My Gastrointestinal Issues living with VEDS (Vascular Ehlers-Danlos syndrome)

Let's talk about my GI (gastrointestinal) issues with VEDS! My issues may be worse than some, but better than others. And this is just a patient perspective.

[@maryamp1867]

Thank you for your videos ❤❤❤❤❤❤❤❤ I just got the diagnos eds and my little dotter is having so problems with the digestive system so she probably is also eds 😢 From my heart 💓 thank you for cheering ❤

[@BadgerX153]

I was just recently diagnosed with VEDS and the GI issues sound so familiar to me. I have had so many of the same problems. I used to have the same problems with constant vomiting and was treated with stuff for GERD. I have since been diagnosed with both GERD and IBS (which vascilates between constipation and diarrhea for me). While it sucks going through this, at the same time, it is also nice to have something that is connecting all of the issues that I have been dealing with for all my life.

[@TranslucentOne]

That feeling is real. Have you connected with anyone else with VEDS yet? There’s a sizable Facebook group, as well as support groups through The VEDS Movement that meet virtually ❤️

[@BadgerX153]

@@TranslucentOne I have connected with a general EDS group, but not a specific one for VEDS. I sort of feel like I have imposter syndrome because while I have a lot of the symptoms, I don't have a lot of the extreme stuff as much. I have never had the dislocations or more obvious issues. I just have all the underlying issues like the GI issues, insomnia, lots of back issues, general pain, headaches/migraines, and POTS though every times the doctors have done testing for POTS they never come up with something conclusive.. just that I often have dizzy spells when I stand too quickly and sometimes have had fainting spells from it.

[@TranslucentOne]

This reply got buried for me and I’m sorry about that. Look on Facebook for the VEDS zebra group. I think you’ll find people there who relate ❤️

[@heathy1364]

Thank you so much for sharing Katie; what you described sounded exactly like me! I don't feel so weird now. Like everything else in our lives we have to figure out how best to manage our conditions.

[@TranslucentOne]

So glad you don’t feel weird now! That makes me feel less weird talking about these things too :)

[@LilacOfABetterWord]

I have some sort of connective tissue disorder, but haven’t been able to get genetically tested. I’ve dealt with a number of GI symptoms that are very similar to yours and also greatly exacerbate my comorbidities (like my dysautonomia). I’ve been dismissed by a number of physicians and have started trying to piece things together myself. My first findings were abdominal vascular compression physiology (MALS, SMAS, and NCS) in a CTA that could explain a lot of my GI symptoms and flares, and even the severity of my dysautonomia and venous insufficiency. I still don’t have these definitively diagnosed in my chart, but I finally have a doctor willing to try to get me to the right people. I hope that you have some more answers now than you did before, and I’m so glad you have antiemetics! Sending love ❤

[@CrazyEightyEights]

Thank you. I remain undiagnosed for the nonce, but there is almost zero doubt I have EDS. Hyperemesis, usually associated with pregnancy (gravidarum hyperemesis) or cannabis overuse, can kill people like us. Discovering ondansetron ODT was nothing short of a miracle.

[@sonias9722]

so cute, when you quoted your mom your voice turned so soft ☺️❤️

[@TranslucentOne]

She’s a sweet person! :)

[@gppoem3344]

I’m really grateful for your videos. I think I have EDS. My genetic test isn’t until October 2024. The wait to know is rather driving me nuts. Anyhow, thank you for posting your videos. 💙💙💙

[@TranslucentOne]

Hey I’ll be keeping you in mind! That period of waiting to know is so so difficult. Hang in there! ❤️ glad the videos are helpful :)

[@demaupin]

Thank you very much for sharing this despite it being uncomfortable to talk about. I have _so many_ signs of veds, but only started to suspect it after a diagnosis of pots. I hadn't heard about how veds affects digestion, and this was another piece of the puzzle for me. Your videos have helped motivate me to get my health insurance in order, so that I can hopefully get tested. I have to admit it's very scary because I'm at an age that's close to the life expectancy for veds, but I know it is better to know and be able to try to manage/avoid dangerous events than to not know what is going on. Thank you again & all my best. Salud.

