Amy, you only have one life. There are no do overs. Draining is your normal. It has to be very hard to want to taste something and not be able to. I'm so glad you have a tube that allows you to drain and be able to taste things again. To sit down with family and friends and have tea and even if it's just some mashed potatoes and a smoothie at Christmas. You get to partake in the sociality of things and that's wonderful!! You keep doing you girl! Other people dont have to understand or approve because this is your life and your normal. One life, do what makes you happy!
Well technically we will also live in either Heaven or Hell when we die. It all depends on whether or not we are Born-Again Christians or not. Now in order to become a Born-Again CHRISTIAN what you must do first thing happens to be: pray to Jesus Christ, second: ask HIM for forgiveness, and then, third: follow HIS teachings of both The New Testament as well as The Ten Commandments.
Kaitlyn McKessy this paragraph was very positive and you made it negative. Not everyone will believe in religion and maybe you should live your one life too.
I understand why you eat. I have lost my ability to taste food after a small stroke. I really miss the flavor of food. It must be doubly awful to be physically ill after you eat.
I had 2 strokes while in the hospital. I did not loose the ability to taste, but i noticed the taste of food has become too strong now. Thank goodness i am not completely paralyzed but i started having seizures, which has added to the shock my body has to go thru
I’m sorry u had to deal with that.. health problems really suck.. I was diagnosed last year with a cancer n had to take chemo tablets for the rest of my life which completely changed the taste of food (not even disappeared) for me so I stopped eating for a while and then just kinda ate to survive. I had to stop my meds for a short period before resuming again I literally would binge on a LOT OF FOODS I would just eat untill I feel sick and still eat, most of the times I end up vomiting but just the thought that this is the last time I’ll taste real food pushed me into eating more.. it’s smth we never thought we were blessed with back when we were healthy!
My Mum was born without a sense of smell and so food is a totally different experience for her. Mum prefers really bland food because she can't taste the flavour of spices, she just gets the heat. When we shop sometimes she'll see me smelling fruit and she'll be like why are you doing that? Also when she asks what do strawberries smell like or anything else how do you answer? I now try to keep my descriptions to things like sweet or sour something that my Mum can understand.
I never questioned why you would eat even if you had to drain. I completely understand why you’d still want to eat! It’s a way humans bond together so it’s 100% understandable
To Amy that’s her normal so people judging her for something that is normal for her just like shitting she just empty’s her tube instead that’s just my view xxx
Because she can’t process it. She eats because she wants to eat something and that’s ok. You should argument why people eat junk food instead of healthy food. They eat it bc it tastes good and that’s also mainly the reason why Amy eats. Imagine someone comes to you and says that you’re not able to eat nothing anymore. You’d be craving so hard!
Rip beautiful Amy. Fly high gorgeous girl. Your impact and legacy left behind will be felt forever and I’m so grateful we still have these old videos to watch to still hear your wonderful words. We love you.
Rip Amy we all miss you now and for always the world has truly lost a good friend indeed fly high with the angles amy sorry to hear and for your loss tom and her family
Currently rewatching her videos. I feel like I've lost a good friend. I'm so sorry to Tom and her family for their loss, she was such a beautiful soul 😭
I always appreciate so much that you either don’t show vomit, or if you do, you warn first. I have struggled with emetophobia all my life and even though I personally have made a lot of progress over the past year and could probably handle a video depicting it, I know there would have been a point where I absolutely would have needed to be warned. Not enough people know about or take emetophobia seriously and it makes me happy that you do💕
Charli Ward I have really bad emitophobia and always get super stressed while watching these kinds of videos. Warning for me are so important because it keeps me from having a bad panic attack. (I skip over parts with vomit) my panic attacks involve nausea to do it all builds up to the point where I have passed out.
Cleo my panic attacks make me nauseous too and it just fuels more anxiety, it just spirals. I have passed out and vomited from severe panic attacks on a couple occasions. I don’t have them as often as I used to, thankfully.
Charli Ward it's so annoying because I'm in school and during health class I had a full blown panic attack because my teacher forgot to warn the class that there was going to be someone vomiting in the video. My fear has only gotten worse and it's exhausting because nothing I do helps. I haven't been to a psychiatrist so I don't know if it's just a fear or if it's related to anxiety or something like that.
I love that you try your best to live a “normal” life and do what you want regardless . I live with severe asthma so I know what it’s like to want to do things everyone else can but is difficult for you. (Side note. I put normal in quotes because there’s no real definition of normal when it comes to different life styles)
I agree! I to suffer from a chronic illness, its called Hypoparathyroidism. Its a rare disease. Its a devastating disease that effects your calcium, magnesium,Vitamin D3 and iron. Having this disease causes tremendous fatigue, fast heart rate,kidney damage/failure, tingling, tetney and twitching. These r the few symptoms that makes living difficult. Now for me its extremely bad so I'm on a hormone replacement therapy. Its called forteo. Its original use was for older people with osteoporosis. But is now being used on patients like myself! Anyways having a chronic illness causes immense depression and severe anxiety! So I understand to a degree!☺
I also have asthma and my asthma is mild and when I get infections it can be hard sometimes and I have a respiratory infection right now which is really annoying .#amy strong #girl power
You are my hero! I couldn’t do what you do every day hun. You must be a blessing to your family. I pray that god gives you the patience and guidance to live your life every day as happy and normal as possible!
Hi Amy...thank you so much for your videos. My 9 yr old son has GP & EDS...we are still learning to navigate thru his symptoms and pain but watching your videos gives me such hope that he can live a happy and fullfilled life even with his diagnosis.
I also get questioned why I drink if I have to go drain it immediately. I’m like “well I’m only human.” So happy you explained it to others that don’t understand why we do what we do. I also have a channel and if it’s okay I’d LOVE to make something similar to this 💜
Literally everything is food 😩 ‘want to meet for coffee?’ ‘Lunch tomorrow?’ Urgh. Nooooo.. I hate looking out of place so tend to just eat something and end up in agony and the nausea omg. Yuck.
Yassss! And when you dont eat OTHER people will get uncomfortable... like Dude, I’m the one that is not eating, not you 😅😅 My sister does not want to go eat at a restaurant when we are shopping because i cant eat and I’m like; Uhmm Yeh but you need to eat... But she does not want to do it because she feels uncomfortable when I dont eat with her 😂🙈
Yes.. I have kids so I can avoid those awkward conversations because I focus on them eating. But I do still have moments that make me cringe. Hubby wants to go on a date but that also involves food. I don’t mind him eating, he’s gotta eat.. I just have a drink if I feel I can tolerate it and he’s fine with that.. but the looks you get when you don’t order 🙄
Kaleena yep! I’m always afraid they think i’m on this weird diet like the other Young skinny blond girls when I say I dont want any food. Nope, I just cant eat 😅
I don't think you need to justify why you eat/drink when you know that you'll just end up draining it later, it's natural for us to all want food and it's great that you have a way to still enjoy it and not suffer as much consequences for it later! Life with chronic illness is really limiting, so you need to indulge in all the things that you can! ❤️also I notice that you drink a lot of tea, which is my current addiction so every time I watch your vlogs I always feel the need to go make another one!! ☕
*snorts* at people who critisise Amy for eating drainable foods. I was so, so happy for you when you got that tube and were able to eat & drain stuff like skittles, like, they'd been kicking you around not giving you that tube for MONTHS when they could have. Happy for you with a passion, you go ahead and eat that damn ice lolly, gurl
omg how can someone judge you for the draining? Ive got stomach problems and fortunatelly my stomach still works but I cant eat a lot of stuff and its a real problem for me and people around sometimes. So I really understand you for doing that, Id do that too :D you are such a fighter, enjoy your life and dont feel bad for that. :)
I deal with a condition where I cannot always swallow food and it gets stuck in my entire esophagus. I sometimes only throw up the food in my esophagus, or it could be a 30-minute session of throwing up. I cannot enjoy a nice meal without worrying if I have to run to the bathroom. I know my condition isn't as bad, but it is miserable. I know what it feels like to struggle to eat. I also deal with stomach pains or constipation. Truly makes me miserable. But, you help me to know that you can only live your best with what you have and any life can be worth living for. Stay strong girl!
