Living With A Feeding Tube 24/7 | TRULY
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Living With A Feeding Tube 24/7 | TRULY

August 18, 2019


AMY FISHER: If there was somebody in a wheelchair with no arms and no legs, you wouldn’t walk up to them and go, “Why are you in that chair?’ Why do people feel the need to come up to me and assume that I am anorexic? There needs to be more awareness for feeding tubes and the reasons why people have them. AMY FISHER: Then I must pop a lid on. AMY FISHER: That is ready to kind of be poured into my feed bag. So I’m at a point in my health where it’s just so unstable. It’s so unpredictable where I can be fine one day and even the same day, within a few hours, being in the hospital. AMY FISHER: I started getting problems with my health around 15/16. I was still in secondary school. I was getting like a lot of pain in my legs and I went to a few doctors and they just kept saying it’s growing pains, it’s growing pain. AMY FISHER: I was getting palpitations where you can feel your heart beating. They kept saying, “Oh, it’s just anxiety, it’s just anxiety.” And then eventually I came to be diagnosed with POTS – Postural Orthostatic Tachycardia Syndrome and it’s basically a heart condition. I was diagnosed with Gastroparesis and then Ehlers Danlos. AMY FISHER: That’s just going to prime all the air out of the line. AMY FISHER: I just usually give around 10ml and I just do that slowly. So it doesn’t cause too much pain. AMY FISHER: I have Ehlers-Danlos Syndrome Type 3 and that is a connective tissue disorder. AMY FISHER: As far as dislocations go, I get them daily, multiple times a day – my fingers, shoulders and ankles and knees are my most troublesome joints. Or if I leave the house, I’ll put my ankle supports on. The collagen in my body, I have very little of it. So that’s basically a protein that holds all your joints together. I crush them up with this tablet crusher, and then I just deliver them, mix them with some sterile water and then deliver it down my tube with a syringe. AMY FISHER: I lost a lot of weight very quickly and that point my doctor said to me, “If you keep losing weight at this rate, we are going to have to intervene.” AMY FISHER: I was trying supplement drinks and even with that, I stopped tolerating them and I couldn’t keep my weight up. BRUCE FISHER: When Amy first started to lose weight, I was a little bit concerned. I did think it was an eating disorder. I really thought that was the case. But realising later on, after talking to her that, that it wasn’t. AMY FISHER: I got a feeding tube because I have Gastroparesis which means my stomach is paralysed and it doesn’t empty food properly. So when food goes in, it can’t digest. AMY LEE FISHER: Okay, guys I have to be really, really quiet because it is half two in the morning. I have been sick about two times, just sitting here in the past ten minutes. AMY LEE FISHER: I vomit basically when I eat but it can be hours and hours and hours after eating like, the food will just sit there and sit there and sit there. That causes like extreme pain, extreme nausea, general like, bloating, discomfort that kind of thing. It’s really sore like, that’s my hip bone that’s usually really, really prominent and it’s now like, non-existent. My feeding tube stays in 24/7. I have got no other source of getting my nutrition. I depend on it. I rely on it. It keeps me alive. AMY LEE FISHER: The feed is ready to be connected. So I just connect that like that and then I just press ‘run’ on my pump and then you can probably hear the pump. It’s going to start delivering the feed into my tube basically. It can get uncomfortable if I do a lot of talking or laughing because it moves around your throat all the time. It does cause pain, especially in my nose. AMY LEE FISHER: Having something there all the time and rubbing against like, your insides, it causes like, blisters in your throat. AMY LEE FISHER: I eat and drink by mouth most days. I try to drink orally as much as I can because I don’t want my stomach to just pack up and stop working completely. My family is sitting down for a meal; I would just have a very small portion, I would just try my best because even if I am sick, there will be a very small amount of that meal that I will digest and that’s better than nothing. And, you know, if I don’t then how am I going to know if I am getting better? TOM HARRIS: I suppose it’s sort of, like having a little newborn baby. You got to prepare for anything, ‘I’ve gotta take that with me. I’ve gotta take that with you,’ sort of thing. AMY LEE FISHER: I get a lot of stares from the public. You would be surprised how many people say little comments or point. If it’s a small child, I will just be like, ‘Yeah, okay! You know, they are young. They don’t understand.’ But when it’s an adult, I would expect them to have a bit more respect. And if I have to vomit in public, a lot of people assume that I have an eating disorder. I have had many, many people say things like, ‘Why do you do that to yourself? That’s disgusting like, just eat. It’s not that hard.’ And just silly comments like that. It’s not an eating disorder, my stomach is paralysed and it doesn’t work, unfortunately. AMY LEE FISHER: I have a lot of days where I don’t want to go out and it becomes very difficult when you have got a feeding tube on your face to hide it. There is currently no cure. Things might improve but they haven’t. But at the moment, I am actually working with my team of doctors to get a Gastric Pacemaker which basically is essentially like a pacemaker for your heart except it’s for your stomach and it’s meant to stimulate digestion. AMY LEE FISHER: When I was getting my first feeding tube, the first place I went was YouTube and I typed in. I was like you know, ‘What is a feeding tube?‘ And then I was like, ‘You know what? I am going to do that because there is going to be another me that comes along and wants to know about this. And if I can help just one person, then that’s amazing.’ AMY LEE FISHER: ‘Hey, guys! Welcome back to my channel. How I kind of, deal with people staring at my face. How to remove an NG Tube.’ I get hundreds of comments from people saying, ‘You have inspired me.’ But I think really they don’t realise that they are inspiring me too. AMY LEE FISHER: Being able to help people and I read these comments and it just, you know, it lifts my spirit and it keeps me in a good place mentally. And I couldn’t imagine not having that there as a support system now. BRUCE FISHER: What I admire most about Amy, even though she is going through all these dramas, it really doesn’t impact on her at all. Some restrictions obviously but apart from that stuff she knows she can’t do, it doesn’t stop her from doing anything. AMY LEE FISHER: A lot of people think that you can’t do things with the feeding tube like you can’t swim, you can’t shower but that is not the case. You can do everything anyone else can do. There is nothing that you can’t do with a feeding tube. AMY LEE FISHER: I am going to try and live my life as much as I can to the best of my abilities. But I have just, kind of, got to go a different way about it you know, take a different road than say the average person.

