These pics speak a thousand words. I have lost 80 lbs, and people don't recognize me anymore. I am trying to raise awareness, myself. Hold on to hope, and of course, your son.
hi i was diagnosed with gastroparesis abought 4 years ag i have bean taking reglan but im thinking its not woking is well as it was i get theis weard burps that smell like rotin eggs and its so grose i think the food just sits in my stomick for to long and that wat happens i doent know what to ask my doctor to do abought geting me a new perscrition ant try that to see if that help thanks for the video it was way good.
I am viewing these videos... I have all the symptoms short of vomiting which I used to do years ago. Now I just think I don't want to so I take a stomach calmer from Shaklee. I see my doctor on Monday after my CT Scan this past Wednesday. I sure hope it is something easy like Gallstones. They found some but all the pain is on my left side so my insurance wont let me get it taken out. The pain is unbearable and getting worse monthly. I'm 52 and deciding that I'm done eating.
Hi! I write a blog about gastroparesis and have shared your video on my blog before...it is gastroparesisisme.blogspot.com. Please check it out. I have also shared your video on facebook because if you switched your face with mine, this would be my story. We are identical in our journey it seems. Your video has a great deal of meaning in my life. Thank you for making it.
When you had your gastric emptying study what was the percentage of food emptied after 4 hours...I was diagnosed and I have no symptoms at all...only because i was at 85% emptied after 4 hours and normal is 95-100. I did have severe heartburn but I stopped drinking Diet Coke and I seldom have it now.
Thanks for the information that you have shared..My boyfriend has been diagnosed with this and true point that support is very very important and I am studying and learning about this chronnic disease hourly so i will be more knowledge and know how to handle the good and the bad days that we are about to face ahead.... His WLS is dropping incredible fast and having trouble keeping food down..He is not at the point of a feeding tube..HEARTFELT
Thank you for sharing your story. I have had gastroparesis for about 3 years now. I was diagnosed with fibromyalgia in Feb of 2000. I was also diagnosed with Interstitial cystitis (inflamation of the bladder wall). I have a few other illnesses. They all are stemmed from fibromyalgia. About three years ago my IC to a break with meds and I have had no more problems with that so far. That is a very painful disease. I am now trying to go on the gastroparesis diet. I am praying it works.
@thexandershow I had commented on here before about having gp for over 10 years,and I had asked you about social security well I would like you to know that after a very long battle I was approved.I had to get a lawyer and see a judge but he agreed with my lawyer.I was in the hospital for 6 days and the day before I had my hearing I was released:).also I wanted to let every gper know that cannabis really helps me with my constant nausea and makes it possible for me to eat and not feel so sick!
so informative! I've been feeling crappy for a few months now and it's just getting worse and worse. Today my PCP called me and told me he spoke to my specialist and they're almost positive I have Gastroparesis. So yea, this video is the first real breakdown on this disease for me.
God bless you!!!!! <3 STAY positive! I'll subscribe.
oh and SIDENOTE; I was born with a condition called Cori's Disease.. I've had my first feeding tubes..
Thank u for sharing this. I was diagnosed in 2003 and have had all except a foot or 2 of large bowel. Very discouraging because most drs are ignorant to the fact that u dont always know the cause, so they say its in ur head. Has ruined my life.
do you ever vomit? i always feel so so nauseaus but never am sick.
i have just turned 14 , and was diagnosed about 2 years ago, but felt like it since I was about 10 but the doctors said it was all in my head. Now they have diagnosed me with gastroperisis. I have a feeding tube at the moment, and I have had I think all the procedures you mentioned, the 24hr tube one is horrible!!
