I had a gastroenterologist tell me that because I hadn’t lost more than 10 lbs that I couldn’t be having the symptoms I was, then I finally got to 10+ lbs weight loss and he still was like well you just need to find the right foods and medicine combo...after I had a colonoscopy and ended up in the hospital from horrible nausea and vomiting, from dehydration suddenly people were a little more willing to listen....funny how it takes such extremes for people to listen, glad I finally found an EDS doc who listens and has helped me get back to a healthy state 😍
@5:20 I made an eating diary for a year to see which foods work best and they changed over time. There were foods I was able to eat for months and then out of nowhere they started making me sick. It’s so random.
Yes! I totally agree! The other day I was at a restaurant hooked up to my feeding pump. I went to the restaurant because my parents and my siblings were going and I wanted to hang out with them even though I couldn't eat anything. This random woman comes up to me and asks my Dad why I have a feeding tube if I don't need it. I tell her that I do need it because I have gastrparisis. She tells me that I am a attention seeking liar and that GP does not exist. She then rolls her eyes and walks off.
@@IzzyKDNA yes, I agree that it doesn't make any sense that she would say that. I didn't let it bother me, I just shared it so hopefully nobody would have the same experience.
That's disgusting and so cruel 😠 of her that she did this. Some people have more problems than others and it appears she's spreading hers all over the place. Spoons to you.
I am newly diagnosed and I have had so many people already suggest herbs, vitamins, clean eating. I just want to eat ANYTHING. I am on liquids and have been for three months and even they make me nauseated.
Any ideas on why when doctors don’t have enough knowledge to know what’s really going on, they just say go to PT and then when you get worse from overdoing it or doing the wrong exercises, they say you’re not trying hard enough and blame you. Sorry for the rant but the journey has been very frustrating.
Diagnosis misconceptions would be cool! Things like about how all diagnosis are bad, how its easy to get a diagnosis, that it will solve all your problems ect.
Maybe make a video about the misconception that disabled people are always happy to explain to strangers why they're disabled or why they're in a wheelchair. It's not my job to educate your kids when I'm at the grocery store and feel like crying from stress and pain
I go see my gastroenterologist tomorrow to discuss getting new testing/meds. Your videos have really helped me better understand GP and EDS. Thanks for all you do!!
I am the perfect example I’m 6’ tall 265 lbs but I also had something like 65% retention at 4 hours on my gastric emptying study. It makes absolutely no sense. My gastroenterologist says he see’s it all the time of people overweight when he knows they’re calorie deficient.
I feel like it's helps people to understand that it's easy to gain weight when all you can eat are simple carbs. People judge what I eat like I'm only eating junk "eat a vegetable for crying out loud". Easy for them to say. LOL Everything they tell you to eat to lose weight I can't eat. I feel like the only way I could loose weight would be to literally not eat or drink at all. Which I certainly could choose to do but it seems less healthy than what I do now.
For me, it was up and down Weight all my life, then massive weight loss 5 years ago- 130 pounds over 8 months time. Which set me in the road to specialists and finally finally getting an eds dx ultimately. The gastroparesus has continued to be horrendous and my weight stays 98-105 mast cell and dairy/gluten and multiple allergies haven’t helped.
Ok i LOVE this girl. Beyond strong. Legit definition of when life gives you lemons. Instead of letting all her health conditions etc make her upset she takes in everything and shares it with others. Thats the best thing for someone newly diagnosed like myself . Thnks for all you do sis
Omg. I remember when I went to camp as a counselor for kids with Crohn’s and another counselor had the nerve to ask me, “why are you so thin?! I have Crohn’s too and I’m not a stick figure.” I almost cried. People are so ignorant and cruel sometimes.
I gain weight very easily and struggle to lose weight. I think there are 3 main reasons for this 1) fat bothers me and fiber bothers me so I tend to eat too many simple carbs and sugary foods. I can eat a package of lower fat cookies just fine, but will feel sick for hours if I eat an apple. 2) I mistake nausea for hunger. I think this is because I suffered through 2 pregnancies where I was sick 24/7 the entire 9 months. And while pregnant, I had more nausea on an empty stomach. And so now, when I have nausea, my instinct is to eat. And 3) I don't throw up. I used to, until I identified my main trigger as gluten and cut it out of my diet. I still have near constant nausea, I just don't throw up anymore. And I'm definitely not gonna claim going gluten free will help everyone. I have a number of serious GI issues and I very likely have celiac as well. My doctor told me it wasn't worth it to test me if I was committed to a gluten free diet, because testing would mean eating gluten daily for 6 weeks and she said it would be dangerous for me based on my previous symptoms (I'd been gluten free for 6 months or so by that point).