I have just done some research after noticing the video was 5 years old, and I found out that Amy passed away in 2021. She leaves behind an inspiring legacy. Belated condolences to all her family and friends. She helped inspire me with my much easier chronic condition and my life feels much lighter after watching her videos. Her light shines on.
Your accent is so British but so Australian at the same time and honestly it's the best one going. Your videos inspire me so much and literally love you and your UA-cam!x
I also have Gastroparesis, I can still eat some solid food, but mainly I stick to fluid, protein shakes, tea, water, etc. Im grateful that I can still eat to a point, but Im getting to where the pain, nausea, bloating etc afterwards is just not worth it. I'm so impressed and proud of you, you handle your medical needs with grace, maturity, and wisdom beyond your years.
Your point about now realizing how much of an impact food has really hit me. I fought my interstitial cystitis diagnosis for so long and ate “forbidden” foods, only to suffer every time. I’m finally realizing that it just isn’t worth it to “cheat” and I have to stick to the diet. It’s hard and it’s isolating, and I really appreciate you making this kind of video ❤️
How do you feel after draining stuff from the tube ? Also, have you ever tried to absorb sugar putting the gummy under your tounge? Sugar will be absorbed quicker
Sometimes I wish I had a tube to drain food when I screw up and eat something I’m not supposed to. But at the same time, I’m lucky to have a milder form of gastroparesis that so far hasn’t necessitated a tube. It’s true though, you never realize how much food impacts life until you can’t eat or you can’t eat certain things. This was my first holiday season with GP and it was awful. #EDSsquad
I get that too! "Aimee, why do you do this?" "Why do you eat something you know will make you vomit?" My answer is always "because that's my choice!" I love frosty fruits too! :)
i had a gastric sleeve surgery and I totally understand you, my recovery is almost like your daily life, but for me is just a matter of time, take care of yourself ❤️
Mariah Macarthur nope! it should basically just feel like your stomach emptying quickly, kinda like when you're really full and you go poop and feel way better haha. if anything you might feel some bubbles in your stomach but it wouldn't hurt!
It’s a thing humans have to have and it’s normal to want to eat and physically taste food. So you do what you choose to do. You have that right ♥️🙌🏼🙌🏼Great video 🤗
The whole “why do you eat and drain?” Question kinda reminds me of a question I get sometimes as an autistic person, which is “why do you try to socialize if it exhausts you so much?” My answer is just “because I’m human.” It may be tiring, but it’s fun and it’s a fundamental, fulfilling part of being a person.
Thank you so much for sharing. This is the first video of yours that I have watched. My husband has been very ill for 7 years now. He is on 24 hour TPN and has gastroparesis and has a hole in his colon with 4 fistulas. He just got an iliostomi and we are struggling to find things he can eat. He hasn't eaten much for years now but is now eating a couple of bites a day. Your video helped us to not feel so alone. God bless you. Things can be really hard sometimes but never give up. We put our trust in God and He has never let us down. We have had so many miracles. I don't know why you have gastroparesis but I will watch more of your channel. Thanks again for sharing.
Amy...i just found your channel. My name is Ron and i suffer from Ulcerative Colitis and Gastroparesis (non.diabetic). I have been NPO for over 5 years now. My gastric system in now totally paralyzed so I have a surgically placed G/J Tube, and have been on TPN (had in excess of 7/8 different picc lines) during the worst parts. I dropped 75 lbs over the first 1.5 years...and have had multiple transfusions because of the bleeding ulcer issues... Just wanted to introduce myself and to let you know that your not alone...
A few yrs ago I had c-diff which was horrible, it shut down part of my bowel. I just relived the feelings as you were talking about it. You are so strong and I totally understand why you eat. I started off with broth and smoothies then to mashed potatoes and acorn squash but after awhile nothing satisfied. When I was at 1 of many Dr visits they had finally diagnosed me and ended up giving me meds that made me feel great.. I went straight to a drive thru and ate sandwich and mozz sticks...lol. Oh that was a bad night but kind of worth it...I'm all better now which I'm very thankful for, but your video made me think back to that time in my life and I'm amazed how strong you are. You are happy and look healthy. Keep up the good work. Never doubt yourself..if it works for you than do it!!
That is the hardest thing to explain how gasstropariss is. I love your sharing your story it helps me so much. Ive been dealing with it for almost a year now snd the throwing up is horrible. Im going for a gastric pacemaker as soon ad my insurance aproves it.
The not wanting to eat solids thing is exactly why I have an abundance of lemonade mix in the pantry and I freeze it about four times a day and “eat” the ice. It’s my favorite thing on the planet right now that doesn’t have too much potassium/phos for me and doesn’t raise my blood pressure too much and settles my stomach. (I’m on dialysis) I don’t exactly know what you’re going through but I did have a central line for a long time when I first started hemo. Then I moved to peritoneal dialysis and had that catheter in my stomach. As a young girl having to do my treatments I remember setting it up like you have to with a sterile connection and everything and I got infections frequently and also frequent hospital stays. You are so strong and it’s nice to watch your videos bc that’s a little like what I went through too. Now I have a fistula and am back on hemo dilaysis 3 times a week. They both have their pros and cons but for now the freedom i have with having off days and not tons and tons of supplies are sort of working for me right now. It’s hard to travel but what can you do lol. I hope things continue to get easier for you as people start to learn more and more with the medical aspect of things 💕
I am so glad you explained to people why you still eat with GP I do the same thing and people always get so confused! A lot of the time I still throw up after eating and I get more pain, but as you said life is so depressing with a chronic illness as it is and is considerably more miserable without food!!! Thank you so much for spreading awareness!!!!!!
Fly High Amy, it’s my first time here in your channel and you made me realized that life is beautiful, you inspired me to fight my illness. Gone to Soon Lady but you left with us your legacy. Rest In Peace Amy
My mom has gastroparesis. It’s been a real struggle for years. Lots of hospital stays. You are definitely very strong and I send you so much positivity.
Thank you for this, I am now on TPN and about to get a tube in my stomach and you are giving me confidence and encouragement to continue to do it. I was scared but you made it a lot easier for me to choose. Thank you!
You are such an inspiration! So upbeat and positive. I hope no one says anything about what you eat. You eat what you want! No one can ever understand what you go through and you should do what makes you happy! God bless you !!!!
I just found this channel and I’ve got to say that it is so refreshing to see a person living their “normal” life which is completely “abnormal” and simply living. It’s a lovely reminder that I’m not alone with my weird diets and “food evacuation techniques”.
I remember I was at the airport and I got a coffee and immediately needed to drain it out. So yeah, I was draining in a gross airport public restroom. That has to be the worst place I've had to drain in☠️
I was born with a jaw deformity that caused it to be really difficult for me to chew and eat. I’ve had 4 jaw surgeries and been unable to eat. and I remember sitting at thanksgiving dinner for 2 separate years poking a syringe through my teeth to eat my dinner. and I was devastated 😩😩 being deprived of food is so heartbreaking I feel for you so much. you have a lot of self control to not eat more heavy things 😅 not eating can drive someone crazy
Tom, I know how hard it is for you. Amy was beautiful, intelligent, and helped young and old how to live with a disability. We need to hear from you, we are grieving too. I feel like I lost a grandchild. I am a seventy-one-year-old grandma of 10. I loved you two and still love you, Tom......please talk to us. Heaven has a true Angel. I hope you are a believer 🙏🦋
Just got my first feeding tube in December due to esophageal cancer. Your videos have helped tremendously in me dealing with my illness! Although we are very different, I can relate to what you are going through! Thank you so much!
