Common in patients with Ehlers Danlos syndrome

Unfortunately this is something I've been diagnosed with for the last 7 years. Never see anybody talking about it and have had so many prople tell me that doesnt exist so it was nice to hear someone finally discussing this!❤

I feel for the young gastroparesis patients. Managing a complicated illness at a young age must be difficult. Come up with the cure Doc !!! : )

I was diagnosed with gastroparesis two yrs ago- ironically it's bc of a vagus nerve issue d/t a spinal cord injury. It's H*LL to live with and I currently am living off of nutrition shakes 😭 I DESPERATELY WANT TO EAT REAL FOOD AGAIN 😭😭 *venting over* ....sorry 😞😭

I have Gastroparesis. It can sometimes be so severe that you need a permanent feeding tube, as I do. However, this is not usually the case. I see a lot of people become terrified when they get diagnosed that they will need a feeding tube, and that is a very small percentage of people with gastroparesis. You’ll probably be fine!

I work with people who have Parkinson's Disease and gastroparesis is the second most common GI symptoms of PD. Its such a pain to treat bc most the motility agents to help with gastric emptying cant be used bc they are dopamine antagonists. People with PD take dopamine or dopamine agonists to supplement their body with the dopamine that their brain no longer makes. So taking the drugs for gastroparesis would cause them to have significantly less motor control. Spot on with the nutrition recs!

Since I was a kid I couldn't eat a lot, I would feel full from my first bite and would throw it up later, doctors had no idea what it was and never considered gastroparesis. I dealt with it until now, I'm 16 and finally my doctor referred me to a g.i specialist, we did a gastric emptying test and surprise!, I have gastroparesis. I have been on a feeding tube and will have surgery soon to have a permanent tube placed. It took 12 years but finally I know what's wrong with me, it's tough as a 16 yr old to have this condition with no cure only medication to help.

I'm actually doing a gastric emptying test this Wednesday because we're suspecting gastroparesis, so I appreciate this video :) I keep cracking up every time I think about having to eat radioactive oatmeal...

I'm so glad you did a video about this. I've had this condition for about 10 years and I always find it really hard to explain what it is succinctly when people ask. This is a perfect short explanation.

I’m 26 and after over 10 years of trying to get doctors to listen I ended up in the er with a blood sugar of 39 (seizure and death levels) when they finally did the gastric emptying scan where I was diagnosed with severe Gastroparesis. I had 50% of the food still in my stomach after 4 hours…

Thank you for explaining in a minute something I didn’t understand well after 5 years of medical school and 10 years of being a doctor

My mom who’s 38 just got diagnosed with this and I’m beyond terrified for her… if anyone has been through this process please let me know what you’ve had to go through with it): I can’t stop crying and these videos scare me worse…

I have this its hell on earth ❤ I have hEDS as well. Thanks for covering it

As a child my stomach would hurt so bad that I'd sit on the toilet for hours, strip naked because I was so sweaty and sick, and still couldn't use the bathroom. Multiple doctors never found out what was wrong. These days I hurt every so often, but nowhere near as bad, and don't go regularly. This sounds like a possibility.

I have gastroparesis... most awful thing to ever happen to me. The suffering is for real....I have a botox procedure coming up. This worked last time the most normal I've been in years. Great video!

Keep it comin doc i find this helpful as a med student

Thank you for making this! Can you make one that focuses on IBD & Gastroparesis?

Thank you for explaining this so clearly and bringing awareness to it. My daughter has idiopathic gp and it’s incredibly hard for some people to understand it.

I wasn't expecting this video. I have gastroparesis. I had to have feeding tubes for 6 years

I have gastroparesis (I'm 34). I have it due to a idiopathic reason. I would be happy to never eat a meal of scrambled eggs, jam,toast, with the water(I swear I'm radioactive after all those GES!). I'm so happy that you covered this syndrome, it's amazing how many doctors I had to go to before getting diagnosed. I'm having a night full of vomiting and it was nice to have GP explained. 💚

I have this and I wanted to see if there was something special I should be doing to deal with it. Sadly it sounds like I'm doing all I can. I think poorly controlled diabetes gets the quick answer because its what people are most familiar with. I wish someone would explain the other reasons for this disease.