[@TranslucentOne]

Hi there! I’m glad you’re on the way to answers and I hope you can get tested. I also hope you don’t have it! But if you do, please throw that life expectancy number out the window. There are published survival rates but not a true life expectancy, and even those survival rates may not reflect the situation today. In addition, those numbers may be skewed towards people who were identified because of life threatening events and don’t account for all the people who don’t know they have VEDS and weren’t included in the research. Finally, if you do have it, there’s a growing community out here ready to welcome you and a lot of resources. 🤗

[@whistleyourlie]

Hi! I've watched you for a while. I was diagnosed with hEDS recently but I wanted you to know your totally not alone. Constipation and nausea are such a problem for me too. Cutting out dairy and gluten seems to help in my case but I had to laugh when you mentioned cheese. I feel like I could eat a whole block of it some days.

[@TranslucentOne]

Haha thank you! I really got into it when I moved to Washington state. Such good cheese from Beechers. Hard to pass up in cases like that!

[@memesissydollar3080]

Keep up the good works !

[@TranslucentOne]

Thank you!

[@ffssheeple]

I can't believe that it took so long for you to have the relief of nausea medicine! Sometimes I am astonished that doctors ignore or don't explore symptom relievers sooner.. 😳 Glad you are now able to use this type of medicine to help on bad days! 😁

[@TranslucentOne]

Thank you! I was literally shocked that it existed and I could have it at home 😂

[@Wheeled_Fighter]

Since birth I have had GI issues, I stopped counting medical facilities visits 30 years ago. I had 2 colonoscopies by age 15. The thing that brought it all to light was, me swallowing part of a hotdog and it becoming stuck 12/24/05, Visit to Mayo Clinic ER, vomiting blood in the waiting room and coding there and in the OR. Long story short, they found celiac disease, IBs, EoE and Dysphagia. Most recent was primary Dysautonomia, it seems like we are going backwards with symptoms, the little things are being found first. Where many people who lead typical lives are diagnosed with dysautonomia first and the rest shows up later. I did the vegan diet for years and it's what actually kept me alive. I was consuming right around 60 grams of fiber per day. I found that vegan protein powder, frozen bananas & blueberries and hemp protein made into a smoothie, got me a lot of fiber. Followed by 1/2 lb of salad for lunch and dinner. 1 head of lettuce per day. Not to be TMI but my bm would happen twice in the mornings and that was it, completely evacuate my gut. Constipation was rarer than hens teeth, provided I stayed away from cheese and dairy products. I could never drink milk without throwing up. Consequently my favorite food was salads and I'm allergic to it now, my esophagus will not push it down and will become inflamed upon contact. 😢 I feel for you and the GI issues, it's one of the more impossible to believe this is happening and you come to a conclusion that you list the foods you can eat and no longer the ones you are unable to eat anymore.

[@crimsonrose4648]

I've had many similar issues that you've mentioned outside of the dairy issues. I actually pretty much live on milk at times because my body rejects everything else. But yeah your symptoms kind of sound like gastroparesis, especially the vomiting undigested food part. I have MCAS and suspect that I'm developing gastroparesis especially since it is more common to develop it with connective tissue diseases as well as mcas. There's also pseudo obstructions that can happen for various reasons like IBD you might be able to look into. The suggestion about eating first thing you get up would be impossible for me cuz that's when my stomach is at its worse but I'm glad it works for you.

[@TranslucentOne]

Thanks for the tips and I’m sorry you deal with similar issues!

[@aliciaspaltner5654]

Hello, Katie! I'm seeking an EDS diagnosis and praying for genetic testing to confirm it very soon. I have the acrogeria of the hands. Like our hands are almost identical and a side by side picture of yours and mine made my mom say "WOW!!" I have Raynaud's Syndrome and my veins literally hurt all day long every day and have since like 12 years old. So I'm thinking I have VEDS and preparing myself and family for that news. But what really prompted my search after all these years were recent episodes of severe bouts of vomiting and diarrhea...like for 12 hours at a time. An RN friend has EDS hypermobility and "gastroparesis" because of it. The gastroparesis info was crazy accurate for all my problems since childhood/adolescence/now.

