MidnightMoonWolf :D Yep. Those are the kind of people who would never be able to handle something like this. Hope no one in their families is ever made to suffer because of the bad karma those creeps put out there.
Sorry your daughter has POTS and Gastroparesis. Has the doctor tried her on Mestinon (Pyridostigmine) to treat both conditions? I have both conditions, and my doctor put me on Mentinon since she could treat two issues with a single medication, so I could be on fewer medications overall. It's a 75-year-old medication; but researchers at Mayo Clinic have repurposed it as a new gastroparesis treatment (and also to treat IBS-C and intestinal dysmotility), and researchers at Vanderbilt Autonomic Dysfunction Center have repurposed it as a new POTS/dysautonomia treatment. It's also currently in clinical trials to treat Chronic Fatigue Syndrome and exercise intolerance. Mestinon has been a miracle cure for me. Hoping your daughter's doctors can find treatment options to help your daughter! Has your daughter been screened for hypermobile type Ehlers Danlos syndrome (hEDS)? That condition often causes POTS and gastroparesis.
After seeing your story, I felt I needed to tell you about my coworker. I am not sure if others have mentioned this and I certainly do not want to get your hopes up, but my coworker also has the same condition. She was able to find a doctor in San Francisco who did an experiment with a pace maker style device that allows her to eat normal foods as long as they do not contain any fat. She has had the device for many years with no issues. I hope you see this and I hope it helps. Keep you head up!!
I just went to the Cleveland Clinic and saw Dr. Cline for the first time on Tuesday for my gastroparesis! I have a smart pill test scheduled for June. He found my hEDS SO fast. I'm looking forward to working more with him! Thank you for the video! It's so comforting to hear from another young person what it's like to live with a chronic illness. Keep your chin up
Wow Hannah, that's quite a story! Not unlike mine. I just wanted to say that despite the ease with which people like us can get depressed and frustrated - you're (at least on the outside) managing to keep a positive outlook and demeanor and you're not letting these things really drag you down; cause it can happen very easily. Thank you for sharing your experiences - I like others, I'm sure, find strength from YOUR strength and positive attitude. Thank you, again, and I'm happy that you FINALLY have gotten some answers!
I just had you pop up in my suggestions and I’m so glad I found you. It’s taken me years to get to my current diagnosis, and I’ve taken various meds for loads of things I haven’t had too (including rheumatoid arthritis drugs for more than 10 years!) I have had stomach problems for years but thankfully not as bad as yours. I also have cEDS and POTS, (also endometriosis and cysts on my ovaries, I had to have it all removed because my uterus grew to the size of a watermelon and nearly killed me because I went into liver and kidney failure), a blood disorder, some kind of auto immune thing, etc... I thought I was just unlucky but I saw a geneticist (who diagnosed me with cEDS) and he said all the different things link to the faulty genetic mutation of the collagen. You explain things so well, I hope things get a bit better for you soon. 👍🏻 and subbed.
You are so inspiring! Keep going you will finally find you solution ! I’m diagnose with juvenile arthritis, POTS and recently diagnosed with PCOS and I still haven’t got over my problems but solving one problem at a time and I’m finally getting there ! I wish you the best of luck and your never alone xx
I came across your videos because for about 9 months now I’ve been feeling nauseous all day and I’ve gotten EGD’s and scans and all that but I can barely keep any food down. I’ve had to vomit in so many embarrassing places which makes me not wanna leave the house, and I was just told it’s anxiety or anorexia or just dyspepsia. I’m at the point where I’m not sure what to do anymore. Thank you for sharing your story! Your positivity is inspiring! I wish you all of the best with your health!
Im 12 years old and have been in pain for years my doctor and I have been testing for gastroparesis I have thought I have this for a while and I'm glad I finally have a doctor who believes me and I need a feeding tube but I'm scared I've been through so much and I love how open you are
Hi Hannah, Thanks for sharing your story. I have Peutz-Jeghers Syndrome and may have recently developed gastroparesis. I do not have a diagnosis yet but an emptying scan showed my stomach is slow to empty. I also have a lot of symptoms. Your story was very helpful. Your wonderful disposition in the face of such long lasting struggles is inspiring.
Thanks for sharing your story. I am glad you’re finally getting answers. It’s hard being told you’re wrong, or it’s psychosomatic. Sending much love your way 💜💜💜
K. I cannot apply wrinkle cream to my face, or where I have injuries throughout my GI tract seize simultaneously. My scattered injuries do not cover the entire membraneous tissue. I can wash with Cetaphil. I can also take Tylenol to balance lactic acid build-up due to a prolonged retension of food, which may feel the same but is not the same as paralysis. I can eat kiwi for its fibre, for regulation/easement, but not too much coffee because caffeine worsens exema - There is some on either side of my face whenever I react adversely/internally on the same side. I recently took a collagen suppliment for joints, and noticed more paralysis wherever there were injuries before now due to too-much tightening. I had hoped to repair myself when bloodwork failed to show abnormal inflammatory markers, which meant that 'there was nothing wrong' to my doctor. I still need surgery to help with hernia. The advice I have today is to avoid all face make-up, on the chance they have either paralytic or collagen in them. Milk for elastin replacement is also advised if you can maintain sufficient lactic acid removal. Try lactose-free if not. Ask you favourite doctor if oxygenation of membraneous tissue is an available option through beet-root suppliment. I can also reset when I have too much bloating or continuous gas with pro+pre-biotic daily gummie suppliment. Good luck. P.S. No onion, no mushrooms, ever. Carbonated softdrinks I can only handle on occasion.
Hi, I’m so sorry that you’re having to go through this. When I was younger I was diagnosed with gastroparesis and after many doctor visits and Misdiagnosis they said my stomach would not digest and told my mom to put me on a bezoar diet, and they prescribed me antacids. I have not gone on the bezoar diet but now that I’m older I kinda want to to see if it’ll make a difference. I don’t know what happened but I rarely feel the pain, like I maybe have an episode every 2-3 months or longer now, whereas before (when I was a toddler and up to my early teenage years) it was every time I ate. I would be nauseous every morning and thew-up most mornings. I now am low in weight and eat once to twice a day. I don’t feel the pain, but I do struggle with either not being able to go to the bathroom or not able to stay away from the bathroom. I usually don’t poop every day, maybe every other day, which in turn makes me feel bad and then I don’t feel like eating and then usually once I do use the bathroom, finally, I’m extremely hungry. Or I’ll eat something that upsets my stomach and have to rush to the bathroom (diarrhea). I somewhat know what your going through but then again your condition is so much more severe than mine ever was. In saying that, I am so happy that you’re trying to raise awareness!! We need more people like you to show the world what it is really like and not try to hide it.
Hi Hannah I have only been diagnosed recently this year with Gastroparesis but i have had it all my life but only been having the symptoms badly for the past 6 years and i have been on medication for the past 3 months to relieve my symptoms which is nausea and vomiting and not finishing and eating my meals and the medication has been working fortunately and im always back and forth to the hospital Hope all is well with you x
Thank you for sharing. I think my sister has this and since she has cut me out of her life, I am left in the dark about her health. But from what I remember growing up with her and then recent things my mom has disclosed to me, this sounds like the closest thing she has (among other things). She was told she was anorexic at one point too and had shared with me that she knew she wasn't and how discouraging that was for her. She is 30 now and I have no idea the life she lives. But these videos help me understand a little of her daily routine/struggles. So again, thank you.
