always stuck... this time, I had to walk back to my room, which was hard when I could feel the tube in my stomach. They still expected me to show up to meals, and when I proved too miserable, they decided to give me my boost through a syringe in the tube. This is one way of being tube-fed, and it only really works for small amounts of liquid, because of how odd it feels to have the liquid rapidly sloshing into your stomach. The nurse, however, attempted to administer a whole meals' worth of Boost in this fashion! When I asked her to go slower, as my stomach was still rolling, she responded that she couldn't go any slower. Shortly after she left, I vomited up the whole glass of Boost. My tube even rose up out of my nose slightly, which caused me to panic. I didn't want a nurse to touch it, so I carefully pushed it back into place. *That* wasn't fun. The next nurse who fed me did so slowly, and I kept the food down. It was such a relief to have a nice nurse, and I'll never understand why some nurses are mean. This tube was also flushed twice daily, which was just a syringe of water shot through the tube to flush it out. I could always feel the water travelling the whole length of the tube. Sometimes the nurse would neglect to heat the water hot enough, and it would feel cold and shocking in my stomach. This tube was the worst as far as swallowing went. About every fifth swallow would be a "bad swallow", where I could feel the tube rising up, and I would begin to choke and panic. As a result, I stopped swallowing. I was banished to a seclusion room due to my constant drooling, since I was bothering the other patients. I wasn't allowed to talk to other people or to do anything in the room. I eventually received my Bible to read, but before that, I couldn't sleep, read, or do anything. I just got to sit on a bed in an eight-by-eight room all day long, before going back to my bedroom to sleep, and returning to the seclusion room in the morning. This went on for at least two weeks, until I became used to the tube, and could comfortably swallow again. I did eat some with this tube, but I would only eat ice cream. After about a month, this tube became clogged, and I had to have it removed. Instead of receiving a new one, my doctors worked with me to create a meal plan I could follow. I haven't had a tube since. For me, feeding tubes were the worst kind of torture. They made me gag, I could feel them all the way through my body, I couldn't lie down without gagging, I could barely eat or drink on my own, and I could hardly even swallow. But ya know what? I'm alive right now because of them!
Holy cow this sounds like torturous hell!!! I’m so sorry you had terrible doctors and nurses. They clearly don’t know how to deal with people. I’m also sorry you’ve been struggling with anorexia :( But I pray you’re healthier and feeling better now and never have to get a feeding tube ever again!! ❤️
Dont forget to continue reading your bible , it may not seem like it but Jesus Christ loves you and he was there, looking, he was there i promise you. The bible says that Whomever calleth upon him shall be saved and delivered. What you went through is horrible, I cant imagine...But Jesus's Love can restore you and nurse you to complete health. Only he has the power to heal what science can't. He is Hope. Seek him.
Oh no, I was about to thank her for such an amazing video. My mom might need a feeding tube and I was sooo worried. May you rest in peace you sweet angel.
Oh my word, you incredible girlie, I know you must get so many of these comments so mine might not mean anything (Not saying you're the kind of person who doesn't appriciate things!) just the amount you must get! You are so unbelievably inspiring, you should be the person people should inspire to be like. I hope you stay as wonderful as you already are and you'll constantly feel life be a little bit easier everyday :) Love you lot's and lot's and lot's!
You are so cool about such a bloody hassle, looking at it I was like omg it’s so complicated, then you’ve got to have a tube which I’m sure people stare at, then you deal with the actual illness. Wow. Some people are just amazing. You’re one of them.
When you began talking I was getting worried, because my older sister has the same Ehlers Danlos type as you do, and you know the chance of her getting or having this, but you make it sound so easy, that the worry went away 😊 you deserve more subscribers
I'm glad I could help good luck! If you're interested in more info about Nj's check out my vlog channel i have vlogs of me getting mine placed and my experience with it :)
Lenthe Schutten how are you coping with your feeding tube, and if you don't mind me asking what is the reason why you had to get a feeding tube?! I understand if that's too personal..
Love that you're doing these videos! You're a young, stylish girl of whom younger people would look up to. Good on you for raising awareness and making this part of everyones normal. Well done! x
You are amazing.. I suffer from severe emetophobia so couldn't watch all vids (thanks for posting warnings) can't begin to understand how it feels but holy cow you're doing an amazing job on informing people
KimOfMakeup it's so rare to find someone else with this phobia! I'm a Nutritionist and have had to fit these tubes onto patients but had to stop because it often makes people gag.
Emily H yeah, I'd like to call it the hidden phobia because it's really common but people don't talk about it. I think the fear of people laughing or just saying "who likes to v*" stops most
KimOfMakeup it's a phobia which is seriously going to suppress my lifestyle and choices. I wanted to be a nurse but I can't. I actually despise children and cannot contemplate having them, and I am borderline terrified of pregnant women.. ridiculous.
Emily H i know the feeling, I couldn't go to school or see people for a long time because I always thought that either me or them were gonna be sick. There is treatment but prepare yourself for a long process.
KimOfMakeup I’m really glad to see there’s others with Emetophobia. I thought I was the only one. It affects so many of my life choices and I’ve tried going to a psychologist for it but it doesn’t seem to work :( That’s why I can’t imagine what she goes through; Especially with a tube in her throat.