I was diagnosed with moderate gastroparesis a few years back. It was the worst time of my life. I thought it would last forever. Thankfully after about a year and a half it spontaneously went away. My GI doc called it idiopathic, so it came and went without an underlying reason. I did try domperidone, unfortunately it did not help my symptoms

Yes, glad you touched on the nutrition therapy piece as well 💯

I have this due to Ehlers Danlos Syndrome. I have a gastric stimulator implant that really helps. I was eventually able to get rid of my feeding tube.

I have this from surgery at 40 to cut out gastric carcinoid tumor . Saved my life but yesss the struggle is real ! We have to eat “soft” foods (basically blender all you eat ) lol .. I still eat pizza whole because it’s one thing I would never blend . Thanks for the video . This helps because when you work with people everyone goes to lunch or eats for social in the office . I get tired of explaining why I don’t eat things brought into the workplace so now that I can’t eat gluten . I just say gluten free instead of gastroparesis 😂😂

As a Type II Diabetic, I experienced this when first getting on Metformin. Waking up at 2am to find your dinner has not digested and then vomiting? Not fun. But after a few weeks my body adjusted to the meds and have been good ever since.

I have gastroparesis from Ehlers Danlos Syndrome. Taking Erythromycin is helping. Had to get a J tube.

Thank you for making this. Currently on NJ because of idiopathic gastroparesis. Here is Australia it’s especially rare. We need awareness, research and better treatment options. Thank you for your interest.

Nice to see some content about this. I was diagnosed at 15 years old, now 26. Thankfully my Gastroparesis is manageable with domperidone and diet and was definitely worse in my teens.

Please do more of such videos ❤️ It helps out both the medical and non medical viewers

Thanks for the concise explanation! Learned something new about the GI tract and diabetes!

Ahh the beloved gastroperisis and the radioactive eggs. 😂 My stomach was still 95% full at the five hour mark, they let it go an extra hour to see if anything else would empty. Nope. Everyone was mystified that I wasn't vomiting 24/7. 🙃

I have pan-GI dysmotility from esophagus to rectum. My liquid GES still had >80% of the fluid still in my stomach. We ran through all the meds, nothing helped. So I have the Enterra gastric pacemaker now for my nausea and I've had a J tube for nearly 3 years now. And a medi-port for fluids. I went from 93 lbs to 110 lbs thanks to the Enterra!! It seriously saved my life! I was circling the drain, losing at least a pound a week! Mine is caused by Ehlers Danlos and Complex Regional Pain Syndrome. Thank you for covering gastroparesis and helping patients like me!! ❤️

Way too excited to see this video. I have severe Ideopathic GP and have a GJ tube, end ileostomy and a PICC line. This condition is so so so poorly understood down here in Australia and many doctors don’t believe a lot of patients 😔 thank you for bringing much needed awareness

TPN dependent from GP and then short gut. A crazy surgeon removed almost all of my stomach when I was still young and naive. He has left me most likely needing a transplant.

Omg can you talk more about GI stuff. This sounds a lot like what’s been going on with me and a doctor even mentioned it one off. But I’ve been having such a hard time getting a doctor to listen beyond it’s probably just the flu (since it’s winter now). And it’s so bad I can’t sleep. And I have so much bloating I would take one of those tubes right about now. I just am wondering about some of the different GI things you’ve seen and that are common and ways you may be able to help alleviate these different issues ( as well as how to best talk to your doctor about your concerns, especially something like GI that gets blown over by a lot of doctors from why I’ve seen with friends and others as well). Love your videos especially the little skits. SOO true.

Thanks for speaking about Gastroparsis!I

I'm 25 and I was diagnosed with gastroparesis after 2.5 years of testing, endo and colonoscopy, and several er trips and lost time from work due to this.

Hey Doc, Dx with GP at 18, no DM. Mom has it too. I took erythromycin for several years for mine (Parkinson's symptoms with Reglan, and domperidone did nothing). Then, a few years ago, they came out with motegrity. That's the best thing ever for me! This and various nausea meds helped so much. I hope insurance starts covering it better so other people have access to it too.

Thank you for the information!!

Severe idiopathic gastroparesis patient here. Yeah- it sucks. I’ve had my stomach removed, feeding tubes, and I’m now on TPN for the rest of my life. I need the TPN to survive, but the TPN has put me in liver failure. I want to have a child so bad, but I don’t want to risk passing it on. I wouldn’t wish this on anyone. I have a five year old niece who’s already showing similar GI symptoms. I’m praying a cure or a better treatment plan is found in her lifetime. Edit: I’m only 30. I had GI symptoms as a baby, but I started having more serious symptoms when I was just 8 years old. I don’t remember what it feels like to not be nauseous.