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  1. Why won't she get the feeding tube in her stomach instead you still can eat regular food that's what I have cause the noses one is way uncomfortable

  2. She has a Hickman line now, TPN, and I believe it is called a button or a technical name so She doesn’t have a nasal feeding tube. She’s so full of life

  3. 5:25 even if she hade an eating disorder you don't say those things to someone with an eating disorder it's not as easy as it seems to eat when you're dealing with something like that.

  4. I have been diagnosed with Hypermobility, uriciata and angedioma, ibs, leakiness of the gut and irrablity of the mass cells

  5. You Know What Your BEAUTIFUL JUST THE WAY YOU ARE 😘😘😘😘😘😘😘😘😘😘😘😘😘😘😘😘😘😗😙😚♥️💓💕💖💗💙💚💛💜💝💞💟🖤

  6. Love this girl! Keeping up with her videos while I’m in and out of hospital helps me to stay strong, truely an inspiration to me x

  7. H-hi…. all I want to say to you is that you’re so very strong and brave and I want to become as strong and brave as you!

  8. Amy is amazing, I watch her vlogs all the time. I suffer from multiple autoimmune diseases, including Gastroparesis related to/caused by these autoimmune diseases. Every disabled or chronically ill person Ive spoken to has been harrassed/bullied by strangers, who make ignorant assumptions. It's extremely hurtful and isolates us even more than we already are.
    Those of us who have Disabled Parking Placards, we have to have a doctor's order for, really experience harrassment because not all disabilities are obvious or visable. Thank you making videos like this, for attempting to educate the public and for supporting those of us with chronic illnesses. Please continue to do so.

  9. It’s funny because I usually don’t associate feeding tubes with anorexia because it’s used for mental disorders in last resorts. Whenever I see someone with a feeding tube I ask myself what illness they’ve got

  10. I had the same basic initial response from doctors before being diagnosed with my conditions – very frustrating. Gotta be your own advocate and keep fighting don't ya ♡

  11. Can she have that surgery that you remove her stomach i heard it can help alot and you can live a pretty normal life

  12. I'm traditionally Cherokee on this–people are how they are for a reason, and we just figure that it's part of who the person is. We do like to ask how to help though, if need be. That's the value we call gadugi, helping out and providing mutual assistance.