I have Ehlers-Danlos and POTS too! No one else knows anything about these conditions! I'm so glad that you're making people more aware about people like us!
I love that there are so many people on TH-cam educating about their conditions! You can find nearly anything here and it really helps "normal" people apprehending their life, leading to a more respectful environment. Because often you don't mean to be rude, but when you don't know something, it's easy to put your foot into it. And there are many things, though logical, that never occurred to me. Like someone having a non-working stomach without being near-dead anyway. I always connected feeding tubes with NICU or ICU or very old people. Of course I know, that every part of your body might give up separately and there's millions of genetic syndromes and variations, concerning people in every age. It's just not easy to comprehend, when meeting someone somewhere and you don't want to ask, but you want to know about it and you unintentionally stare. And I wouldn't know where to start researching, because I don't know any of the terms or possibilities. So thank you for helping to normalize medical conditions and explaining them in a way people without medical knowledge understand. And answering the questions no one should ask random people in the street, no matter how curious you are :D
- Does your mouth/throat ever feel dry? (If you can't drink water) - Do you ever feel hungry? (Since the stomach doesn't get full the normal way) - What would happen if the tubes got stuck in something, like it happens to headphones? Can it be stuck on something, and if it can, could it go out of its place or hurt any organs? - How do you some basic stuff like sleeping or changing your clothes?
i dont want to sound like one of those people who are just saying this to "relate" to you, but when i was younger i also had a feeding tube but i didnt grow up with it. You make me smile everyday with you courage and how you are so positive on life! :)
I know this video is about 3 years old, but I have EDS, and suspected Gastroparesis. I have an NJ tube placed about 3 weeks ago due to not being able to really eat or drink. I went back to your tube videos, before my placement and even now, and it has helped a lot!
Thank you so, so much for posting this. I’m having an nj placed in just over 2 weeks and you’ve reassured me and answered a lot of my questions. I have EDS type 3 and gastroparesis too.
I have EDS and so does my Mum. We all have type 3. My little sister has POTS. Sometimes it makes life a bit difficult but it's honestly refreshing knowing we aren't the only ones out there and that people like yourself with such a fan base can still do your dreams. It's so inspirational.
Thank you for your video. I have EDS, POTS, and gastro too . I’ve been so so sick with vomiting and I’ve been scared to accept any other medical intervention. You made things less scary.
You are a strong young woman to deal with this and generous to share your experiences. I have no doubt that your videos are very helpful to other young people in similar situations, which may not be as strong.
Thanks for making this video my wife is in the hospital and they told me today they were putting in a feeding tube she had a seizure and some complications required her to be sedated. I was worried about the feeding tube she has always been terrified of hospitals and any procedures. I was very concerned that a feeding tube would make her very uncomfortable, but after watching your video put me at ease .
I've never heard of this disease. I work at a gastrointestinal office. Thank you for educating people. I think that is incredibly brave and amazing . Thank you
I have hypermobility in a lot of my joints (my fingers bend back exactly as far as yours did) but I don't have ehlers danlos, this video taught me a lot about ehlers danlos! This is a really good informative video, you'd make a brilliant teacher
I’ve just found this video and it is so amazing. You are such a strong person and like you, I have Eds type 3 - hypermobility so it was wonderful to find someone who knows what I am going through
This is so touching how you are so confident! I have a GJ tube. My tube is on my stomach, and I am so glad it’s not on my face anymore! I used to have it on my face and it was so uncomfortable because I had a bridal so I could go swimming! I love your confidence! ❤️
I remember the first time I got my tube, I was so terrified. You'd have thought I was about to be tortured I was shaking so much, but it was over in two seconds and I was like 'is that it?'
I also have a couple of chronic conditions including a chronic mental health condition and how you seem to manage yours is really inspiring. For me its the restrictions and having to do things differently that bothers me. I miss just thinking about going to the shop and just going. These days its like going on holiday with having to check everything is ready and the stress getting out the door. Even washing my dishes is a pain these days. I really enjoyed the video and have subscribed :)
I WAS NOT EXPECTING EHLYERS DOWNLOS SYNDROM. I recently figured out I have it my arms and hips and knees subluxate. I have hyper-mobility as well. Sorry I am not good at spelling I just got told about having this by the doctor and I am starting all my tests and physical therapy. It's so odd now that I know what it is I'm running into it everywhere
Thedarkphoenix I know what you mean. I have EDS , POTS, and gastro. I’m 40 and was diagnosed 8 years ago and hear about it everywhere now. I’m so thankful for TH-cam too
once you are aware of something you probably start seeing it everywhere even if you never noticed it before. I didn't think much about glasses before i got my first pair, it's something veery common
My sister has EDS type 3 and she is suffering rn Bc she may have gastroparesis but doctors r still figuring out the diagnosis. She recently was scoped and took some biopsies and we will get the results this week hopefully to find out if she has it.
Wow, it's really cool to see you using Abbott products- I live less than an hour away from the actual production facility, and it's kind of cool to see the products that so many people in my area produce actually making life easier for someone!
