oh gosh im so so sorry. It's disgusting how a doctor can dismiss your symptoms based off of your weight. People of any weight can have gastroparesis, and I'm sorry you had to wait for your regular doc to come back and actually LISTEN to you. Weight discrimination is a huge problem in medicine, as I'm sure you know, but I can imagine that when it comes to stomach issues, people are even MORE dismissed and shamed.

Sorry you experienced this. I have hEDS, and have encountered this level of ignorance and negligence from doctors in the past. I highly recommend getting a second opinion from a competent doctor. Here are some handouts of your own to shove in the doctor's face if you're dismissed again: www.ehlers-danlos.com/2017-eds-classification-non-experts/gastrointestinal-involvement-ehlers-danlos-syndromes/ www.ehlers-danlos.org/information/gastrointestinal-problems-in-hypermobile-ehlers-danlos-syndrome-and-hypermobility-spectrum-disorders/

I’m so sorry, that’s a huge amount of weight, I can’t even imagine how horrible it was for you

So sorry to hear about the “dismissal factor”. I deal with the dismissal factor in the ER’s as a “Non-compliant Diabetic” if and when I need to go there due to pain or dehydration which can put me into an episode of Diabetic Ketoacidosis (DKA). I had these episodes for five years and finally after I ended up in the ICU for 6 days they suggested I see a Gastroenterologist to be tested for Gastroparesis (GP). Yip. So that explained my “non-compliance” to all who thought I simply was not taking my insulin and/or eating each day until my heart was content. NOT. Also, right after my diagnosis I lost 40 lbs. in one month and then lost so much over the next few months that I was 2 lbs away from a feeding tube. But this is not true for all, I just want you to know I get what it is like to have gone through your similar situation. I have had chronic illnesses since my late teens, so I have a lot of experience with this now that I am 58 years young. So do hang in there and do your best to own your truth, as this may take some time, but once you do you will feel so much better about telling others that, “You are more than able to make up YOUR own mind, but it will not help me change My mind”. Then in the face of anyone who may dismiss you as you also are dealing with what Izzy has on one of her T-shirts for sale, Not All Disabilities Are Visable, you will no longer care what they have to say. There may still be a great website that is something like, “Butyoudontlooksick”. For those who have chronic illnesses that are not visable. A friend also taught me that what other’s think of me is non of my business, so just be true to you. I have finally learned how to do this and now I just let people talk and if I feel the need I just nod, and simply say, “Hmm, that could be something to consider” and walk away knowing they truly mean well, but for those who are chronically healthy they simply live in a different lane of Life and have NO idea of what our lives are like. We have our own Lane to travel, but at least we are NOT alone thanks to Izzy and all who share their stories on KZfaq. I got my best advice on the internet. Izzy is a great source of information so I have taken time to look back on her other videos and learned so very much. By the way, love your name as we here at my house call ourselves the Wolfpack as we have 2 great dogs, one being part Wolf, Chow, and a breed I knew nothing about, but an American Indian dog. We live in the Southwest and both my boyfriend and I love All things from our Native Indians. We even met at a drumming circle several years back and then we moved in together and I got him our dogs, the other one is a sweet little American Eskimo with a Sprinkle of Corgie. Both dogs are the best medicine and bring much joy into our lives. I do wish you the best of luck as you find what meds and/or foods you are able to tolerate. May you be able to find some peace and happiness and the best of doctor’s who will always listen and treat you with the best of care. You deserve it!!

Damn that sucks. Glad there is a success at the end of the story there :)

this is so horrible

I was handed a note in an ambulance and told to “avoid thoughts of self harm” after throwing up every meal for a month

I always treat my first visit with a doctor as a job interview. I do share your sentiment of wanting to interview them prior to going to the trouble of scheduling and going to an appointment.

I agree completely. In fact, one of my opening questions is often, “So how and when did you know you wanted to be a doctor in this field”? Their reply would often determine whether I would schedule a follow up. We have the right to know their training, etc. I also do my best to research them on the internet and I also go by how well the office is run, if it is clean, and if it feels calm in the waiting room. Then when I DO like them, I tell them, “Well, I think you are the right doc for me, and welcome to Team Heather”. They usually chuckle as they know that I am in need of many different specialists. All of which have been cherry picked and now I get the best of care or I am out of there. As I see it, they work for us as they get paid by their patients!! So best of luck with all finding the right doctors for you!!

You can find the quacks online if you're looking for someone to diagnose you with the disease you want...

​@@DulcimeristDoctors aren't hurting for patients.... there will always be enough.

@@parkerjon29 And there are plenty of doctors, so there's no sense continuing to go to a bad one.