I spent a LOT of time in hospital :/
no medication works, so Im waiting for the pacemaker, what is the injection?
this is weird. I was just diagnosed but I never vomit like most people. I gained 40 lbs so far & stay so bloated & miserable. I also have constant pain in my upper abdomen. I really thought it was from my gallbladder but no such luck. I guess getting used to the diet is going to be the hardest part.
nelly here,,,yea got gastroparesis,,,,pain in the ass,,,just trying to find stuff i can take,,like snacks instead of wee meal,,must get to liblary,,bookshop,,nont know a fiber to wheat,,dont really know difference,,,think im wary what to eat,,i need to get educated on this,,,nausia time at momnt,,,,noisy belly,,tired,,,appart fea that,,,im ok for now,,,,just concerned of lack of info in britain,,,we wont keep quiet,,,
Thanks for posting. This is such a misunderstood disorder. When you appear to be losing a "normal" amount of weight, everyone comes up to you and says, "Wow, you look great!" and then when you lose too much, everyone assumes you have an eating disorder. So little is known about gastroparesis that when I've mentioned it as the cause of my weight lost, people have assumed and accused me of making it up to cover for an eating disorder. If only they knew how much I'd love to eat!
Hey there i want to know more . i am suffering from strong pain just under my rib cage, alot of burping / gas and heartburn . Almost everything i eat i get these syptoms everyday. they decrease if i lay down on my side.well the sharp pain does i have done all tests including endoscopy and they say they found nothing . i believe its an ulcer. because my top stomach always tight and pain. i have had this for over a year please help . i have tried everything
@eliegmm hope they found your diagnosis by now.. but I had the same symptoms as you and a gi dr did an emptying scan but on my gallbladder. I had no stones but with the emptying scan it turns out your gallbladder empties the bile... should be at 100% but once you fall below 60 something then it needs to come out. My test showed my emptying was at 4%! I had my gallbladder removed and things got better but 1 year later I developed gastroparesis! its a hard test to have approved by ins.
I have this too, and I would feel sick after a few bites. I would eat a few bites every 15 minutes or so pretty much ALL day. People were always commenting on how much I was eating, it made me crazy. If I tried to eat a full meal, I would get so so sick. People are so judgmental it makes me crazy. I am on 'domperidone' right now, it's working well... I can eat full meals now like I haven't in years. Good luck and thanks for the video.
Water and wastewater infrastructure in the United States: It is is essential to protecting human health and the environment, and maintaining safe drinking water and clean water bodies.
One solution -- it's working for me.
Distilled Water.
It isn't idiopathic. It' iatrogenesis.
If you have a colonoscopy where tap water is used -- your risk goes up.
Here I am with you all loosing weight., I lost 10 Pounds this month.. I feel nausea all the time.. My stomach hurts from time to time.. I sometime try to eat just to see if that helps my nausea and it makes it worse.. at times its like Im force feeding myself.. Then when I feel up to eating I might be able to eat a kids size portion, if that sometimes it ends up being a few bights and Im full.. Its hard to even drink anything.. My bowels havent been normal in 17 yrs.. since I was a teen.. Blah
I have been dealing with the symptoms for several years and having many doctors in that time suggest that I need psychiatric care. I had an upper endoscopy done today and my doctor said there was still food in my stomach from a meal I had consumed more than 12 hours prior. He has referred me to nuclear medicine for further testing to basically confirm "gastroparesis".
Thank you for sharing this. I was recently diagnosed with gastroparesis. It was god awful. I went through so much, my doctor first thought I had IBS, we went from that to thinking I had a tape worm or some parasites. When my regular doctor couldnt find anything I was reffered to a GI. I had to endure an endoscopy, catscan and the gastric emptying test. I went from 125 lbs to 98 lbs in about 2 months. Im on mediaction now, but its still a stuggle. I hope you feel better :)
Hi, i was diagnosed with idiopathic gastroparesis last year when i was only 19..i'm now 21 and i have gotten a lot worse. Its hard to manage and i have now social anxiety because i get nervous that i'm going to be sick. So i have lost a lot of friends from this disease. I used to be a very active and energetic person, now i'm very lethargic and can not be bothered doing anything anymore.
I hope they find a cure soon, or at least something to help the symptoms :(...