TYSM for this! I'm a Gastroparesis patient for 10 yrs (comorbidity of a neuro disease which started at 22) and the only things that seem to help are Relistor, CBD oil, and deep breathing/meditation after meals.... along with a good probiotic taken an hour BEFORE meals. Low sugars, low fiber, low carbs (to ward off bloating & inflammation) and no meat at all or it will ferment in your stomach causing sepsis. I can only go to the restroom every 2 weeks even managing it well. Better than every 2 months and dealing with sepsis like in the past. GP is actually the least of my worries but without paying attention to diet, it gets serious really quickly. Reglan is okay but didn't help with motility as much as the Relistor has. (Relistor is a med for terminally ill patients with poor motility and opioid dependent patients with severe constipation.) With liquid diet & pureed foods I've been able to avoid the tubes. My conditions make me a bad surgical candidate but I'm still trying to get to the restroom more often bc it really increases my infection rate when food doesn't pass for too long.

I just had sudden onset gallbladder symptoms that resulted in a cholecystectomy (gallbladder removal.) After years of gastroparesis attacks that always caused migraines (about two per week) I suddenly haven't had a single incident. I think my gallbladder removal may have fixed my gastroparesis, or at least been linked to it somehow. I'm only a few days post-op, but I feel so much better!

My mitochondrial disease caused gastroparesis. I have a GJ tube and use domperidone.

Thank you for speaking about this and including feeding tubes. I am sick and have had to teach most people in my life. Even some medical professionals admit I know more about some of the topics than them. I have Gastroparesis and Intestinal Failure causing me to be TPN dependent, I also require a variety of other IV medicines and need a G tube to drain my stomach and a J tube to administer a few enteral meds. These are just a couple of the conditions my team believes are comorbidities of my hypermobile Ehlers Danlos Syndrome (hEDS).

So many of my patients have this

There are also gastric pacers to treat this that I've seen a couple times. They show up on ECGs at regular intervals and it spooked me the first time I saw it before I was told what it was lol

I’m actually having this procedure the day after tomorrow. It’s been a long time coming. I hope I get some answers.

Really like these videos Doctor. Thanks

More of this. Beautiful explanation.

I was watching this video for fun and came across the exact thing I'm going through. Wow. Thank you!

Ehlers Danlos is common with Gastroparesis.

My dad has this condition caused by his type 1 diabetes. It's good to hear others talk about it Sadly we can't get him to stop drinking alcohol even though we've repeatedly told him it would help with a plethora of his medical issues (including the gastroparesis) but he won't listen because they "aren't caused by alcohol but his diabetes"

Thank you for adressing this. In my case, they didn't found the case. This was diagnosed by eating a good pancake with a tracer (I suffered from aching afterwards;)). Now small meals helpt a lot, I still have some small complaints sometimes, but it is managable. :)

Brilliant, this is exactly what I asked for an needed. Sharing now for my students.

I have GP thanks doc Schmidt

I have gastroparesis whenever I get a migraine. GI symptoms started months before the headaches ever got bad, so for almost a year the doctors weren't making the link. Also made it really difficult to manage the migraines because oral meds would just sit in my stomach until the migraine passed

@Tina Evens This is interesting, I have never heard of someone with Gastroparsis caused by anxiety. Will look into it though. Thanks.

Love the little education clip keep these up!

Mine is caused by stress and anxiety that causes my entire digestive system to shut down (what happens when it starts back up is not much better!) 🙄

I had a defecography done this morning. The doctor performing the study had me go back out to take a couple Reglan because after 45 minutes, the barium was not leaving my stomach. 20 minutes later, we were ready to go. I've been on it for almost 2 months. I wasn't convinced there was much of a difference until about 2 weeks ago. I'm still frequently symptomatic but it hasn't been nearly as intense. It's hard to know where one thing ends and another thing begins sometimes because I also have SCT w/chronic constipation (haven't had a bm without a large volume enema in nearly 11 months). It took being referred to my local academic healthcare system to finally get answers, despite having received the GP diagnosis 2.5 years ago.