I am 51 and I’ve had chronic constipation since I was a child as well as nausea and vomiting 🤮 issues. I have always had a very love/ hate relationship with food. I’ve dealt with eating disorders and weight issues. About five years or so ago, in the fall I started dropping weight for no reason. I was pretty excited at first I needed to lose some weight. Problem was I couldn’t stop it from coming off. Concerned, I went to the doctors office and was told that my body would level out. Three months later, I went back to the doctor, around 50 pounds later and weak as a kitten. I couldn’t even stand in the shower. Off to the GI doctor I went to receive my gastroparisis diagnosis. I was also sent to the endocrinologist for testing. She ordered a cortisol dumping test. I took one pill for the test and I haven’t stopped putting weight on yet. What a crazy dance this is. Keep your heads up and keep digging for your truth. 😊
I actually had a woman tell me my hypermobility joint syndrome was caused by "leaky gut syndrome" and I needed to change my "toxic diet" so I could get better. I just shook my head at her and laughed! I didn't know what else to do.
I haven't got help for years [eating 200 calories a day] because I "haven't lost enough weight" its horrible I want to die because my doctors have given up on me
I loved this vlog. I could completely relate to it. I don't suffer with gastroparesis but I do have other problems that people don't understand. Ignorant and uneducated people should keep their comments to themselves. I can't stand when people judge others when they have no idea what that person is going through. On another note, I'm glad you don't require a feeding tube. There are numerous complications . I understand that many people require them but they are not a panacea. Jaquie is a perfect example. A feeding tube complication led to her demise; such a horrible tragedy. I know it's none of my business but I can't help thinking that it could have been averted if the doctors were more astute. I have a lot of questions about that but it's water under the bridge. I'm still so sad about her passing. Looking forward to more videos about misconceptions. You speak the truth.
Can you have gastroparesis without the feeling of fullness? I have fibro and my grandma has fibro and gastro and very similar symptoms to me. My insurance is lapsing right now so I have to wait to get the test, but if it isn't that then what are some other stomach things I should check for? I throw up if I walk or stand near eating (within hours), I get intense stomach pain after eating if I walk and at the very least discomfort and mild pain if I do nothing. Right now its been about three hours since eating and I'm experiencing stomach pain at about a 6 out of 10 I guess? Earlier it was worse. Another thing is that part of the not getting full thing is that I just feel so hungry all the time lately. When I first got sick about a year ago I lost a bunch of weight, but I was put on an appetite stimulant and gained weight and havent been able to shake it or the need to eat. I don't ever feel full even though I know logically I've eaten enough, even if my stomach hurts. Even now I want to eat so badly. I'm super frustrated and I want to lose the weight even if it doesn't seem that bad to other people. The first Gastroenterologist I saw was super shitty and did nothing except put me on an antiacid that made things worse. How can I find a good GI?
I think that one of the reasons gastroparesis makes people gain weight is because food is staying in your stomach for longer which can make you absorb more calories? I’m not sure how accurate/ true that is but it was just a thought i had and that i think I remember reading somewhere
I always thought it was simply because the food is just... sitting there. so even if you've technically lost weight, the food's just sitting there adding to your weight? idk, I'm probably wrong
I have EDS ,gastroparesis and EOE my stomach looks 4 months prego everything else legs hands arms I am too skinny, Last week I found out I have Pyloric stenosis which is something only babies have, My dr said I am complex.
I just found this video. Thank you so much! I am overweight and have gp. You are the first person who challenged the myth that you had to be real thin with gp. I eat, I get sick, but I am always hungry. It brought tears to my eyes that someone understands that gp affect all body types. Thank you from the bottom of my heart.
You are so true! I have gastroparesis, I got it after an open hiatal hernia surgery. I gained weight, my doc said it's because the food stays longer so fat retains more in my system. Also my doc said "feeding tube or gastric bypass?" gastric bypass of course but worry because I'm not obese. She said it will help with my symptoms but my gastroparesis will still always be there, I will just have mild symptoms if I go with the surgery. It is a new method now to control gastroparesis with gastric bypass. I still choose to eat even if I'm going to deal with my heavy bloating, I mean I get so bloated I feel like i'm going to blow, thanks to my reglan it really helps a lot though. I rather eat than starve. Izzy this is a great video. I really need to start making some too about gastroparesis. Oh yeah diet doesn't help it still get very bloated with just cream of wheat, protein shakes, smoothies, oatmeal, yogurt or just a banana.