Same boat, due to T1 Diabetes…back to diabetic shake drinks for breakfast and baby food pouches for lunches and snacks and hopefully 🙏🏻 some real “food” for dinner again and trying to find foods that agree with my stomach after about 18-20 months of not being able to eat…thankfully sugars are getting back in line again so 🤞🏻

I feel you, my doctor would praise me for my weight loss when I would come and see her every 3 months for zofran, even after 100 pounds she told me it was stress or me doing it to myself. I have found an amazing doctor now though.

oh gosh that's so horrible. im so sorry that your symptoms and weight loss weren't taken seriously because of your weight.

at this point they seem to be deliberately trying to cover something up i dont know surely they are not this ignorant this is not good enough at all so many people suffering my daughter has been treated terribly x

Thank you! I'm so glad!

I have to second those feelings of appreciation and gratitude for Izzy's work!

Get a second opinion. That doctor was being lazy and didn't want to do their job. Diabetes isn't the only thing that can cause gastroparesis. Do you have Ehlers Danlos syndrome, which is why your daughter also has issues?

@@Dulcimerist my sister and I were both diagnosed with gastroparesis as teens. Every time we go to a new doctor, that is the response we get.. the response is obnoxious, but it shows that a lot of doctors my sister and I come in contact with are uninformed. Regarding cause, it seems it is hereditary, but no one has determined what exactly is causing the gastroparesis. I suspect my dad, and strongly suspect my son has EDS, if I don't have it myself. Getting a diagnosis for anything in my area is difficult. I've been living with a mystery illness for almost 4 years and I keep getting passed around from specialist to specialist. (Technically I've had the symptoms for 2 decades, but they ramped up 4 years ago) My son's symptoms are obvious (stretchy skin, double jointed everywhere, dislocation history, frequent pain, fatigue), so I'm hoping he could be the key to helping the rest of us be taken seriously, as terrible as that is..

My gp was caused by hypothyroidism.

I’ve got small fibre neuropathy and this can affect the nerves regarding gastroparesis which I suffer badly with and yet I am overweight despite hardly eating anything and I track every thing I eat, I’ve also got heds, pots, multi system dysautonomia, bile acid malabsorption, and many others

My grandmother had crohns. She got down to 70 lbs and was fading away. She was told she CAUSED it by being too stressed and her psycho church came to her house and gave her a literal exorcism. It makes me so mad. She had 2 small kids at the time too. My heart hurts for what she went through. By the time doctors took her seriously she had to have most of her intestines removed

my stomach HATES it too :(

omg im so sorry you went through that Natasha

What were they able to do for you in surgery, IF it not too personal to talk about. Many would love to know of all options that are able to help, let alone cure it altogether!! I am so happy to hear you ARE feeling much better and that you can get back to thriving in life rather than just barely surviving from the sounds of it. So good job, and kudos to your surgeons!! May you enJOY each and every day with your newfound health!! We ❤️ to hear good stories with such positive outcomes!! Yay 😊

Glad to hear that!

So glad that you found a good doctor who can put you in touch with the proper resources! I have friends in the UK who have EDS, and I've heard horror stories they've been through while trying to navigate the the healthcare system in the UK.

Same here! Im in the uk and will finally see gastro in May! I’m currently being treated for suspected gastritis and suspected gastroparesis but i really want some actual tests to confirm.

how tall are you? They r saying no feeding tube for me since i am about 5ft6 104 pounds and can take only 1200-1300 calories daily that too only.liquids calories and one small sandwich.. Maybe when i get to 90 pounds they will take.me serious this sucks

Antacids?

It's such a difficult and painful condition. I wish there was more awareness and im hopeful that the medical field will be able to continue to improve the treatment options

@@IzzyKDNA yes absolutely 🙏🏼❤

@@IzzyKDNA They're definitely working on new treatment options! I recently got put on Mestinon, which is a 75-year-old medication which researchers have recently repurposed to treat both gastroparesis and POTS. I'm impressed that researchers found a new use for an old drug, and I'm absolutely amazed at how much better I feel! The bloating and abdominal pain are gone, and the POTS is pretty much gone as well!

Thank you so much!! 😍

Unfortunately, she’s right. Most people don’t even look fat women in the eye. Of course she’d rather be sick and thin. At least people would treat her like a human.