I do appreciate that you follow the bit that sounds like it would be hard to do (avoiding carbonated beverages especially) with the bit that sounds like it would be much, much worse (the tubes). It helps put things in perspective

I just got diagnosed with celiac disease and gastroparesis today. wish me luck and helpful tips! lol

What I took away from from this video was how to pronounce “satiety”! As a dyslexic, thank you!😊

Reglan nearly killed me. I was on it for 3 days. By the end of day 3, I was mostly paralyzed from dystonia and I went 18 hours unable to pee. I was on the verge of calling 911 so I could GI to the Er and be cathed when my bladder finally worked. My brand new roommate (I literally started the drug on day 1 of my drive to my internship) had to help me to the bathroom. It took 4 weeks for the blurred vision to fully resolve and 4 YEARS for the bladder issues to fade. Domperidone, on the other hand, is tucking awesome. I have it shipped in from England as US pharmacies don’t sell it but it’s totally worth it. I don’t need gastric stimulants daily as I can mostly manage entirely by watching my diet and listening to my body. But when things are bad, I know I have domperidone to fix me right up. (We’re not 100% on what caused my GP but I’ve had it since infancy, though it wasn’t diagnosed until I was 16 or 17. Hence why I’ve gotten very good at dietary control over it. But my entire GI tract is lazy. My GES sucks, I have GP and GERD, and I have IBS-C. It runs in the family so to us it’s normal and we all use minimal meds to control everything.)

Watching this while I'm preparing to get my 2nd GES. I have gastroparesis from a mitochondrial disorder. I'm mostly feeding tube fed but try to eat as tolerated.

Really informative, thanks!

I have this! The emptying study was the worst. The eggs with tracer were delish but laying on the scanning bed KILLED ME. It was super narrow and uncomfortable. I had pinching nerve pain but was too much of a wuss to speak up. I could barely walk for a few days after

Love the educational vids! More please :)

I was diagnosed with gastroparsis and put on Reglan without any test being done. I eventually went to see another gastroenterologist and then another and another and another and another…blah blah, I was diagnosed with IBS and then my new GP, God bless her, made them sort things out with me. Reglan and gastroparesis are nothing to be messed with. Both are crippling. I was not told the side effects of Reglan until the second doctor. “Oh…well…I guess you are okay.” Jesus Christ. I have seen so much malpractice and negligence in medicine in my own life and I literally forgot about this.

Excellent explanation

I'm on a med that can cause gastroparesis. I was put on it by a doctor to treat what wasn't really pre-diabetes but since both my parents are diabetic they treat anything outside of the normal range more seriously. But it's technically a diabetes med. I'll be off it in 6 months as a year long course to correct my numbers is what my doctor wants. But it's so interesting that diabetes can cause this as well as the meds to treat it

Really Nice! Thank you 👏

Do more informative videos like this!!

I have a G tube and a J tube for this reason, absolutely glamorous

Thanks Doc.

I have GP and Intestinal Dysmotility. In my case, it’s because of Ehlers Danlos Syndrome, and I actually only got diagnosed with EDS after we found out about my GI issues!

Gastroparesis has been one of many on the list we’ve been looking in to because I’ve had GERD and IBS for years but now, things have gotten so bad for months this year I’ve gone without eating solid food because it shoots back up, with or without acid, causes me to gag and then vomit. It got so bad at one point I was hospitalized for dehydration because I couldn’t keep fluids down, even plain water upset my acid reflux. Protonix has help, I have to take it in sprinkle package form because I can’t swallow pills they get hung or come back up. In the ER I saw a GI who basically said idk and walked away, other doctors dismiss everything I tell them as just being caused by my anxiety even though I’m on medicine to manage that, and I’ve had all the tests, A barium swallow study, an endoscopy by a surgeon because no GI was available for months, a modified barium swallow with a speech pathologist. Others just say lose weight, like do they even understand how hard that is for someone who doesn’t have the energy to hardly stand and clean a room for ten minutes because I can’t eat the calories I need to have any energy. I was at 280 at the start of all this in March/April and now I’m at 230ish, and nothing has changed. The PPI Protonix helps some but it’s so expensive and slowly digestion down so my bowels aren’t moving fast enough but if I take Reglan it causes my IBS to act up and I’ve got the shits for the next week. My asthma feels like it has gotten worse, but the pulmonologist says it’s fine. My sinuses cause more phlegm to pour down my throat and I have to clear my throat ever few minutes. When i say this reflux is bad, the acid doesn’t necessarily accompany it, but the slurry of stuff I’ve eaten, it will gush right up my throat without any resistance. Like one second I’m good the next I’m coughing because a surge of liquid just filled my throat and mouth. There aren’t any structural issues according the surgeon who did my upper scope, no hiatal hernia. But my esophageal sphincter must not be working properly if stuff can just come and go from my stomach as it pleases. Some is supposed to close down there. As for my bowels, either I have large impacted stool that I legit have to glove up and manually break up or I have straight diarrhea. I could eat something, be fine, then five plus hours later both my acid/reflux will act up or my bowels will start to act up. Most doctors either don’t know what to do to figure out this issue, don’t care enough to try, think me continuing to starve will help because I’ll lose weight, or it’s all in my head. Can I please find a doctor that actually gives to fucks if I live or die and will help me figure out why my body is trying to self-terminate.