I know this might not work for you, but I make homemade soups and stews and purée them so that it’s drainable and easy to digest. Just a thought I thought I should share!
And I thought my life was hard living with Lupus & Fibromyalgia. Chronic pain and fatigue. Your so brave because your life is consumed of keeping your self alive and being positive about it all shows how mature you are ♡
If I was in your situation I'd do what you do, I can't imagine not being able to eat, you handle it so well, your totally inspirational, might be wierd but I just watch your videos because I enjoy them and I'm interested but I'm not in your situation.
I have had gastric bypass with terrible complications. Do not have a paralyzed stomach,but have to eat things that drain. I so get it Amy! Think about it,most all social encounters revolve around food or drink. We are human,humans are social beings....food is always there! LOVE LOVE LOVE your channel! ❤️from Stone Mountain,Ga. XO
You're a superstar, Amy! You really are! I admire your strength and lighthearted attitude towards dealing with such difficulties in your life! I also have EDS type 3, as well as systemic lupus, rheumatoid arthritis, hypothyroidism, epilepsy , spinal problems, and adhesions that cause massive chronic pain. So, needless to say- I know a bit about taking a ton of medication (currently on 22 different medications, several times a day as well as injections) and dealing with chronic conditions since a young age (started at 9) UGH! Right? I still find that a really good sense of humor (sometimes a bit of a twisted one at that..lol) is one of the BEST coping mechanisms to have! Am I right? You are absolutely beautiful, and i'm learning so much from watching your videos! You're so articulate! Please keep making them- and I'll keep watching them! I wish you and Tom all the best, everyday! I'll keep you in my thoughts, in hopes that someday soon, you will be able to eat and digest food through your body once again! ♡
You make me feel strong and positive toward my life as well. You are literally the strongest person I've ever seen. So proud of you and tons of love to you💞
Wowza… talk about eye-opening. Had no idea this kind of procedure, "draining," existed as a routine part of a person's life. Amy, you certainly have an onerous life and face more adversity than most. You pull this off with more grace than I ever could, and I pray for you strength and fulfilment.
I think you are a brave girl.. Thank you for your video.. I also have a stomach & colon that don’t work.. I ended up having surgery to fix a hole in colon, after the surgery something went wrong in my throat .. It closed up to size of small iv.. None of the doctors have been able to figure out how to fix it.. Because where it happened in my throat. I now also have feeding tube to help..But I can understand how everything evolves around food.. I done told everyone that when we get together for the holidays don’t feel sorry about eating. I also stay sick at my stomach food is not the first thing you think of.. Thanks again God bless you.. You helped me on my journey of this new life.. But as I always say God can still heal and he’s helping me through this journey of my life.. I can have a long life without eating.. I can enjoy my children and grandchildren..
I have gastroparesis too! (And EDS) I take Movicol though and it really helps me. I still feel really ill after eating but movicol means at least it comes out! I’m so glad I haven’t needed a feeding tube.
Thank you for sharing so openly and genuinely with us! We by no means deserve or need any explanation, but I so appreciate your transparency. I suffer from digestive issues, nowhere near what you do, but people do often ask me why I eat things which I know will make me sick. And your explanation is what I wish I could articulate! Our lives revolve around food, and it's so hard to feel normal and have fun with family and friends without it. Plus we all have favorite foods why should we not be able to eat our favorite foods too! Thanks again for sharing with us all. Love you lots ❤️
I’m so thankful my GP isn’t as extreme as yours. You’re incredible and it’s always nice to know I’m not alone. We have some similar diagnoses. My main ones are GP, dysautonomia, vestibular migraines, fructose malabsorption, and Hashimoto’s thyroiditis.
I live off of zofran, if I didn’t have that I can only imagine how bad I’d be. Sometimes it doesn’t even work for me which is the worst because I have no warning. The last time it happened I had passed out right before and my mom barely got me a bucket in time. Like I said, I’m so thankful I’m not to your extent and knowing you can handle it really helps inspire me to know I can get through it too.
Food seriously does have a much greater impact on our life than most think, like you said! My father was diagnosed with ALS about a year and a half ago, and can't eat or drink anything anymore, as he's lost his ability to swallow... this means he also gets his nutrition through a feeding tube and it's been incredibly hard for my mom sister and I to grasp how he must feel not eating or drinking ANYTHING he enjoyed before. We think at this point he's gotten used to it, but its incredibly hard to witness, and WOW has it made us appreciate our ability to eat and enjoy food... much love from Rome x
I love your videos Amy! I seriously binge your vlogs all day! ❤️ You are so funny and have such a great personality, I’ll always watch your videos as long as you post. Take care! Xoxo
I am so glad I found your video! I am in the hospital but I leave in 2 days, I have a hickman port and I'm on TPN.. I fear that I will never eat again. If I eat or drink, I get sick an hour or so later. I just got a gastric stimulator about a week ago... But it has not began to work as of yet, the drs are not sure it will. Watching your video gives me some hope, maybe Someday I'll be able to eat something and knowing that there is an option to drain, honestly makes me smile. I hate being nauseated and puking, it is painful, but I miss the taste of food. Thank you for making this video!
The medicine you use to help with nausea is the same I use! I have a super sensitive stomach. Most acidic or greasy foods make me feel sick to my stomach and I hate throwing up. Usually the medicine makes me kind of sleepy as well and I wake up feeling much better! I also have some pretty bad acid reflex, so sometimes the medicine is really good for just making me feel better. I really relate to not getting to eat the kinds of food you want to. Obviously mine isn't as severe as yours, but I can't have spicy food or super acidic fruits and stuff. Greasy food gets me, as well as super rich foods. I feel like often I have to eat a bland diet most days, but sometimes I just really want to splurge and eat something I know I shouldn't just because...I want to! I know it will suck later, but sometimes it's just worth it! Don't ever let comments or negative thoughts stop you from enjoying things that you should get to enjoy! p.s I love mash potatoes, very good choice!!!!
This broke my heart watching what you have to go through everyday. Food is such a social thing and not being able to do it would be indescribable. And i don't know why people would wonder why you "do what you do" as your still human, humans are meant to eat to survive and taking that motion away of eating and enjoying somthing is just terrible 😥 your so god dam strong for living through this. Keep fighting. Sending love from Brisbane xx.
They probably told her what types of food she can eat. If she can't drain it she throws it up, as explained in the part where she talked about eating before she got a tube to drain
Eating can be a very social thing. There's absolutely nothing wrong with wanting to taste things. You only live life once, and if you want to eat what you can then who's to blame you? Keep your positive spirits, thanks for being inspiring.
My Aunt has a paralyzed stomach and intestinal tract from scleroderma. Thank you for making this informational video! Not a lot of people seem to know about these health issues.
I’m a nurse-and “take it or leave it”-but I just thought I would mention that with treating hypos, you are probably not absorbing too much if anything from your gums-Im fairly sure what would probably be happening is that the sugary saliva is moving to the lining of your mouth, or under your tongue-where you would be mostly absorbing what can be absorbed in the mouth/oesophagus. You mainly absorb sugar through the mucous membranes of your mouth. Mucous membranes are basically the lining of your mouth (in effect, everything else in your mouth other than your teeth, gums and tongue). Under your tongue or on the inside of your cheeks (buccal mucosa) are probably the best 2 spots in the mouth to absorb meds/sugar/what can be absorbed orally-so you could sit a sour patch or a hard candy/lolly (a really good option for treating a hypo if not using a sugary drink (with/followed by a long acting carb) which is recommended for most with a normal gastrointestinal system) in your mouth between your teeth/cheek-and gently suck/allow the sugar to absorb that way. You will probably find you will get the same, if not a better/quicker result treating the hypo than rubbing the sour patch against your teeth and gums. It’s been a long time since I’ve had sour patch, but from memory, those things are coated in sugar/sour stuff (I can’t remember which one) which would be abrasive to your teeth and gums. This comment is in no way any nastiness/hate/negativity-and I’m not trying to tell you what to do-just trying to help by giving u info about the science/evidence based knowledge!
