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Chronic Illness Vlog: Gastric Emptying Test
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- Опубліковано 5 лип 2018
- Hello Dysfunctioning Fam!
Here's a Vlog about my Gastric Emptying Test. Hopefully, if you have to get one you'll know what to expect after watching this video! And if you know someone who has to get one, I'd love if you shared this with them!
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Hello. I have POTS and I have a gastric emptying scheduled for next week and I had no idea what was going to happen but this video really helped calm my nerves and gave me a better understanding of it so thank you!
I'm so happy to hear that! Good luck with your test. Hope you find some answers!
How did the test go? If you happened to be diagnosed with gastroparesis or intestinal dysmotility, the good news is that the emerging repurposed treatment option Mestinon (Pyridostigmine) can treat both gastroparesis/dysmotility and POTS/dysautonomia. It's helped me with both of those issues with no side effects, and it's reduced my fatigue and exercise intolerance. Mestinon also costs much less than my other medications.
Hoping your doctor can find a good treatment option for you, too!
Thank you for posting this. I have this test on Wednesday and was really scared. Not so worried now and guess I'll be able to go back to work in the afternoon. Thanks again!
Very informative. Thank you. I've been wondering if I'll need this test at some point, so it's good to see what it does. 💛
Thank you I'm scheduled tomorrow morning your video really helped me feel less stress...
Oh wow that's sounds good 96% passed by the end of yr scan... well done.
My gastric emptying test was awful and I had around 80% left in my stomach at the end of the test.
Not long had a colon transit study done and next week I have a barium swallow to be done. The colon transit study was awful as not aloud any laxatives or.to do my enemas...So I went 8 days with no movement and then when I was aloud to use my laxatives and enamas I was crying in so much pain I was so backed up, took me.about 5 days to get it all out. Now I'm back to my normal routine till I see the specialist to see if he thinks I need a illosty bag and a NJ tube or perminat tube. Xx best of luck to you xx
How you doing now
@@parthmadan2545 had a few NJ tube, managed 1 for a whole year bit other kept coming out so waiting to go in for my peg-j but due to covid the lists are so long. I'm still waiting for my loop ileostomy, had all my checks last may ready for surgery and still not had it. I have a rectal prolapse now aswell and my enemas are so much harder to Try to get out as my body just don't move anything.
How have u been doing now?
@@alysonp5844 im sorry for replying late i went to hospital just came back….have you tried lifestyle changes like exercising eating foods which are easy to digest and having liquid diet more.. and ur soo sooo brave and strong what’s ur age?
Im also facing some issues regarding my stomach and bowel movements like i had 2 meals yesterday and also today i had lunch and dinner but i didn’t felt urge to poop not even for a single time.. i think there is some issues with my pelvic nerves but sometimes i also feels like that the food is not moving and digesting.. I also have urinary issues Actually it all started with urinary issues from 5 months back and slowly I started having stomach issues loss of appetite No urge to poop.. bloating nausea etc.. i also have pins and needles sensations..headache.. jerks in my head basically you can say i have UROLOGICAL GASTROINTESTINAL NEUROLOGICAL all problems..
@@parthmadan2545 you seem very similar to me, I have twitches and jerks and it's due to a condition called myoclonus. Yes I have been on ensure plus advance liquid feeds for around 5 years now, I do try to have a few small bites when my partner has food but I can't actually have any food at my own the most I can manage is just a few small bites of the food and then I am in agony. My large bowel doesn't move at all and my rectal prolapse is quite severe, if I was to have my rectum fixed that would be a very big operation and I have said to my colorectal specialist that if I'm having my ileostomy it may just be better and all round to have the large bowel and rectum removed. They try to save it in case you would like to have it reversed but with my bowel being fully paralysed I am pretty certain I will never want to go back to the Way I am trying to live now I'm going to the toilet. I actually have a system called navina smart system and it holds 1.5 litres of fluid and I do about six of these every day or every other day karma as that is the only way I am able to try and get out as much stool as I can. I have to do when an enema and then I am lucky if I can pass half of that and then I have to put the next one in and rinse and repeat until I am satisfied and comfortable enough with what have managed to be evacuated.