@VisibleGaming I know how you feel, my doctors kept trying to blame it on stress, and trying to say I had an eating disorder. I was so furious that no one was believing me. Luckly I got a great GI and he found out what was wrong with me.
government = make money out of useless meds! like asprins which make the sympton worse! but tricking people into buying them! imagine if there was a cure? they will make no money!
i can't live a normal life now, i was diagnosed 2 weeks ago and on a all liquid diet.
My cure is staying faithful to allah because i know hes testing me on if ill loose my faith with him, i dont care if there is or isnt a cure.
Excellent video. I also have GP. Diagnosed March 2008. Was 284 and am 114 today. My body and life are melting away, and I had to quit working on June 30. So far i have not had a response from disability insurance. I only have 4 more months of insurance and rent saved up. After that . . . ???
Bummer about having GP. I have GP along with intestinal dysmotility and use an intestinal feeding tube for a majority of my nutrition. I have lost 45 pounds and have had similar experiences when people tell me how great I look. I'm often devastated by this because I'm underweight and am desperately trying to GAIN weight. People don't understand how debilitating it is to be sick and not be able to eat without getting sick. Stay strong and thanks for the upload!
Shiiit, very informative vid. I get nauseous when I eat (not large amounts, normal amounts) and once got sick from eating too much haha but I've only recently been like that and I think im getting better. Thank god I dont have it and I really sympathize for u because I thought I did, and there was no cure
But more importantly... is that a penguin in that office??
@ImTheKobold haha, yep it is. I really hated the nausia and vomiting the most. Now it's just about watching what I eat. Now I have been feeling hypoglycemic, probably because I don't eat fruits/veggies or meat, haha! I am glad you are feeling better.
@ImTheKobold thank you for sharing. You have mentioned some injections you take? I have never heard of this. I have had the disease for over 8 years now. I have a stomach that is completely dead. No meds help, and I don't qualify for the stomach pacer due to being beyond the point of that helping. Being hospitalized several times a year is expected, and I am in contact with my Dr 3 to 4x's a month minimum. I have 5 kids however, three which still live at home. This is the worst part!!!
@greenteaprincess09 Well, it's no fun but you can have decent days mixed in with the tough ones. Be an advocate for your health with your doctor, I had to push and fight from time to time to get the treatment I needed to feel better. Octreotide injections have made a difference, and the Bethanacol as well. I don't throw up anymore. Diet is key, low fiber, avoid raw fruits/veggies and I stay away from meat. Good luck!!!
Wow, this video really captures how I'm feeling right now. I noticed masses on my stomach three months ago and started to feel the pain two months ago. Since May 28th I have lost 18 pounds and have chronic abdominal pain. On 7/13/2010 I got the phone call from my G. I. doctor explaining how they found that I have Gastroparesis and they found it on the gastric emptying scan they did. What a relief to have a name to how I have been feeling. But what a shocker to find out how difficult this will be
God bless you dear, thank you for being so brave as to share yourself and condition with all of us here. May Jesus heal you and restore you completely according to His Will. I do have a question, you manage through diet and medication - what is your diet like? how do you prepare your foods and what can you tolerate? I blend all my food and can only tolerate certain foods... was wondering, just curious, what you do and can tolerate? I also receive nutrient IV therapy which really helps me.
@MyOwnStickFigure Hi! I was about a week away from a feeding tube when I made this video. I did not have to go down that path just yet, because I have been pretty stable. I eat cheese (low fat), bread, crackers, applesauce, pudding/jello, milk, yogurt, potatoes, rice and pasta. I also enjoy some soy/veggie products, like morningstar farms bacon/sausage and veggie burgers. I have to be careful with some of those because they can contain ingredients I can't digest.
i feel for you ive had idiopathic gastroparesis for ten years, i had a neurostimulator fitted 7 years ago and everything wasgoing fine but even thats having problems now. im on the verge of losing my job and this illness isnt a reconised disability in the uk. Hope all goes well for you.