I can understand to a point. I have a very mild form of gastroparesis it limits what I can eat to a large degree but not to this point. I am so sorry that you have to deal with this everyday. It is very hard to be around others who want to eat something specific but have to change what they are going to eat for you. You are so brave thank you for putting this out.
I have a question! How long do you normally have between eating say a burger, and then throwing up from it? And, awesome videos you've opened my mind up to many things. Thanks for that.
I thank god so much that I recently got to start eating food again. I thought that I would NEVER get to enjoy food anymore because I had a very SEVERE case of gastroparesis last April due to an allergic reaction to anesthesia and diabetes. I gained all my weight back a couple months ago and the G/J tube came out on it's own. The opening where the tube was closed up FAST. I went to my GI doctor and she checked the area, And it healed up quickly on it's own. She said it would be fine! I am enjoying life again!
i had a mickey/g-tube when i was 3-12 because i just refused to eat and my blood sugar would just plummet. it's very comforting to see someone else with the same thing. thank you for your videos and experiences shared.
I get it. My lil sis has a feeding tube but she still likes to have a taest of her favorite foods from time to time. She doesnt have a problem with her tummy she just uses to much calories up trying to eat that you cant physicaly give her enouph for her to gain weight and she was sickly skinny when we got her the feeding tube. Imagine thoes 10,000 calorie eating challenges. That was her but she couldnt gain weight. Now shes almost 100 lbs and doing great!
Hi my name is Flavio Lariz and I. A dialysis patient and I know how it feels to only be allowed to eat certain things and I also throw up if I eat the wrong things. Love how positive you are. Keep doing a good job I'm happy for u. ✌️👏❤️❤️❤️❤️❤️❤️ us warriors have to stick together.
I am going to use this video to show my friends and family! I am GJ tube dependent, not TPN but I eat the same kinds of things and have the same struggles. Thank you so much for producing this video so I can better explain it to the people in my life who harshly judge my choices. At the end of the day, I'm an adult. I can make the decision to eat something knowing the consequence will be vomiting. I wish you all the best in your recovery and hopefully you get weened off TPN soon!!
I completely understand why you feel the need to eat, my favorite foods are salads and beef. In the last year they don't seem to be worth the inflammation factor/ constipation or heartburn. So if I can't stop thinking about a steak for instance I will have small portion of burger since texture of meat is softer. It still doesn't help inflammation but it solves the craving for many more months. Btw saw your IG post that guy can go suck an egg. If you want to have nothing on but a bikini showing a catheter and Hickman and tube site what the hell business is it of his. I realize you are a UA-camr but it shouldn't open you up to such horrific criticism all the time. As always love ❤️ to you and Tom. Hope you realize that you are precious and anyone who thinks different is an idiot
I related so much to eating when you shouldn’t. My boyfriend gets so mad because I eat, but the reality is that NOT being able to is absolutely awful. I’m in the process of getting a tube and even ensure doesn’t stay down. Your videos make me not feel so alone. 💖
Love your videos....I also have severe GP, EDS among so many other conditions. I have been sick since age 16 ( now almost 35). Thank you for bringing awareness and showing our daily reality of living with a feeding tube and living with this truly awful condition. Sending love from Canada.
though I don't have gastroparesis, (but other very restricting Gastro issues) I completly understand what you mean about food being such an integral part of life and social life. I miss being able to eat meals at restaurants, or with my friends and my family so I can't even imagine how you feel getting so ill no matter what substance you eat, and it makes me thankful that I still have the limited options I do and I also am just really inspired to get out of bed and try to do things whenever I watch your channel and you just always lighten my mood so thank you for that (:
Omg those popsicles remind me of the orange dream sickles they are sooo good. Literally my guilty pleasure. I pretty much eat them for breakfast lunch and dinner aside from my feed lmfao. I have my days when I "eat" tons of snacks. And then I'll go days without oral intake
Thank you so much for sharing your story and being so open🥰 it has helped me tremendously with this new diagnosis. It's tough to accept right now, It only been 3 days for me, three painful days and I can't imagine enduring this for the rest of my life.
Amy, you are very inspiring. Today I was feeling down about having to do ISC but after hearing some of your story I feel more able to cope with my daily routine. Thanks very much for sharing your life with the world. Wishing you lots of strength.
Honestly I don’t know how I came across your videos but they make me sad I just lost my grandma to cancer and she had a drainage like yours and I feel like the doctors failed her ! Her stomach was also paralyzed and they never ever offered any of this to her I feel like if I came across your videos earlier she still would of been alive 😪 I took car of her and did lots of things you do on your videos you’re blessed and I feel blessed being here 🙏🏼 you now have a new subscriber !
You have helped me so much! Just finding someone who suffers the way I do is fantastic! And your vids help me manage mine better. Thank you for sharing.
Amy, you only have one life. There are no do overs. Draining is your normal. It has to be very hard to want to taste something and not be able to. I'm so glad you have a tube that allows you to drain and be able to taste things again. To sit down with family and friends and have tea and even if it's just some mashed potatoes and a smoothie at Christmas. You get to partake in the sociality of things and that's wonderful!! You keep doing you girl! Other people dont have to understand or approve because this is your life and your normal. One life, do what makes you happy!
Well technically we will also live in either Heaven or Hell when we die. It all depends on whether or not we are Born-Again Christians or not. Now in order to become a Born-Again CHRISTIAN what you must do first thing happens to be: pray to Jesus Christ, second: ask HIM for forgiveness, and then, third: follow HIS teachings of both The New Testament as well as The Ten Commandments.
Kaitlyn McKessy u had such a great message and then u had try and convert her😶
Kaitlyn McKessy this paragraph was very positive and you made it negative. Not everyone will believe in religion and maybe you should live your one life too.
Kaitlyn McKessy maybe not everyone wants to be religious but you do you
@@kaitlynmckessy4250 EW
I understand why you eat. I have lost my ability to taste food after a small stroke. I really miss the flavor of food. It must be doubly awful to be physically ill after you eat.
I had 2 strokes while in the hospital. I did not loose the ability to taste, but i noticed the taste of food has become too strong now.
Thank goodness i am not completely paralyzed but i started having seizures, which has added to the shock my body has to go thru
I’m sorry u had to deal with that.. health problems really suck..
I was diagnosed last year with a cancer n had to take chemo tablets for the rest of my life which completely changed the taste of food (not even disappeared) for me so I stopped eating for a while and then just kinda ate to survive. I had to stop my meds for a short period before resuming again I literally would binge on a LOT OF FOODS I would just eat untill I feel sick and still eat, most of the times I end up vomiting but just the thought that this is the last time I’ll taste real food pushed me into eating more.. it’s smth we never thought we were blessed with back when we were healthy!
@@rayenelarguet3350 ❤❤
Can you still smell? Have you ever tried 'blowing' your nose while chewing something?
My Mum was born without a sense of smell and so food is a totally different experience for her. Mum prefers really bland food because she can't taste the flavour of spices, she just gets the heat. When we shop sometimes she'll see me smelling fruit and she'll be like why are you doing that? Also when she asks what do strawberries smell like or anything else how do you answer? I now try to keep my descriptions to things like sweet or sour something that my Mum can understand.