  13. I hear you about the bloating ! I pretty much stay bloated and have to wear my sweat pants all the time! Yes people have asked me if I'm pregnant but I always tell them no !

  14. I too suffer from gastroparesis as well as barrett's esophagus ,fibromyalgia and chronic fatigue syndrome! I've been using a feeding tube – but it's a j tube as it bypasses my stomach and goes directly into my jujenum .Dr Jones said it would be the best thing for me ! I had a NJ tube to begin with and just a few days ago I got the permanent j tube.Still sore from surgery and of course the gastroparesis is painful! But I am getting a little bit better just have to take it slow and easy ! I had a gastric stimulator but my stitches busted open and exposed it! So then they had to remove it ugh .And that's how I got the NJ tube and finally this j tube

  15. I have learned one thing from Barcroft: NEVER JUDGE!!! You have no idea what someone is really going through.

  16. I swear the people at school think I have an eating disorder cuz I usually dont eat much for lunch but all im doing is cutting down on how much food i actually eat so that i can lose weight

  17. I’m re watching this video about a year after the first time I watched it and I just realised that it was this video that took me to her channel and I’ve loved it ever since😀😀😀

  18. Hi! I have pots and EDS hypermobility. I’m so lucky that I don’t have a tube. I just get tummy pains/problems but I can manage and I only have to take 3 tablets a day for the Pots/EDS. So proud to see you educating people. One day a cure will happen 🙂 X

  19. What she said about people commenting on her is just horrible. Even if, or maybe especially if someone had an eating disorder, it would be a horrible thing to say "just eat, it's disgusting". That would be pretty much the same thing as saying "stop being so dramatic" to a person with severe depression or anxiety. I can't believe that people say things like that to a complete stranger.

  20. My friend his sister has something like is but she is 1 years old or 2 I so sure and she can't wait and she has the same it's really sad but she is really cute at the same time and the best thing is she is eating now like we all do cause she couldn't eat food it was really sad and I mean really sad :c but she is getting better

  21. My sister had a feeding tube going through her tummy… she sometimes gets a little self conscious about it but I just tell her it’s her second belly button! (She got it removed and the scar just looks like another belly button) 😊☺️
    If you do have a feeding tube, just know its going to be okay and you are beautiful no matter what anyone thinks. 💕💕💕

  22. The thing that people really need to know is an eating disorder is not just a simple thing like "shove that food down ur throat u skinny goat" It's not really that much of a choice. When you have an eating disorder you become sort of like a slave to your own imagination/mind and you can't control it most of the time. And anorexia isn't the only eating disorder out there.

    And may I address that people who say "just eat food that's prepared it's not that hard" To people who have anorexia, it's just ROOD

  23. I live in Perth 😱😱😱😱😱😱😱😱😱😱😱 I might be able to see her one day yay! 🤗 she’s really sweet

  24. You know I’m sorry I hope you have better chance in life and somthing Like modern medicine can find a way to help you a lot more

  25. I just feel the need to say this: POTS is not a heart condition, it’s a malfunction of the Autonomic Nervous System

  26. I did have anorexia…it is difficult. I almost had to get a feeding tube. I would cry if someone said, “just eat! It is not that hard!” It can be very hard to eat, I am not anorexic currently, but my weight goes up and down all the time.

  27. If you are using a feeding tube 24/7, why not get a J tube instead of a NG tube, then your nose and throat could have a break? It would also bypass your stomach, which as you said does not work well anyway. NG tubes are okay for short term use, but if you are going to need a feeding tube long-term it makes sense to have a J tube inserted.

  28. You are so lucky to have a good health system in USA . Here in Morocco you would die if you had the same problem. we have a very poor health system. it sucks literally

  29. I was just diagnosed with POTS and people and doctors can be so annoying. I’m trying to figure out so much about my health and it sucks to have people not believe you or stare

  30. You go girl ! You keep up the positive ! Wonderful things are going to happen because of your awesome spirit ! Remember you was young medicine will catchup to you , you are wonderful.

