Gastroparesis with severe symptoms!

Posted by paarak @paarak, Jul 17, 2011

Does anyone have gastroparesis (low stomach emptying) and what are you doing to manage the problem. I was finally diagnoised with this condition this year after at least 3plus years of unexplained illness. Most of my symtoms were related to pain in the chest; deep back shoulder pain; lightheaded/dizzyness; I always felt like I was having a heart attack. But each time I went to the ER all the heart test came back fine and was told it was just acid reflux. I have been to cardiology; neuralogy; gastrology. I have had heart test; stress test;;thryrod; diabectic test; all kinds of blood test (only showed low vit D) MRI of brain; spinal tap. Finally had stomach emptying test in March – which showed 85% food still in stomach after 3 hours. I have had to switch to a no fat; low fiber diet – pretty much all liquid; soft (babyfood like) foods. If I do experiment and eat something that doesn’t move through – then I end up with the deep shoulder pain; lighthed/dizziness;; numbness in the arms/fingers and over all wekness. In order to overcome this feeling – It seems to work by drinking just water /gator aid for at least a day. I just don’t know if this all started by a nerve damage issue or if it is reverserble. I have done a lot of internet reading and there doesn’t seem to be anything to do except eating habit changes. And no one else seems to associate the pain I have with the stomach – I never seem to have stomach pain – Only fullness; nausea; bloating/gas. I also am not diabetic. Which my understanding is a reason for this condition. If you have this condition – what are your symtoms and how are you managing? Thanks

@shimmerpixie

I was diagnosed with IBS when I was 18. I’m now 30. Early in 2011, I saw a new GI doc for unexplained feelings of fullness after eating a very small amount of food, nausea and vomiting and severe pain- all revolving around eating. He ordered a gastric emptying studying and told me I had “mild delayed emptying,” which he classified as “mild gastroparesis” on my chart. He gave me Zofran 4 mg to take as needed and hyosciamine for stomach spasms. At the beginning of this year, lost 15 pounds in 2 months due to the worsening of these symptoms. I’ve had many sleepless nights with a horribly painful distended stomach- last night being one of the worst- and I’m on 3 nausea medications- tigin, emend and marinol- and heavy doses of all 3. I was in the hospital in February for 2 weeks with an NG tube and sent home with the medications I mentioned. I was severely dehydrated when admitted, as I’m not always able to tolerate liquids either. My GI doc requested a psych consult and I was grilled by a psychiatrist and his nurse as soon as I had a bed and fluids had been started. The outcome of this was that I did not need additional psychological intervention. (I see a therapist every 2 weeks b/c of this and other chronic pain I deal with- Fibro and osteoarthritis). So here is where I’m at: I was supposed to get in with a doctor who has access to a trial drug, but I was denied access to the program because my scan only shows mild delayed emptying. Yet my symptoms are of someone with a very severe form of it. The psychiatrist determined it’s not psychological. So what am I supposed to do?? The only reason I’m gaining weight is due to the marinol, which increases my appetite but then I have to deal with the pain and nausea of eating. I don’t vomit as much, because of the drugs, but I still feel nauseated after eating (even on an full liquid diet). I’ve kept food diaries for years and tried everything. I tried gluten-free. I eliminated “toxic” chemicals (those found in diet pop), caffeine- you name it, I’ve tried it BEFORE this took over my llfe in January and I’m continuing to eat as tolerated but I’m in hell. Does anyone else have a gastric emptying test that shows mild delay, yet you have severe symptoms? If so, I would love to hear from you. I hate the marinol b/c it doesn’t help much with the nausea and makes me want to eat, after which I feel horrible. Please please tell me there is someone like me out there, and that help is available. Any and all replies are appreciated.
~Stephanie~
P.S. I was in the ER last twice last week due to dehydration and pain that is unbelievable and off the charts. I don’t understand πŸ™