@mrlordsnooty Hi! Sorry about your job. Honestly I think being away from my job has helped me a lot. I would get stressed out from missing work when I was sick, then I would be sicker from being stressed out and miss more work and the cycle continues. I have heard a lot of suggestions, like finding consulting work, or working from home if possible. I could see how that would/could be difficult, on bad days.
I am 28 and I have had gastroparesis for over 10 years now and I know how you feel. I have been in and out of the hospital so many times I lost count. Everyday is a struggle, my last spell was april the 10th, which landed me in the hospital for thee days. Though I am not happy that you have to go through this, I want to thankyou for showing me that I am not alone in this fight. I am at the moment I am trying 2 get ssi, but I keep getting denied. My question is have you tried for it & if so
@ComoMiel Hey! I am currently on Short Term Disability from my job, and when that ends, it will convert to Long Term Disability. But no, not SSI yet. On the Inspire site I also use there are a few discussions about SSI and lots that have been approved for it. What I've heard is you need a lawyer and you will be denied at first, just try again!
I'm now about 2mo into diag, but i have had this my whole life. do you think that SX is an option for you? how long ago was your diag? how r u doing now?
@logan3306 So far the doctors just seem to "hope I will get better" since it was idiopathic and just came on. I had surgery Dec 31, 2008 for an ectoic pregnancy and I started feeling sick after this.
@thexandershow I'm not as good with the diet, i do stick to it most of the time but like i said i'v always been this way so i guess i'm just used to the feeling after a meal. I'm not to the point of V after a meal but i know that will come with time so i'm trying to stick to the diet as much as i can. I also have GERD, acid reflex, IBS, hiatal hernia and Lactose intol. as well as a long list of oral meds.
@logan3306 I am not vomiting as much, and I seem to be tolerating the Octreotide better this time. I was on the injections for about 11 days and ended up completely incapacitated but this time I feel much better.
@thexandershow I was tell you about the soy milk and you said that your diet is alot of dairy. soy milk is good for the potien and other vit. it may just be a good way for you to fit that protien in that we just have a hard time with!
@logan3306 During the small bowel monomentry, Octreotide made my stomach muscles move so I am really hopeful with it. It's bee about 16 or so days this time around and I don't feel terrible this time so that's awesome. Maybe it was coincidence last time? I still feel really naseous and have abdominal pain pretty much every day. How are you? I really control my diet, and I think that helps.
@thexandershow I got very sick in Sep 09 and was in the hospital 2 nights for pain. months, test and alot of $ later i now have the laundry list above and no galbladder. I'm still in the OMG stage and trying to work my life around all this. It's nice to find another person on the planet that has some ideah waht im tlking about though!!
@logan3306 Exactly how I feel! I read and post some things on the Inspire website, it's really cool. A lot of the people on that site have been through tests or tried certain food items or medications and share their results to help others. G-pact is also pretty cool, they have facebook page too.
These pics speak a thousand words. I have lost 80 lbs, and people don't recognize me anymore. I am trying to raise awareness, myself. Hold on to hope, and of course, your son.
unfoundbassist 3 months ago
hi i was diagnosed with gastroparesis abought 4 years ag i have bean taking reglan but im thinking its not woking is well as it was i get theis weard burps that smell like rotin eggs and its so grose i think the food just sits in my stomick for to long and that wat happens i doent know what to ask my doctor to do abought geting me a new perscrition ant try that to see if that help thanks for the video it was way good.
sadihymas 4 months ago
I am viewing these videos... I have all the symptoms short of vomiting which I used to do years ago. Now I just think I don't want to so I take a stomach calmer from Shaklee. I see my doctor on Monday after my CT Scan this past Wednesday. I sure hope it is something easy like Gallstones. They found some but all the pain is on my left side so my insurance wont let me get it taken out. The pain is unbearable and getting worse monthly. I'm 52 and deciding that I'm done eating.
mmcgriffful 4 months ago
This has been flagged as spam show
Hi! I write a blog about gastroparesis and have shared your video on my blog before...it is gastroparesisisme.blogspot.com. Please check it out. I have also shared your video on facebook because if you switched your face with mine, this would be my story. We are identical in our journey it seems. Your video has a great deal of meaning in my life. Thank you for making it.