I am happy that you found the right doctors. There are so many people who have put their trust in doctors and end up losing the hope that they had with doctors because they either don’t believe you and just diagnosed you with something else mental or medical or they go through a bad experience with that doctor and that doctor could no longer be trusted I understand all of that because I’m going through right now and I just it sucks that a lot of us have to go through that before we even get the correct answer.
Yes, EDS can cause the other issues I have. I also have some weird autoimmune thing going on as well though which they want to try and treat to see if that helps my symptoms. Because EDS is so rare, doctors aren't really sure why they're all connected so they don't really know how to treat them if that makes sense.
Do you have any advice for bringing up EDS to a doctor? Anytime I bring up something that could cause all my illnesses I feel like a stupid hypochondriac and I want to have confidence when I ask.
@@SimplyHannah98 Is your autoimmune issue Mast Cell Activation Sydrome (MCAS)? That's often related to EDS. I have hypermobile type Ehlers Danlos syndrome, but managed to not get MCAS. I have all the other stuff, though. Thankfully my doctor discovered that Mestinon (Pyridostigmine) has emerged as a treatment for both POTS and gastroparesis. That's been a huge improvement in my quality of life! Hoping your doctors can find better treatment options for you, too.
Great video Hannah! Very informative and unfortunately relatable. I hope the wait for your J-tube surgery goes quickly and you have a quick and easy recovery. I have had my j-tube for almost 12 years and though it took a few months and different types of j-tubes to find what works best for me, it has been a life saver! I hope it all goes smoothly and I know it is hard not to be anxious and nervous, especially having had so many things not go to plan for you, but hang in there I am sure in time the decision to get a j-tube will pay off! Stay strong and thanks for the amazing videos, it is so nice to see someone going through some of the same things and continue to be so positive!
It is so weird how it works with gastric emptying studies. Everyone assumed I had GP because of how sick I was and how I was unable to eat anything but a liquid diet for months after some viral infections. I have very rapid gastric emptying (I was wondering why they told me to go home very early into my emptying study!?), which is common in dysautonomia but less problematic than GP. I have rapid gastric emptying but when I am very sick I have constipation instead of the typical "dumping" syndrome.
I will never complain about my ulcerative colitis again. I thought I had it bad. I hope you're able to find some relief soon. Thank you for sharing your story. Not that It makes me happy that you have what you have...but it is comforting to know that I'm not the only one with gastric issues. Sometimes it feels like it.
My colon empties in about 1-2 hours. It's upsetting to see dinner again before bedtime. I do have Crohns with about 4 ft removed and resected. How do you handle hunger? I'm hungry all the time but it seems pointless to just throw money in the toilet every 2 hours. Imodium and Zofran have never worked for me. Your video wasn't all over the place if you were paying attention. 🙏
My stomach took 48 hours to digest food when I first got diagnosed with gastroparesis. I also have diarrhea and I can hardly eat anything without going to the restroom within 30 minutes of eating. I have to rely on anti diarrhea medication to literally eat anything without going to the restroom
You’re so beautiful! And I also have a ton of stomach issues I get nauseous everyday of my life and have stomach spasms and all that. But I can’t imagine what you’re going through. Stay strong! ❤️❤️❤️
I was told from the my G.I. doctor and nephrologist and neurologist that the digestive issues comes from pots everything that go on with nervous and digestive comes from Pots cause I have Gastroparesis , IBS , Exocrine Pancreatic Insufficiency -(EPI) and I was tell it all comes from pots and I live in Tampa FL. But I hope and pray you feel better soon
Sorry you have POTS and Gastroparesis. Has the doctor tried you on Mestinon (Pyridostigmine) to treat both conditions? I have both conditions, and my doctor put me on Mentinon since she could treat two issues with a single medication, so I could be on fewer medications overall. It's a 75-year-old medication; but researchers at Mayo Clinic have repurposed it as a new gastroparesis treatment (and also to treat IBS-C and intestinal dysmotility), and researchers at Vanderbilt Autonomic Dysfunction Center have repurposed it as a new POTS/dysautonomia treatment. It's also currently in clinical trials to treat Chronic Fatigue Syndrome and exercise intolerance. Mestinon has been a miracle cure for me. Hoping your doctors can find treatment options to help you! Have you been screened for hypermobile type Ehlers Danlos syndrome (hEDS)? That condition often causes POTS and gastroparesis.
I'm thankful for you doing your vlogging. I also have gp and it really sucks! Mine is moderate and do not need to a feeding tube but, I have a lot of friends that need sustenance from the formula and other forms of nutrients. Thank you again!!
I have been having the same symptoms for a year. Mine started after gallbladder removal and then appendix removal a month after my gallbladder. Also have severe vomiting, nausea, diarrhea, bloating, and pain. They diagnosed me w IBS for a year but treatment for that did nothing. I've lost 40 lbs in three months because it just continues to get worse. I've lost 50-60lbs in this year. It's frustrating because I can't keep anything down and nothing helps. I'm still slightly overweight so no doctor is really taking me seriously. Any advice? My current GI doctor has pretty much given up on helping me. I've also had a colonoscopy, many endoscopies, surgeries, so many tests and scans.
I really relate to not having doctors take you seriously. I have very similar stomach-related symptoms, but have yet to get a diagnosis as tests keep coming back normal. Sending love your way, Hannah ❤❤ You're really an inspiration to me, and the positivity in your videos really help me to keep going x
Thank you so much!! It truly means a lot. I'm so sorry you are going through this, but I PROMISE one day you will figure it out. I was so hopeless but then all of a sudden, it just took one doctor for the pieces to fall into place.
I wish I could sit and listen, this is something I wanted to hear but due to my disability, background music makes it so I can't hear what you are saying :( Yes there are captions but its never accurate or the same. bummer :(
If you disliked this video something is wrong with you she has been going through this 8 years and that’s how y’all feel y’all some ungrateful people what if this was you ,you wouldn’t want people to dislike your video you little ungrateful kids and I know it’s just kids.❤️❤️
I wonder why you didn't talk about the c diff. That surely affected things too. Very interesting stuff. I never knew much about gastroparesis. Now I wonder if I have that too. Thanks for raising awareness.
im on my way to probably be diagnosed with gastroparesis, pots and ME and im kinda terrified, my doctor called today and asked us how i feel about possibly getting a feeding tube and its so overwhelming
Sorry you might have POTS and Gastroparesis. Has the doctor tried you on Mestinon (Pyridostigmine) to treat both conditions? I have both conditions, and my doctor put me on Mentinon since she could treat two issues with a single medication, so I could be on fewer medications overall. It's a 75-year-old medication; but researchers at Mayo Clinic have repurposed it as a new gastroparesis treatment (and also to treat IBS-C and intestinal dysmotility), and researchers at Vanderbilt Autonomic Dysfunction Center have repurposed it as a new POTS/dysautonomia treatment. It's also currently in clinical trials to treat ME/CFS and exercise intolerance. Mestinon has been a miracle cure for me. Hoping your doctors can find treatment options to help you! Have you been screened for hypermobile type Ehlers Danlos syndrome (hEDS)? That condition often causes POTS and gastroparesis.