I've never seen anyone else with hypermobility.. Cause I have it to and it's difficult for me cause you are weak in your joints.. Thank you for sharing your story and telling what you have 🌸
You're so amazing. This video makes me view things differently and I really appreciate this. Knowing can help me understand a little bit, and I appreciate that. You're really amazing, strong and brave. You're so pretty btw!!! AH 😍 thank you for this video.
I'm not sure why TH-cam put this video in my recommended, but I found this entire thing fascinating and now I'm off to check out the rest of your videos.
One reason why I never went to an eating disorder facility is because I’m deathly afraid of feeding tubes. When I was little I would get severe bloody noses (at least once a day) and had to get it cauterized more than once. It was the most terrible thing ever, and now I can’t let anything go in my nose
I have a feeding tube to but mines permanently in my stomach. I wish I had mine in my nose. I’m kind of insecure about it but you’re super pretty and I hope you won’t to have it long and you can get healthy again!! 💞💕
I'm so glad I found you! I also have EDS but I'm lucky as I only get IBS with my insides and it doesn't really effect any of my other organs (yet!). I'm also a Nutritionist and have had to fit a fair few feeding tubes in my time but I've never heard of people having them with EDS!
I do have a question. What do you do when your family eats dinner? Do you eat any actual food? Do you just chew it and spit it out for satisfaction? Very curious.
I work for the courier company that handles/ delivers all the abbotts stuff, osmalite, enfit giving sets, freego pumps.....I wonder if I've ever arranged any of your stuff before lol.....great stuff glad it's working for you 😎 xx
Very interesting! I'm a type 1 diabetic, and have been since I was 3. I've been dealing with on and off gastroparesis; of which the sickness was kind of worrying me. My vagus nerve hasn't lost total contact, but it's good to see and hear what I may need to know down the road!
I have EDS but thankfully my stomach seems ok, I'm sensitive to certain things but ok thankfully. My EDS isn't too extreme but feel like my doctors do not take me seriously at all and recently I have felt my heart has felt weaker but doctors haven't listened, I will have to go back and mention my hypermobility :/ thanks for bringing awareness :)
Ik this is super old but if you get sick and have a cough does it ever come up with the cough? I have lung problems and bad coughing is a regular for me and I got a feeding tube placed once to help with my weight but because of my coughing I couldnt keep in down
I was in a coma for 3 months when I woke up I had a trach and feeding tube. I was so sick from the feeding tube and crazy thing I could taste the feed and when they put meds in they tried different feeds but I was still sick think it was from it moving in my stomach cause when they turned it off for a day I was not that sick but they had to tune it back on . Maybe it's cause I get bad motion sickness. I still have my trach getting it out this julyi hope they removed the feeding tube after I had a swallowing test done. I really enjoy your videos I've learned a lot ty
Just for the record, Amy's medical conditions was NOT from Anorexia! She had physical disorder called gasteroperisis. She also had EDS and these were all tied into why she passed on.
I too have some questions, if that's alright. And thank you for such an informative video! So I was wondering, do you still need to wash your teeth as often now you have the tube? Do you have to move the tape on your cheek around or does your skin seem to cope ok with it there at all times? Do patients have any say in the choice of nostril side? lol Oh also does it affect singing at all? Is it possible for your condition to improve again, or at least the digestion element of your condition, or is the tube here to stay for the forseeable future?Thank you again for sharing this part of your life with us!
Joanna Joanna well the tube is semi permanent because gastroparesis is a chronic condition with no cure but I hope that as I get older and my body changes that I will get better 💖🙏🏼 Yes we usually do get a say which nostril for me I preferred my left just because it seems to go in smoother that side and then my nose ring is still on show 😂 Nope it doesn't effect anything to do with the voice especially not singing I'm still completely tone deaf when it comes to that 🤦🏽♀️😆 as far as brushing your teeth goes I do it about 3 times a day and after everytime I'm sick because the stomach acid can rot your teeth if you have chronic vomiting but besides the vomiting I just stick to 2/3 times a day! And yes the tape has to be changed regularly otherwise the skin underneath gets sore and irritated 😬 I usually have to apply special products and skin care to that side of my face and I switch between a few different brands of tape so my skin doesn't react too badly!🙄 I think that's everything aha let me know if you have any more questions 💚 and if your interested I'm posting another gastroparesis/ feeding tube video this Friday , so look out for that 💕💓
*I’ve actually had one before I went to a G tube* .In my opinion, it’s not the best but it doesn’t hurt. It isn’t a good feeling having it put into your stomach though, it’s like gaging for 5-10 seconds ( depending how fast u go) but once it’s down, it’s fine. ^_^
I didn’t know any of this before! I thought it was just for people with eating disorders and stuff. I have some more questions, do you get hungry? are you hungry all the time or do you ever feel full? And have you ever eaten anything? Like a proper meal or snacks or whatever? U are really inspiring!! Hugs
I love your videos! It's so Interesting, meaningful, and educated. You will always be in our hearts and in your honor I will rewatch all your videos. To Amy's family - you are in our thoughts and love and hugs go to all of you. Amy was a WONDERFUL, SMART, FUNNY AND BEAUTIFUL women! RIP.