I never questioned why you would eat even if you had to drain. I completely understand why you’d still want to eat! It’s a way humans bond together so it’s 100% understandable
it's also pleasurable to taste and feel food
If people say “why do you eat and drain” that’s just like saying why do you eat and shit. Honestly some people 🤦🏼♀️
I want to said the same
CatsCradle22 i agree with you. Some may be young or just unfamiliar. Love is always the way!
I disagree some people are curious get your facts first
To Amy that’s her normal so people judging her for something that is normal for her just like shitting she just empty’s her tube instead that’s just my view xxx
Because she can’t process it. She eats because she wants to eat something and that’s ok. You should argument why people eat junk food instead of healthy food. They eat it bc it tastes good and that’s also mainly the reason why Amy eats. Imagine someone comes to you and says that you’re not able to eat nothing anymore. You’d be craving so hard!
Rip beautiful Amy. Fly high gorgeous girl. Your impact and legacy left behind will be felt forever and I’m so grateful we still have these old videos to watch to still hear your wonderful words. We love you.
Rip Amy we all miss you now and for always the world has truly lost a good friend indeed fly high with the angles amy sorry to hear and for your loss tom and her family
Currently rewatching her videos. I feel like I've lost a good friend. I'm so sorry to Tom and her family for their loss, she was such a beautiful soul 😭
I always appreciate so much that you either don’t show vomit, or if you do, you warn first. I have struggled with emetophobia all my life and even though I personally have made a lot of progress over the past year and could probably handle a video depicting it, I know there would have been a point where I absolutely would have needed to be warned. Not enough people know about or take emetophobia seriously and it makes me happy that you do💕
Charli Ward I have really bad emitophobia and always get super stressed while watching these kinds of videos. Warning for me are so important because it keeps me from having a bad panic attack. (I skip over parts with vomit) my panic attacks involve nausea to do it all builds up to the point where I have passed out.
Cleo my panic attacks make me nauseous too and it just fuels more anxiety, it just spirals. I have passed out and vomited from severe panic attacks on a couple occasions. I don’t have them as often as I used to, thankfully.
Charli Ward it's so annoying because I'm in school and during health class I had a full blown panic attack because my teacher forgot to warn the class that there was going to be someone vomiting in the video. My fear has only gotten worse and it's exhausting because nothing I do helps. I haven't been to a psychiatrist so I don't know if it's just a fear or if it's related to anxiety or something like that.
I struggle very badly as well, it always makes me feel better to see others that have this same fear :)
I have emetophobia also
I love that you try your best to live a “normal” life and do what you want regardless . I live with severe asthma so I know what it’s like to want to do things everyone else can but is difficult for you.
(Side note. I put normal in quotes because there’s no real definition of normal when it comes to different life styles)
I agree! I to suffer from a chronic illness, its called Hypoparathyroidism. Its a rare disease. Its a devastating disease that effects your calcium, magnesium,Vitamin D3 and iron. Having this disease causes tremendous fatigue, fast heart rate,kidney damage/failure, tingling, tetney and twitching. These r the few symptoms that makes living difficult. Now for me its extremely bad so I'm on a hormone replacement therapy. Its called forteo. Its original use was for older people with osteoporosis. But is now being used on patients like myself! Anyways having a chronic illness causes immense depression and severe anxiety! So I understand to a degree!☺
I also have asthma and my asthma is mild and when I get infections it can be hard sometimes and I have a respiratory infection right now which is really annoying .#amy strong #girl power
Dairy is bad for asthma
I've been re-watching her videos since last couple of days.
Can't believe she isn't with us now.
Did she die?
@@sofiatobyland6283 watch her recent video & read the description, she sadly passed away at the beginning of April.
🥺😪
Me too…heartbroken still! Her honesty gave me the nerve to face VEDS in all it’s vastness…thanks Amy…I know you made my life better!
Holy shit
You are my hero! I couldn’t do what you do every day hun. You must be a blessing to your family. I pray that god gives you the patience and guidance to live your life every day as happy and normal as possible!
Hi Amy...thank you so much for your videos. My 9 yr old son has GP & EDS...we are still learning to navigate thru his symptoms and pain but watching your videos gives me such hope that he can live a happy and fullfilled life even with his diagnosis.
I also get questioned why I drink if I have to go drain it immediately. I’m like “well I’m only human.” So happy you explained it to others that don’t understand why we do what we do. I also have a channel and if it’s okay I’d LOVE to make something similar to this 💜
Kristina Mathias yes go for it hun! I would love to watch it. I’ve just subscribed ❤️❤️
I always find myself rewatching these. Gosh I miss Amy's updates
Literally everything is food 😩 ‘want to meet for coffee?’ ‘Lunch tomorrow?’ Urgh. Nooooo.. I hate looking out of place so tend to just eat something and end up in agony and the nausea omg. Yuck.
Kaleena story of my life 😅
Yassss! And when you dont eat OTHER people will get uncomfortable... like Dude, I’m the one that is not eating, not you 😅😅 My sister does not want to go eat at a restaurant when we are shopping because i cant eat and I’m like; Uhmm Yeh but you need to eat... But she does not want to do it because she feels uncomfortable when I dont eat with her 😂🙈
Yes.. I have kids so I can avoid those awkward conversations because I focus on them eating. But I do still have moments that make me cringe. Hubby wants to go on a date but that also involves food. I don’t mind him eating, he’s gotta eat.. I just have a drink if I feel I can tolerate it and he’s fine with that.. but the looks you get when you don’t order 🙄
Kaleena yep! I’m always afraid they think i’m on this weird diet like the other Young skinny blond girls when I say I dont want any food. Nope, I just cant eat 😅
Uhhh I hate this . Especially when you are skinny and people tend to ask questions
I don't think you need to justify why you eat/drink when you know that you'll just end up draining it later, it's natural for us to all want food and it's great that you have a way to still enjoy it and not suffer as much consequences for it later! Life with chronic illness is really limiting, so you need to indulge in all the things that you can! ❤️also I notice that you drink a lot of tea, which is my current addiction so every time I watch your vlogs I always feel the need to go make another one!! ☕
I didn’t find this video boring. Very interesting actually. Thanks for sharing! X
*snorts* at people who critisise Amy for eating drainable foods. I was so, so happy for you when you got that tube and were able to eat & drain stuff like skittles, like, they'd been kicking you around not giving you that tube for MONTHS when they could have. Happy for you with a passion, you go ahead and eat that damn ice lolly, gurl
I'm glad that popped up in my recommendations because I never knew about this ! Thank you for spreading knowledge
omg how can someone judge you for the draining? Ive got stomach problems and fortunatelly my stomach still works but I cant eat a lot of stuff and its a real problem for me and people around sometimes. So I really understand you for doing that, Id do that too :D you are such a fighter, enjoy your life and dont feel bad for that. :)
I deal with a condition where I cannot always swallow food and it gets stuck in my entire esophagus. I sometimes only throw up the food in my esophagus, or it could be a 30-minute session of throwing up. I cannot enjoy a nice meal without worrying if I have to run to the bathroom. I know my condition isn't as bad, but it is miserable. I know what it feels like to struggle to eat. I also deal with stomach pains or constipation. Truly makes me miserable. But, you help me to know that you can only live your best with what you have and any life can be worth living for. Stay strong girl!
I don’t eat allot but I still gain weight and right now I have pneumonia which is hard too!!!! I love you both please don’t ever change
Hope you're doing better. I have hard pneumonia every year for the past 6 years. It is very hard
I have just done some research after noticing the video was 5 years old, and I found out that Amy passed away in 2021. She leaves behind an inspiring legacy. Belated condolences to all her family and friends. She helped inspire me with my much easier chronic condition and my life feels much lighter after watching her videos. Her light shines on.