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Hello @shimmerpixie and everyone in this group. I have had chronic constipation for over 10 years and also suffered from eating disorders for over 25 years and still struggle but am much better. I saw specialists and they told me all the wrong things to do like take more fiber. I told them it made things worse but this went on for 10 years until a couple months ago I had a gastric emptying study done and was diagnosed with Gastroparesis. The first thing I asked was if my eating disorder history was the cause and they said it's not related. Mine is idiopathic. This past week things have worsened a lot. I don't vomit but have some acid reflux. I get severely distended and bloated (accompanied by pain) and sometimes pass an insane amount of gas at night. The symptoms seem to increase throughout the day. I am just learning about all this and am being sent to UW Madison Hospital for further testing and counseling as to how I can still maintain recovery in my eating disorder and not eliminate foods that I normally eat which are all on the "NO" list. I can not take Erythromyacin because of an interaction with another medication and also the expense of it with prescription insurance was almost $200 a month which I can't afford long term They just started me on a trial of Trulance. I am thankful for all of your stories and hope that we can be a source of information and encouragement as we continue on this journey. Much love to all of you…

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@shimmerpixie

I was diagnosed with IBS when I was 18. I’m now 30. Early in 2011, I saw a new GI doc for unexplained feelings of fullness after eating a very small amount of food, nausea and vomiting and severe pain- all revolving around eating. He ordered a gastric emptying studying and told me I had “mild delayed emptying,” which he classified as “mild gastroparesis” on my chart. He gave me Zofran 4 mg to take as needed and hyosciamine for stomach spasms. At the beginning of this year, lost 15 pounds in 2 months due to the worsening of these symptoms. I’ve had many sleepless nights with a horribly painful distended stomach- last night being one of the worst- and I’m on 3 nausea medications- tigin, emend and marinol- and heavy doses of all 3. I was in the hospital in February for 2 weeks with an NG tube and sent home with the medications I mentioned. I was severely dehydrated when admitted, as I’m not always able to tolerate liquids either. My GI doc requested a psych consult and I was grilled by a psychiatrist and his nurse as soon as I had a bed and fluids had been started. The outcome of this was that I did not need additional psychological intervention. (I see a therapist every 2 weeks b/c of this and other chronic pain I deal with- Fibro and osteoarthritis). So here is where I’m at: I was supposed to get in with a doctor who has access to a trial drug, but I was denied access to the program because my scan only shows mild delayed emptying. Yet my symptoms are of someone with a very severe form of it. The psychiatrist determined it’s not psychological. So what am I supposed to do?? The only reason I’m gaining weight is due to the marinol, which increases my appetite but then I have to deal with the pain and nausea of eating. I don’t vomit as much, because of the drugs, but I still feel nauseated after eating (even on an full liquid diet). I’ve kept food diaries for years and tried everything. I tried gluten-free. I eliminated “toxic” chemicals (those found in diet pop), caffeine- you name it, I’ve tried it BEFORE this took over my llfe in January and I’m continuing to eat as tolerated but I’m in hell. Does anyone else have a gastric emptying test that shows mild delay, yet you have severe symptoms? If so, I would love to hear from you. I hate the marinol b/c it doesn’t help much with the nausea and makes me want to eat, after which I feel horrible. Please please tell me there is someone like me out there, and that help is available. Any and all replies are appreciated.
~Stephanie~
P.S. I was in the ER last twice last week due to dehydration and pain that is unbelievable and off the charts. I don’t understand πŸ™

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@shimmerpixie I just came across your original post, have you had your symptoms sorted out yet? I also have areas in my colon that are slow…. then some that are fast?? Anyways your symptoms sound similar and I have been diagnosed with MALS, FMD and EDS. Would like to know if you have had any vascular workup?