@@dewilew2137 what a profoundly accurate statement. The thing is, my neighbor isn’t even overweight and a beautiful woman by any standards, that made it even more painful for me to hear.

literally me all the time even though im diagnosed. I'm like, well what if it was just a fluke? Or what if they are wrong? Then I feel sick and I'm like YIKES JUST KIDDING I def have this. But on a serious note, I'm really glad to hear that your doctor is testing you for it. It can definitely sound like a scary condition and it's not easy to deal with, but everyone's case is totally different and it's very validating to have a name to your symptoms. Good luck with the testing!

This is the situation I’m currently in as well. I have EDS/POTS/MCAS. Have all the symptoms of Gastroparesis, I’m being tested for it soon, my doctors think it’s likely/possible...but I tend to point to every tiny little thing I can as evidence that I don’t have GP.

It's good to know for sure if you have it or not, since it can point your doctor the right way in treating you so you can feel better. I ended up getting tested, and was blessed by my doctor prescribing Mestinon to treat my digestive dysmotility issues. It has been a miracle for my digestive issues, and has also knocked out my POTS. It's like a magic pill for my EDS issues.

Yes! I was like that for most of 2019 and up until March 2020 when I was put on Mestinon. It was POTS related for me. I kept ginger ale under my bed to drink before I got out of bed and I was at one point taking zofran every day until I got on Mestinon. Then a little later I was put on Midodrine and now the nausea is almost completely gone. I might have it from time to time instead of daily.

Also increase your water and salt intake if you can. That really does help.

😂love it!

oh gosh that's horrible that they would say this!

I'm sorry it's been difficult to get tested for EDS and POTS - It can be so hard to find a doctor who knows enough about them to diagnose them. If it means anything, I think that it's easier to get tested for POTS than it is for EDS and having a diagnosis of one will likely make it easier to be tested for the other, so it might be a good idea to try to find a cardio. just a thought!

@@IzzyKDNA thank you. I live in a small town and I'm under 16 so they keep saying it's in my head and one doctor even refused to test me even after being in the hospital m my mum also thinks I'm to young so it's a bit annoying cause no one believes me

I agree with Izzy on getting diagnosed with POTS and other co-morbidities of EDS first. They diagnosed me with POTS and Neurally Mediated Hypotension first, and then other doctors saw that and noticed my hypermobility. I had doctors tell me it's "all in my head" as well, which delayed my diagnosis and got me on medications that gave adverse reactions - one of those sent me to an ICU with convulsions and I nearly died. I highly recommend you what the webinar on KZfaq called "When is Anxiety Not Anxiety: Psychiatric Misdiagnoses in EDS" by Dr. Alan Pocinki. It goes into depth about how POTS happens in EDS patients, and why EDS and POTS often get mistaken for psychiatric disorders. That webinar changed my life, and helped my doctors to find better medications to treat my EDS.

@@Dulcimerist thank you so much I'll look into that soon

@@joshlartter5612 my POTS symptoms started at age 8. All four of my kids have hEDS and orthostatic intolerance. These conditions (EDS in particular) are genetic so there is no such thing as too young when it is a disease we are born with. It's just a matter of when the "switch" is turned on and symptoms start showing. My EDS symptoms didn't start until my 20s, but in my kids they began much earlier. My middle son is only 11 and has more symptoms than I do.

I also have PCOS. So losing weight is not easy for me. So 10lbs a month is HUGE.

lol

great name hahhahaha

@@IzzyKDNA thanks! I've seen thousands of doctors in my life. A lot of them thought I was drug seeking..... I'm allergic to opioids🤦‍♀️. So I started calling it that. I also now ask my new doctors how much they like blank puzzles.

That's awful! I can't believe the doctor told you that 😬

have sex the day before lmao

POTS is a nervous system disorder. It is a disorder of the autonomic nervous system. Blood pressure meds do help in addition to up to 100 oz of water per day plus increased salt intake. For my POTS I take one blood pressure medication (Midodrine) and one medication to decrease my heart rate (Mestinon) and I take up to 3 Vitassium salt pills per day in addition to as much water as I can handle, which tends to be around 84 oz. Edit: I take the medications multiple times a day, it's just those are the two I take for POTS.

I've never had red meat but i've heard that it's hard for others with gp to digest!

I think it could be really helpful to see a gi doc about these concerns! Also I want to give you info for the National Eating Disorders Association (NEDA) chatline, text line, and phoneline. They can be really helpful to chat with if you're struggling with your eating disorder - they can give you support and treatment options if you feel like you're ready :) www.nationaleatingdisorders.org/help-support/contact-helpline

Thanks so much! I’m familiar with them! And I’m in therapy. I was recovered a little while and have dealt with this on an off for a few years, plus I’ve come to realize one of the causes of my ed was gi issues in the first place, so I def need to speak with a doc!

Yes you can!

Anorexia nervosa*