Mehimandkids 7 months ago
When you had your gastric emptying study what was the percentage of food emptied after 4 hours...I was diagnosed and I have no symptoms at all...only because i was at 85% emptied after 4 hours and normal is 95-100. I did have severe heartburn but I stopped drinking Diet Coke and I seldom have it now.
sweetmelissa1966 8 months ago
Thanks for the information that you have shared..My boyfriend has been diagnosed with this and true point that support is very very important and I am studying and learning about this chronnic disease hourly so i will be more knowledge and know how to handle the good and the bad days that we are about to face ahead.... His WLS is dropping incredible fast and having trouble keeping food down..He is not at the point of a feeding tube..HEARTFELT
Sexyyyy1990 8 months ago
Thank you for sharing your story. I have had gastroparesis for about 3 years now. I was diagnosed with fibromyalgia in Feb of 2000. I was also diagnosed with Interstitial cystitis (inflamation of the bladder wall). I have a few other illnesses. They all are stemmed from fibromyalgia. About three years ago my IC to a break with meds and I have had no more problems with that so far. That is a very painful disease. I am now trying to go on the gastroparesis diet. I am praying it works.
sziggieful 9 months ago
@thexandershow I had commented on here before about having gp for over 10 years,and I had asked you about social security well I would like you to know that after a very long battle I was approved.I had to get a lawyer and see a judge but he agreed with my lawyer.I was in the hospital for 6 days and the day before I had my hearing I was released:).also I wanted to let every gper know that cannabis really helps me with my constant nausea and makes it possible for me to eat and not feel so sick!
ComoMiel 9 months ago
oh wow.
thanks for this video, THANK YOU SO MUCH!!!
so informative! I've been feeling crappy for a few months now and it's just getting worse and worse. Today my PCP called me and told me he spoke to my specialist and they're almost positive I have Gastroparesis. So yea, this video is the first real breakdown on this disease for me.
God bless you!!!!! <3 STAY positive! I'll subscribe.
oh and SIDENOTE; I was born with a condition called Cori's Disease.. I've had my first feeding tubes..
reneelillian 10 months ago
Thank u for sharing this. I was diagnosed in 2003 and have had all except a foot or 2 of large bowel. Very discouraging because most drs are ignorant to the fact that u dont always know the cause, so they say its in ur head. Has ruined my life.
GuyDavis12 10 months ago
Thank u for sharing this. I was diagnosed in 2003 and have had all except a foot or 2 of large bowe
GuyDavis12 10 months ago
&&thankyou for posting this video!
EmilieLouisee 10 months ago
do you ever vomit? i always feel so so nauseaus but never am sick.
i have just turned 14 , and was diagnosed about 2 years ago, but felt like it since I was about 10 but the doctors said it was all in my head. Now they have diagnosed me with gastroperisis. I have a feeding tube at the moment, and I have had I think all the procedures you mentioned, the 24hr tube one is horrible!!
I spent a LOT of time in hospital :/
no medication works, so Im waiting for the pacemaker, what is the injection?
EmilieLouisee 10 months ago
this is weird. I was just diagnosed but I never vomit like most people. I gained 40 lbs so far & stay so bloated & miserable. I also have constant pain in my upper abdomen. I really thought it was from my gallbladder but no such luck. I guess getting used to the diet is going to be the hardest part.
xeena67 11 months ago
nelly here,,,yea got gastroparesis,,,,pain in the ass,,,just trying to find stuff i can take,,like snacks instead of wee meal,,must get to liblary,,bookshop,,nont know a fiber to wheat,,dont really know difference,,,think im wary what to eat,,i need to get educated on this,,,nausia time at momnt,,,,noisy belly,,tired,,,appart fea that,,,im ok for now,,,,just concerned of lack of info in britain,,,we wont keep quiet,,,
gastropasesis96 1 year ago
Thanks for posting. This is such a misunderstood disorder. When you appear to be losing a "normal" amount of weight, everyone comes up to you and says, "Wow, you look great!" and then when you lose too much, everyone assumes you have an eating disorder. So little is known about gastroparesis that when I've mentioned it as the cause of my weight lost, people have assumed and accused me of making it up to cover for an eating disorder. If only they knew how much I'd love to eat!