Every morning I cry because I throw up I'm in so much pain from my gastroparesis it's only mild but I'm on so many pills full blown from what they told me is when it stops working I'm literally waking up from the nausea and stomach cramps and I'll have to go to the bathroom and vomit sometimes I do both I'd lie if I said that I dont cry from it every morning. Its absolutely the worst thing. Nausea pills are so good when they work I have to take 8mg and that's starting not to work now x.x
Tyler Chula Hey!! I have Gastroparesis too! Just be careful if it’s the zofran because prolonged use can cause heart problems! Do you have a Facebook? I would love to talk to you about what helped because there IS HOPE! I’ve live with it for so long and I would love to talk to you!
Great video, very informative! I think that you're very wise to wait a bit before doing another surgery. You're so young, and sometimes surgery can inadvertently do more harm than good. After the second time I fractured several vertebrae, I had a recommendation for what they call "balloon" surgery to help the pain. I chose to hold off because I'd heard a LOT of horror stories from spinal surgery patients who ended up worse off than before the surgery painwise. I still have pain and arthritis but it is manageable. In previous videos you mentioned battling with C-dif. Did the CDif also contribute to the diarrhea or just make the gastroparesis diarrhea worse you think? Hope all went well with your J tube, and as always my thoughts and prayers are with you!
Thank you so much!! Yeah, the more I've been researching about the other surgery, the more I want to wait. Yes, the c. diff definitely made the diarrhea worse but I got the c. diff because of my fast colon if that makes sense. It's kind of hard to explain lol but thankfully I'm clear from the c. diff which is all that matters right now!
A really dear friend of mine has been unable to keep food down for at least 8 months and no doctor has been able to figure out what’s wrong I’m so sorry your going thru this but thanks to me coming across this video we may have figured out what is wrong with her
Believe in ur self Beauty is in the inside Bestfriend will be with u Ur hands are not paper don’t cut it We will all love u cause u amazing... God bless u
Hannah!! I have Gastroparesis too! I’m so sorry you have to go through this!! Do you have a Facebook account? I would love to tell you about my experiences and it may give you some hope!
I've been severely nauseous since I can remember. I'm almost 20 and I've been in and out of the ER so many times because I can't stop vomiting and having diarrhea. I always get two bags of fluids and get sent home. They keep putting me on gluten free diets and all this stuff but it has never helped. I'm down to 97lbs and its ruining my life. I love food and I want to gain weight but my body gets rid of it. They say I have chronic IBS and Pots, ive been in and out of every doctor for every part of the body and none of the tests come back normal theyre always slightly off but I'm never given a full answer. Its exhausting and I just want to feel better. I feel like I'm crazy sometimes 😂
You are so smart, brave and inspiring! I'm glad that you are sharing your story! I am praying for you with absolutely everything so much! 🙏🙏🙏🙏🙏🙏🙏🙏🙏 Ok so you have a feeding tube right now but what is a j tube? I love you sooooooo much! ❤❤❤❤❤❤💓💓💓💓💓💓💞💞💞💞💞💖💖💖💖💖💜💜💜💜💜💜💜💜I'm so glad that you've finally found the right doctors! I'm sooooooo proud of you for sharing your story, you're amaaaaazing!!
I feel sorry for you ! Both POTS and gastroparesis has to do with your EDS, I have EDS too and know that there are more young women in the world with the same problems as you. Have you ever watched the vlog “Amy’s life”? If not do so!
i have been trying to get in with dr cline for.... so long. 3: my emptying tests come back okay though so.... i can't even get a diagnosis. it just makes me sad.
i have time after time gone back to gastro complaining of severe pain and diarrhea. all my tests have come back normal. they keep telling me each time i go back oh carrie ur just seeking attention and everything wat else did u tell ur doc to make him reassess the situation.
Sorry you have POTS and Gastroparesis. Has the doctor tried you on Mestinon (Pyridostigmine) to treat both conditions? I have both conditions, and my doctor put me on Mentinon since she could treat two issues with a single medication, so I could be on fewer medications overall. It's a 75-year-old medication; but researchers at Mayo Clinic have repurposed it as a new gastroparesis treatment (and also to treat IBS-C and intestinal dysmotility), and researchers at Vanderbilt Autonomic Dysfunction Center have repurposed it as a new POTS/dysautonomia treatment. It's also currently in clinical trials to treat Chronic Fatigue Syndrome and exercise intolerance. Mestinon has been a miracle cure for me. Hoping your doctors can find treatment options to help you! Have you been screened for hypermobile type Ehlers Danlos syndrome (hEDS)? That condition often causes POTS and gastroparesis.
I was diagnosed with gastroparesis about 4 years ago and I thought it was crazy because I didn’t have much symptoms then I was put on a medication that caused me to go into a deep depression so I obviously stopped taking them. Since then I’ve struggled with anxiety and depression so I just don’t trust doctors I’ve realized all they do is prescribe you medication that makes you worse anyways I’ve been looking into holistic medicine have you looked into this?
I'm so sorry you have to go through this! I myself do struggle with anxiety and depression, especially when it comes to my health (like going to the hospital or doctors). I have tried holistic medicine as an approach, but it didn't work at all and it's too expensive to go consistently.
It costs about $10,000-$15,000 for a single dose so insurance is very picky on who they approve. They want patients to try other treatments before approving it.
Thanks for the response! I had no idea it was that costly. Kind of a shame that a treatment that could really benefit a lot of people is so hard to get. 🙁
Hey there! Ugh, so many misdiagnoses before the correct ones! We need more skilled & educated specialists. I also have POTS - when I told Beth this she said many of their patients have this and I am not the only one. She made me feel so much better! After being asked if I ever had a Smart Pill Study done, I tried to get my current specialist to order one but he is refusing. I really wanted to get this done so that I could send more info to Dr. Cline, but it looks like he is going to have to order it instead. Next Thursday is when I receive my customized wheelchair and have an appointment with a different EP Cardiologist to discuss saline therapy. We will both have to post update vlogs, ha! I am SOOO far behind, it's sad. Keep in touch - Bethany
Dr. Cline and my neuro Dr. Wilson actually work together because so many POTS patients have gastroparesis (and vice versa). The smart pill is actually a miracle test however, my insurance refused to cover it and we had to pay out of pocket. Text me, and I can go into more detail!!!!!
Have you ever been tested for Ehlers Danlos Syndrome? I recall that you had mentioned in a previous video that you were either diagnosed with EDS or were told that you might have it. All of your symptoms seem to indicate that diagnosis. If that is what is causing your gastroparesis and POTS, then you probably do NOT have an autoimmune disease. It just sounds that the doctors, as well meaning as they may be, may be trying to treat you with additional medications that may not be indicated for the conditions that you actually have. The two meds you mentioned, steroids and the other anti-inflammatory, are very strong medications with a whole array of potential side effects, which are nothing to sneeze at or experiment with. It sounds like you have already been experimented on for years because they didn't have the right diagnosis. Maybe it would be a good idea to ask your doctors to pursue the cause of your gastroparesis. Whatever decision you make, wishing you better health and the very best outcome!