[@TranslucentOne]

Hi Alicia! I really hope you get answers soon! I have Reynaud’s as well, and while I don’t have a gastroperesis diagnosis I do often wonder if that’s a name for something I’ve dealt with. I truly hope you find the answers you are looking for and wishing you the best. If you do have VEDS, we have a very supportive community out here! Thank you for visiting this channel and reaching out! ❤️

[@alienorfrei6867]

Have you looked into gastroparesis? I know it’s frequent in EDS (I don’t know about vEDS specifically, though). I’m saying that because of the undigested pieces of food hours after eating. That’s a big sign of it. I don’t know if in the case it was that it would change the management of it, but it might be interesting to investigate 🤷🏻‍♀️

[@TranslucentOne]

Hey thank you! I’ve thought about that and wondered if that was going on when I was younger. Now since it hardly happens anymore I am not sure if I will ever know positively.

[@ErynRea]

yeah I was thinking the same thing, I think it's somewhat common among those with EDS

[@paulstetzelberger3014]

Hey girlie! I’ve been deep diving trying to figure out what’s going on with me. TIA’s is what I think but then came across your videos. I just might have what you do😢 I have same skin (little tanner), hyper mobility, GI issues my whole life- especially lactose, alone eyes, small nose, older looking hands. Like seriously, it’s freaking me out but also giving me hope of finally figuring things out. I’ve had so many test done, probably a million dollars to doctors. It’s crazy! Any ideas what I could do to accelerate testing?

[@TranslucentOne]

Hey! I hope you don’t have this but there’s a supportive community here if you find out that you do. I have another video on getting tested for VEDS kzbin.info/www/bejne/qanHl5-KpbJ9gtUsi=2QzZV68r-2-3ZeI8 I hope this helps! It’s a tricky arena to navigate depending on where you are, medical access, local knowledge, etc. wishing you the best!

[@Northern-Sounds]

✌️❤️🤗

[@cosmicalchemist8219]

I have similar issues. For me, I’m usually regular if I avoid all gluten. If I eat even a little bit, I’m SO sick! I accidentally ate some a couple years ago & I threw up for 2 weeks straight. The worst part of it was the local ER wouldn’t take it seriously & decided I couldn’t possibly be that sick from gluten, they decided it was from using marijuana & gave me haldol. I had to keep coming back for a few days & every time they tried giving me psych meds instead of helping me with my real problem.

[@TranslucentOne]

That is so frustrating! I’m glad you know what causes it

[@heatherknox4002]

I was in a hospital for depression and a girl I befriended was 17 and tried to die because she had the hiccups for nearly a year and she had so many health issues and no one believed her.

[@TranslucentOne]

Ugh that’s so sad! I hope she found answers ❤️

[@heatherknox4002]

@Katie Wright I hope she did, too. We haven't been in touch since MySpace days but I'm hoping if she does have EDS she found out. She had other issues as well health wise. My daughters and I are all diagnosed and we found out my mom likely had the vascular form, undiagnosed. Decades of doctors just telling her there was nothing wrong because the tests said she wasn't a horse and they weren't looking for the zebra.

[@zrational7882]

Hey katie please help me I have many symptoms like you but nobody will believe me .I live in a developing country and everybody thinks am crazy

[@juliamartin1962]

i have veds. i have an inoperable balloon brain aneurysm and another one in my chest. im having problems with my gi tract. its either diarrhea or constipation..no middle ground. it sucks

[@TranslucentOne]

I’m so sorry you are going through all that! ❤️

[@melissafarrugia9531]

Have you got allergies at all known about? I’m allergic to casein protein in dairy and goats cheese, eggs, and citric acid that’s ( 330 ) can’t tolerate corn at all, similar with avoiding orange juice I’ll always opt for apple and blackcurrant. Also adhesives on dressings for wounds and bandaids cause reactions. Apparently allergies and EDS go together ( another thing to deal)

[@TranslucentOne]

Hi! I don’t have any food allergies that I know about. I’m allergic to all sorts of environmental things though

[@amyrenteria4442]

Have you been checked for any vascular compressions like nutcracker, SMAS, MALS, etc.? Seems like a lot of connective tissue folks have these problems and they can lead to the digestive problems like you’ve had.

[@TranslucentOne]

I don’t have any of these. I think they would’ve showed up on the many CTAs and MRAs I’ve had. But I know there’s research suggesting that a high percentage of people with VEDS are dealing with these GI problems similar to mine. Thanks for reaching out!