VigilanteSilver 1 year ago
Hey there i want to know more . i am suffering from strong pain just under my rib cage, alot of burping / gas and heartburn . Almost everything i eat i get these syptoms everyday. they decrease if i lay down on my side.well the sharp pain does i have done all tests including endoscopy and they say they found nothing . i believe its an ulcer. because my top stomach always tight and pain. i have had this for over a year please help . i have tried everything
eliegmm 1 year ago
@eliegmm hope they found your diagnosis by now.. but I had the same symptoms as you and a gi dr did an emptying scan but on my gallbladder. I had no stones but with the emptying scan it turns out your gallbladder empties the bile... should be at 100% but once you fall below 60 something then it needs to come out. My test showed my emptying was at 4%! I had my gallbladder removed and things got better but 1 year later I developed gastroparesis! its a hard test to have approved by ins.
marachi01 2 months ago
I have this too, and I would feel sick after a few bites. I would eat a few bites every 15 minutes or so pretty much ALL day. People were always commenting on how much I was eating, it made me crazy. If I tried to eat a full meal, I would get so so sick. People are so judgmental it makes me crazy. I am on 'domperidone' right now, it's working well... I can eat full meals now like I haven't in years. Good luck and thanks for the video.
montyollie 1 year ago
One cause unexplored.
Water and wastewater infrastructure in the United States: It is is essential to protecting human health and the environment, and maintaining safe drinking water and clean water bodies.
One solution -- it's working for me.
Distilled Water.
It isn't idiopathic. It' iatrogenesis.
If you have a colonoscopy where tap water is used -- your risk goes up.
boisbleu2 1 year ago
Here I am with you all loosing weight., I lost 10 Pounds this month.. I feel nausea all the time.. My stomach hurts from time to time.. I sometime try to eat just to see if that helps my nausea and it makes it worse.. at times its like Im force feeding myself.. Then when I feel up to eating I might be able to eat a kids size portion, if that sometimes it ends up being a few bights and Im full.. Its hard to even drink anything.. My bowels havent been normal in 17 yrs.. since I was a teen.. Blah
LORIANNMCCART 1 year ago
I have been dealing with the symptoms for several years and having many doctors in that time suggest that I need psychiatric care. I had an upper endoscopy done today and my doctor said there was still food in my stomach from a meal I had consumed more than 12 hours prior. He has referred me to nuclear medicine for further testing to basically confirm "gastroparesis".
txmomoftwo1 1 year ago
Thank you for sharing this. I was recently diagnosed with gastroparesis. It was god awful. I went through so much, my doctor first thought I had IBS, we went from that to thinking I had a tape worm or some parasites. When my regular doctor couldnt find anything I was reffered to a GI. I had to endure an endoscopy, catscan and the gastric emptying test. I went from 125 lbs to 98 lbs in about 2 months. Im on mediaction now, but its still a stuggle. I hope you feel better :)
CBrideEmily 1 year ago
Hi, i was diagnosed with idiopathic gastroparesis last year when i was only 19..i'm now 21 and i have gotten a lot worse. Its hard to manage and i have now social anxiety because i get nervous that i'm going to be sick. So i have lost a lot of friends from this disease. I used to be a very active and energetic person, now i'm very lethargic and can not be bothered doing anything anymore.
I hope they find a cure soon, or at least something to help the symptoms :(...
stephmccade 1 year ago
Never wish to have this illness!
imagine. not able to eat.
imagine. a suicidle thought going through your head.
imagine. vomiting constantly.
imagine. feeling like your living in your own world.
