hello and welcome to my channel !! here I pretty much just document and share what life is like as a twenty-something with eds and a handful of other chronic illnesses. hope you stick around :)
Had one done today and personally (this is not an attack) I think it may just be a placebo effect you tasting anything. Radioactive tracers have no taste as all they are are mostly water with some of it's atoms replaced by radionuclide. They stopped at the 90 minute mark stating they had enough data despite my stomach being half full still which is concerning.
Had this done about a week ago. By the time the 4 hour test was done I had not eaten or drank for 16 hours (except the egg white and toast). Of course I had no problem getting that through my stomach. It's a normal size meal that includes at least a little fat that makes digestion difficult. Take something to read.
My 14 year old who’s previously had an ND tube with moderate-severe gastroparesis and previous SMA syndrome (along with classical EDS, and POTS) needs a G/J tube placed. She’s failed all motility drugs. How long did you have to wait before your physicians decided you needed the surgical tube?
I think I'm weird, I thought the eggs tasted fine, haha! I got egg whites actually, and they had salt and pepper which I absolutely used. Voila! Easiest study I've done by far. Good luck to anyone getting it! You've got this.
Lauren thank you so much for sharing all these details with us. Can I ask about how much it costs for a week there? Just doctors and labs - not including hotels, meals, travel… I might need to go get a diagnostic and not sure what to expect (and we don’t have insurance that extends outside my state, in states where Mayo is available). I hope you are well!!! ❤
Thank you for letting me know! I have no idea why it uploaded like that, the film and editing didn’t show the weird flashing at all. I’ll try fixing it or take it down if I can’t 🫣😳
Hi Lauren. I got diagnosed with Gastroparesis in February of 2021 and my gi. Specialist told me that there was no cure or treatment for it. If I got treatment like your doing I think I would feel so much better. I want to thank you for your videos on RU-vid. Sincerely Margaret.
This video was ages ago but I want to know how to pass through the resistance . I feel like I’ve tried every tip out there and would rather manage it myself than bother a nurse … please help 😢and well done !
I have had a lot of health problems this last year and had an NG until October which is when I got my G tube. I’ve not had a change yet but am VERY due for one. I’m so terrified about it. How do you know you got it all the way into the stomach and didn’t just move the stomach out of the way? I can’t feel my insides and so I think I’d just miss my stomach and have to go to the hospital. My nearest hospital is 30 minutes away so it’s much harder to feel comfortable with changing it myself. 😭
Hi! I go to the Mayo in Jacksonville. Can I ask a question if you don’t mind sharing? Was your gastro appointment with a actual gastro doctor or a nurse practitioner? They only let me see a nurse practitioner and I’ve never seen the doctor. Mayo told me gastro patients at mayo never see the actual docs because all they do are procedures? Is this your experience in Minnesota? Hope you’re doing well and I love your videos.
Hey! In MN I have an actually MD doctor who manages my care and I see whenever Im there. His NPs are the ones who answer my messages and calls for last minute things. Hope that helps!
Hi Lauren, Thank you for sharing your healing journey with us. I love, how you show everything without sugar coating. Keep it up girl! You are so strong!
It must be good to get back from Rochester. I personally have not had to be in hospital for myself, but been in there helping others. People who aren’t around hospitals a lot have no idea how many sick people there are in this world. That’s why I like to call it “Hospital World” , you have to go into a hospital to understand the reality for so many people like yourself who have to spend so many days and all the appointments that do wear you out physically and emotionally. Much respect to you for what you have to deal with and letting us understand what this illness entails.
I have similar issues with my stomach, the thing that helped me immensely was an NJtube/Jtube. Anyways, I really hope things get better for you! Great video♥️
I am surprised the doctor didn’t discuss having the tube changed from a gtube to a gjtube so you can do jtube feeds into your intestines instead of your stomach. Praying things improve for you gastroparesis is no fun for sure -fellow GP and EDS warrior