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@shimmerpixie

I was diagnosed with IBS when I was 18. I’m now 30. Early in 2011, I saw a new GI doc for unexplained feelings of fullness after eating a very small amount of food, nausea and vomiting and severe pain- all revolving around eating. He ordered a gastric emptying studying and told me I had “mild delayed emptying,” which he classified as “mild gastroparesis” on my chart. He gave me Zofran 4 mg to take as needed and hyosciamine for stomach spasms. At the beginning of this year, lost 15 pounds in 2 months due to the worsening of these symptoms. I’ve had many sleepless nights with a horribly painful distended stomach- last night being one of the worst- and I’m on 3 nausea medications- tigin, emend and marinol- and heavy doses of all 3. I was in the hospital in February for 2 weeks with an NG tube and sent home with the medications I mentioned. I was severely dehydrated when admitted, as I’m not always able to tolerate liquids either. My GI doc requested a psych consult and I was grilled by a psychiatrist and his nurse as soon as I had a bed and fluids had been started. The outcome of this was that I did not need additional psychological intervention. (I see a therapist every 2 weeks b/c of this and other chronic pain I deal with- Fibro and osteoarthritis). So here is where I’m at: I was supposed to get in with a doctor who has access to a trial drug, but I was denied access to the program because my scan only shows mild delayed emptying. Yet my symptoms are of someone with a very severe form of it. The psychiatrist determined it’s not psychological. So what am I supposed to do?? The only reason I’m gaining weight is due to the marinol, which increases my appetite but then I have to deal with the pain and nausea of eating. I don’t vomit as much, because of the drugs, but I still feel nauseated after eating (even on an full liquid diet). I’ve kept food diaries for years and tried everything. I tried gluten-free. I eliminated “toxic” chemicals (those found in diet pop), caffeine- you name it, I’ve tried it BEFORE this took over my llfe in January and I’m continuing to eat as tolerated but I’m in hell. Does anyone else have a gastric emptying test that shows mild delay, yet you have severe symptoms? If so, I would love to hear from you. I hate the marinol b/c it doesn’t help much with the nausea and makes me want to eat, after which I feel horrible. Please please tell me there is someone like me out there, and that help is available. Any and all replies are appreciated.
~Stephanie~
P.S. I was in the ER last twice last week due to dehydration and pain that is unbelievable and off the charts. I don’t understand πŸ™

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Hi to you and anyone who can help me, as I'M DESPERATE: I was diagnosed with gastroparesis (rate about 33% after 5 hours, I think) over a year ago. I've had two gastric emptying studies. I've had MRI's of the abdomen and pelvis which are okay. I have had numerous endoscopies, and a capsule endoscopy. The battery from the capsule endoscopy died before it passed through my stomach. I've been to at least four gastroenterologists. The motility doctor at Columbia Presbyterian thinks my symptoms are from gastroparesis. Another gastroenterologist doesn't think so, but he is unable to pinpoint where my symptoms are coming from!!!! I am CONSTANTLY NAUSEOUS, HAVE DRY GAGGING, FEEL FULL, AND SOMETIMES I CANNOT EAT. FOR THE PAST SIX MONTHS, I'VE BEEN LIVING ON SOUP, CRACKERS, AND WHATEVER I CAN FORCE MYSELF TO EAT WHICH IS BLAND. I GET NO RELIEF! I'VE BEEN LIVING A MISERABLE EXISTENCE ON THE COUCH. I AM 65, AND I GO TO THE YMCA THREE TIMES A WEEK. THAT HAS BEEN DIMINISHED DUE TO THIS CONDITION, WHATEVER IT IS. DOES ANYONE HAVE ANSWERS FOR ME? I CANNOT TAKE THE MEDICATIONS PRESCRIBED, BECAUSE I AM ON AN SSRI AND ANXIETY DRUG FOR YEARS. ANY ANTI-EMETIC DRUG IS CONTRAINDICATED WITH THESE OTHER MEDS. WHAT SHOULD I DO? WHAT ELSE COULD BE CAUSING MY PROBLEM? I HAVE LOST 10 POUNDS SINCE AUGUST. I HAVE HORRIBLE NUTRITION. I DRINK BOOST. I CAN'T EAT VEGETABLES EXCEPT FOR SQUASH. MAYO CLINIC DENIED ME AN APPOINTMENT BASED UPON MY GASTRIC EMPTYING STUDY. THEY SAID THAT ALL WAS BEING DONE FOR ME IN NEW YORK! DOES ANYONE GET IT????? I'll take any answers and suggestions anyone may have. We know I have gasgroparesis, but are my symptoms coming from that disorder? I have a lousy primary doctor who cannot help me. What should I do???? Please help.