Super interesting!

It sucks. I was diagnosed 3 years ago now. It's been a long road!

I remember when I was doing clinicals at Denver Health. We had a couple gastroparesis patients in a few hours and they were just miserable. I felt really bad for them.

It tells you how great this video is when the comment section becomes very informative as well... #shocked.

My mom has this. I have crohns disease and they just found out I have it too. I also have numerous gallstones which also runs in my family.

Love your info

Domperidone is such a two edged sword. It does wonders for stomach support but then because it works so well for so many hours after taking it, I get hungry quicker and then I have to REALLY try not to instantly fill my stomach again and cause the problem to cycle. 😅

I had Cushing's from a tumorous adrenal gland that was removed in January '21. Now I am having a bunch of these symptoms.

I have GP and SIBO. Newly diagnosed. It is a nightmate, at best.

Ooh thank you for all this great info. Is it rare (gastroparesis)?

I wanna get that exam done cuz ever since I got sinusitis and costochondritis I feel full with like a mint and a glass of water and I always have nauseas.

I have what we suspect is gastroparesis and I did this study almost a year ago. The thing is my radiology tech gave me who couldn’t eat anything let alone 2 whole eggs a TERRIBLE time. He was really rude and when I broke down crying knowing I wouldn’t be able to eat that much and scared that the rest wouldn’t work he got mad at me for crying. He told me and I quote “this isn’t a restaurant. Eat it faster or the test won’t work. If you vomit do it in the bag or it’ll be a radioactive MESS in here.” And I was only able to get 3 Nickel size bites in. After 3 hours that small bit was mostly but not fully processed and I was told to leave. After the test my doctor dropped me as a patient and told me to “never contact us again” as I was dying from malnutrition. We later found out the radiology tech LIED on my report claiming I ate a whole egg WHICH I DEFINITELY DIDNT. So my doctor thought I was anorexic or bulimic and didn’t want to see me anymore. That was just the tip of the iceberg for my shitty year of almost dying. 😭

Guess I'm calling my GI doctor! I just got sick everywhere last night noticed food making an appearance that I ate 8 or 9 hours ago! Ahhh, TikTok! Saving one stomach at a time!

My mom got diagnosed with that last year I feel so bad for her nausea is the worst feeling in the world and she's nauseous more often than she's not

My pain meds caused mine. At 4 hrs I was at 87% so they said I was markedly delayed. My main issue is my nausea and vomiting (when it super bad). During my worst flare I was puking non stop for a month and lost 50lbs and Couldn’t eat. I got a NJ and the were about to do a GJ but my central line got infected like 3 days later and I went septic. I was hospitalized for a month. That CLASBI infection caused all my teeth to fall out then 2 weeks after getting discharged my SVT/ ATACH began. That lead to SSS and bradycardia. It took 6 years for me to just get my pacemaker and fix all that. Now the only way to get relief for nausea is IV phenergan or Benadryl. When it’s really bad or PO phenergen when it’s less intense. I also have PONV.

i have full intestinal failure, and am dependant on parental nutrition (TPN). it's not a easy journey to be on to say the least.

I had this done once. Turns out I didn’t have Gastroparesis, but I nvr found out the chase of the nuasea. It just went away one day

Yeah, 😂 that's me. I'm having symptoms right now!

What can't more docs actually know about this and treatment options? When I was diagnosed at 18 I was told to eat donuts and milk shakes by Mayo docs.

Also there are other conditions that can cause it like Ehlers Danlos Syndrome that’s my main cause. I’m now on TPN as failed tube feeds due to intestinal failure

This is a semi common comorbidity of EDS. A lot of us struggle with GI problems due to this connective tissue disorder.

You should try Desmopressin 0.1-0.2 mg to retain Water Balance and help gastric emptying...! Note : Assure Smoking cessation while on Hormone Treatment for best results...Good Luck!