VisibleGaming 1 year ago
@thexandershow
And the part where it said "misdiagnosed before finding out the truth"
i was misdiagnosed with stomach virus for 3months! and kept telling the doctors i dont have ****ing diarrhea!
VisibleGaming 1 year ago
@VisibleGaming I know how you feel, my doctors kept trying to blame it on stress, and trying to say I had an eating disorder. I was so furious that no one was believing me. Luckly I got a great GI and he found out what was wrong with me.
CBrideEmily 1 year ago
@thexandershow
Please! listen! there will never be a cure! look!
government = make money out of useless meds! like asprins which make the sympton worse! but tricking people into buying them! imagine if there was a cure? they will make no money!
i can't live a normal life now, i was diagnosed 2 weeks ago and on a all liquid diet.
My cure is staying faithful to allah because i know hes testing me on if ill loose my faith with him, i dont care if there is or isnt a cure.
VisibleGaming 1 year ago
Excellent video. I also have GP. Diagnosed March 2008. Was 284 and am 114 today. My body and life are melting away, and I had to quit working on June 30. So far i have not had a response from disability insurance. I only have 4 more months of insurance and rent saved up. After that . . . ???
lonesumtee 1 year ago
Bummer about having GP. I have GP along with intestinal dysmotility and use an intestinal feeding tube for a majority of my nutrition. I have lost 45 pounds and have had similar experiences when people tell me how great I look. I'm often devastated by this because I'm underweight and am desperately trying to GAIN weight. People don't understand how debilitating it is to be sick and not be able to eat without getting sick. Stay strong and thanks for the upload!
2136cass 1 year ago
Shiiit, very informative vid. I get nauseous when I eat (not large amounts, normal amounts) and once got sick from eating too much haha but I've only recently been like that and I think im getting better. Thank god I dont have it and I really sympathize for u because I thought I did, and there was no cure
But more importantly... is that a penguin in that office??
ImTheKobold 1 year ago
@ImTheKobold haha, yep it is. I really hated the nausia and vomiting the most. Now it's just about watching what I eat. Now I have been feeling hypoglycemic, probably because I don't eat fruits/veggies or meat, haha! I am glad you are feeling better.
thexandershow 1 year ago
@ImTheKobold thank you for sharing. You have mentioned some injections you take? I have never heard of this. I have had the disease for over 8 years now. I have a stomach that is completely dead. No meds help, and I don't qualify for the stomach pacer due to being beyond the point of that helping. Being hospitalized several times a year is expected, and I am in contact with my Dr 3 to 4x's a month minimum. I have 5 kids however, three which still live at home. This is the worst part!!!
1968wheat 10 months ago
I was just diagnosed with it today. I'm 19.
greenteaprincess09 1 year ago
@greenteaprincess09 Well, it's no fun but you can have decent days mixed in with the tough ones. Be an advocate for your health with your doctor, I had to push and fight from time to time to get the treatment I needed to feel better. Octreotide injections have made a difference, and the Bethanacol as well. I don't throw up anymore. Diet is key, low fiber, avoid raw fruits/veggies and I stay away from meat. Good luck!!!
thexandershow 1 year ago
Wow, this video really captures how I'm feeling right now. I noticed masses on my stomach three months ago and started to feel the pain two months ago. Since May 28th I have lost 18 pounds and have chronic abdominal pain. On 7/13/2010 I got the phone call from my G. I. doctor explaining how they found that I have Gastroparesis and they found it on the gastric emptying scan they did. What a relief to have a name to how I have been feeling. But what a shocker to find out how difficult this will be
Nirvanamosh1 1 year ago
God bless you dear, thank you for being so brave as to share yourself and condition with all of us here. May Jesus heal you and restore you completely according to His Will. I do have a question, you manage through diet and medication - what is your diet like? how do you prepare your foods and what can you tolerate? I blend all my food and can only tolerate certain foods... was wondering, just curious, what you do and can tolerate? I also receive nutrient IV therapy which really helps me.