As one eds warrior, to another. Your amazing. Im i guess lucky as i have eds an hyper mobility syndrome and fibro. I dont have thr feed tubes but have severe issues with stomach acid. So rely on medication. Send you hugs and massive thumbs up for you videos and awareness. Xx
I've had these a couple of times. Personally, it was horrible. Putting it in was traumatic and caused me to gag and cry. Probably because of how it was done.
My question: What if you accidentally pull on it? Would it rip out? Thanks for this video! I learned so much, both about the NJ tube itself as well as the fact that this condition does not define you one bit. I really admire you.
Hi! I also have EDS, POTS and gastroparesis and I’m so happy I came across your channel! I’m having an NG tube fitted really soon and I’ve never had one before. I’m so nervous, what does it feel like once the tube is in? Does it feel like you’ve got something constantly stuck in your throat? Does it hurt your throat or do you kind of yet used to it and forget it’s there? I’m sorry to bombard you with questions, it’s just so hard to find people documenting their experiences online. Stay strong 🦓💕
As a nurse educator, who teaches families all about how the care/use of their child’s feeding tube and feeding pump, it is so cool to see you teaching that same knowledge to a wider community. You should be really proud of yourself for rocking the knowledge, helping normalize/destigmatize the tube, and helping prepare others who might find themselves needing a feeding tube!
Never heard of the condition before so thanks for that. As a nurse i value that a lot and also that you normalize it. It's super cool. Keep being awesome!
Minna Fridell thank you! 🙏🏼
Please look up pots no one knows what it is. Chronically Jaque has several chronic illnesses so great for learning terms
Shelbi Jackson I will do that 😊
I have this disorder and in still able to eta few things. But people who don't have it have really dont have a clue.
I feel you girl keep goin strong ! just got my daughter off ng not long ago after nearly 2 years.. ♡
Just seeing this thumbnail made me feel sick... so many memories...
I had to have three NG feeding tubes as part of my treatment for anorexia. In a way, it was life support for me - I was starving, and the tubes were necessary to keep me alive. It was absolute hell for me.
I have a sensitive gag reflex (can't even swallow pills), and each tube made me miserable in different ways.
The first one was the worst, as I was hysterical. Instead of calming me, the nurses held me down and forcibly inserted the tube as I scream and thrashed. They even had to take the tube out and reinsert it, since I was thrashing around too much. It was inserted into my left nostril, and I gagged and cried, but didn't vomit until a couple days later, when they put medicine through the tube. I could taste every flavor of Boost that they put through the tube, which was an odd sensation. I had that tube for eighteen days, and I eventually learned to eat with it in. They removed it rapidly, as I requested, since a long withdrawal would have been misery all over again. It felt like throwing up a straw - through my nose.
The second tube was better in some ways, as I wasn't hysterical this time. It was inserted into my right nostril, and it felt just as bad as the first one did. It was downhill from there. I dry heaved for some time before vomiting. Fortunately, the tube stayed down, as it is possible to vomit the tube up-! This tube was a "punishment" for me. I was drinking enough Boost to survive, but my doctor wanted me to eat more solid food. So when I didn't finish my meals, instead of giving me Boost, I was given a feeding tube as "encouragement" to eat more. The tube bothered me, as usual. I could feel it in my nose, in my throat, and in my stomach. When I didn't eat for three days due to the discomfort the tube caused me (I was fed by the tube), the doctor took the tube out and resumed offering me Boost. The tube was horrific for me, as usual, and the fact that I was given it when I didn't need it shook me to my core. I realized that I couldn't trust doctors, and I still don't.
My third and final tube was the best of all, and yet the worst. This time, I was in a facility instead of in a hospital. I was taken into an office and closed in with multiple doctors and nurses. As soon as I saw the tube laid out on the table, I began to panic. I begged them to not put it in, and they told me they had to - I was losing too much weight. So I begged them to give me some time to breathe, and to my surprise, they actually did. They let me calm myself down, and didn't insert the tube until I said I was ready. This was a huge improvement from the past two tube insertions. The tube was inserted into my left nostril again, and it was miserable. The gagging, the feeling of a straw stuck in your throat, always stuck... this time, I had to walk back to my room, which was hard when I could feel the tube in my stomach. They still expected me to show up to meals, and when I proved too miserable, they decided to give me my boost through a syringe in the tube. This is one way of being tube-fed, and it only really works for small amounts of liquid, because of how odd it feels to have the liquid rapidly sloshing into your stomach. The nurse, however, attempted to administer a whole meals' worth of Boost in this fashion! When I asked her to go slower, as my stomach was still rolling, she responded that she couldn't go any slower. Shortly after she left, I vomited up the whole glass of Boost. My tube even rose up out of my nose slightly, which caused me to panic. I didn't want a nurse to touch it, so I carefully pushed it back into place. *That* wasn't fun. The next nurse who fed me did so slowly, and I kept the food down. It was such a relief to have a nice nurse, and I'll never understand why some nurses are mean. This tube was also flushed twice daily, which was just a syringe of water shot through the tube to flush it out. I could always feel the water travelling the whole length of the tube. Sometimes the nurse would neglect to heat the water hot enough, and it would feel cold and shocking in my stomach. This tube was the worst as far as swallowing went. About every fifth swallow would be a "bad swallow", where I could feel the tube rising up, and I would begin to choke and panic. As a result, I stopped swallowing. I was banished to a seclusion room due to my constant drooling, since I was bothering the other patients. I wasn't allowed to talk to other people or to do anything in the room. I eventually received my Bible to read, but before that, I couldn't sleep, read, or do anything. I just got to sit on a bed in an eight-by-eight room all day long, before going back to my bedroom to sleep, and returning to the seclusion room in the morning. This went on for at least two weeks, until I became used to the tube, and could comfortably swallow again. I did eat some with this tube, but I would only eat ice cream. After about a month, this tube became clogged, and I had to have it removed. Instead of receiving a new one, my doctors worked with me to create a meal plan I could follow. I haven't had a tube since.