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@lell

Hi to you and anyone who can help me, as I'M DESPERATE: I was diagnosed with gastroparesis (rate about 33% after 5 hours, I think) over a year ago. I've had two gastric emptying studies. I've had MRI's of the abdomen and pelvis which are okay. I have had numerous endoscopies, and a capsule endoscopy. The battery from the capsule endoscopy died before it passed through my stomach. I've been to at least four gastroenterologists. The motility doctor at Columbia Presbyterian thinks my symptoms are from gastroparesis. Another gastroenterologist doesn't think so, but he is unable to pinpoint where my symptoms are coming from!!!! I am CONSTANTLY NAUSEOUS, HAVE DRY GAGGING, FEEL FULL, AND SOMETIMES I CANNOT EAT. FOR THE PAST SIX MONTHS, I'VE BEEN LIVING ON SOUP, CRACKERS, AND WHATEVER I CAN FORCE MYSELF TO EAT WHICH IS BLAND. I GET NO RELIEF! I'VE BEEN LIVING A MISERABLE EXISTENCE ON THE COUCH. I AM 65, AND I GO TO THE YMCA THREE TIMES A WEEK. THAT HAS BEEN DIMINISHED DUE TO THIS CONDITION, WHATEVER IT IS. DOES ANYONE HAVE ANSWERS FOR ME? I CANNOT TAKE THE MEDICATIONS PRESCRIBED, BECAUSE I AM ON AN SSRI AND ANXIETY DRUG FOR YEARS. ANY ANTI-EMETIC DRUG IS CONTRAINDICATED WITH THESE OTHER MEDS. WHAT SHOULD I DO? WHAT ELSE COULD BE CAUSING MY PROBLEM? I HAVE LOST 10 POUNDS SINCE AUGUST. I HAVE HORRIBLE NUTRITION. I DRINK BOOST. I CAN'T EAT VEGETABLES EXCEPT FOR SQUASH. MAYO CLINIC DENIED ME AN APPOINTMENT BASED UPON MY GASTRIC EMPTYING STUDY. THEY SAID THAT ALL WAS BEING DONE FOR ME IN NEW YORK! DOES ANYONE GET IT????? I'll take any answers and suggestions anyone may have. We know I have gasgroparesis, but are my symptoms coming from that disorder? I have a lousy primary doctor who cannot help me. What should I do???? Please help.

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Oh so sorry what u r going through it sounds like gastropersis i can't take meds either but I'm not in u r condition wish I could help keep looking for a doc to help

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@shimmerpixie

I was diagnosed with IBS when I was 18. I’m now 30. Early in 2011, I saw a new GI doc for unexplained feelings of fullness after eating a very small amount of food, nausea and vomiting and severe pain- all revolving around eating. He ordered a gastric emptying studying and told me I had “mild delayed emptying,” which he classified as “mild gastroparesis” on my chart. He gave me Zofran 4 mg to take as needed and hyosciamine for stomach spasms. At the beginning of this year, lost 15 pounds in 2 months due to the worsening of these symptoms. I’ve had many sleepless nights with a horribly painful distended stomach- last night being one of the worst- and I’m on 3 nausea medications- tigin, emend and marinol- and heavy doses of all 3. I was in the hospital in February for 2 weeks with an NG tube and sent home with the medications I mentioned. I was severely dehydrated when admitted, as I’m not always able to tolerate liquids either. My GI doc requested a psych consult and I was grilled by a psychiatrist and his nurse as soon as I had a bed and fluids had been started. The outcome of this was that I did not need additional psychological intervention. (I see a therapist every 2 weeks b/c of this and other chronic pain I deal with- Fibro and osteoarthritis). So here is where I’m at: I was supposed to get in with a doctor who has access to a trial drug, but I was denied access to the program because my scan only shows mild delayed emptying. Yet my symptoms are of someone with a very severe form of it. The psychiatrist determined it’s not psychological. So what am I supposed to do?? The only reason I’m gaining weight is due to the marinol, which increases my appetite but then I have to deal with the pain and nausea of eating. I don’t vomit as much, because of the drugs, but I still feel nauseated after eating (even on an full liquid diet). I’ve kept food diaries for years and tried everything. I tried gluten-free. I eliminated “toxic” chemicals (those found in diet pop), caffeine- you name it, I’ve tried it BEFORE this took over my llfe in January and I’m continuing to eat as tolerated but I’m in hell. Does anyone else have a gastric emptying test that shows mild delay, yet you have severe symptoms? If so, I would love to hear from you. I hate the marinol b/c it doesn’t help much with the nausea and makes me want to eat, after which I feel horrible. Please please tell me there is someone like me out there, and that help is available. Any and all replies are appreciated.
~Stephanie~
P.S. I was in the ER last twice last week due to dehydration and pain that is unbelievable and off the charts. I don’t understand πŸ™

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I am 28 years old and have severe stomach issues, severe pain after eating and even drinking, I have pain even when I do not eat but it's not as bad ( this makes me not want to eat), I get diahrea a lot and neasia but thankfully have only really had a few days of vomiting although I don't constantly feel like I am going to throw up. I am still waiting to see what's going on with me but Google says that my symptoms match this disease I just wish doctor's would figure it out

