Gastroparesis Misconceptions

Gastroparesis Misconceptions

Hey guys, so I’m currently sitting in my wheelchair because I just filmed a video about my wheelchair and cleaning it and stuff. So, like, I just didn’t move because my setup is here. So that’s why I’m sitting in this chair. So because it’s the end of Gastroparesis Awareness Month, I wanted to do one more video about gastroparesis talking about gastroparesis misconceptions. And I’m actually going to do a bit of a “misconceptions playlist” on my channel meaning I’m going to do videos about misconceptions for other things such as fatigue, EDS, POTS, chronic illness, disability, and things like that. If you have any suggestions please let me know in the comments. And last thing I want to say before we get started is that for Gastroparesis Awareness Month I made a video talking about my story with gastroparesis and also, I made a t-shirt that is for gastroparesis awareness that I personally think is really cute (but then again I made it so that makes sense) But if you did want to get one of those, the link is in the description and the shirt looks like this. And I also have another shirt on there (the site) that’s like “not all disabilities are visible”… What is it? Now I can’t remember exactly what it says, but yes. First misconception: Everybody with gastroparesis is thin. No, that is not true at all. While weight loss is a big symptom of a gastroparesis, shockingly so is weight gain. (as is just not changing weight) But usually people will experience weight loss or weight gain. For me I honestly have to put me in the category of weight gain which sounds shocking I know and I don’t exactly understand why. I know that some people are like “Well your body holds onto fat because you’re not eating enough.” I don’t know if that’s really true though for this. I don’t know. but yeah, like It’s really unfortunate when somebody is not treated the way that they should be, or people don’t believe them because they’re not underweight or they don’t receive the same treatments. Eating is just as important if you’re thin or you’re not thin. Why does that matter!? Like you — everybody needs to eat everybody deserves treatment and everybody deserves proper nutrition amounts. So… yes. You should never invalidate somebody who has gastroparesis who is not thin, and you should never be like “How could you have gastroparesis if you’re overweight or if you’re not thin” or something like that. Never say that because that’s horrible and that’s so invalidating and it’s just not accurate at all. Next: everybody with gastroparesis is tube fed. No not true. I’m not tube fed. The majority of people who have gastroparesis are not tube fed. If you don’t know what that means, I’m talking about a feeding tube that would go into another part of their intestines, that would bypass the stomach and feed them through there Because their stomach does not work. No, that’s not true. A lot of people need them, but not everybody needs them. And a lot of it comes down to what your doctors think is the best treatment option for you. And also, of course, your opinion plays a role in it So there’s always risks that come with feeding tubes. Next: This one’s like my favorite one, even though I don’t even have a feeding tube. I just think it’s really important to raise awareness about a lot of aspects of gastroparesis — even the ones I don’t have. If you have a feeding tube, you solely rely on a feeding tube and you can’t eat at all orally. That’s not true. And a lot of people believe that. And the thing is that somebody might not be able to eat at all with gastroparesis, or very very little, but some people can actually sustain themselves partially through eating and that is amazing. And then they supplement whatever else they can’t eat — whatever nutrition they’re lacking through their feeding tube. And that’s a really good option for a lot of people, because sometimes if you’ve got a feeding tube because your gastroparesis was very bad and you just stopped eating altogether, your stomach would actually get worse. Not in everybody’s case, but I know that that’s a possibility. So it’s important to keep eating for some people. If you have gastroparesis and you have another way to maintain your nutrition such as the feeding tube, total parenteral nutrition (TPN), or something like that and you still decide to eat, you are being stupid. No Just like I said It is so difficult – like you feel you can’t even comprehend it – to not eat and to not eat for a while that you can’t just… it’s so hard! And even if you know you’re gonna get sick or you think you probably will or you’re gonna feel horrible sometimes people do it anyway. And you can’t judge them for that because 1) you’re only human 2) even though they know it’s not good and you know what the side effects are sometimes you need to just… you need to do it You need to be human because it’s literally a human thing to eat. And just because our bodies don’t work the way that they should doesn’t mean you don’t have the same cravings and the same human nature. Like that’s just… you’re supposed to eat. Your body craves it. So you should never judge somebody for that or call them stupid or say that they’re just being ridiculous or they caused it themselves and they can’t complain. Because you know what? It’s a really difficult thing to go through. (Next) gastroparesis gets better with diet. Not necessarily… not necessarily a misconception because it can be true. In a sense my gastroparesis does, because certain foods make my gastroparesis a lot worse so I avoid those foods. But no food is going to cure your gastroparesis or make it non-existent. Because the thing is, it’s not about necessarily what food you’re eating It’s just the fact that there is food in your stomach. Like certain foods, yes, are harder to digest. But it doesn’t change the fact that your stomach doesn’t work or does not work very well. That’s still going to exist. So please stop telling people who have gastroparesis to go gluten-free. I’m sure they tried it. Like and even if they haven’t, you know, that’s not gonna stop gastroparesis. like and don’t– I just hate when people try to give me stupid suggestions like celery juice. Like, it’ll cure all your problems. You know what? It’s not gonna change my genetics. And I’m not being negative I am NOT a pessimist. I’m like so freaking optimistic but I’m also realistic at the same time (even though I’m a little bit more optimistic than realistic) And I hate when people try to say that they can cure me with these stupid remedies like no That’s not gonna cure me. That’s not going to cure somebody’s gastroparesis if they go gluten free. Like that’s ridiculous. If you’re celiac it’ll cure you! Uh huh yeah. Wow I sound like a b*tch. I’m not trying to be. Sorry. That’s the way I’m coming off…. heh I hope that this informed you a little bit, now that we’re towards the end of Gastroparesis Awareness Month. I love hearing your stories and your questions, so please post below if you have any. And I will see you on the next video. Bye!

38 thoughts on “Gastroparesis Misconceptions

  1. 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

  2. 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.

  3. 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.

  4. 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!!

  5. 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.

  6. @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.

  7. 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.

  8. 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.

  9. 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.

  10. 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 😍

  11. 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?

  12. 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.

  13. 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.

  14. 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"

  15. YESSSS 🙌🏼 I can eat a few “safe foods” (sometimes…it varies lol) but I’m tube fed! Everyone gets confused how I can vegan cheese but need a feeding tube. My stomach is just weird 🤷🏼‍♀️

  16. 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

  17. Misconceptions about feeding tubes is huge! Especially when you're able to drink and eat some stuff by mouth still.

  18. 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.

  19. 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.

  20. 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.

  21. I'm overweight. I was recently diagnosed with EDS and gastroparesis because a doctor finally believed that it was possible for me to vomit multiple times a week and still be overweight.

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