For me, feeding tubes were the worst kind of torture. They made me gag, I could feel them all the way through my body, I couldn't lie down without gagging, I could barely eat or drink on my own, and I could hardly even swallow. But ya know what? I'm alive right now because of them!
Holy cow this sounds like torturous hell!!! I’m so sorry you had terrible doctors and nurses. They clearly don’t know how to deal with people. I’m also sorry you’ve been struggling with anorexia :( But I pray you’re healthier and feeling better now and never have to get a feeding tube ever again!! ❤️
I had a NG tube in treatment as well. It sucks.
Maria Griffin 😭 same psych units are so bad
Dont forget to continue reading your bible , it may not seem like it but Jesus Christ loves you and he was there, looking, he was there i promise you. The bible says that Whomever calleth upon him shall be saved and delivered. What you went through is horrible, I cant imagine...But Jesus's Love can restore you and nurse you to complete health. Only he has the power to heal what science can't. He is Hope. Seek him.
I’m sorry you had to go through this. Anorexia, absolutely horrible nurses. I’m glad you’re still here with us and I thank you deeply for sharing 💚
Still can't believe your gone rest in peace amy
Me too 🥺😔
She passed away?
@@hqgirl567 yes almost 2 years ago
@@may-rosehammill8142 aww rip
Oh no, I was about to thank her for such an amazing video. My mom might need a feeding tube and I was sooo worried. May you rest in peace you sweet angel.
You blend the tape into your foundation really well
troye trash same oh my god
Its clear tape, look at the tube, there is no difference in the colour where the tape should be.
fascinating. i have no idea how i got here but thanks for sharing :)
I thought I was watching game grumps hmmm
SeychellesLover woah same
SeychellesLover bruh me too
Same
👍
You give me a whole new meaning of life
MrStukey21 I hope this is a good thing haha thank you 💖
Amy Lee Fisher yes its a vary good thing 😊
Oh my word, you incredible girlie, I know you must get so many of these comments so mine might not mean anything (Not saying you're the kind of person who doesn't appriciate things!) just the amount you must get! You are so unbelievably inspiring, you should be the person people should inspire to be like. I hope you stay as wonderful as you already are and you'll constantly feel life be a little bit easier everyday :) Love you lot's and lot's and lot's!
You are truly missed every day!! Still can't believe your gone. We know your up there looking down on us!! ❤❤
You are so cool about such a bloody hassle, looking at it I was like omg it’s so complicated, then you’ve got to have a tube which I’m sure people stare at, then you deal with the actual illness. Wow. Some people are just amazing. You’re one of them.
u just know how can a person beat his/her difficulties and rock the life... god bless you my dear....
When you began talking I was getting worried, because my older sister has the same Ehlers Danlos type as you do, and you know the chance of her getting or having this, but you make it sound so easy, that the worry went away 😊 you deserve more subscribers
you are sooooo inspiring!!! i really enjoy your videos and are not worried about what others think! thank you so much!
Probably getting an NJ tube... this video tool a lot of my fear away..
I'm glad I could help good luck! If you're interested in more info about Nj's check out my vlog channel i have vlogs of me getting mine placed and my experience with it :)
Amy Lee Fisher I will thank you ❤
Lenthe Schutten how are you coping with your feeding tube, and if you don't mind me asking what is the reason why you had to get a feeding tube?! I understand if that's too personal..
You are amazing and extremely positive. Your parents must be so proud.
Lenthe Schutten i started using NJ tubes since i was 4 i am now 13
I was recently diagnosed with Gastroparesis. Amy you are such an inspiration. Thank you for giving me hope ❤️
Love that you're doing these videos! You're a young, stylish girl of whom younger people would look up to. Good on you for raising awareness and making this part of everyones normal. Well done! x
My niece was born 2 months ago and has to have a feeding tube for life, your videos have really helped me understand more and ease my mind ❤️
You are amazing.. I suffer from severe emetophobia so couldn't watch all vids (thanks for posting warnings) can't begin to understand how it feels but holy cow you're doing an amazing job on informing people
KimOfMakeup it's so rare to find someone else with this phobia! I'm a Nutritionist and have had to fit these tubes onto patients but had to stop because it often makes people gag.
Emily H yeah, I'd like to call it the hidden phobia because it's really common but people don't talk about it. I think the fear of people laughing or just saying "who likes to v*" stops most
KimOfMakeup it's a phobia which is seriously going to suppress my lifestyle and choices. I wanted to be a nurse but I can't. I actually despise children and cannot contemplate having them, and I am borderline terrified of pregnant women.. ridiculous.