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@shimmerpixie

I was diagnosed with IBS when I was 18. I’m now 30. Early in 2011, I saw a new GI doc for unexplained feelings of fullness after eating a very small amount of food, nausea and vomiting and severe pain- all revolving around eating. He ordered a gastric emptying studying and told me I had “mild delayed emptying,” which he classified as “mild gastroparesis” on my chart. He gave me Zofran 4 mg to take as needed and hyosciamine for stomach spasms. At the beginning of this year, lost 15 pounds in 2 months due to the worsening of these symptoms. I’ve had many sleepless nights with a horribly painful distended stomach- last night being one of the worst- and I’m on 3 nausea medications- tigin, emend and marinol- and heavy doses of all 3. I was in the hospital in February for 2 weeks with an NG tube and sent home with the medications I mentioned. I was severely dehydrated when admitted, as I’m not always able to tolerate liquids either. My GI doc requested a psych consult and I was grilled by a psychiatrist and his nurse as soon as I had a bed and fluids had been started. The outcome of this was that I did not need additional psychological intervention. (I see a therapist every 2 weeks b/c of this and other chronic pain I deal with- Fibro and osteoarthritis). So here is where I’m at: I was supposed to get in with a doctor who has access to a trial drug, but I was denied access to the program because my scan only shows mild delayed emptying. Yet my symptoms are of someone with a very severe form of it. The psychiatrist determined it’s not psychological. So what am I supposed to do?? The only reason I’m gaining weight is due to the marinol, which increases my appetite but then I have to deal with the pain and nausea of eating. I don’t vomit as much, because of the drugs, but I still feel nauseated after eating (even on an full liquid diet). I’ve kept food diaries for years and tried everything. I tried gluten-free. I eliminated “toxic” chemicals (those found in diet pop), caffeine- you name it, I’ve tried it BEFORE this took over my llfe in January and I’m continuing to eat as tolerated but I’m in hell. Does anyone else have a gastric emptying test that shows mild delay, yet you have severe symptoms? If so, I would love to hear from you. I hate the marinol b/c it doesn’t help much with the nausea and makes me want to eat, after which I feel horrible. Please please tell me there is someone like me out there, and that help is available. Any and all replies are appreciated.
~Stephanie~
P.S. I was in the ER last twice last week due to dehydration and pain that is unbelievable and off the charts. I don’t understand πŸ™

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Dx of mild to moderate gastroparesis many years ago and have learned to live with it. Also have a chronic cardiac condition. Have taken meds for both conditions for years. Past problems with beta blockers for the heart issues, but so long ago that don't specifically recall the problems.. New cardiologist has me trying again with the beta blockers. Any experience/info about beta blockers and impact on gastroparesis would be appreciated.

Alan

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@shimmerpixie

I was diagnosed with IBS when I was 18. I’m now 30. Early in 2011, I saw a new GI doc for unexplained feelings of fullness after eating a very small amount of food, nausea and vomiting and severe pain- all revolving around eating. He ordered a gastric emptying studying and told me I had “mild delayed emptying,” which he classified as “mild gastroparesis” on my chart. He gave me Zofran 4 mg to take as needed and hyosciamine for stomach spasms. At the beginning of this year, lost 15 pounds in 2 months due to the worsening of these symptoms. I’ve had many sleepless nights with a horribly painful distended stomach- last night being one of the worst- and I’m on 3 nausea medications- tigin, emend and marinol- and heavy doses of all 3. I was in the hospital in February for 2 weeks with an NG tube and sent home with the medications I mentioned. I was severely dehydrated when admitted, as I’m not always able to tolerate liquids either. My GI doc requested a psych consult and I was grilled by a psychiatrist and his nurse as soon as I had a bed and fluids had been started. The outcome of this was that I did not need additional psychological intervention. (I see a therapist every 2 weeks b/c of this and other chronic pain I deal with- Fibro and osteoarthritis). So here is where I’m at: I was supposed to get in with a doctor who has access to a trial drug, but I was denied access to the program because my scan only shows mild delayed emptying. Yet my symptoms are of someone with a very severe form of it. The psychiatrist determined it’s not psychological. So what am I supposed to do?? The only reason I’m gaining weight is due to the marinol, which increases my appetite but then I have to deal with the pain and nausea of eating. I don’t vomit as much, because of the drugs, but I still feel nauseated after eating (even on an full liquid diet). I’ve kept food diaries for years and tried everything. I tried gluten-free. I eliminated “toxic” chemicals (those found in diet pop), caffeine- you name it, I’ve tried it BEFORE this took over my llfe in January and I’m continuing to eat as tolerated but I’m in hell. Does anyone else have a gastric emptying test that shows mild delay, yet you have severe symptoms? If so, I would love to hear from you. I hate the marinol b/c it doesn’t help much with the nausea and makes me want to eat, after which I feel horrible. Please please tell me there is someone like me out there, and that help is available. Any and all replies are appreciated.
~Stephanie~
P.S. I was in the ER last twice last week due to dehydration and pain that is unbelievable and off the charts. I don’t understand πŸ™

