Getting through high school with GASTROPARESIS
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- Опубликовано: 16 июл 2024
- Gastroparesis can be really difficult to deal with, and especially in high school . . . and even more so when it's hard to share what you're going through. Thanks so much to Savvy for sharing her story with gastroparesis!
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The views expressed in this video are my own and do not reflect the views of Mount Sinai Hospital.
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WHAT’S EHLERS-DANLOS SYNDROME?
The Ehlers-Danlos Syndromes (EDS) are a group of more than 13 genetic connective tissue disorders that affect the joints and ligaments, blood vessels, gastrointestinal tract, and autonomic nervous system, among others. The most common type of EDS is hypermobile EDS (hEDS), which used to be known at type III. Some of the most common symptoms and co-morbidities of hEDS include chronic joint pain, joint instability and dislocations, dysautonomia, and GI tract dysmotility.
MORE INFO ABOUT EDS:
🧬 www.ehlers-danlos.com/eds-types/
🧬 bit.ly/2N95xTE
MORE INFO ABOUT POTS:
💓 www.potsuk.org/what_is_pots2
❤️ cle.clinic/2p1lByR
MORE INFO ABOUT GASTROPARESIS:
💚 mayocl.in/2BRQTuR
MORE INFO ABOUT MUSCLE TENSION DYSPHONIA:
🤍 bit.ly/2MLUYXI
FTC Disclaimer: This is not a sponsored video.
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#gastroparesis #delayedgastricemptying
I’m in college and living with gastroparesis is hard also the medication just makes me so exhausted to the point where I can focus .
Sorry you're having to battle the side effects of the medication. I can relate to that. My doctor ended up switching me to Mestinon (Pyridostigmine) to treat my gastroparesis and POTS, and it also reduces fatigue. Even though it's a 75-year-old medication, it's a newly repurposed medication to treat gastroparesis. It's the best medication I've ever been on.
Ugh sorry to hear this. It’s so hard to choose between symptoms and side effects. Zofran makes me really tired and sometimes I try to push though without it when I have work to do for this reason. I’ve found prochlorperazine makes me way less tired, but I know it’s not always easy to find a med that works with fewer side effects. ❤️
@@krupapatel4277 nope I had multiple test bc my symptoms aligned with gastroparesis my doctor focuses on gp and I was already losing weight and showed dysmotality in my colon too I have full GI dysmotality. I was on tpn and now I’m tube fed, I am getting my tested for heds next month
@@krupapatel4277 I’ve had multiple blood test I’ve had multiple test throughout my GI tract , my problems are more than likely related to genetic issues due to Eds it’s also what the RUclipsr has , my gastro issues aren’t new they’re reoccurring this time it’s just worse. I don’t have sibo I have dysmotality throughout my GI tract, Dysmotality and EDS often occurs together thx tho
Sorry to hear that, hope you're doing better.
New subscriber❤️ my sister has gastroparesis and I’m really worried about her I pray she gets better everyday I’m praying for you too I hope you see this and know ur not along if you need to talk I’m here much love and prayers
Have a family member that struggles with this, thanks so much for the video! always fun and informative.
I had to look out of state for a GI that would listen. I am doing the smart pill test next week to check out what's going on with my stomach. Thank you for all you do with your channel. It has really helped me advocate better for myself
Hi! I found your channel through a link in some reddit comments and I have found it particularly helpful hearing some day-to-day perspective and commiserating about the full spectrum of issues related to EDS. I was wondering if you have made a video in the past about --or plan to make-- a video about online communities/support for people with EDS to commiserate. I find it incredibly difficult to find people who can relate to the daily experiences.
Love the interview!
Good video- interesting to hear from someone who has gp but not EDs- I’m assuming she doesn’t ? At least 6 months is not that bad a wait at all. Mine took several years. Btw I only just learned that steroids are really bad for us xebras/ which explains why they never agreed with Me!
Great interview! Such beautiful girls - strange how it can happen to young people. Seems that the condition was "Idiopathic" (cause unknown). Based on my experience and understanding - it can be a red flag for a spiritual issue that is in your generational lineage. These are also known as familial diseases that are hereditary, passed on from one generation to the next.
From the start to the diagnosis: 6 months. That’s a long time for a teen.
2.5 and going for me
Years*
So I’m 32 and only got my official diagnosis of gastroparesis when I was 31. I always complained about bloating my entire life but it always got explained away as something else. Like It was side effects from medication or antibiotics and then when I got older they said it was pms related and that I could have endometriosis. It was only discovered on fluke because I had to get a colonoscopy and endoscopy because I tested positive for a cancer gene. I’ve also since done a gastric emptying scan as well to confirm. And even though I have my diagnosis I can’t get my gastroenterologist to give me a treatment plan that works for me. I’m having bad reactions to the “first line” medications.