Your accent is so British but so Australian at the same time and honestly it's the best one going. Your videos inspire me so much and literally love you and your UA-cam!x
I also have Gastroparesis, I can still eat some solid food, but mainly I stick to fluid, protein shakes, tea, water, etc. Im grateful that I can still eat to a point, but Im getting to where the pain, nausea, bloating etc afterwards is just not worth it. I'm so impressed and proud of you, you handle your medical needs with grace, maturity, and wisdom beyond your years.
She’s awesome! She’s so comfortable about telling us about her condition!
Your point about now realizing how much of an impact food has really hit me. I fought my interstitial cystitis diagnosis for so long and ate “forbidden” foods, only to suffer every time. I’m finally realizing that it just isn’t worth it to “cheat” and I have to stick to the diet. It’s hard and it’s isolating, and I really appreciate you making this kind of video ❤️
How do you feel after draining stuff from the tube ?
Also, have you ever tried to absorb sugar putting the gummy under your tounge? Sugar will be absorbed quicker
sugar's typically really bad for gastroparesis
@Andrea Wylie I do as well but I can't handle sugar at all :/ I never know what to do
Medicine is truly amazing. It baffles me how your stomach is paralysed yet you’re still able to eat etc! You’re doing great Amy! X
Sometimes I wish I had a tube to drain food when I screw up and eat something I’m not supposed to. But at the same time, I’m lucky to have a milder form of gastroparesis that so far hasn’t necessitated a tube. It’s true though, you never realize how much food impacts life until you can’t eat or you can’t eat certain things. This was my first holiday season with GP and it was awful. #EDSsquad
I get that too! "Aimee, why do you do this?" "Why do you eat something you know will make you vomit?" My answer is always "because that's my choice!" I love frosty fruits too! :)
The food thing about it is that u r able to be super healthy in the foods u eat if u can't taste them❤❤
i had a gastric sleeve surgery and I totally understand you, my recovery is almost like your daily life, but for me is just a matter of time, take care of yourself ❤️
So i understand why you eat and how you drain but i am curious does it hurt or feel weird when you drain
Mariah Macarthur nope! it should basically just feel like your stomach emptying quickly, kinda like when you're really full and you go poop and feel way better haha. if anything you might feel some bubbles in your stomach but it wouldn't hurt!
our stomachs naturally drain into our intestines anyway, so it's basically just helping her stomach do what it's unable to do, in a much faster way!
she said in another video its extremely painful
at least i think that’s what she said... sorry if i’m incorrect, i’m not her
Imagine having a plastic tube going through your skin that end up inside your stomach...
Just on this basis, how could you not feel weird about that?
It’s a thing humans have to have and it’s normal to want to eat and physically taste food. So you do what you choose to do. You have that right ♥️🙌🏼🙌🏼Great video 🤗
The whole “why do you eat and drain?” Question kinda reminds me of a question I get sometimes as an autistic person, which is “why do you try to socialize if it exhausts you so much?” My answer is just “because I’m human.” It may be tiring, but it’s fun and it’s a fundamental, fulfilling part of being a person.
❤️ RIP Amy, beautiful girl 😞, gone too soon
Omg 😭🙏 rest in peace to her beautiful Seoul
Thank you so much for sharing. This is the first video of yours that I have watched. My husband has been very ill for 7 years now. He is on 24 hour TPN and has gastroparesis and has a hole in his colon with 4 fistulas. He just got an iliostomi and we are struggling to find things he can eat. He hasn't eaten much for years now but is now eating a couple of bites a day. Your video helped us to not feel so alone. God bless you. Things can be really hard sometimes but never give up. We put our trust in God and He has never let us down. We have had so many miracles. I don't know why you have gastroparesis but I will watch more of your channel. Thanks again for sharing.
Amy...i just found your channel. My name is Ron and i suffer from Ulcerative Colitis and Gastroparesis (non.diabetic). I have been NPO for over 5 years now. My gastric system in now totally paralyzed so I have a surgically placed G/J Tube, and have been on TPN (had in excess of 7/8 different picc lines) during the worst parts. I dropped 75 lbs over the first 1.5 years...and have had multiple transfusions because of the bleeding ulcer issues...
Just wanted to introduce myself and to let you know that your not alone...
A few yrs ago I had c-diff which was horrible, it shut down part of my bowel. I just relived the feelings as you were talking about it. You are so strong and I totally understand why you eat. I started off with broth and smoothies then to mashed potatoes and acorn squash but after awhile nothing satisfied. When I was at 1 of many Dr visits they had finally diagnosed me and ended up giving me meds that made me feel great.. I went straight to a drive thru and ate sandwich and mozz sticks...lol. Oh that was a bad night but kind of worth it...I'm all better now which I'm very thankful for, but your video made me think back to that time in my life and I'm amazed how strong you are. You are happy and look healthy. Keep up the good work. Never doubt yourself..if it works for you than do it!!
That is the hardest thing to explain how gasstropariss is. I love your sharing your story it helps me so much. Ive been dealing with it for almost a year now snd the throwing up is horrible. Im going for a gastric pacemaker as soon ad my insurance aproves it.
The not wanting to eat solids thing is exactly why I have an abundance of lemonade mix in the pantry and I freeze it about four times a day and “eat” the ice. It’s my favorite thing on the planet right now that doesn’t have too much potassium/phos for me and doesn’t raise my blood pressure too much and settles my stomach. (I’m on dialysis) I don’t exactly know what you’re going through but I did have a central line for a long time when I first started hemo. Then I moved to peritoneal dialysis and had that catheter in my stomach. As a young girl having to do my treatments I remember setting it up like you have to with a sterile connection and everything and I got infections frequently and also frequent hospital stays. You are so strong and it’s nice to watch your videos bc that’s a little like what I went through too. Now I have a fistula and am back on hemo dilaysis 3 times a week. They both have their pros and cons but for now the freedom i have with having off days and not tons and tons of supplies are sort of working for me right now. It’s hard to travel but what can you do lol. I hope things continue to get easier for you as people start to learn more and more with the medical aspect of things 💕
Image being in a situation where you have to explain to people why you "choose to eat food".
I do this to most of my family who knows I get sick on everything I eat 🤷🏼♀️
😂
I am so glad you explained to people why you still eat with GP
I do the same thing and people always get so confused! A lot of the time I still throw up after eating and I get more pain, but as you said life is so depressing with a chronic illness as it is and is considerably more miserable without food!!! Thank you so much for spreading awareness!!!!!!
Fly High Amy, it’s my first time here in your channel and you made me realized that life is beautiful, you inspired me to fight my illness. Gone to Soon Lady but you left with us your legacy. Rest In Peace Amy
My mom has gastroparesis. It’s been a real struggle for years. Lots of hospital stays. You are definitely very strong and I send you so much positivity.
Thank you for this, I am now on TPN and about to get a tube in my stomach and you are giving me confidence and encouragement to continue to do it. I was scared but you made it a lot easier for me to choose. Thank you!
You are such an inspiration! So upbeat and positive. I hope no one says anything about what you eat. You eat what you want! No one can ever understand what you go through and you should do what makes you happy! God bless you !!!!
You're the FIRST person that I know to put ketchup into mashed potatoes and I love you for it lol. It's SO GOOD.
Samantha Kelley it’s sooo good i do it too!!😂😂
I do too I love potatoes and ketchup
I guess that's why people have ketchup wit chips/fries
Samantha Kelley WHAT I DO IT
I always mix tomato sauce into my mash potato too 😂
I just found this channel and I’ve got to say that it is so refreshing to see a person living their “normal” life which is completely “abnormal” and simply living. It’s a lovely reminder that I’m not alone with my weird diets and “food evacuation techniques”.