I also have bladder problems I had a bladder stretch around about 10 years ago that didn't do anything to help me at all. I have been told I might have to start self-catheterization at some point but I'm hoping that I won't have to do that anytime soon. Back about 7 years ago I was going to the gym on a referral from the GP and I managed to stick to that for a year but the trainer that was looking after me noticed that I was deteriorating and getting worse and worse and in this time we also found out I have ehlers-danlos syndrome and postural orthostatic tachycardia syndrome along with many many more of the joint problems such as arthritis in si joint and lower spine also have osteopenia and the list goes on and on. I am 39 years old I will be 40 in July........ mind you mentally I don't feel it but physically I feel a hell of a lot of older than that. Have you had a small bowel Transit study done? Or possibly a barium swallow and esophageal manometry test.
Thank you so much for saying I'm brave I do appreciate that as I do try to stay positive and stay upbeat I find smiling and laughter to be the best medicine, also having a partner who is always there for me no matter what and looks after me so very well as he is my full-time carer I am very lucky.
So how are things going with you now? Also have they considered doing a follow-up gastric emptying test? I'm always about if you ever have any questions feel free to message me I'm always happy to openly talk about the bowel problems as there's not many if you bowl with ehlers-danlos syndrome but has the condition a severe with their bowels, I have found it very difficult to find people with ostomy bags due to having ehlers danlos syndrome. I don't know if you use any stool softeners I have to have them multiple times a day to help aid a make my enemies easier, was just wondering what you do to try and help you go to the toilet as maybe now and again an enema could help you but I definitely do not wish for you to get to the standard of enemas that I am at. Sending you lots of good luck and best wishes with everything and any investigations that you have to go through. Help this is coming OK I have voice dictated to my tablet and I'm hoping that it's all come out and you can understand it ok because it is 1:35 in the morning here and I'm a little tired to read over everything that I dictated lol xx
@@alysonp5844 i want to tell you everything about my story im from india and doctors are so careless here they don’t give a damn about anything even the private and big hospitals also they just want money i wanna tell you each and everything how it started and how im feeling now IM JUST 21 single child of my parents and I don’t know what i will do.. i try to he strong but i cry every day sometimes in bathroom sometimes in my blanket I don’t know why god is not helping i see my age of people roaming having drinks doing wrong things but still healthy i never had alcohol or cigarettes but still im facing all this .. You are so kind person we need people like you..Mam do you have any Instagram? Or whatsapp?
Thanks for sharing this video! I just had a tilt table and adrenergic testing this week, and my gastric emptying solid study is scheduled for next week. Peace and blessings to you on your medical journey!
I went through all of those tests as well. How did they turn out? Do you have one of the 13 types of Ehlers Danlos syndrome?
Thank goodness no lying on a table for 4 hours. My test is next week. A couple years ago I had a gallbladder HIDA scan that needed two hours lying on a table.
Thank you! This was so helpful because I’m getting a GES in 2 days!
Glad I could help! Good luck with your testing!
I’m getting this test I think I have gastroperisis and I am so nervous so this soothes me a bit ❤
My daughter is literally going through this right now as I speak. I figured about watching this while I am watching the grandbabies. I am hoping her test will reveal what is up. Thank you for posting this! On top of this, she has a broken tailbone in 3 spots and piece may be herniated. The end of her tailbone is pointed toward her colon and we worry about perforation. The broken tailbone she fell when she was pregnant with my granddaughter and she thought shebwas okay so she may have broken it then. Now my daughter is a tiny thing, and shen she had my grandson, he had a rather large head and between our connective tissue disorder, labor was way too much for her. So she has opted to not have any more children, because my grandosn was almost 2 pounds heavier than my granddaughter. Going from 6 lb baby to almost 8 was like yikes. So the babies keep getting bigger. So a few things going on. Im also going to have her elimate histamine foods and see if she feels better while we wait for the results. I am just hoping this can be controlled weel, without side effects should she be confirmed with gastroparesis. I also think she should have a food allergy test to rule out any food allergies. Maybe I am thinking too much? I would rather be thorough than be slacking in finding answers. Can anyone add to what my daughter may be going through, like anyone have also a very similar situation? I wonder if she should be tested for celiac as well?