Thank You. Grate Video! I love how you said that people who are bigger or not thin can have Gastroparesis. I myself am not thin but this is something that I the other day on MON 26 AUG 2019 sat down with my doctor. I did bring this issue up with him when he was giving me my Physical. I even tried out that app that you let us know about. It would be nice to have a more in-depth video on how long it will record for and if there is a way to set it up so it will not stop recording until you tell it to stop?
Izzy I just had a t-shirt idea and you can have it for a new product. Picture a stomach with zzzzzz and a finger poking it with the words "Hey wake up"
Problems CAN be caused from the brain. It can also be due to smooth muscle issues due to defects in those tissues. It can also stem from peripheral nervous system, which distinctly does NOT include the brain and spinal cord.
Other people: HOW DARE YOUR STOMACH BE PARTIALLY PARALYZED WHEN YOU'RE NOT UNDERWEIGHT?!
Me: Do you even science?
Right?
Science doesn't even understand gastroparesis lol
I had a gastroenterologist tell me that because I hadn’t lost more than 10 lbs that I couldn’t be having the symptoms I was, then I finally got to 10+ lbs weight loss and he still was like well you just need to find the right foods and medicine combo...after I had a colonoscopy and ended up in the hospital from horrible nausea and vomiting, from dehydration suddenly people were a little more willing to listen....funny how it takes such extremes for people to listen, glad I finally found an EDS doc who listens and has helped me get back to a healthy state 😍
Myth-shattering videos like these are much needed in the chronic illness community, thank you!
I’m one of those people that eat the things I shouldn’t 🤣 every time I’m like 🤦♀️🤦♀️ but the food tastes good when I’m eating it.
There aren’t enough hours to make videos on all misconceptions about GP.
@5:20 I made an eating diary for a year to see which foods work best and they changed over time. There were foods I was able to eat for months and then out of nowhere they started making me sick. It’s so random.
Yes! I totally agree! The other day I was at a restaurant hooked up to my feeding pump. I went to the restaurant because my parents and my siblings were going and I wanted to hang out with them even though I couldn't eat anything. This random woman comes up to me and asks my Dad why I have a feeding tube if I don't need it. I tell her that I do need it because I have gastrparisis. She tells me that I am a attention seeking liar and that GP does not exist. She then rolls her eyes and walks off.
omg omg omg i cant believe someone would do or believe that!!!! i hope ur taking it lightly bc that lady was off her rocker!
@@IzzyKDNA yes, I agree that it doesn't make any sense that she would say that. I didn't let it bother me, I just shared it so hopefully nobody would have the same experience.
That's disgusting and so cruel 😠 of her that she did this. Some people have more problems than others and it appears she's spreading hers all over the place. Spoons to you.
😱
Wow..
I am newly diagnosed and I have had so many people already suggest herbs, vitamins, clean eating. I just want to eat ANYTHING. I am on liquids and have been for three months and even they make me nauseated.
Any ideas on why when doctors don’t have enough knowledge to know what’s really going on, they just say go to PT and then when you get worse from overdoing it or doing the wrong exercises, they say you’re not trying hard enough and blame you. Sorry for the rant but the journey has been very frustrating.
Diagnosis misconceptions would be cool! Things like about how all diagnosis are bad, how its easy to get a diagnosis, that it will solve all your problems ect.
Maybe make a video about the misconception that disabled people are always happy to explain to strangers why they're disabled or why they're in a wheelchair. It's not my job to educate your kids when I'm at the grocery store and feel like crying from stress and pain
I go see my gastroenterologist tomorrow to discuss getting new testing/meds. Your videos have really helped me better understand GP and EDS. Thanks for all you do!!
so glad my videos could help! good luck tomorrow!
@@IzzyKDNA thanks!!
I am the perfect example I’m 6’ tall 265 lbs but I also had something like 65% retention at 4 hours on my gastric emptying study. It makes absolutely no sense. My gastroenterologist says he see’s it all the time of people overweight when he knows they’re calorie deficient.
I am one of those people who have gastroparesis and has only gained weight and can’t lose weight and no one cares or believes me.
I feel like it's helps people to understand that it's easy to gain weight when all you can eat are simple carbs. People judge what I eat like I'm only eating junk "eat a vegetable for crying out loud". Easy for them to say. LOL Everything they tell you to eat to lose weight I can't eat. I feel like the only way I could loose weight would be to literally not eat or drink at all. Which I certainly could choose to do but it seems less healthy than what I do now.