  31. might sound weird especially for atheist but by gods,I'm convinced you are one true beautiful strong lady….God chosed you simply because 90% human can't go through what you are going through….God has better plan for you….I'm simply amazed by you cuz despite your pain,sufferings and hardships,you're still selflessly trying to help other people…that's something only real life super heroes possessed roughly 1 in 10million and more ….you got it all my lady…my sincere prayer goes out to you…..you'll most definitely overcome anything cuz you are the best…
    God bless…

  32. might sound weird especially for atheist but by gods,I'm convinced you are one true beautiful strong lady….God chosed you simply because 90% human can't go through what you are going through….God has better plan for you….I'm simply amazed by you cuz despite your pain,sufferings and hardships,you're still selflessly trying to help other people…that's something only real life super heroes possessed roughly 1 in 10million and more ….you got it all my lady…my sincere prayer goes out to you…..you'll most definitely overcome anything cuz you are the best…
    God bless..

  33. I'm 13 now but when I was 12 I used to have a feeding tube, and obviously I had to go school. Whenever I was in school, people would always question me as to why I had a tube. It was bloody annoying. Even complete random students would come up to me, like you don't even know my name yet you're asking me questions?? I remember when some people used to ask my mom ALL the time why I had it, I get you're an adult but respect people's privacy.

  34. Maybe instead of having an NG tube on your face, you could have a g tube. Much more comfortable and people won’t know because it’s in your stomach and covered by your shirt

  35. Watching this while priming my son's Joey pump…. hopefully he'll be as good at looking after his health as Amy is when he's older…

  36. Oh I love Amy! She has such great energy in her videos and she always seem so positive. I really suggest that people go and check out her channel!

  37. People asked my sister why she needed a wheelchair lol thats wrong
    She died because she needed a tube a heart machine and a hole to breath but was to sick to survive
    we should all be happy even with other conditions
    she can eat she can enjoy life and she can walk by herself
    every condition IS hard but we all be prepared that we could one day end worse

  38. I have POTS as well, it’s super tough. I can’t imagine going through that and these other things that she has.

  39. Omg i feel bad for that girl because she has too wear all those feeding tubes too keep her alive

  40. Is it more common in the UK to have ng or nj tubes for a very long time before an implanted one is done? Im in the us and i got my pgj straight away once my gastroparesis diagnosis was confirmed, i did iv supplements before that. The only nasal tubes ive had were the large bore ng for suction

  41. Жалко нету русских суббтиктров, поняла бы о чем говорит она

  42. I was only listening to this video and as soon as I heard your feeding pump I knew exactly what brand and kind of pump that was because I use the exact same kind. Was really cool to see that I wasn’t the only one.

  43. I love Amy so much! She's such an inspiration! Ive been watching her for a while now and she has taught me so much about illness and mental health

  44. Amy Lee, You're SUCH AN INSPIRATIONAL YOUNG WOMAN! Anyone who makes remarks about you "Having a supposed eating disorder" Need to 1 – Realize That's NOT WHY YOU HAVE IT, 2 BECAUSE – They have absolutely I know right to judge you at ALL, by any means whatsoever. 3 – If they say something rude and it was me I think I would snap I don't know how you can hold it together when people make comments you are so strong for that and I mean so so very strong.
    4 – People, especially when you're out in public! they need to have a filter & watch what they say and realize that NOY everyone who has a feeding tube, Automatically has yup have or ( She MUST HAVE) an eating disorder, and that's obvious.
    In your case, As you've said, You have it because it's literally saving your life – and if they knew that – after they said something about an eating disorder – I WOULD CERTAINLY HOPE THAT they would feel EXTREMELY, EXTREMELY bad, For judging you, When they have ABSOLUTELY NO idea why you have it in the first place!

    A genuine human being with feelings would not judge, And Sometimes I Think people have absolutely NO feelings whatsoever, And that's just Pathetic – That's A Psychopath.

  45. I don't know if someone has asked this, but have you considered getting a J tube? That might be more comfortable.

  46. Im 25 I had 15 surgeries. I've been MPO for weeks dozens of times I know what it's like to not to be able to eat or drink. its something that you cant really describe.

  47. Amy has become a voice for EDS and her life and story to this day makes me believe I can do anything if she can manage what she goes through everyday.

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