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Welcome to Connect, @alan24.
You may notice that I moved your post to this existing discussion on gastroparesis as I thought it would be easier for you to connect with other members discussing this condition.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

While we wait for fellow members to respond, I thought I’d let you know about this journal article I found online:
The effect of drugs and stimulants on gastric myoelectrical activity https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4110358/

Beta blockers have certainly evolved over the years; are you concerned about any specific impact they might have on gastroparesis, @alan24

REPLY
@kanaazpereira

Welcome to Connect, @alan24.
You may notice that I moved your post to this existing discussion on gastroparesis as I thought it would be easier for you to connect with other members discussing this condition.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

While we wait for fellow members to respond, I thought I’d let you know about this journal article I found online:
The effect of drugs and stimulants on gastric myoelectrical activity https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4110358/

Beta blockers have certainly evolved over the years; are you concerned about any specific impact they might have on gastroparesis, @alan24

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Yes, I am concerned about impact of beta blockers on my digestive function. Past problems with the beta blockers and stomach upset, but current cardiologist is trying it again with me. Feel like it has increased my gastroparesis problem. Thus, interested in hearing from others before revisiting the cardiologist..

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@shimmerpixie

I was diagnosed with IBS when I was 18. I’m now 30. Early in 2011, I saw a new GI doc for unexplained feelings of fullness after eating a very small amount of food, nausea and vomiting and severe pain- all revolving around eating. He ordered a gastric emptying studying and told me I had “mild delayed emptying,” which he classified as “mild gastroparesis” on my chart. He gave me Zofran 4 mg to take as needed and hyosciamine for stomach spasms. At the beginning of this year, lost 15 pounds in 2 months due to the worsening of these symptoms. I’ve had many sleepless nights with a horribly painful distended stomach- last night being one of the worst- and I’m on 3 nausea medications- tigin, emend and marinol- and heavy doses of all 3. I was in the hospital in February for 2 weeks with an NG tube and sent home with the medications I mentioned. I was severely dehydrated when admitted, as I’m not always able to tolerate liquids either. My GI doc requested a psych consult and I was grilled by a psychiatrist and his nurse as soon as I had a bed and fluids had been started. The outcome of this was that I did not need additional psychological intervention. (I see a therapist every 2 weeks b/c of this and other chronic pain I deal with- Fibro and osteoarthritis). So here is where I’m at: I was supposed to get in with a doctor who has access to a trial drug, but I was denied access to the program because my scan only shows mild delayed emptying. Yet my symptoms are of someone with a very severe form of it. The psychiatrist determined it’s not psychological. So what am I supposed to do?? The only reason I’m gaining weight is due to the marinol, which increases my appetite but then I have to deal with the pain and nausea of eating. I don’t vomit as much, because of the drugs, but I still feel nauseated after eating (even on an full liquid diet). I’ve kept food diaries for years and tried everything. I tried gluten-free. I eliminated “toxic” chemicals (those found in diet pop), caffeine- you name it, I’ve tried it BEFORE this took over my llfe in January and I’m continuing to eat as tolerated but I’m in hell. Does anyone else have a gastric emptying test that shows mild delay, yet you have severe symptoms? If so, I would love to hear from you. I hate the marinol b/c it doesn’t help much with the nausea and makes me want to eat, after which I feel horrible. Please please tell me there is someone like me out there, and that help is available. Any and all replies are appreciated.
~Stephanie~
P.S. I was in the ER last twice last week due to dehydration and pain that is unbelievable and off the charts. I don’t understand πŸ™