ChrissyB me EXACTLY!!!!!!!!!!!!!
For me, it was up and down Weight all my life, then massive weight loss 5 years ago- 130 pounds over 8 months time. Which set me in the road to specialists and finally finally getting an eds dx ultimately. The gastroparesus has continued to be horrendous and my weight stays 98-105 mast cell and dairy/gluten and multiple allergies haven’t helped.
Me when i see that Izzy posted another video that is interesting: 😆
So basically, just another video? 😂❤
Sal O'Mahoney of course… you already know😂
Ok i LOVE this girl. Beyond strong. Legit definition of when life gives you lemons. Instead of letting all her health conditions etc make her upset she takes in everything and shares it with others. Thats the best thing for someone newly diagnosed like myself . Thnks for all you do sis
Omg. I remember when I went to camp as a counselor for kids with Crohn’s and another counselor had the nerve to ask me, “why are you so thin?! I have Crohn’s too and I’m not a stick figure.” I almost cried. People are so ignorant and cruel sometimes.
My insurance doesn’t care about my serious gastrperisis. I’m denied much needed treatment the doctors want and feel I need.
What about Epilepsy misconceptions? I have Epilepsy AND EDS.
I've been gaining too over the last year plus all the diets are contradicting.
I gain weight very easily and struggle to lose weight. I think there are 3 main reasons for this 1) fat bothers me and fiber bothers me so I tend to eat too many simple carbs and sugary foods. I can eat a package of lower fat cookies just fine, but will feel sick for hours if I eat an apple. 2) I mistake nausea for hunger. I think this is because I suffered through 2 pregnancies where I was sick 24/7 the entire 9 months. And while pregnant, I had more nausea on an empty stomach. And so now, when I have nausea, my instinct is to eat. And 3) I don't throw up. I used to, until I identified my main trigger as gluten and cut it out of my diet. I still have near constant nausea, I just don't throw up anymore.
And I'm definitely not gonna claim going gluten free will help everyone. I have a number of serious GI issues and I very likely have celiac as well. My doctor told me it wasn't worth it to test me if I was committed to a gluten free diet, because testing would mean eating gluten daily for 6 weeks and she said it would be dangerous for me based on my previous symptoms (I'd been gluten free for 6 months or so by that point).
I have had gastroparesis since I was born and was recently diagnosed with hypermobile joint syndrome.
I am 51 and I’ve had chronic constipation since I was a child as well as nausea and vomiting 🤮 issues. I have always had a very love/ hate relationship with food. I’ve dealt with eating disorders and weight issues. About five years or so ago, in the fall I started dropping weight for no reason. I was pretty excited at first I needed to lose some weight. Problem was I couldn’t stop it from coming off. Concerned, I went to the doctors office and was told that my body would level out. Three months later, I went
back to the doctor, around 50 pounds later and weak as a kitten. I couldn’t even stand in the shower.
Off to the GI doctor I went to receive my gastroparisis diagnosis.
I was also sent to the endocrinologist for testing. She ordered a cortisol dumping test. I took one pill for the test and I haven’t stopped putting weight on yet.
What a crazy dance this is.
Keep your heads up and keep digging for your truth.
😊
Who disliked this video? Its only 1 person and how dare they judge the illness in a negative way!
I actually had a woman tell me my hypermobility joint syndrome was caused by "leaky gut syndrome" and I needed to change my "toxic diet" so I could get better. I just shook my head at her and laughed! I didn't know what else to do.
Wow. That's kinda scary, but definitely sad.
She probably didn't know better
Hey I have joint hypermobility also!
I haven't got help for years [eating 200 calories a day] because I "haven't lost enough weight" its horrible I want to die because my doctors have given up on me
Thank u Izzy for this I’m over weight and I have gastroparesis I’m not eating right now because of it I am eating but very very very very little
does the vomit stink like normal vomit?
Celery juice made my symptoms so much worse, yuk.
I loved this vlog. I could completely relate to it. I don't suffer with gastroparesis but I do have other problems that people don't understand. Ignorant and uneducated people should keep their comments to themselves. I can't stand when people judge others when they have no idea what that person is going through. On another note, I'm glad you don't require a feeding tube. There are numerous complications . I understand that many people require them but they are not a panacea. Jaquie is a perfect example. A feeding tube complication led to her demise; such a horrible tragedy. I know it's none of my business but I can't help thinking that it could have been averted if the doctors were more astute. I have a lot of questions about that but it's water under the bridge. I'm still so sad about her passing. Looking forward to more videos about misconceptions. You speak the truth.