Yes, I have been diagnosed with it. I recently went to a rheumatologist who confirmed it as well, but right now that actually isn't my biggest problem health wise so we're not really treating it. My autoimmune markers also came back off which is why were doing the IV solumedrol and plaquenil. Thank you so much!
I see! Great to hear that the EDS is not causing any other problems! Good luck with the new treatment and love your videos very much! A former Cleveland resident...
I was diagnosed with CF as an older child, but didn't have any of the genes for it when it became available. I don't know my sweat test results from then but the hospital no longer has my records and my mother passed away so I can't ask her. She always said it was negative. They decided to redo the sweat test on two separate occasions in 2015 both came back in the might/might not grey area with one being 55 and the other 54. They have since determined it is from the severe malabsorption. There is Dr.Afrin here and one in Germany who actually think pots, eds, GP and many other diseases are actually from the MCAS. It is possible to have MCAS and eosinophillic esophagitis and gastritis at the same time and both have very similar symptoms. Did they ever find increased eosinophils from biopsies? It seems to respond much better from steroids than the gi problems from MCAS. It will be interesting to see how well you respond to the steroids. I'm so glad that the doctors you have now have been as conservative as possible, but know exactly what to do. I can't help but wonder if I would have gotten as bad as I am if I had doctors knowledge about the condition early on. When is your jtube surgery? I know you told us but I couldn't remember. I've been on ivig since 1991 and it has really decreased the number of infections I get. I've been on xolair for 6 months now and it also is helping a lot. Both are extremely expensive and most insurances are very quick to deny them. If insurance says no again, most drug companies have patient help programs to help pay for it. They don't advertise it but provide it if you ask and are truly in need. Hang in there! Hugs and healing thoughts are headed your way!
Simply Hannah thank goodness eosinophils are not an issue for you! Be brave and strong tomorrow!!!!You are loved very much and are in my thoughts and prayers!
Hi, Hannah! My name is Jennifer, and I am from Nebraska. I am seeing your channel for the first time today, and I can identify with you. I was diagnosed with Gastroparesis in late 2014. I had a Gastric Bypass in 2015, and I am doing better than ever now. Would love to share my story, and see if I can help! Let me know if you are interested!
Peace, I am from Morocco, I have intestinal paralysis, I lost a lot of weight, I always feel full and heavy, I visited more than one doctor and could not find a cardio device suitable for me
What doctors will fail to tell you is that you have a chronic EBV (rooted from mononucleosis) infection. It’s embedded itself into your organs, inflaming and in your case, damaging your nerves. That and high deposits of heavy metals in your body are what’s keeping you sick. You gotta address the root cause of your problems in order to really move forward with your health. Best of luck to you
Do you regret having the POP procedure? I ask because since Cleveland is a teaching hospital, it's easy to become a Guinea pig, a word of advice, don't boost a dr's God complex, meaning just because they recommend a treatment, doesn't mean they're right. Dr's are just as infallible as we can be, do research beforehand, ask around about the procedure especially those who've had the the procedure. I've noticed in the chronic illness community that patients forget they have a say in their treatment, everyone has a right to question what a physician, you may not be a dr but it's amazing what you can learn if you take your health into your own hands. Also the GES (gastric emptying study) can change and isn't fool proof especially if you've been on pain medication. If you've had pain medicine in your system even from the night before, it can altar the test to your result, so take into account that you can get second opinions
No, I don't regret it at all. I'm not completely healed however if this is the most effect I'll get, I'm still 100% content with my decision. If I didn't do it then how would I have known it would work or not. Now that I know it isn't working we can explore other options that weren't there before the surgery. My surgeon and GI doctor are literally the best doctors I've ever had and only recommend things that have my best interests in mind. I was diagnosed by the GES and the smart pill and hadn't been on any sort of pain medication prior. I respect your input but since finding these doctors, the hope that I had lost has been restored. Even if none of their treatments work, I don't regret it because they still tried and genuinely care about me.
@@は私です彼の名前 It does it also helps with the nausea itself. Is what my friend said. Naturally, It's known to be an anti inflammatory to the body. my brother used it for his chemo treatments when he had cancer and said it was the only thing prescribed amongst all the drugs they wanted him to take that helped him and the pain, and nausea
Whoever disliked just doesn’t understand what she has to go through it’s tough ya know
Ikr
Ur right
MidnightMoonWolf :D Yep. Those are the kind of people who would never be able to handle something like this. Hope no one in their families is ever made to suffer because of the bad karma those creeps put out there.
I think its bc there r so many commercials.
My daughter has POTs and Gastroparesis, she is 15. My heart goes out to you.
Sorry your daughter has POTS and Gastroparesis. Has the doctor tried her on Mestinon (Pyridostigmine) to treat both conditions? I have both conditions, and my doctor put me on Mentinon since she could treat two issues with a single medication, so I could be on fewer medications overall. It's a 75-year-old medication; but researchers at Mayo Clinic have repurposed it as a new gastroparesis treatment (and also to treat IBS-C and intestinal dysmotility), and researchers at Vanderbilt Autonomic Dysfunction Center have repurposed it as a new POTS/dysautonomia treatment. It's also currently in clinical trials to treat Chronic Fatigue Syndrome and exercise intolerance. Mestinon has been a miracle cure for me. Hoping your daughter's doctors can find treatment options to help your daughter!
Has your daughter been screened for hypermobile type Ehlers Danlos syndrome (hEDS)? That condition often causes POTS and gastroparesis.
After seeing your story, I felt I needed to tell you about my coworker. I am not sure if others have mentioned this and I certainly do not want to get your hopes up, but my coworker also has the same condition. She was able to find a doctor in San Francisco who did an experiment with a pace maker style device that allows her to eat normal foods as long as they do not contain any fat. She has had the device for many years with no issues. I hope you see this and I hope it helps. Keep you head up!!
Background music is SO irritating even for me with no hearing impairment
I just went to the Cleveland Clinic and saw Dr. Cline for the first time on Tuesday for my gastroparesis! I have a smart pill test scheduled for June. He found my hEDS SO fast. I'm looking forward to working more with him!
Thank you for the video! It's so comforting to hear from another young person what it's like to live with a chronic illness. Keep your chin up
Wow Hannah, that's quite a story! Not unlike mine. I just wanted to say that despite the ease with which people like us can get depressed and frustrated - you're (at least on the outside) managing to keep a positive outlook and demeanor and you're not letting these things really drag you down; cause it can happen very easily. Thank you for sharing your experiences - I like others, I'm sure, find strength from YOUR strength and positive attitude.
Thank you, again, and I'm happy that you FINALLY have gotten some answers!
I saw you on inside addition I felt bad for you 😟😣😖😫😩😰
* inside edition*
I just had you pop up in my suggestions and I’m so glad I found you.
It’s taken me years to get to my current diagnosis, and I’ve taken various meds for loads of things I haven’t had too (including rheumatoid arthritis drugs for more than 10 years!)