Emily H i know the feeling, I couldn't go to school or see people for a long time because I always thought that either me or them were gonna be sick. There is treatment but prepare yourself for a long process.
KimOfMakeup I’m really glad to see there’s others with Emetophobia. I thought I was the only one. It affects so many of my life choices and I’ve tried going to a psychologist for it but it doesn’t seem to work :(
That’s why I can’t imagine what she goes through; Especially with a tube in her throat.
There's another vlogger, ChronicallyJacquie, who also has EDS, POTS, and Gastroparesis and a feeding tube. Your positive attitude is awesome.
I have Ehlers-Danlos and POTS too! No one else knows anything about these conditions! I'm so glad that you're making people more aware about people like us!
I love that there are so many people on TH-cam educating about their conditions! You can find nearly anything here and it really helps "normal" people apprehending their life, leading to a more respectful environment. Because often you don't mean to be rude, but when you don't know something, it's easy to put your foot into it.
And there are many things, though logical, that never occurred to me. Like someone having a non-working stomach without being near-dead anyway. I always connected feeding tubes with NICU or ICU or very old people. Of course I know, that every part of your body might give up separately and there's millions of genetic syndromes and variations, concerning people in every age. It's just not easy to comprehend, when meeting someone somewhere and you don't want to ask, but you want to know about it and you unintentionally stare. And I wouldn't know where to start researching, because I don't know any of the terms or possibilities.
So thank you for helping to normalize medical conditions and explaining them in a way people without medical knowledge understand. And answering the questions no one should ask random people in the street, no matter how curious you are :D
- Does your mouth/throat ever feel dry? (If you can't drink water)
- Do you ever feel hungry? (Since the stomach doesn't get full the normal way)
- What would happen if the tubes got stuck in something, like it happens to headphones? Can it be stuck on something, and if it can, could it go out of its place or hurt any organs?
- How do you some basic stuff like sleeping or changing your clothes?
You are incredibly strong, please don’t ever change.
Nursing student here: thank you for sharing. It is so good to hear from the person who has the condition and apparatus.
i dont want to sound like one of those people who are just saying this to "relate" to you, but when i was younger i also had a feeding tube but i didnt grow up with it. You make me smile everyday with you courage and how you are so positive on life! :)
you’re absolutely incredible and such a trooper. i admire your resilience and perseverance so much
I know this video is about 3 years old, but I have EDS, and suspected Gastroparesis. I have an NJ tube placed about 3 weeks ago due to not being able to really eat or drink. I went back to your tube videos, before my placement and even now, and it has helped a lot!
Thank you so, so much for posting this. I’m having an nj placed in just over 2 weeks and you’ve reassured me and answered a lot of my questions. I have EDS type 3 and gastroparesis too.
I have EDS and so does my Mum. We all have type 3. My little sister has POTS. Sometimes it makes life a bit difficult but it's honestly refreshing knowing we aren't the only ones out there and that people like yourself with such a fan base can still do your dreams. It's so inspirational.
Thank you for your video. I have EDS, POTS, and gastro too . I’ve been so so sick with vomiting and I’ve been scared to accept any other medical intervention. You made things less scary.
I have a feeding tube right now due to illness and it looks exactly like yours, it’s nice to see someone else around my age, and hear their story:)
I hope medical research has a significant progression in the near future to cure conditions like these.
i don't know, maybe wearing a feeding tube could help you eat properly and stay in shape, it could be the future
I really hope so too
May you Rest In Peace, Amy Lee Fisher 💛🥺
You are a strong young woman to deal with this and generous to share your experiences.
I have no doubt that your videos are very helpful to other young people in similar situations, which may not be as strong.
Oh my gosh! I have an NJ and I also suffer from Gastro Paresis, POTS, MALS, and EDS! I am so sorry about this.
Thanks for making this video my wife is in the hospital and they told me today they were putting in a feeding tube she had a seizure and some complications required her to be sedated. I was worried about the feeding tube she has always been terrified of hospitals and any procedures. I was very concerned that a feeding tube would make her very uncomfortable, but after watching your video put me at ease .
Sheesh, even backpacks have fake pockets?! Pockets are their primary purpose!
I've never heard of this disease. I work at a gastrointestinal office. Thank you for educating people. I think that is incredibly brave and amazing . Thank you
I have hypermobility in a lot of my joints (my fingers bend back exactly as far as yours did) but I don't have ehlers danlos, this video taught me a lot about ehlers danlos! This is a really good informative video, you'd make a brilliant teacher
Your feeding stand has a seatbelt!!
You're so so pretty! And you must be very strong, you're truly inspiring
I’ve just found this video and it is so amazing. You are such a strong person and like you, I have Eds type 3 - hypermobility so it was wonderful to find someone who knows what I am going through
I have gastroparesis through my type 1 diabetes and I was in hospital a few weeks ago because of a flare up. I look up to you dear I really do
I have eds an gastroprasise an a peg tube..... An it sucks!!! keep your head high and keep smiling!
This video is very fascinating to me! My dad used to work for Abbott so it’s also very exciting knowing he did something that helps so many!