Great video. A few days ago I had an upper GI. I for a long time have felt that I have some form of Gastroparesis but had no idea what it was before watching Jaquies and your videos? I know that I have had problems with acid reflux and have had a laparoscp[ic Nissin back in 2003. I still have had many problems where I feel like I have had many of the same symptoms but because they don't follow everything listed in the doctor's textbook I feel like I have to prove to doctors that I do and I hope when I talk to my doctor in a couple of weeks that he can give me a real diagnosis not come back and tell me that everything is normal?
My main recent symptom has been acid reflux. And no one matches every symptom, it is not a checklist. Just be firm you want to be tested for it.
Take care, she’s given away her date of birth via age and birthday at the 6:20 mark…if there’s any way you could edit or otherwise cover it up it might be sensible from a hacking perspective.
Great video, I can certainly relate!
did either one of ya'll have undigested food in your stool from gastroparisis?
Was the medication mestinon? Used for myasthenia gravis
I’m getting the Gastric emptying test soon cause I believe I have developed Gastroparesis. Been nauseous for a month now. Did your friend ever figure out what she took that helped her?
try to get the pill cam with all the sensors on it, that test is superior to isotope test and doesn't expose you to radiation.
I think I may have mild gastro paresis. Since I was born I threw up after meals, severe abdominal pain, nausea etc.
I was diagnosed with GERD and I’m hoping to have a gastric emptying scan.
I have flares where I can’t eat at all so I just live off of ensure drinks. My weight is always fluctuating.
Any other weird symptom is my body not being able to get over food poisoning, both times I’ve had it I’ve ended up in hospital and it’s taken 2+ weeks for it to leave my body rather than the typical 24-48 hours
Have you checked vitamin D , magnesium and calcium , etc .
Helps with Gerd.
And you should get plenty of sun as often as possible . 🌞
Also apple cider vinegar .
Only a teaspoon at a time with water. ( they say before eating)
Also , it sounds like you may possibly have low stomach acid. Do some research …
Hi. I'm sorry to bother you. I'm having a bad flare or so they say. Been to 4 times lost 10 pounds stomach severe pain can't eat anything any advice?
They won’t even test me, because of my weight. I got an endoscopy and the doc said, ‘you don’t have gastroparesis”, but “I feel nausea, I can feel food coming up my esophagus…” PA “you THINK it’s food, but it’s just Acid,…”, me, “my stomach hurts and has always hurt if I eat a full meal.” , “we don;t know what you have yet, but it’s NOT gastroparesis…” Judged because I am not puking and not underweight. In happy news, beta blocker has helped… dx with POTS. Everyone thought that I was anorexic until I was 35… an yeah… I never chose to not eat, also worked out everyday, but my stomach issues were everyday growing up and into adulthood. Without help, just eating smaller meals and healthy shakes are amazing, so at least eating as recommended for this disease has alleviated my symptoms… I just cannot eat too much! Avoiding fried foods, etc…
I’m obese and my symptoms line up I’ve never tried to get diagnosed because I’m young so this just started happening about 8 months ago but I looked it up and many patients are overweight or obese. I would say I throw up 3-5 times or more in a week weather that be involuntarily or me having to get rid of some of the pain (which is horrible as you know). I wish doctors would look past weight with certain situations and just test us. Better safe than sorry right? I think my weight gain is due to not being able to eat much and when I am able to like on a day where it’s not bothering me as much I will eat too much, I was also obese before any of my symptoms appeared and I can’t do much due to joint pain and fatigue. It sucks but I definitely agree with not eating fried foods I used to love fries, burgers and soda but the pain it causes has made me stay away and even tricked my brain into thinking I don’t like them.
They didn't do a gastric emptying test? That's how doctors test for gastroparesis. They put radioactive dye into eggs or some other food, the patient eats them, and they take quick X-rays every half hour for two to four hours.
@@Dulcimerist 39 today, and many… surgeries health problems past 9 years, and yep, doctors Lie sometimes and do stupid stuff! My appendix was bursting and I was diagnosed with gastritis- sent home with carafate, cost about 100 dollar, (should be dx with an endoscopy, he did NOT do that or ANY testing, nearly killed me, sent me home with pain meds, no joke!). That said, being 5’6’ and 169lbs, albeit more muscle than I have ever had (and I was a dancer fir many years), and yes I have more fast and…. Major swelling in my legs, but I have POTS and major surgeries I know made it all so much worse; to answer: NOPE no radioactive testing to watch if it my stomach is paralyzed partially, just an immediate dismissal! ADD: PA told me, “only diabetics get gastroparesis…”Told her clearly it IS common with EDS, ignored, no test.
@@artsychica82 Get a second opinion. That PA is incompetent, thinking only diabetics can get gastroparesis. People with Parkinson's can also get it, although they tend to have more issues with their intestines than stomach.
Your best bet might be to try to get on Mestinon to treat your POTS, since it can also treat gastroparesis. By the way it sounds, that might be the only way you get your digestive issues treated.
@@Dulcimerist Thank you!