Jump to this post

I have been dealing with IBS for 20 years now and have finally gotten thru to my Dr. that something other than "stress" is causing my IBS so he ordered a CT scan and a gastric emptying study along with a SIBO test (which I ended up not having to do). I was diagnosed with mild gastroparesis..finally I'm not crazy and no, my stomach does not digest food normally!! While we were waiting to have the study done my Dr. suggested the low fodmap diet to calm down the severe symptoms I was experiencing at that time. Amazing results!!! Still have mild stomach pain, bloating and nausea after eating but nowhere near the severity as before, plus I have lost almost 25 lbs in 3 months and blood pressure is way down. I'm a breast cancer survivor and have had chronic left chest pain for 10 years and that is totally gone now that the inflamation from my abdomen in that area has subsided. After my diagnosis, I was given a new diet to follow for gastroparesis that has things on it that were not allowed on the low fodmap diet (ie. canned peaches & pears in syrup, applesauce,toast) so I'm trying to come up with a balance on my own which also includes smaller meals. I'm one of the odd GP patients as I am NOT diabetic, take NO medications at all (55 yrs old), have never had stomach surgery so who knows why I've been chosen to deal with gastroparesis! with all the recipes on Pinterest I've found the low fodmap diet works the best and there really is some tasty food that I can eat. I have to go easier on the butter and oils than some recipes state but cutting out all dairy, gluten and fruits and veges that ferment in my stomach have made an amazing difference in how I feel πŸ™‚ Good luck!

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@shimmerpixie

I was diagnosed with IBS when I was 18. I’m now 30. Early in 2011, I saw a new GI doc for unexplained feelings of fullness after eating a very small amount of food, nausea and vomiting and severe pain- all revolving around eating. He ordered a gastric emptying studying and told me I had “mild delayed emptying,” which he classified as “mild gastroparesis” on my chart. He gave me Zofran 4 mg to take as needed and hyosciamine for stomach spasms. At the beginning of this year, lost 15 pounds in 2 months due to the worsening of these symptoms. I’ve had many sleepless nights with a horribly painful distended stomach- last night being one of the worst- and I’m on 3 nausea medications- tigin, emend and marinol- and heavy doses of all 3. I was in the hospital in February for 2 weeks with an NG tube and sent home with the medications I mentioned. I was severely dehydrated when admitted, as I’m not always able to tolerate liquids either. My GI doc requested a psych consult and I was grilled by a psychiatrist and his nurse as soon as I had a bed and fluids had been started. The outcome of this was that I did not need additional psychological intervention. (I see a therapist every 2 weeks b/c of this and other chronic pain I deal with- Fibro and osteoarthritis). So here is where I’m at: I was supposed to get in with a doctor who has access to a trial drug, but I was denied access to the program because my scan only shows mild delayed emptying. Yet my symptoms are of someone with a very severe form of it. The psychiatrist determined it’s not psychological. So what am I supposed to do?? The only reason I’m gaining weight is due to the marinol, which increases my appetite but then I have to deal with the pain and nausea of eating. I don’t vomit as much, because of the drugs, but I still feel nauseated after eating (even on an full liquid diet). I’ve kept food diaries for years and tried everything. I tried gluten-free. I eliminated “toxic” chemicals (those found in diet pop), caffeine- you name it, I’ve tried it BEFORE this took over my llfe in January and I’m continuing to eat as tolerated but I’m in hell. Does anyone else have a gastric emptying test that shows mild delay, yet you have severe symptoms? If so, I would love to hear from you. I hate the marinol b/c it doesn’t help much with the nausea and makes me want to eat, after which I feel horrible. Please please tell me there is someone like me out there, and that help is available. Any and all replies are appreciated.
~Stephanie~
P.S. I was in the ER last twice last week due to dehydration and pain that is unbelievable and off the charts. I don’t understand πŸ™

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Look into MALS-on Facebook and research

