Gotta love it when mentioning any GI issue or anything else, and a whole mob of people come recommending LCHF, FODMAP, going gluten-free, dairy free or vegan within less than two split seconds... I have EDS as well, and have had GI issues since childhood with IBS and such. I feel totally fine with both dairy and gluten, but my stomach crashes if I eat too much fiber, and I totally can’t handle regular yellow onion... I can eat red onion, garlic and shallots just fine, or the large white/silvery onions, but regular yellow onion is some serious rocket fuel that could work as bowel prep for me... And LCHF I won’t even try as too much fat can also set off my IBS, I personally just feel best with a mixed, balanced diet that doesn’t cut out certain groups of foods, I just adapt things some to make it work for me (white bread instead of whole grain with whole pieces of grains in it for example) I really can’t stand the diet recommendation “cult” within the chronic illness community, people need to just find what works for them as an individual, and fine share it, but just don’t shove it down peoples throats as soon as they mention having some issue with whatever it may be *gets off soapbox* My approach is more along the lines of trial and error and find what works for you when it comes to any recommendations on how to manage a condition
Hey girl, You could go on a speaking tour as thorough as you are. You explain everything in a simple way that anyone could understand. Thanks for taking the time to make this video and explain in real terms what’s going on. I hope that you continue having the strength to help educate us and to keep going!!!! May your health improve and may you be blessed for your work. Many spoons to you from a fellow EDS victim, I mean patient and have a wonderful week!!!!
I don’t have EDS, but I have had two Psuedo obstructions. They are very painful. The first one, I was withering in pain for hours, it got so bad it made me throw up and I ended up in hospital. The next one I had, which was only a few months ago, I knew what I had to do,. It still took about a week to get rid of completely. I have been watching your journey for over a year now. I wish you all the very best.
Oh my gosh girl I have been suffering for years and years and FINALLY got a diagnosis of gastroparesis. I know it sounds weird but it was such a relief to finally have an answer. I have constipation with breakthrough diarrhea it's crazy! I was 6 years old and had the barium get stuck it was a nitemare I was hospitalized at that time for 2 months.
I have gastroparesis and intestinal dysmotility from having hypermobile type Ehlers Danlos syndrome. The only medication that has worked to fix it is Mestinon (Pyridostigmine), which is a newly repurposed prokinetic that Mayo Clinic and other research centers have pioneered to treat digestive motility issues. It stimulates the vagus nerve and helps the muscles involved in swallowing and pushing food through the digestive tract. Mestinon also treats POTS, fatigue, and exercise intolerance; so this has been a miracle medication for multiple Ehlers Danlos issues.
Thanks for this informative video. It really helps in understanding so much of your pain & why so many tests are constantly done on you. You are looking amazing since starting the new medicine. Fingers crossed that it continues to work allowing you to get closer to transplantation, if you are aiming for that. Wishing you continued health improvements & successes always!
Thank you for sharing. I thought I was going crazy because when I found out I have gastro problems(don’t know which). After listen to you I going to get to reason of why. I pray we all are healed soon 💕💕💕
14:00 till the end, words of wisdom, you are a boss, because you are great, one, two, three diseases can't put you down, you are just like mythological warriors, nature needs a fleet to fight you, but you keep winning again & again, you are stronger than the iron man & wonder woman combined, salute to your family.... your avengers team
That's a big one.. don't compare. Does that go for symptoms that are similar 🤔 😳 😕 with autoimmune and immune its interesting how similar or different people are
Oh Reglan. When my arm involuntarily threw itself up in the air I decided it might be time to quit using it. I went into remission (if you can call it that) for awhile afterward. I have occasional issues but it’s weird because it seems to have moved to being slow in my intestinal tract somewhere. I can get blocked up and so bloated. My Dr made a joke and told me I was “full of it”. He meant my bowels. He’s funny. I do a lot of natural things to help it but there are times I get in flares and I’m just in so much misery. Thankfully, nothing like I used to be before I tried Reglan for a short while. I think I was on Reglan for close to a year. I also moved jobs around the one year mark and couldn’t afford the Reglan drug and acid reflux medicine anymore. It was over $600 out of pocket each month
I have very similar health issues. I feel like a bowel obstruction is a lot like being in labour but you don't get a break like you do with contractions and its so uncomfortable I feel I must be 15 months pregnant. I had two kids before my health took a huge nose dive
I don’t have any sort of paralysis oh my GI tract, mine actually works a little too fast, so I end up with issues because my stomach can’t digest fast enough, so I get sick and have horrible pain and bloating due to it. My emptying test ended super fast, and the radiologist was shocked because they were expecting it to be slowed, but it was really fast. I just have to watch what I eat for mine. Obviously this is nothing compared to what you, and others with the same or similar conditions go through. I’m just intrigued by all the different conditions and how they relate or differ from each other
I can never have IV reglan ever again it caused massive uncontrollable movements of my entire body, I literally pulled the iv, walked out the hospital and drove around all night because I had no control over my body even though mentally I could think "I need to tell somebody what's wrong, I need help, I need to go home or back to the hospital" but my body would not connect with my consciousness. Also it elevated my heart rate to the point I was minutes from having a stroke. It is a common side effect of an obstructing to have diarrhea because the liquids pass the obstructing but the solid waste continues to build up at the obstruction.
I had a similar reaction to iv reglan. I had extreme blurry vision , uncontrollable movements of my whole body and lock jaw. It was a very scary experience for me. I kept thinking it’s just an anxiety attack ( I have panic attacks a lot) but the feelings kept on and I knew myself something was not right but my brain couldn’t communicate it to my doctor.
Does the SmartPill motility pill actually have a camera? I though it takes similar reading to the manometry device along with transit time and gut temperature? There are endoscopic pill that have cameras?
I thought I have bad bowel intestiel blockages..ur totally clued up..my doctor is useless..just tells me to use laxatives..I hope ur good days out weigh your bad 🙃