Any update!!?
@@kalexis6484 Hi, my daughter emptied at a normal rate but it turns out she has SMAS. Her fat pad under the stomach and in between that and the liver is completelybgone making the arteries hang down. She had a feeding tube placed in back in March. It hasn't been working out too well because she is always feeling sick with these shakes and frankly they are full of junk inflammatory and hormone disrupting ingredients. If this shake doesn't work out for her they will have to put a centralized port in her chest. This is the 2nd type of shake she has been on now
How’s she now
I go tomorrow thank you!!!
I couldn’t eat the toast because of my celiac disease the guy who made the eggs kept apologizing with how bad they looked 😂
same but the last hour i ended up fine so they said mild case but not sure what to do now
I’m supposed to do this for early satiety because of my IBS but I’m terrified. So for this GES, they don’t make you eat or drink a crap ton at once.. just that small amount? My early satiety only lets me eat like a handful of pretzels and I’m full and feeling like I’m gonna puke all day and evening while trying to digest.
What do you mean radio acting I don’t even like eggs I was going to ask them can they do egg whites this is going to be very interesting I am doing this test on April 11
radio active - and i know for folks allergic to eggs they also can do this with oatmeal.
Had 2 Camera test now having this in a fortnight but opted to have the toast as I dont eat Eggs I'm defo going to have to Lay down for my test and not stand as acid reflux is better scanned laying
So it took a total of 4 hours?
I go to the Cleveland Clinic also. I go next month and have been pretty nervous but you made it sound more pleasant. I need it to confirm gastroparesis and then other tests for celiac disease and autoimmune pancreatitis. How long did you lay on a bed for?
Can you eat something else besides the egg. I can’t eat eggs I will definitely vomit.
there's normally toast to eat with it too but I'm allergic. I actually asked what happens if people are allergic to eggs/vegan. it can be done with oatmeal as well.
Depending on what has caused it. After extensive research, I have faith that they could be possible a way to effectively cure it or atleast reduce the symptoms. Gastroperesis caused by diabetes and autoimmune diseases is more difficult to treat but gastroperesis caused by physical injury to the vagus nerve during stomach or heart surgery is impossible to cure, especiallly it was cut and not just bruised. I recommend that we all buy a tens machine and tens ear clips which you can connect onto electrodes (wires) which connect to the machine. Research on low vagal tone and vagus nerve stimulation (tvns). Also research heart rate variability. Im going to also buy a strap on heart rate monitor with bluetooth to monitor my heart rate variabilty using an app. As you stimulate your vagus nerve, your heart rate viarability should increase, giving you an indication that your vagal tone is increasing. Also research on how and when to take readings. If you open you mouth at the back lies a hanging mass like a punching back (called the uvula). It should be hang straight down. If it is deviated to one side or does not retract when you say Ahhh, this could be a good indication that you vagus nerve has been damaged. The hypothesis is that by stimulating the vagus nerve,one could possibly treat or cure gastroperesis. Now this is still a new discovery medically and we are all different with other comorbidities. I dont even think doctors know this is possible. Alteast 99.999% of them don't. I have dysautonomia and gastorperesis.