I have had stomach problems for years but thankfully not as bad as yours.
I also have cEDS and POTS, (also endometriosis and cysts on my ovaries, I had to have it all removed because my uterus grew to the size of a watermelon and nearly killed me because I went into liver and kidney failure), a blood disorder, some kind of auto immune thing, etc...
I thought I was just unlucky but I saw a geneticist (who diagnosed me with cEDS) and he said all the different things link to the faulty genetic mutation of the collagen.
You explain things so well, I hope things get a bit better for you soon.
👍🏻 and subbed.
You are so inspiring! Keep going you will finally find you solution ! I’m diagnose with juvenile arthritis, POTS and recently diagnosed with PCOS and I still haven’t got over my problems but solving one problem at a time and I’m finally getting there ! I wish you the best of luck and your never alone xx
I came across your videos because for about 9 months now I’ve been feeling nauseous all day and I’ve gotten EGD’s and scans and all that but I can barely keep any food down. I’ve had to vomit in so many embarrassing places which makes me not wanna leave the house, and I was just told it’s anxiety or anorexia or just dyspepsia. I’m at the point where I’m not sure what to do anymore. Thank you for sharing your story! Your positivity is inspiring! I wish you all of the best with your health!
Im 12 years old and have been in pain for years my doctor and I have been testing for gastroparesis I have thought I have this for a while and I'm glad I finally have a doctor who believes me and I need a feeding tube but I'm scared I've been through so much and I love how open you are
Hi Hannah,
Thanks for sharing your story. I have Peutz-Jeghers Syndrome and may have recently developed gastroparesis. I do not have a diagnosis yet but an emptying scan showed my stomach is slow to empty. I also have a lot of symptoms.
Your story was very helpful. Your wonderful disposition in the face of such long lasting struggles is inspiring.
Thanks for sharing your story. I am glad you’re finally getting answers. It’s hard being told you’re wrong, or it’s psychosomatic. Sending much love your way 💜💜💜
Thank you so much!!
K. I cannot apply wrinkle cream to my face, or where I have injuries throughout my GI tract seize simultaneously. My scattered injuries do not cover the entire membraneous tissue. I can wash with Cetaphil. I can also take Tylenol to balance lactic acid build-up due to a prolonged retension of food, which may feel the same but is not the same as paralysis. I can eat kiwi for its fibre, for regulation/easement, but not too much coffee because caffeine worsens exema - There is some on either side of my face whenever I react adversely/internally on the same side. I recently took a collagen suppliment for joints, and noticed more paralysis wherever there were injuries before now due to too-much tightening. I had hoped to repair myself when bloodwork failed to show abnormal inflammatory markers, which meant that 'there was nothing wrong' to my doctor. I still need surgery to help with hernia. The advice I have today is to avoid all face make-up, on the chance they have either paralytic or collagen in them. Milk for elastin replacement is also advised if you can maintain sufficient lactic acid removal. Try lactose-free if not. Ask you favourite doctor if oxygenation of membraneous tissue is an available option through beet-root suppliment. I can also reset when I have too much bloating or continuous gas with pro+pre-biotic daily gummie suppliment. Good luck. P.S. No onion, no mushrooms, ever. Carbonated softdrinks I can only handle on occasion.
Hi, I’m so sorry that you’re having to go through this. When I was younger I was diagnosed with gastroparesis and after many doctor visits and Misdiagnosis they said my stomach would not digest and told my mom to put me on a bezoar diet, and they prescribed me antacids. I have not gone on the bezoar diet but now that I’m older I kinda want to to see if it’ll make a difference. I don’t know what happened but I rarely feel the pain, like I maybe have an episode every 2-3 months or longer now, whereas before (when I was a toddler and up to my early teenage years) it was every time I ate. I would be nauseous every morning and thew-up most mornings. I now am low in weight and eat once to twice a day. I don’t feel the pain, but I do struggle with either not being able to go to the bathroom or not able to stay away from the bathroom. I usually don’t poop every day, maybe every other day, which in turn makes me feel bad and then I don’t feel like eating and then usually once I do use the bathroom, finally, I’m extremely hungry. Or I’ll eat something that upsets my stomach and have to rush to the bathroom (diarrhea). I somewhat know what your going through but then again your condition is so much more severe than mine ever was.
In saying that, I am so happy that you’re trying to raise awareness!! We need more people like you to show the world what it is really like and not try to hide it.
Stay strong! I have Crohn’s disease and Irritable bowel. A lot of similar symptoms diarrhea, stomach pain, bloating.
Hi Hannah
I have only been diagnosed recently this year with Gastroparesis but i have had it all my life but only been having the symptoms badly for the past 6 years and i have been on medication for the past 3 months to relieve my symptoms which is nausea and vomiting and not finishing and eating my meals and the medication has been working fortunately and im always back and forth to the hospital
Hope all is well with you x
Thank you for sharing. I think my sister has this and since she has cut me out of her life, I am left in the dark about her health. But from what I remember growing up with her and then recent things my mom has disclosed to me, this sounds like the closest thing she has (among other things). She was told she was anorexic at one point too and had shared with me that she knew she wasn't and how discouraging that was for her. She is 30 now and I have no idea the life she lives. But these videos help me understand a little of her daily routine/struggles. So again, thank you.
I am happy that you found the right doctors. There are so many people who have put their trust in doctors and end up losing the hope that they had with doctors because they either don’t believe you and just diagnosed you with something else mental or medical or they go through a bad experience with that doctor and that doctor could no longer be trusted I understand all of that because I’m going through right now and I just it sucks that a lot of us have to go through that before we even get the correct answer.
Thank you so much!!!
from watching other TH-camrs with EDS, yes most of the other issues is usually connected and caused by having EDS
Yes, EDS can cause the other issues I have. I also have some weird autoimmune thing going on as well though which they want to try and treat to see if that helps my symptoms. Because EDS is so rare, doctors aren't really sure why they're all connected so they don't really know how to treat them if that makes sense.
Do you have any advice for bringing up EDS to a doctor? Anytime I bring up something that could cause all my illnesses I feel like a stupid hypochondriac and I want to have confidence when I ask.
@@SimplyHannah98 Is your autoimmune issue Mast Cell Activation Sydrome (MCAS)? That's often related to EDS. I have hypermobile type Ehlers Danlos syndrome, but managed to not get MCAS. I have all the other stuff, though. Thankfully my doctor discovered that Mestinon (Pyridostigmine) has emerged as a treatment for both POTS and gastroparesis. That's been a huge improvement in my quality of life! Hoping your doctors can find better treatment options for you, too.
Great video Hannah! Very informative and unfortunately relatable. I hope the wait for your J-tube surgery goes quickly and you have a quick and easy recovery. I have had my j-tube for almost 12 years and though it took a few months and different types of j-tubes to find what works best for me, it has been a life saver! I hope it all goes smoothly and I know it is hard not to be anxious and nervous, especially having had so many things not go to plan for you, but hang in there I am sure in time the decision to get a j-tube will pay off! Stay strong and thanks for the amazing videos, it is so nice to see someone going through some of the same things and continue to be so positive!
Thank you so much!!!!!!!!