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@shimmerpixie

I was diagnosed with IBS when I was 18. I’m now 30. Early in 2011, I saw a new GI doc for unexplained feelings of fullness after eating a very small amount of food, nausea and vomiting and severe pain- all revolving around eating. He ordered a gastric emptying studying and told me I had “mild delayed emptying,” which he classified as “mild gastroparesis” on my chart. He gave me Zofran 4 mg to take as needed and hyosciamine for stomach spasms. At the beginning of this year, lost 15 pounds in 2 months due to the worsening of these symptoms. I’ve had many sleepless nights with a horribly painful distended stomach- last night being one of the worst- and I’m on 3 nausea medications- tigin, emend and marinol- and heavy doses of all 3. I was in the hospital in February for 2 weeks with an NG tube and sent home with the medications I mentioned. I was severely dehydrated when admitted, as I’m not always able to tolerate liquids either. My GI doc requested a psych consult and I was grilled by a psychiatrist and his nurse as soon as I had a bed and fluids had been started. The outcome of this was that I did not need additional psychological intervention. (I see a therapist every 2 weeks b/c of this and other chronic pain I deal with- Fibro and osteoarthritis). So here is where I’m at: I was supposed to get in with a doctor who has access to a trial drug, but I was denied access to the program because my scan only shows mild delayed emptying. Yet my symptoms are of someone with a very severe form of it. The psychiatrist determined it’s not psychological. So what am I supposed to do?? The only reason I’m gaining weight is due to the marinol, which increases my appetite but then I have to deal with the pain and nausea of eating. I don’t vomit as much, because of the drugs, but I still feel nauseated after eating (even on an full liquid diet). I’ve kept food diaries for years and tried everything. I tried gluten-free. I eliminated “toxic” chemicals (those found in diet pop), caffeine- you name it, I’ve tried it BEFORE this took over my llfe in January and I’m continuing to eat as tolerated but I’m in hell. Does anyone else have a gastric emptying test that shows mild delay, yet you have severe symptoms? If so, I would love to hear from you. I hate the marinol b/c it doesn’t help much with the nausea and makes me want to eat, after which I feel horrible. Please please tell me there is someone like me out there, and that help is available. Any and all replies are appreciated.
~Stephanie~
P.S. I was in the ER last twice last week due to dehydration and pain that is unbelievable and off the charts. I don’t understand πŸ™

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My test showed mild GP with severe symptoms i couldn't take the meds so I'm dealing w pain mostly

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@ktracyf

Hi, my name is Tracy and I was diagnosed with gastroparesis about 3 weeks ago after a year of vomiting, stomach pain, countless trips to the ER, 5 hospital stays and 39 lbs lost. I also have long term back pain after an injury and multiple surgeries, fibromyalgia, Sjogren's Syndrome (an autoimmune disease like Lupus only everything is dry, including my digestive tract), osteoarthritis, and a weak immune system that requires IVIG (IV immunoglobulin treatments ) once a month to try to boost my ability to fight infections and such. I started with vomiting binges five or six years ago. They'd happen once a year at first, then twice until this last year, where was sick more than not. I had Zofran, but just the taste of it started making me sick to my stomach, then my potassium would tank and we'd be running back to the ER.

I wasn't able to have the gastric emptying test because I have an internal pain medicine pump which would have caused a positive result regardless, but I've seen the same gastroenterologist each time I've been in the hospital, and he's done or had done every other test, some 2-3 times, and seems that gastroparesis really fits the bill. The last time I was in, the first week in Jan., he gave me Reglan and Phenergan suppositories for when I can't take anything by mouth. He added Prilosec ER in Dec. and Bentyl as needed up to 4 times a day. He would have liked me to take the Reglan all the time, but my family doctor is very afraid of the side affects, and she's really been up on things since I switched to her about 5 years ago – she did everything she could to get me in to a gastroenterologist in an area where you can wait up to 6-8 months for an appointment, so I've been using it as needed and that seems to be working.

Since my last hopsitalization, I've been on the gastroparesis/FODMAP diet, so I've been staying away from gluten, lactose, nuts, fresh fruits and vegetables, anything high fiber except 5 doctor approved prunes minus skins each night so that the opioids don't cause more problems that I don't need. I've been doing pretty well. Since I really wasn't eating anything for the past year, I don't feel deprived at all, and I eat smaller, more frequent meals, like everyone else. I've been able to cut back a bit on my pain meds, which I imagine can't hurt, and will talk to my pain doctor next week about the possibility of turning down the internal pump. I know I won't be able to get rid of it completely, it takes care of an area of my spine that had already been fused when I injured it in a car accident, but I figure every little bit can help.

I'm not usually as positive as I sound today, but so far, I've had a good week. My husband's been very supportive (which wasn't always the case). He made a really good soup with things that I can eat and I feel like I've been at a banquet fit for a king since Sunday, But this is a real change for me after a year of hell. I hope it continues and I hope others have some days like the last few I have.

Sorry for going on so long, Tracy

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What do u do for constipation

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