See when our vagus nerve is damaged by long term physical or psychological trauma including stress or illness, gastroperesis and other symptoms kick in. Our bodies become stuck in the sympathetic state which is our figh or flight response to danger. By stimulating the vagus nerve with a tens machine and tens ear clips (saw them on ebay and Amazon) you will within time (see difference in 6 weeks) increase you vagal tone (more like lifting weight for muscles) thus retraining your body to activate your parasympathetic nervous system which is our rest and digest response. See our vagus nerve is there for homeostasis. When we perceive danger it kicks into the sympathetic state, widens our pupils and increases our heart rate, preparing our bodies for fight or flight, run away. This kind of stimulation (a light zap on the targus region of the ear) is said to reactivate our parasymapathetic vagus nerve which is the normal state of not being in danger, and which is when rest and digestion is prioritized. On a healthy vagal tone this is how our brain communicates with all our organs, through the vagus nerve (a two way phone line). The vagus nerve conducts every involuntary actions in our bodies like a perfectly timed symphony. If you have a poor functioning vagus nerve (low vagal tone) many other problems can arise. These are depression, anxiety, poor concentration, acid reflux, abnormal heartbeats and hoarse voice, difficulty swallowing, nauses, reduced stomach acids and regulating body temperature, insomnia, lightheadedness and chronic fatigue . The vagus never also controls hormonal releases and tells you when you are hungry or full. A normally functioning vagus nerve controls inflammation in our bodies which is why a low vagal tone is associated with many autoimmune diseases. These diseases cause neurapathy which is damage to the peripheral nerves including sometimes the vagus nerve. When the vagus nerve is affected, a form of dysautonomia results which is the malfunctioning of the autonomic nervous system. This in turn slows down gastrointestinal motility(movement), because the brain can no longer communicate effectively with your gut. The autonomic nervous system is the systems that controls all our involuntary bodily functions like our internal organs and blood pressure etc. Our stomaches don't expand as they should to accommodate food coming in when we eat and that is why we feel pain, nauseas or early fullness. The stomach muscle contractions are weak because the are controlled by the vagus nerve. The pyloric valve which opens up to let digested food out of the stomach and into the small interstines also mulfunctions, causing us to become bloated and to feel abdominal pains. Cells within the stomach can not tell the brain what foods we have consumed so that the right amount of acids within the right ph can be released, leading to food intolorences and malnutrition. That beautiful symphony between our internal organs and brain is messed up and needs to be rebalanced.
They are ways (you can search on the internent) to stimulate your vagus nerve without using a tens unit but they are less effective and more difficult to be consistent at. I'm from South Africa and I've had this seen June 2020. I have all sorts of symptoms and I'm going to give the tens unit and ear clips a shot. I really have much faith in it after researching on the topic plus it's really my last hope. Doctors here are quiet dismissive and you'll end up thinking you've all alone or that you've totally lost your mind. I have about 90% of the symptoms I wrote above and all the doctor is treating are symptoms with antidepressants and pain killers (the side effects where worse than what they were trying to treat, so I stopped the medications). I'm now just taking suppliments like magnesuim, multivitamins and vitamin b12. People with pace makers more especially a heart pacemakers or any electronic implants for that matter should not use the tens machine to stimulate the vagus nerve without talking to their doctors first as it could affect the way their pacer works. Trying to raise awareness about the possible treatment after months of self diagnosing myself and looking for a cure. The tens machine should not hurt but give a tolerable stimulation for about 20 minutes a day. I think people who say they were spontaneously healed from gastroperesis some how managed to regain their vagal tone or recover from a low vagal tone thus curing thier gastroperesis. I dont want to recommend a tens unit here but I have currently ordered one and a set of ear clips. On this model you can set the pulse rate and widths for better results. Praying and wishing everyone good luck. Remain positive and know that even if we find out that it does or does not cure gastroperesis, it has been proven to dramatically lessen the symptoms of gastroperesis and ones overall health in general. Spread the word if you find this method successful. God bless everyone.
www.purdue.edu/research/researchatpurdue/how-a-zap-might-cure-digestive-disorders
👁👄👁 me skimming over the text
@@edgyteenagefangirl4899 lol, I know it is long but I thought it was important enough to elaborate.
This is exactly why the vagus nerve stimulating medication Mestinon is used in treating both POTS and gastroparesis.
Another form of therapy that I have learnt about is neurofeedback. If the autonomic nervous system in the brain is dysfunction neurofeedback can rebalance the autonomic nervous system and this hopefully will treat gastroparesis. I think I have written a lot and investigated for almost a year now since my diagnosis. This is the most promising out of all the treatments options Ive tried. I just start treatment and noticed that my heart rate variability has increased in just 1 session. I have 19 more to go so I'll let you guys know.