It is so weird how it works with gastric emptying studies. Everyone assumed I had GP because of how sick I was and how I was unable to eat anything but a liquid diet for months after some viral infections. I have very rapid gastric emptying (I was wondering why they told me to go home very early into my emptying study!?), which is common in dysautonomia but less problematic than GP. I have rapid gastric emptying but when I am very sick I have constipation instead of the typical "dumping" syndrome.
I will never complain about my ulcerative colitis again. I thought I had it bad. I hope you're able to find some relief soon. Thank you for sharing your story. Not that It makes me happy that you have what you have...but it is comforting to know that I'm not the only one with gastric issues. Sometimes it feels like it.
This video answers so many of my questions I had about your situation since I saw the first one...I thank you for that...
My colon empties in about 1-2 hours. It's upsetting to see dinner again before bedtime. I do have Crohns with about 4 ft removed and resected. How do you handle hunger? I'm hungry all the time but it seems pointless to just throw money in the toilet every 2 hours. Imodium and Zofran have never worked for me. Your video wasn't all over the place if you were paying attention. 🙏
I saw you on inside edition today. I had to check out you're channel. I'm loving it so far!
My stomach took 48 hours to digest food when I first got diagnosed with gastroparesis. I also have diarrhea and I can hardly eat anything without going to the restroom within 30 minutes of eating. I have to rely on anti diarrhea medication to literally eat anything without going to the restroom
The whole reason I came here is because of inside edition
You are so sweet I personally don’t think you deserve to go through this
I saw you on inside aditon
You’re so beautiful! And I also have a ton of stomach issues I get nauseous everyday of my life and have stomach spasms and all that. But I can’t imagine what you’re going through. Stay strong! ❤️❤️❤️
I was told from the my G.I. doctor and nephrologist and neurologist that the digestive issues comes from pots everything that go on with nervous and digestive comes from Pots cause I have Gastroparesis , IBS , Exocrine Pancreatic Insufficiency -(EPI) and I was tell it all comes from pots and I live in Tampa FL. But I hope and pray you feel better soon
What is pots? Like eating food that was cooked in a pot or pan?
Sorry you have POTS and Gastroparesis. Has the doctor tried you on Mestinon (Pyridostigmine) to treat both conditions? I have both conditions, and my doctor put me on Mentinon since she could treat two issues with a single medication, so I could be on fewer medications overall. It's a 75-year-old medication; but researchers at Mayo Clinic have repurposed it as a new gastroparesis treatment (and also to treat IBS-C and intestinal dysmotility), and researchers at Vanderbilt Autonomic Dysfunction Center have repurposed it as a new POTS/dysautonomia treatment. It's also currently in clinical trials to treat Chronic Fatigue Syndrome and exercise intolerance. Mestinon has been a miracle cure for me. Hoping your doctors can find treatment options to help you!
Have you been screened for hypermobile type Ehlers Danlos syndrome (hEDS)? That condition often causes POTS and gastroparesis.
Hey your living your life with a super positive attitude!! Your beautiful lil momma keep it up❤🌹❤🌹❤🌹❤🌹❤
I'm thankful for you doing your vlogging. I also have gp and it really sucks! Mine is moderate and do not need to a feeding tube but, I have a lot of friends that need sustenance from the formula and other forms of nutrients. Thank you again!!
I have been having the same symptoms for a year. Mine started after gallbladder removal and then appendix removal a month after my gallbladder. Also have severe vomiting, nausea, diarrhea, bloating, and pain. They diagnosed me w IBS for a year but treatment for that did nothing. I've lost 40 lbs in three months because it just continues to get worse. I've lost 50-60lbs in this year. It's frustrating because I can't keep anything down and nothing helps. I'm still slightly overweight so no doctor is really taking me seriously. Any advice? My current GI doctor has pretty much given up on helping me. I've also had a colonoscopy, many endoscopies, surgeries, so many tests and scans.
Thank you for sharing so much about yourself.
I really relate to not having doctors take you seriously. I have very similar stomach-related symptoms, but have yet to get a diagnosis as tests keep coming back normal.
Sending love your way, Hannah ❤❤ You're really an inspiration to me, and the positivity in your videos really help me to keep going x
Thank you so much!! It truly means a lot. I'm so sorry you are going through this, but I PROMISE one day you will figure it out. I was so hopeless but then all of a sudden, it just took one doctor for the pieces to fall into place.
My insta is @hannahr916
I hope you’re ok I’ve been praying for you I hope you get better love you sooo much 😄😄😄😄😄😄
I am very sorry about ur sickness just plz know God is with u, u will be okay and everything will be okay.
I see this today on inside addition and I just finish praying 🙏 for you . God is with dear don't lose hope
I wish I could sit and listen, this is something I wanted to hear but due to my disability, background music makes it so I can't hear what you are saying :( Yes there are captions but its never accurate or the same. bummer :(
ytfp 😭 maybe someone can take the background music off for u
If you disliked this video something is wrong with you she has been going through this 8 years and that’s how y’all feel y’all some ungrateful people what if this was you ,you wouldn’t want people to dislike your video you little ungrateful kids and I know it’s just kids.❤️❤️
The background music makes you a bit difficult to hear, at least for someone with a bit of hearing loss
TheDreamerBelle ~ background music is SO irritating even for me with no hearing loss
I’m so glad I saw this comment I’m hard of hearing and it is hard to focus
Me too. I really struggled with it.
I wonder why you didn't talk about the c diff. That surely affected things too. Very interesting stuff. I never knew much about gastroparesis. Now I wonder if I have that too. Thanks for raising awareness.
Thanks for explaining hun hope your surgery goes well xx
Aw I hope you fell better I love you so much
im on my way to probably be diagnosed with gastroparesis, pots and ME and im kinda terrified, my doctor called today and asked us how i feel about possibly getting a feeding tube and its so overwhelming
Sorry you might have POTS and Gastroparesis. Has the doctor tried you on Mestinon (Pyridostigmine) to treat both conditions? I have both conditions, and my doctor put me on Mentinon since she could treat two issues with a single medication, so I could be on fewer medications overall. It's a 75-year-old medication; but researchers at Mayo Clinic have repurposed it as a new gastroparesis treatment (and also to treat IBS-C and intestinal dysmotility), and researchers at Vanderbilt Autonomic Dysfunction Center have repurposed it as a new POTS/dysautonomia treatment. It's also currently in clinical trials to treat ME/CFS and exercise intolerance. Mestinon has been a miracle cure for me. Hoping your doctors can find treatment options to help you!
Have you been screened for hypermobile type Ehlers Danlos syndrome (hEDS)? That condition often causes POTS and gastroparesis.
Every morning I cry because I throw up I'm in so much pain from my gastroparesis it's only mild but I'm on so many pills full blown from what they told me is when it stops working I'm literally waking up from the nausea and stomach cramps and I'll have to go to the bathroom and vomit sometimes I do both I'd lie if I said that I dont cry from it every morning. Its absolutely the worst thing. Nausea pills are so good when they work I have to take 8mg and that's starting not to work now x.x
Tyler Chula Hey!! I have Gastroparesis too! Just be careful if it’s the zofran because prolonged use can cause heart problems! Do you have a Facebook? I would love to talk to you about what helped because there IS HOPE! I’ve live with it for so long and I would love to talk to you!