What an inspirational young lady you are! It’s strong souls like you that make me want to be a nurse
This is so touching how you are so confident! I have a GJ tube. My tube is on my stomach, and I am so glad it’s not on my face anymore! I used to have it on my face and it was so uncomfortable because I had a bridal so I could go swimming! I love your confidence! ❤️
I remember the first time I got my tube, I was so terrified. You'd have thought I was about to be tortured I was shaking so much, but it was over in two seconds and I was like 'is that it?'
I also have a couple of chronic conditions including a chronic mental health condition and how you seem to manage yours is really inspiring. For me its the restrictions and having to do things differently that bothers me. I miss just thinking about going to the shop and just going. These days its like going on holiday with having to check everything is ready and the stress getting out the door. Even washing my dishes is a pain these days. I really enjoyed the video and have subscribed :)
i might have to get a feeding tube in a few years, and this has helped take some of my fear away. thank you so much!!!
I WAS NOT EXPECTING EHLYERS DOWNLOS SYNDROM. I recently figured out I have it my arms and hips and knees subluxate. I have hyper-mobility as well. Sorry I am not good at spelling I just got told about having this by the doctor and I am starting all my tests and physical therapy. It's so odd now that I know what it is I'm running into it everywhere
Thedarkphoenix I know what you mean. I have EDS , POTS, and gastro. I’m 40 and was diagnosed 8 years ago and hear about it everywhere now. I’m so thankful for TH-cam too
once you are aware of something you probably start seeing it everywhere even if you never noticed it before.
I didn't think much about glasses before i got my first pair, it's something veery common
My sister has EDS type 3 and she is suffering rn Bc she may have gastroparesis but doctors r still figuring out the diagnosis. She recently was scoped and took some biopsies and we will get the results this week hopefully to find out if she has it.
You're so beautiful and well spoken! Thanks for sharing your story, you're such an inspiration! Much love! ❤
Wow, it's really cool to see you using Abbott products- I live less than an hour away from the actual production facility, and it's kind of cool to see the products that so many people in my area produce actually making life easier for someone!
I've never seen anyone else with hypermobility.. Cause I have it to and it's difficult for me cause you are weak in your joints.. Thank you for sharing your story and telling what you have 🌸
Your video is in my recommendations. I'm not regretting my choice to watch this. Thank you for being alive and giving inspiration to people. 😊💜
It’s cool that you can chew gum and be fed at the same time.😁 You are so inspiring and have a great personality! You are so beautiful!
You're so amazing.
This video makes me view things differently and I really appreciate this.
Knowing can help me understand a little bit, and I appreciate that.
You're really amazing, strong and brave.
You're so pretty btw!!! AH 😍
thank you for this video.
Thank you so much for making this!!! I wish more people would speak out about eds.
This is the first video I’ve come across, I love your positive view of life I’ll definitely be checking out more of your stuff and learning more 😊😊
I'm not sure why TH-cam put this video in my recommended, but I found this entire thing fascinating and now I'm off to check out the rest of your videos.
One reason why I never went to an eating disorder facility is because I’m deathly afraid of feeding tubes. When I was little I would get severe bloody noses (at least once a day) and had to get it cauterized more than once. It was the most terrible thing ever, and now I can’t let anything go in my nose
What if you sneezed? Does it hurt or feel really uncomfortable?
no it doesn't it feels normal i got one
I have a feeding tube to but mines permanently in my stomach. I wish I had mine in my nose. I’m kind of insecure about it but you’re super pretty and I hope you won’t to have it long and you can get healthy again!! 💞💕
I'm so glad I found you!
I also have EDS but I'm lucky as I only get IBS with my insides and it doesn't really effect any of my other organs (yet!).
I'm also a Nutritionist and have had to fit a fair few feeding tubes in my time but I've never heard of people having them with EDS!
You're so amazing, geez... makes me feel more positive. I'm not sure what to compliment, there's so many great things in this video O /\ O!
You’ve just got a whole lot of things to deal with don’t ya girl! ❤️
I have ehlers danlos too, I believe I have type three as well. It’s not common so I always think it’s cool when I find someone else who has it.
I do have a question. What do you do when your family eats dinner? Do you eat any actual food? Do you just chew it and spit it out for satisfaction? Very curious.
Chaotic Kitt3n I was wondering this too
Elizabeth Jane no stupid
@@sahaecrosdale5576 some people with gastroparesis chew & spit solid food, its not a stupid question
I work for the courier company that handles/ delivers all the abbotts stuff, osmalite, enfit giving sets, freego pumps.....I wonder if I've ever arranged any of your stuff before lol.....great stuff glad it's working for you 😎 xx
Your passing has hit this UK more than you know x
Very interesting! I'm a type 1 diabetic, and have been since I was 3. I've been dealing with on and off gastroparesis; of which the sickness was kind of worrying me. My vagus nerve hasn't lost total contact, but it's good to see and hear what I may need to know down the road!
I have EDS but thankfully my stomach seems ok, I'm sensitive to certain things but ok thankfully. My EDS isn't too extreme but feel like my doctors do not take me seriously at all and recently I have felt my heart has felt weaker but doctors haven't listened, I will have to go back and mention my hypermobility :/ thanks for bringing awareness :)
I always thought these were for people with eating disorders...