@@nkadimashiane hi, what you have written is very eye opening and relates to me a lot. I have been recently diagnosed with POTS and I will be having a GE study by the end of August. For me I have a high heart rate variability and I am taking midodrine to increase my blood pressure since I am not getting enough blood to my head. I also have an extremely high heart rate when I stand up or move around. It was working very well, I am on the lowest dose however and I may need to increase it. I noticed that it cured my constipation. I am looking to take antidepressants since I have severe anxiety and depression because of my health. Any recommendations? I just turned 21 and have been dealing with this for a little over a year. I am also looking to increase my appetite. But I totally believe that there is something wrong with my vagus nerve.
Did the eggs taste weird or anything with the radioactive material in them? I'm supposed to have this test soon, so I was just curious! Thanks for sharing your experience with the gastric emptying test!!
Nope, I recall that they tasted pretty normal
I tasted something odd to the point it made me nauseous.
I put a packet of black pepper on my eggs, and didn't taste anything odd. The other people who were getting the test around the same time mentioned the eggs tasted icky to them, but they didn't put black pepper on their eggs.
Oh my goodness. I had the worst eggs. I put a full packet of salt and pepper on them 🤮. They let me leave after 3 hours. I just had the test yesterday.
The egg taste really bad,and it takes a long time.
hmm, interesting. Mine tasted totally normal. Gastric Emptying Tests can take a long time (up to 4 hours). Mine was so short because I digested my egg at an accelerated rate.
The trick is to put black pepper on the eggs to cover the icky taste.
so does the result mean you don't have gastroparesis?
I'm going to be making a video about my gastric emptying test results soon so stay tuned!
I do not have gastroparesis. I do however have accelerated digestion from all the adrenaline/POTS.
@@MeredithAleighaWells what helped you to manage pots? I was diagnosed of pots due to psych meds. Fatigue dizzy. Shortness of breath, weak.. But u look no pots at all.. What helped u?
@@morningwithgracie7870 Well I Definitely had POTS while filming this vlog and still do today 2 years later. It's just a little better managed now with a combo of diet, exercise, lifestyle modifications, and meds. Also getting a service dog made a big difference in regards to fainting. If you want more specifics feel free to reach out to me on instagram about setting up a 1-on-1 or follow and @dysfunctioningjustfine on instagram.
@@morningwithgracie7870 Popular medications for POTS include Atenolol, Propranolol, Ivabradine, Guanfacine, Clonidine, or Mestinon. Saline IV infusions can help certain people. Calf compression sleeves and/or physical therapy to put on more leg muscle can also be helpful. A good doctor can work with you to find what treatment options work best for you.
I'm on Mestinon, since it treats both POTS and gastroparesis/dysmotility. I also take a small dose of Guanfacine before bed, as it directly counteracts POTS by signalling the body not to dump so much norepinephrine and adrenaline into circulation.
4 hours?
Yes the test is generally 4 hours.
I have my scan tmrws and I’m so scared even tho I know it’s not going to hurt I’m just so nervous
In my 8 years of being poked and prodded and tested, this test was by far the chillest.
Man this is making me nerves the 22 I had to do a camera that had to go down my throat they didn't find anything to see what's wrong with my stomach 😔 now January 6 2020 I have to go back and the same doctor I have to do two more test it's the same thing as this video and im scared to do it and also I have to go and do a sonogram done which my main doctor said nothing is there I have do it again with a different doctor
How are you now
I have my test tomorrow
good luck!
How much does the test cost?
@@magicclips4216 a lot
Are motility issues common with POTS patients?
POTS is an autonomic disorder (dysautonomia) meaning anything that is controlled by your autonomic nervous system can be affected. So yes motility issues are common in pots patients.
yes
There are also underlying health conditions, such as one of the 13 different types of Ehlers Danlos syndrome, which can cause both POTS and gastroparesis.
Vagus nerve issues can also cause both, which is why the vagus nerve stimulating medication Mestinon is used in treating both POTS and gastroparesis.
I have the test in the morning :(((
Hey Guys! I also made a video about my Gastric Emptying Test Results so be sure to check that out too!
I go to the Cleveland Clinic also. I go next month and have been pretty nervous but you made it sound more pleasant. I need it to confirm gastroparesis and then other tests for celiac disease and autoimmune pancreatitis. How long did you lay on a bed for?