Can you have gastroparesis without the feeling of fullness? I have fibro and my grandma has fibro and gastro and very similar symptoms to me. My insurance is lapsing right now so I have to wait to get the test, but if it isn't that then what are some other stomach things I should check for? I throw up if I walk or stand near eating (within hours), I get intense stomach pain after eating if I walk and at the very least discomfort and mild pain if I do nothing. Right now its been about three hours since eating and I'm experiencing stomach pain at about a 6 out of 10 I guess? Earlier it was worse. Another thing is that part of the not getting full thing is that I just feel so hungry all the time lately. When I first got sick about a year ago I lost a bunch of weight, but I was put on an appetite stimulant and gained weight and havent been able to shake it or the need to eat. I don't ever feel full even though I know logically I've eaten enough, even if my stomach hurts. Even now I want to eat so badly. I'm super frustrated and I want to lose the weight even if it doesn't seem that bad to other people. The first Gastroenterologist I saw was super shitty and did nothing except put me on an antiacid that made things worse. How can I find a good GI?
Facts 11years and I'm still trying to figure it out everyone without it doesn't understand
do you take any medicines to.manage it?
I think that one of the reasons gastroparesis makes people gain weight is because food is staying in your stomach for longer which can make you absorb more calories? I’m not sure how accurate/ true that is but it was just a thought i had and that i think I remember reading somewhere
I always thought it was simply because the food is just... sitting there. so even if you've technically lost weight, the food's just sitting there adding to your weight? idk, I'm probably wrong
I have EDS ,gastroparesis and EOE my stomach looks 4 months prego everything else legs hands arms I am too skinny, Last week I found out I have Pyloric stenosis which is something only babies have, My dr said I am complex.
What we're your first symptoms of gastroparesis?
I think dieticians can help alot with Gastroparesis.
Thank you for helping to bring awareness to this condition 💚
People accuse me of having an eating disorder and I was recently diagnosed with gastroparesis.
Great video 😘
I just found this video. Thank you so much! I am overweight and have gp. You are the first person who challenged the myth that you had to be real thin with gp. I eat, I get sick, but I am always hungry. It brought tears to my eyes that someone understands that gp affect all body types. Thank you from the bottom of my heart.
I was diagnosed this February after a life threatening occurrence and stay in the hospital
this is helpful thank you
This is great info. I was not properly diagnosed because I am not thin.
I liked during the ad 🤷🏼♀️ always love your content
Love you 😍
You are so true! I have gastroparesis, I got it after an open hiatal hernia surgery. I gained weight, my doc said it's because the food stays longer so fat retains more in my system. Also my doc said "feeding tube or gastric bypass?" gastric bypass of course but worry because I'm not obese. She said it will help with my symptoms but my gastroparesis will still always be there, I will just have mild symptoms if I go with the surgery. It is a new method now to control gastroparesis with gastric bypass. I still choose to eat even if I'm going to deal with my heavy bloating, I mean I get so bloated I feel like i'm going to blow, thanks to my reglan it really helps a lot though. I rather eat than starve. Izzy this is a great video. I really need to start making some too about gastroparesis. Oh yeah diet doesn't help it still get very bloated with just cream of wheat, protein shakes, smoothies, oatmeal, yogurt or just a banana.
Misconceptions about feeding tubes is huge! Especially when you're able to drink and eat some stuff by mouth still.
Thank You. Grate Video! I love how you said that people who are bigger or not thin can have Gastroparesis. I myself am not thin but this is something that I the other day on MON 26 AUG 2019 sat down with my doctor. I did bring this issue up with him when he was giving me my Physical. I even tried out that app that you let us know about. It would be nice to have a more in-depth video on how long it will record for and if there is a way to set it up so it will not stop recording until you tell it to stop?
I’m seeing a specialist next week and I think I have this, this was sooo helpful thank you so much!
Just found your channel... so encouraging!! Thank you for sharing your story!
First to comment! Love your videos!❣
thanks!!
Omg yes thank you for this!
Izzy I just had a t-shirt idea and you can have it for a new product. Picture a stomach with zzzzzz and a finger poking it with the words "Hey wake up"
so cute!!!! funny idea!!
Good one, Izzy!
The problems stems from the brain not the stomach
Problems CAN be caused from the brain. It can also be due to smooth muscle issues due to defects in those tissues. It can also stem from peripheral nervous system, which distinctly does NOT include the brain and spinal cord.