I just found her as well, and I am saddened that she’s deceased 😔😔♥️
I remember I was at the airport and I got a coffee and immediately needed to drain it out. So yeah, I was draining in a gross airport public restroom. That has to be the worst place I've had to drain in☠️
@Caramel Cupcake she was probably catching a flight?
I was born with a jaw deformity that caused it to be really difficult for me to chew and eat. I’ve had 4 jaw surgeries and been unable to eat. and I remember sitting at thanksgiving dinner for 2 separate years poking a syringe through my teeth to eat my dinner. and I was devastated 😩😩 being deprived of food is so heartbreaking I feel for you so much. you have a lot of self control to not eat more heavy things 😅 not eating can drive someone crazy
Tom, I know how hard it is for you. Amy was beautiful, intelligent, and helped young and old how to live with a disability. We need to hear from you, we are grieving too. I feel like I lost a grandchild. I am a seventy-one-year-old grandma of 10. I loved you two and still love you, Tom......please talk to us. Heaven has a true Angel. I hope you are a believer 🙏🦋
Just got my first feeding tube in December due to esophageal cancer. Your videos have helped tremendously in me dealing with my illness! Although we are very different, I can relate to what you are going through! Thank you so much!
I know this might not work for you, but I make homemade soups and stews and purée them so that it’s drainable and easy to digest. Just a thought I thought I should share!
And I thought my life was hard living with Lupus & Fibromyalgia. Chronic pain and fatigue.
Your so brave because your life is consumed of keeping your self alive and being positive about it all shows how mature you are ♡
If I was in your situation I'd do what you do, I can't imagine not being able to eat, you handle it so well, your totally inspirational, might be wierd but I just watch your videos because I enjoy them and I'm interested but I'm not in your situation.
I have had gastric bypass with terrible complications. Do not have a paralyzed stomach,but have to eat things that drain. I so get it Amy! Think about it,most all social encounters revolve around food or drink. We are human,humans are social beings....food is always there! LOVE LOVE LOVE your channel! ❤️from Stone Mountain,Ga. XO
I'm so glad you can snack on some things! It's so natural!
You're a superstar, Amy! You really are! I admire your strength and lighthearted attitude towards dealing with such difficulties in your life!
I also have EDS type 3, as well as systemic lupus, rheumatoid arthritis, hypothyroidism, epilepsy , spinal problems, and adhesions that cause massive chronic pain. So, needless to say- I know a bit about taking a ton of medication (currently on 22 different medications, several times a day as well as injections) and dealing with chronic conditions since a young age (started at 9) UGH! Right?
I still find that a really good sense of humor (sometimes a bit of a twisted one at that..lol) is one of the BEST coping mechanisms to have! Am I right?
You are absolutely beautiful, and i'm learning so much from watching your videos! You're so articulate! Please keep making them- and I'll keep watching them!
I wish you and Tom all the best, everyday! I'll keep you in my thoughts, in hopes that someday soon, you will be able to eat and digest food through your body once again! ♡
You make me feel strong and positive toward my life as well. You are literally the strongest person I've ever seen. So proud of you and tons of love to you💞
Wowza… talk about eye-opening. Had no idea this kind of procedure, "draining," existed as a routine part of a person's life. Amy, you certainly have an onerous life and face more adversity than most. You pull this off with more grace than I ever could, and I pray for you strength and fulfilment.
What a beautiful soul. Hard to believe shes not with us anymore. Rest in peace honey.
I think you are a brave girl.. Thank you for your video.. I also have a stomach & colon that don’t work.. I ended up having surgery to fix a hole in colon, after the surgery something went wrong in my throat .. It closed up to size of small iv.. None of the doctors have been able to figure out how to fix it.. Because where it happened in my throat. I now also have feeding tube to help..But I can understand how everything evolves around food.. I done told everyone that when we get together for the holidays don’t feel sorry about eating. I also stay sick at my stomach food is not the first thing you think of.. Thanks again God bless you.. You helped me on my journey of this new life.. But as I always say God can still heal and he’s helping me through this journey of my life.. I can have a long life without eating.. I can enjoy my children and grandchildren..
I have gastroparesis too! (And EDS)
I take Movicol though and it really helps me. I still feel really ill after eating but movicol means at least it comes out! I’m so glad I haven’t needed a feeding tube.
Thank you for sharing so openly and genuinely with us! We by no means deserve or need any explanation, but I so appreciate your transparency. I suffer from digestive issues, nowhere near what you do, but people do often ask me why I eat things which I know will make me sick. And your explanation is what I wish I could articulate! Our lives revolve around food, and it's so hard to feel normal and have fun with family and friends without it. Plus we all have favorite foods why should we not be able to eat our favorite foods too! Thanks again for sharing with us all. Love you lots ❤️
I’m so thankful my GP isn’t as extreme as yours. You’re incredible and it’s always nice to know I’m not alone. We have some similar diagnoses. My main ones are GP, dysautonomia, vestibular migraines, fructose malabsorption, and Hashimoto’s thyroiditis.
I live off of zofran, if I didn’t have that I can only imagine how bad I’d be. Sometimes it doesn’t even work for me which is the worst because I have no warning. The last time it happened I had passed out right before and my mom barely got me a bucket in time. Like I said, I’m so thankful I’m not to your extent and knowing you can handle it really helps inspire me to know I can get through it too.
Food seriously does have a much greater impact on our life than most think, like you said! My father was diagnosed with ALS about a year and a half ago, and can't eat or drink anything anymore, as he's lost his ability to swallow... this means he also gets his nutrition through a feeding tube and it's been incredibly hard for my mom sister and I to grasp how he must feel not eating or drinking ANYTHING he enjoyed before. We think at this point he's gotten used to it, but its incredibly hard to witness, and WOW has it made us appreciate our ability to eat and enjoy food... much love from Rome x
I’m so sorry for you and your family. ❤️
I love your videos Amy! I seriously binge your vlogs all day! ❤️ You are so funny and have such a great personality, I’ll always watch your videos as long as you post. Take care! Xoxo
lol fml thank you so much ❤️❤️
Amy Lee Fisher thanks for replying to both my comments 😱 I’m honoured❤️❤️❤️
I am so glad I found your video! I am in the hospital but I leave in 2 days, I have a hickman port and I'm on TPN.. I fear that I will never eat again. If I eat or drink, I get sick an hour or so later. I just got a gastric stimulator about a week ago... But it has not began to work as of yet, the drs are not sure it will. Watching your video gives me some hope, maybe Someday I'll be able to eat something and knowing that there is an option to drain, honestly makes me smile. I hate being nauseated and puking, it is painful, but I miss the taste of food. Thank you for making this video!
Notification Sqaudddd! 💁🏽♀️💁🏽♀️💁🏽♀️
Amy Lee Fisher Hi amy you superstar😃😃😃
Hey
I've learned a lot about gastroparisis watching your videos
Yas love your videos bb!
❤️ you
The medicine you use to help with nausea is the same I use! I have a super sensitive stomach. Most acidic or greasy foods make me feel sick to my stomach and I hate throwing up. Usually the medicine makes me kind of sleepy as well and I wake up feeling much better! I also have some pretty bad acid reflex, so sometimes the medicine is really good for just making me feel better.
I really relate to not getting to eat the kinds of food you want to. Obviously mine isn't as severe as yours, but I can't have spicy food or super acidic fruits and stuff. Greasy food gets me, as well as super rich foods. I feel like often I have to eat a bland diet most days, but sometimes I just really want to splurge and eat something I know I shouldn't just because...I want to! I know it will suck later, but sometimes it's just worth it! Don't ever let comments or negative thoughts stop you from enjoying things that you should get to enjoy!
p.s I love mash potatoes, very good choice!!!!
I never really thought how much eating has become a social construct in addition to a life necessity.
what are you talking about?