MyOwnStickFigure 1 year ago
@MyOwnStickFigure Hi! I was about a week away from a feeding tube when I made this video. I did not have to go down that path just yet, because I have been pretty stable. I eat cheese (low fat), bread, crackers, applesauce, pudding/jello, milk, yogurt, potatoes, rice and pasta. I also enjoy some soy/veggie products, like morningstar farms bacon/sausage and veggie burgers. I have to be careful with some of those because they can contain ingredients I can't digest.
thexandershow 1 year ago
i feel for you ive had idiopathic gastroparesis for ten years, i had a neurostimulator fitted 7 years ago and everything wasgoing fine but even thats having problems now. im on the verge of losing my job and this illness isnt a reconised disability in the uk. Hope all goes well for you.
mrlordsnooty 1 year ago
@mrlordsnooty Hi! Sorry about your job. Honestly I think being away from my job has helped me a lot. I would get stressed out from missing work when I was sick, then I would be sicker from being stressed out and miss more work and the cycle continues. I have heard a lot of suggestions, like finding consulting work, or working from home if possible. I could see how that would/could be difficult, on bad days.
thexandershow 1 year ago
I am 28 and I have had gastroparesis for over 10 years now and I know how you feel. I have been in and out of the hospital so many times I lost count. Everyday is a struggle, my last spell was april the 10th, which landed me in the hospital for thee days. Though I am not happy that you have to go through this, I want to thankyou for showing me that I am not alone in this fight. I am at the moment I am trying 2 get ssi, but I keep getting denied. My question is have you tried for it & if so
ComoMiel 1 year ago
@ComoMiel Hey! I am currently on Short Term Disability from my job, and when that ends, it will convert to Long Term Disability. But no, not SSI yet. On the Inspire site I also use there are a few discussions about SSI and lots that have been approved for it. What I've heard is you need a lawyer and you will be denied at first, just try again!
thexandershow 1 year ago
I'm now about 2mo into diag, but i have had this my whole life. do you think that SX is an option for you? how long ago was your diag? how r u doing now?
logan3306 1 year ago
@logan3306 So far the doctors just seem to "hope I will get better" since it was idiopathic and just came on. I had surgery Dec 31, 2008 for an ectoic pregnancy and I started feeling sick after this.
thexandershow 1 year ago
@thexandershow I'm not as good with the diet, i do stick to it most of the time but like i said i'v always been this way so i guess i'm just used to the feeling after a meal. I'm not to the point of V after a meal but i know that will come with time so i'm trying to stick to the diet as much as i can. I also have GERD, acid reflex, IBS, hiatal hernia and Lactose intol. as well as a long list of oral meds.
logan3306 1 year ago
@logan3306 I am not vomiting as much, and I seem to be tolerating the Octreotide better this time. I was on the injections for about 11 days and ended up completely incapacitated but this time I feel much better.
thexandershow 1 year ago
@thexandershow I was tell you about the soy milk and you said that your diet is alot of dairy. soy milk is good for the potien and other vit. it may just be a good way for you to fit that protien in that we just have a hard time with!
logan3306 1 year ago
@logan3306 During the small bowel monomentry, Octreotide made my stomach muscles move so I am really hopeful with it. It's bee about 16 or so days this time around and I don't feel terrible this time so that's awesome. Maybe it was coincidence last time? I still feel really naseous and have abdominal pain pretty much every day. How are you? I really control my diet, and I think that helps.
thexandershow 1 year ago
@thexandershow I got very sick in Sep 09 and was in the hospital 2 nights for pain. months, test and alot of $ later i now have the laundry list above and no galbladder. I'm still in the OMG stage and trying to work my life around all this. It's nice to find another person on the planet that has some ideah waht im tlking about though!!
logan3306 1 year ago
@logan3306 Exactly how I feel! I read and post some things on the Inspire website, it's really cool. A lot of the people on that site have been through tests or tried certain food items or medications and share their results to help others. G-pact is also pretty cool, they have facebook page too.
thexandershow 1 year ago