Learn something new everyday:) thank u
Ik this is super old but if you get sick and have a cough does it ever come up with the cough? I have lung problems and bad coughing is a regular for me and I got a feeding tube placed once to help with my weight but because of my coughing I couldnt keep in down
Not trying to be wierd or creepy at all, because ive never commented on a youtubers video like this, but you a really, really pretty person :3
I was in a coma for 3 months when I woke up I had a trach and feeding tube. I was so sick from the feeding tube and crazy thing I could taste the feed and when they put meds in they tried different feeds but I was still sick think it was from it moving in my stomach cause when they turned it off for a day I was not that sick but they had to tune it back on . Maybe it's cause I get bad motion sickness. I still have my trach getting it out this julyi hope they removed the feeding tube after I had a swallowing test done. I really enjoy your videos I've learned a lot ty
you're so strong!!
You are sooooooooo frikkin GORGEOUS!
Just for the record, Amy's medical conditions was NOT from Anorexia! She had physical disorder called gasteroperisis. She also had EDS and these were all tied into why she passed on.
I still can’t believe that she’s gone
You are so cool!!! I absolutely love your positive outlook (:
omgoodness I'm struck i think that ur rly pretty
You are so strong and lovely! Thank you so much for sharing your story. ☺️
I too have some questions, if that's alright. And thank you for such an informative video! So I was wondering, do you still need to wash your teeth as often now you have the tube? Do you have to move the tape on your cheek around or does your skin seem to cope ok with it there at all times? Do patients have any say in the choice of nostril side? lol Oh also does it affect singing at all? Is it possible for your condition to improve again, or at least the digestion element of your condition, or is the tube here to stay for the forseeable future?Thank you again for sharing this part of your life with us!
Joanna Joanna well the tube is semi permanent because gastroparesis is a chronic condition with no cure but I hope that as I get older and my body changes that I will get better 💖🙏🏼 Yes we usually do get a say which nostril for me I preferred my left just because it seems to go in smoother that side and then my nose ring is still on show 😂 Nope it doesn't effect anything to do with the voice especially not singing I'm still completely tone deaf when it comes to that 🤦🏽♀️😆 as far as brushing your teeth goes I do it about 3 times a day and after everytime I'm sick because the stomach acid can rot your teeth if you have chronic vomiting but besides the vomiting I just stick to 2/3 times a day! And yes the tape has to be changed regularly otherwise the skin underneath gets sore and irritated 😬 I usually have to apply special products and skin care to that side of my face and I switch between a few different brands of tape so my skin doesn't react too badly!🙄 I think that's everything aha let me know if you have any more questions 💚 and if your interested I'm posting another gastroparesis/ feeding tube video this Friday , so look out for that 💕💓
Thank you!!
*I’ve actually had one before I went to a G tube* .In my opinion, it’s not the best but it doesn’t hurt. It isn’t a good feeling having it put into your stomach though, it’s like gaging for 5-10 seconds ( depending how fast u go) but once it’s down, it’s fine. ^_^
I didn’t know any of this before! I thought it was just for people with eating disorders and stuff. I have some more questions, do you get hungry? are you hungry all the time or do you ever feel full? And have you ever eaten anything? Like a proper meal or snacks or whatever? U are really inspiring!! Hugs
I love your videos! It's so Interesting, meaningful, and educated. You will always be in our hearts and in your honor I will rewatch all your videos. To Amy's family - you are in our thoughts and love and hugs go to all of you. Amy was a WONDERFUL, SMART, FUNNY AND BEAUTIFUL women! RIP.
Just found this, you are awesome. Thanks for sharing your interesting life. I think we take health for granted if we don’t have a condition like this.
As one eds warrior, to another. Your amazing. Im i guess lucky as i have eds an hyper mobility syndrome and fibro. I dont have thr feed tubes but have severe issues with stomach acid. So rely on medication.
Send you hugs and massive thumbs up for you videos and awareness. Xx
You are so comfortable with the Camara I love it
This is a great video, I don’t know how I ended up here but thank you! You seem like a great person! 🤗
I've had these a couple of times. Personally, it was horrible. Putting it in was traumatic and caused me to gag and cry. Probably because of how it was done.
You are the prettiest woman I've ever seen. 😙
My question: What if you accidentally pull on it? Would it rip out?
Thanks for this video! I learned so much, both about the NJ tube itself as well as the fact that this condition does not define you one bit. I really admire you.
Hi! I also have EDS, POTS and gastroparesis and I’m so happy I came across your channel! I’m having an NG tube fitted really soon and I’ve never had one before. I’m so nervous, what does it feel like once the tube is in? Does it feel like you’ve got something constantly stuck in your throat? Does it hurt your throat or do you kind of yet used to it and forget it’s there? I’m sorry to bombard you with questions, it’s just so hard to find people documenting their experiences online. Stay strong 🦓💕
she is beautifull. A very strong woman.
Have you heard of a pacemaker for the stomach? That was a surgical option for me when I had unexplained gastroparesis
All due respect to you girl :)
Keep on doing what you’re doing girl 😋👍🏽