Thank you for sharing your story ❤️
Great video, very informative! I think that you're very wise to wait a bit before doing another surgery. You're so young, and sometimes surgery can inadvertently do more harm than good. After the second time I fractured several vertebrae, I had a recommendation for what they call "balloon" surgery to help the pain. I chose to hold off because I'd heard a LOT of horror stories from spinal surgery patients who ended up worse off than before the surgery painwise. I still have pain and arthritis but it is manageable. In previous videos you mentioned battling with C-dif. Did the CDif also contribute to the diarrhea or just make the gastroparesis diarrhea worse you think? Hope all went well with your J tube, and as always my thoughts and prayers are with you!
Thank you so much!! Yeah, the more I've been researching about the other surgery, the more I want to wait. Yes, the c. diff definitely made the diarrhea worse but I got the c. diff because of my fast colon if that makes sense. It's kind of hard to explain lol but thankfully I'm clear from the c. diff which is all that matters right now!
I hope you feel better! I saw you on inside idition I felt so bad for you
A really dear friend of mine has been unable to keep food down for at least 8 months and no doctor has been able to figure out what’s wrong I’m so sorry your going thru this but thanks to me coming across this video we may have figured out what is wrong with her
А потом ваш друг смог есть?
Believe in ur self
Beauty is in the inside
Bestfriend will be with u
Ur hands are not paper don’t cut it
We will all love u cause u amazing...
God bless u
Hey❤️ I have diarrhea with gastroparesis too this makes a lot of sense to me I have a lot of the same symptoms or whatever they are as u
Hannah!! I have Gastroparesis too! I’m so sorry you have to go through this!! Do you have a Facebook account? I would love to tell you about my experiences and it may give you some hope!
I'm so sorry you have GP too!! I don't but I do have instagram! If you have one, mine is @hannahr916
Please share... my daughter is living a nightmare right now with pots, for 6 years, and a recent diagnosis of gastroparesis 😢
I've been severely nauseous since I can remember. I'm almost 20 and I've been in and out of the ER so many times because I can't stop vomiting and having diarrhea. I always get two bags of fluids and get sent home. They keep putting me on gluten free diets and all this stuff but it has never helped. I'm down to 97lbs and its ruining my life. I love food and I want to gain weight but my body gets rid of it. They say I have chronic IBS and Pots, ive been in and out of every doctor for every part of the body and none of the tests come back normal theyre always slightly off but I'm never given a full answer. Its exhausting and I just want to feel better. I feel like I'm crazy sometimes 😂
i 3 grade in nutrition thank you for shareing info
What's it called when your stomach empties normally but the food doesn't go thru the bowels/ intestines at a normal rate?
Have you try the pacemaker? ( Enterra or something like that)?
I have had severe vomiting for months now and every time I eat I get sick
I am going through this right now with my anorexia recovery
You are so smart, brave and inspiring! I'm glad that you are sharing your story! I am praying for you with absolutely everything so much! 🙏🙏🙏🙏🙏🙏🙏🙏🙏 Ok so you have a feeding tube right now but what is a j tube? I love you sooooooo much! ❤❤❤❤❤❤💓💓💓💓💓💓💞💞💞💞💞💖💖💖💖💖💜💜💜💜💜💜💜💜I'm so glad that you've finally found the right doctors! I'm sooooooo proud of you for sharing your story, you're amaaaaazing!!
I feel sorry for you ! Both POTS and gastroparesis has to do with your EDS, I have EDS too and know that there are more young women in the world with the same problems as you. Have you ever watched the vlog “Amy’s life”? If not do so!
Amy is one of my good friends, I love her!!!
Simply Hannah and Monica Dahlin also life with stripes is one that shares those diagnosis’s
i have been trying to get in with dr cline for.... so long. 3: my emptying tests come back okay though so.... i can't even get a diagnosis. it just makes me sad.
i have time after time gone back to gastro complaining of severe pain and diarrhea.
all my tests have come back normal.
they keep telling me each time i go back oh carrie ur just seeking attention and everything wat else did u tell ur doc to make him reassess the situation.
crazy how they diagnosed you with cf. i have it
Have you been tested for c diff and have you tried glutamine
Hey Hannah I have Gastroparesis and Pots. Thinking of you! I know it is a struggle
Sorry you have POTS and Gastroparesis. Has the doctor tried you on Mestinon (Pyridostigmine) to treat both conditions? I have both conditions, and my doctor put me on Mentinon since she could treat two issues with a single medication, so I could be on fewer medications overall. It's a 75-year-old medication; but researchers at Mayo Clinic have repurposed it as a new gastroparesis treatment (and also to treat IBS-C and intestinal dysmotility), and researchers at Vanderbilt Autonomic Dysfunction Center have repurposed it as a new POTS/dysautonomia treatment. It's also currently in clinical trials to treat Chronic Fatigue Syndrome and exercise intolerance. Mestinon has been a miracle cure for me. Hoping your doctors can find treatment options to help you!
Have you been screened for hypermobile type Ehlers Danlos syndrome (hEDS)? That condition often causes POTS and gastroparesis.
Stay strong 💕
Thank you so much!
Simply Hannah no problem, you’re such an inspiration, keep pushing forward ☺️
Omg, you're too sweet!!!!!!! 💗😭
Simply Hannah aww thank you so much ♥️
Best wishes Hannah ⭐️💕🌼
Thank you so much!
Oh
I was diagnosed with gastroparesis about 4 years ago and I thought it was crazy because I didn’t have much symptoms then I was put on a medication that caused me to go into a deep depression so I obviously stopped taking them. Since then I’ve struggled with anxiety and depression so I just don’t trust doctors I’ve realized all they do is prescribe you medication that makes you worse anyways I’ve been looking into holistic medicine have you looked into this?
I'm so sorry you have to go through this! I myself do struggle with anxiety and depression, especially when it comes to my health (like going to the hospital or doctors). I have tried holistic medicine as an approach, but it didn't work at all and it's too expensive to go consistently.
How did your symptoms start?
Why don't insurances cover IVIG?
It costs about $10,000-$15,000 for a single dose so insurance is very picky on who they approve. They want patients to try other treatments before approving it.
Thanks for the response! I had no idea it was that costly. Kind of a shame that a treatment that could really benefit a lot of people is so hard to get. 🙁
Right?! I totally agree, it's awful!
Do you plan to document your immediate recovery from this next surgery?
Yes, that's the plan!!!!
@@SimplyHannah98 I think that will be very interesting its not something that's well known about in my opinion.
Hey there! Ugh, so many misdiagnoses before the correct ones! We need more skilled & educated specialists. I also have POTS - when I told Beth this she said many of their patients have this and I am not the only one. She made me feel so much better! After being asked if I ever had a Smart Pill Study done, I tried to get my current specialist to order one but he is refusing. I really wanted to get this done so that I could send more info to Dr. Cline, but it looks like he is going to have to order it instead. Next Thursday is when I receive my customized wheelchair and have an appointment with a different EP Cardiologist to discuss saline therapy. We will both have to post update vlogs, ha! I am SOOO far behind, it's sad. Keep in touch - Bethany
Dr. Cline and my neuro Dr. Wilson actually work together because so many POTS patients have gastroparesis (and vice versa). The smart pill is actually a miracle test however, my insurance refused to cover it and we had to pay out of pocket. Text me, and I can go into more detail!!!!!