This broke my heart watching what you have to go through everyday. Food is such a social thing and not being able to do it would be indescribable. And i don't know why people would wonder why you "do what you do" as your still human, humans are meant to eat to survive and taking that motion away of eating and enjoying somthing is just terrible 😥 your so god dam strong for living through this. Keep fighting. Sending love from Brisbane xx.
How do you know if something is drainable? And what happens if you have something that isn’t drainable?
I'm guessing she just throws it up.
They probably told her what types of food she can eat. If she can't drain it she throws it up, as explained in the part where she talked about eating before she got a tube to drain
Probably takes lots of trial and error to find out whats drainable and not
Trial and error. And yep it comes up later on x
Eating can be a very social thing. There's absolutely nothing wrong with wanting to taste things. You only live life once, and if you want to eat what you can then who's to blame you? Keep your positive spirits, thanks for being inspiring.
My Aunt has a paralyzed stomach and intestinal tract from scleroderma. Thank you for making this informational video! Not a lot of people seem to know about these health issues.
You poor dear, I cried watching this , your so brave! I just love you! Stay strong!
I’m a nurse-and “take it or leave it”-but I just thought I would mention that with treating hypos, you are probably not absorbing too much if anything from your gums-Im fairly sure what would probably be happening is that the sugary saliva is moving to the lining of your mouth, or under your tongue-where you would be mostly absorbing what can be absorbed in the mouth/oesophagus. You mainly absorb sugar through the mucous membranes of your mouth. Mucous membranes are basically the lining of your mouth (in effect, everything else in your mouth other than your teeth, gums and tongue). Under your tongue or on the inside of your cheeks (buccal mucosa) are probably the best 2 spots in the mouth to absorb meds/sugar/what can be absorbed orally-so you could sit a sour patch or a hard candy/lolly (a really good option for treating a hypo if not using a sugary drink (with/followed by a long acting carb) which is recommended for most with a normal gastrointestinal system) in your mouth between your teeth/cheek-and gently suck/allow the sugar to absorb that way. You will probably find you will get the same, if not a better/quicker result treating the hypo than rubbing the sour patch against your teeth and gums. It’s been a long time since I’ve had sour patch, but from memory, those things are coated in sugar/sour stuff (I can’t remember which one) which would be abrasive to your teeth and gums. This comment is in no way any nastiness/hate/negativity-and I’m not trying to tell you what to do-just trying to help by giving u info about the science/evidence based knowledge!
rachael james thank you for letting me know! I will definitely give this a go xx
I can understand to a point. I have a very mild form of gastroparesis it limits what I can eat to a large degree but not to this point. I am so sorry that you have to deal with this everyday. It is very hard to be around others who want to eat something specific but have to change what they are going to eat for you. You are so brave thank you for putting this out.
I have a question! How long do you normally have between eating say a burger, and then throwing up from it? And, awesome videos you've opened my mind up to many things. Thanks for that.
I thank god so much that I recently got to start eating food again. I thought that I would NEVER get to enjoy food anymore because I had a very SEVERE case of gastroparesis last April due to an allergic reaction to anesthesia and diabetes. I gained all my weight back a couple months ago and the G/J tube came out on it's own. The opening where the tube was closed up FAST. I went to my GI doctor and she checked the area, And it healed up quickly on it's own. She said it would be fine! I am enjoying life again!
Um how cool that you can push your stomach muscles and can increase the flow of the drainage!!! Hahaha
mickey cahill ahaha 😂😂😂
i had a mickey/g-tube when i was 3-12 because i just refused to eat and my blood sugar would just plummet. it's very comforting to see someone else with the same thing. thank you for your videos and experiences shared.
I get it. My lil sis has a feeding tube but she still likes to have a taest of her favorite foods from time to time. She doesnt have a problem with her tummy she just uses to much calories up trying to eat that you cant physicaly give her enouph for her to gain weight and she was sickly skinny when we got her the feeding tube. Imagine thoes 10,000 calorie eating challenges. That was her but she couldnt gain weight. Now shes almost 100 lbs and doing great!
Hi my name is Flavio Lariz and I. A dialysis patient and I know how it feels to only be allowed to eat certain things and I also throw up if I eat the wrong things. Love how positive you are. Keep doing a good job I'm happy for u. ✌️👏❤️❤️❤️❤️❤️❤️ us warriors have to stick together.
It can't be easy at all to have to drain everything that you put into your digestive system.
I am going to use this video to show my friends and family! I am GJ tube dependent, not TPN but I eat the same kinds of things and have the same struggles. Thank you so much for producing this video so I can better explain it to the people in my life who harshly judge my choices. At the end of the day, I'm an adult. I can make the decision to eat something knowing the consequence will be vomiting. I wish you all the best in your recovery and hopefully you get weened off TPN soon!!
I completely understand why you feel the need to eat, my favorite foods are salads and beef. In the last year they don't seem to be worth the inflammation factor/ constipation or heartburn. So if I can't stop thinking about a steak for instance I will have small portion of burger since texture of meat is softer. It still doesn't help inflammation but it solves the craving for many more months. Btw saw your IG post that guy can go suck an egg. If you want to have nothing on but a bikini showing a catheter and Hickman and tube site what the hell business is it of his. I realize you are a UA-camr but it shouldn't open you up to such horrific criticism all the time.
As always love ❤️ to you and Tom. Hope you realize that you are precious and anyone who thinks different is an idiot
I related so much to eating when you shouldn’t. My boyfriend gets so mad because I eat, but the reality is that NOT being able to is absolutely awful. I’m in the process of getting a tube and even ensure doesn’t stay down. Your videos make me not feel so alone. 💖
Super nosey medical question: how do you manage your acid/base (H+/OH-) balance with the draining?
Love your videos....I also have severe GP, EDS among so many other conditions. I have been sick since age 16 ( now almost 35). Thank you for bringing awareness and showing our daily reality of living with a feeding tube and living with this truly awful condition. Sending love from Canada.
I'm getting a jejunostomy tube in about a month, and watching your videos has been extremely helpful. Thank you so much for sharing
though I don't have gastroparesis, (but other very restricting Gastro issues) I completly understand what you mean about food being such an integral part of life and social life. I miss being able to eat meals at restaurants, or with my friends and my family so I can't even imagine how you feel getting so ill no matter what substance you eat, and it makes me thankful that I still have the limited options I do and I also am just really inspired to get out of bed and try to do things whenever I watch your channel and you just always lighten my mood so thank you for that (:
Omg those popsicles remind me of the orange dream sickles they are sooo good. Literally my guilty pleasure. I pretty much eat them for breakfast lunch and dinner aside from my feed lmfao. I have my days when I "eat" tons of snacks. And then I'll go days without oral intake
Thank you so much for sharing your story and being so open🥰 it has helped me tremendously with this new diagnosis. It's tough to accept right now, It only been 3 days for me, three painful days and I can't imagine enduring this for the rest of my life.
This is where an everlasting gobbstopper would be nice lol
Amy, you are very inspiring. Today I was feeling down about having to do ISC but after hearing some of your story I feel more able to cope with my daily routine. Thanks very much for sharing your life with the world. Wishing you lots of strength.
I PUT KETCHUP ON MY MASHED POTATOES TOO!!
Honestly I don’t know how I came across your videos but they make me sad I just lost my grandma to cancer and she had a drainage like yours and I feel like the doctors failed her ! Her stomach was also paralyzed and they never ever offered any of this to her I feel like if I came across your videos earlier she still would of been alive 😪 I took car of her and did lots of things you do on your videos you’re blessed and I feel blessed being here 🙏🏼 you now have a new subscriber !
this video made me want a popsicle, so i got one and actually clinked it against my screen when you said cheers lol
Kate Connolly 😂
You have helped me so much! Just finding someone who suffers the way I do is fantastic! And your vids help me manage mine better. Thank you for sharing.