paarak
@paarak
@paarak
Posts: 6
Joined: May 15, 2017
Gastroparesis with severe symptoms!
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
Liked by annointed2008, TuJaded (Holly S.), tomdemonte3, dotdash
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 🙁
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 🙂 Good luck!
Liked by Kari Ulrich, Alumna Mentor
lasirvent
@lasirvent
@lasirvent
Posts: 39
Joined: Jan 31, 2019
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 🙁
Look into MALS-on Facebook and research
cookiegnias
@cookiegnias
@cookiegnias
Posts: 22
Joined: Dec 19, 2018
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 🙁
My test showed mild GP with severe symptoms i couldn't take the meds so I'm dealing w pain mostly
cookiegnias
@cookiegnias
@cookiegnias
Posts: 22
Joined: Dec 19, 2018
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
What do u do for constipation
Liked by Kari Ulrich, Alumna Mentor
Kari Ulrich, Alumna Mentor
@kariulrich
@kariulrich
Posts: 524
Joined: Jul 15, 2011
What do u do for constipation
I use Sundown Natural Fiber Gummies with Vit D3 and ducosate. Also, make sure you are active… walking daily. Hope this helps 🙂
Kari Ulrich, Alumna Mentor
@kariulrich
@kariulrich
Posts: 524
Joined: Jul 15, 2011
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 🙂 Good luck!
Never used Pinterest for recipes – GREAT idea! Thank you.
JK, alumni mentor
@contentandwell
@contentandwell
Posts: 6188
Joined: Feb 18, 2017
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 🙂 Good luck!
@iring. I have just diagnosed myself as having IBS. I thought it was a lactose intolerance, and that is definitely a trigger, but even when I avoid lactose scrupulously I still sometimes have problems.
I am going to make an appointment with a gastroenterologist, but in the meantime, is gastroparesis related to IBS? I do not have any nausea, I just have a problem after eating dairy, and some other unidentified trigger, primarily diarrhea and mild stomach upset.
It really makes life sort of difficult as I’m sure you know. At times I don’t want to leave the house.
The gastro I would like to go to is scheduling in October at this point so I may try to find a different one.
JK
TERESA LOGAN
@quiteachiver75
@quiteachiver75
Posts: 115
Joined: Nov 30, 2018
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
Good luck for the future your post is very encouraging Teresa
I am in so much pain and no one seems to find the reason why. I am in and out of the doctors offices and hospitals with no answer. I was first being treated for UTI and was on Keflex for 2 weeks. After that I started getting pain in the right side of my kidneys. Went to the hospital and they did a CT scan and lab work and everything was ok. I am having EXTREME upper abdominal pain that radiates to my back. I lost 17 pounds in two weeks. I can't eat without it going right through me. I believe I have what is called gastroparesis
Don’t stop there. My brother had pancreatitis and was hospitalized for 3 days. Then three yes later had severe pain in stomach through to his back. I kept telling him to go to the ER until they find what was wrong. He had pancreatic cancer. He died 15 months later at the age of 59. The only blood test that indicates cancer activity is the pancreases is the CA9-19 test
cookiegnias
@cookiegnias
@cookiegnias
Posts: 22
Joined: Dec 19, 2018
Don’t stop there. My brother had pancreatitis and was hospitalized for 3 days. Then three yes later had severe pain in stomach through to his back. I kept telling him to go to the ER until they find what was wrong. He had pancreatic cancer. He died 15 months later at the age of 59. The only blood test that indicates cancer activity is the pancreases is the CA9-19 test
I have stomach pain through to back no one will listen to me how do I get this test ca9-19
JK, alumni mentor
@contentandwell
@contentandwell
Posts: 6188
Joined: Feb 18, 2017
Don’t stop there. My brother had pancreatitis and was hospitalized for 3 days. Then three yes later had severe pain in stomach through to his back. I kept telling him to go to the ER until they find what was wrong. He had pancreatic cancer. He died 15 months later at the age of 59. The only blood test that indicates cancer activity is the pancreases is the CA9-19 test
@donnak142 Donna, I am so sorry to hear about your brother. Pancreatic cancer is such a tough one, and I have heard that it's because it does not generally get diagnosed for a long time. The husband in a couple of dear friends is battling that now, in fact I drove him to his chemo yesterday. I hope and pray he will survive this.
JK
suemer
@suemer
@suemer
Posts: 50
Joined: Aug 04, 2018
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 🙁
I read an article about "functional medicine". There is such a thing. This person had to have a tube inserted in her stomach. She was that bad. And she had pictures of herself so thin and tired. Now. She claims she is has no issues. She went to a Functional Medicine Clinic. She ended up helping her diet (which I assume you have been avoiding the foods you are not to eat) with adzuki red bean paste which add protein and beet kvass. She also said that sometimes you can be misdiagnosed and have hypochloridia. Don't know if functional medicine is a choice but it might be worth a shot. Does Mayo Clinic have a functional medicine department? I have this disease and did not take the medicines. My gastroparesis said to try iberogast. It is natural drops that go into a trip before or during your meals. It helps the motility of your stomach and it works for me. When I have the coughing fits, I resort to sugarless gum. Works great! I also have a 5-7" wedge until my mattress to elevate my heads and I sleep in my left side as the right side is a straight shot to your stomach & you can get reflux. I do exercise twice a week too. And avoid ALL of the foods that they listed.
I have stomach pain through to back no one will listen to me how do I get this test ca9-19
I think you should be able to ask your primary care doctor to do the blood test.
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 🙁
I am in so very much pain. Was diagnosed with gastroparesis. Has anyone been diagnosed as having this and have you found it painful
@kanaazpereira
Hi @tujaded and @ktracyf,
I moved @hgarm’s message to this very thread about gastroparesis (https://connect.mayoclinic.org/discussion/gastroparesis/); so you are in the correct discussion/thread. Here are a few other discussions on Connect that might also interest you:
– Gastroparesis Diet Guidelines https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/newsfeed/gastroparesis-diet-guidelines-1/
– following gastroparesis diet while managing constipation https://connect.mayoclinic.org/discussion/following-gastroparesis-diet-while-managing-constipation/
– mild gastroparesis with severe symptoms! https://connect.mayoclinic.org/discussion/please-read-mild-gastroparesis-with-severe-symptoms/
Liked by pdilly