Have you ever been tested for Ehlers Danlos Syndrome? I recall that you had mentioned in a previous video that you were either diagnosed with EDS or were told that you might have it. All of your symptoms seem to indicate that diagnosis. If that is what is causing your gastroparesis and POTS, then you probably do NOT have an autoimmune disease. It just sounds that the doctors, as well meaning as they may be, may be trying to treat you with additional medications that may not be indicated for the conditions that you actually have. The two meds you mentioned, steroids and the other anti-inflammatory, are very strong medications with a whole array of potential side effects, which are nothing to sneeze at or experiment with. It sounds like you have already been experimented on for years because they didn't have the right diagnosis. Maybe it would be a good idea to ask your doctors to pursue the cause of your gastroparesis. Whatever decision you make, wishing you better health and the very best outcome!
Yes, I have been diagnosed with it. I recently went to a rheumatologist who confirmed it as well, but right now that actually isn't my biggest problem health wise so we're not really treating it. My autoimmune markers also came back off which is why were doing the IV solumedrol and plaquenil. Thank you so much!
I see! Great to hear that the EDS is not causing any other problems! Good luck with the new treatment and love your videos very much! A former Cleveland resident...
Thank you so much, I really appreciate it!!!
I was diagnosed with CF as an older child, but didn't have any of the genes for it when it became available. I don't know my sweat test results from then but the hospital no longer has my records and my mother passed away so I can't ask her. She always said it was negative. They decided to redo the sweat test on two separate occasions in 2015 both came back in the might/might not grey area with one being 55 and the other 54. They have since determined it is from the severe malabsorption. There is Dr.Afrin here and one in Germany who actually think pots, eds, GP and many other diseases
are actually from the MCAS. It is possible to have MCAS and eosinophillic esophagitis and gastritis at the same time and both have very similar symptoms. Did they ever find increased eosinophils from biopsies? It seems to respond much better from steroids than the gi problems from MCAS. It will be interesting to see how well you respond to the steroids. I'm so glad that the doctors you have now have been as conservative as possible, but know exactly what to do. I can't help but wonder if I would have gotten as bad as I am if I had doctors knowledge about the condition early on. When is your jtube surgery? I know you told us but I couldn't remember. I've been on ivig since 1991 and it has really decreased the number of infections I get. I've been on xolair for 6 months now and it also is helping a lot. Both are extremely expensive and most insurances are very quick to deny them. If insurance says no again, most drug companies have patient help programs to help pay for it. They don't advertise it but provide it if you ask and are truly in need. Hang in there! Hugs and healing thoughts are headed your way!
The biopsies came back negative for me (I've had around 7 or 8 EGD's). Thank you so much, I go in tomorrow for surgery.
Simply Hannah thank goodness eosinophils are not an issue for you! Be brave and strong tomorrow!!!!You are loved very much and are in my thoughts and prayers!
Hi, Hannah! My name is Jennifer, and I am from Nebraska. I am seeing your channel for the first time today, and I can identify with you. I was diagnosed with Gastroparesis in late 2014. I had a Gastric Bypass in 2015, and I am doing better than ever now. Would love to share my story, and see if I can help! Let me know if you are interested!
Peace, I am from Morocco, I have intestinal paralysis, I lost a lot of weight, I always feel full and heavy, I visited more than one doctor and could not find a cardio device suitable for me
Is it just me or is there a little boy shadow in the background?
You first got sick 8 years ago.. Can I just ask how old you are uwu
I was 12 (I'm 20 now)
@@SimplyHannah98 oki thank chu
The 10 people who disliked you are a psychopath...okay?
Am I the only one who cried😭😥
You are such a beautiful women. I seriously envy your strength getting through this. You are a warrior Hannah💪
I have CFS which is worse!! trust me. It causes Gastroparesis and like a hundred symptoms more, so you are not alone!!!
What doctors will fail to tell you is that you have a chronic EBV (rooted from mononucleosis) infection. It’s embedded itself into your organs, inflaming and in your case, damaging your nerves. That and high deposits of heavy metals in your body are what’s keeping you sick. You gotta address the root cause of your problems in order to really move forward with your health. Best of luck to you
Get a pacemaker you can eat just not lettuce and won’t be sick Dr Jannett Thompson at UMMC DOES A WONDERJOB
I hope you get better soon 🙏☘️☘️❤️❤️☯️☣️🍘🥧🥟🍱🍧🍝🌮🍔🍕🍕🍕 I saw you on inside edition i 😢
Do you regret having the POP procedure? I ask because since Cleveland is a teaching hospital, it's easy to become a Guinea pig, a word of advice, don't boost a dr's God complex, meaning just because they recommend a treatment, doesn't mean they're right. Dr's are just as infallible as we can be, do research beforehand, ask around about the procedure especially those who've had the the procedure. I've noticed in the chronic illness community that patients forget they have a say in their treatment, everyone has a right to question what a physician, you may not be a dr but it's amazing what you can learn if you take your health into your own hands. Also the GES (gastric emptying study) can change and isn't fool proof especially if you've been on pain medication. If you've had pain medicine in your system even from the night before, it can altar the test to your result, so take into account that you can get second opinions
No, I don't regret it at all. I'm not completely healed however if this is the most effect I'll get, I'm still 100% content with my decision. If I didn't do it then how would I have known it would work or not. Now that I know it isn't working we can explore other options that weren't there before the surgery. My surgeon and GI doctor are literally the best doctors I've ever had and only recommend things that have my best interests in mind. I was diagnosed by the GES and the smart pill and hadn't been on any sort of pain medication prior. I respect your input but since finding these doctors, the hope that I had lost has been restored. Even if none of their treatments work, I don't regret it because they still tried and genuinely care about me.
Youre amazin,Sending you hugs and kisses from Kenya ....lots of love :) :)
Thank you!!
I feel bad for you ☹️
Hannah I hope your ok I hope your not suffering 😢😭😭😭😭😭😭😭😢😢😢😭😭😭😭
We’re you exposed to mold?
I have a desiease it's called
*Fortnitus, Cancerus*
I love your videos new subscriber!
Look into a gastric pacemaker!
Gotta fix ur diet, I had these symptoms I've also got pots, 2-3 different diet types I found the 1 that works for me. GoodLuck
Sam East What works for you?
You soo beautiful
Pain in my stumick
Are you on disability? What do you do for pain?
I love u hanna
U should try getting medical marijuana. Its the best thing for any sickness i know someone who had the same issue as you and healed it by doing so.
Cali Jean Please have them share thier story. I was wondering the same thing because I know that helps with appetite...
@@は私です彼の名前 It does it also helps with the nausea itself. Is what my friend said. Naturally, It's known to be an anti inflammatory to the body. my brother used it for his chemo treatments when he had cancer and said it was the only thing prescribed amongst all the drugs they wanted him to take that helped him and the pain, and nausea