Gastroparesis with severe symptoms!

<p>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. <br />~Stephanie~ <br />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 :(</p>

Welcome to Connect @faycarole. I moved your message to this discussion about gastroparesis to connect you with other members. I'd like to introduce you to @kendrakay, @margieg, @sherry8034, @dawn1952 and @citygirlannie.

Fay, here is some information about treating gastroparesis from Mayo Clinic http://www.mayoclinic.org/diseases-conditions/gastroparesis/basics/treatment/con-20023971

To contact Mayo Clinic, click this link http://mayocl.in/1mtmR63 for the contact information in Minnesota, Florida and Arizona. They will be happy to help assess your situation.

What symptom or symptoms do you find the most challenging to manage?

<p>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. <br />~Stephanie~ <br />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 :(</p>

Thank you so much for the information. I was diagnosed with Gastroparesis 2 weeks after my surgery, so I know what caused it. The vegas nerve is damaged. If I don't eat I get nauseous and if I do eat about 10 to 15 minutes after I vomit and have dry heaves and the diarrhea starts. I get so worn out I have to lie down and rest. I have no strength anymore and I'm still losing weight. I applied for a Gastroparesis study but because during my surgery the doctor performed a fundoplication wrap (which he explained that part of my stomach was wrapped around the esophagus) I didn't qualify. I live in New York. I'm sure one of my gastroenterologist's can let me know if I qualify for a pacemaker and if I do where I can get one. I'm so glad you found some help. Thanks again.

Welcome to Connect @faycarole. I moved your message to this discussion about gastroparesis to connect you with other members. I'd like to introduce you to @kendrakay, @margieg, @sherry8034, @dawn1952 and @citygirlannie.

Fay, here is some information about treating gastroparesis from Mayo Clinic http://www.mayoclinic.org/diseases-conditions/gastroparesis/basics/treatment/con-20023971

To contact Mayo Clinic, click this link http://mayocl.in/1mtmR63 for the contact information in Minnesota, Florida and Arizona. They will be happy to help assess your situation.

What symptom or symptoms do you find the most challenging to manage?

Yes I am 52 years old and had to leave work a year ago. I have mild gastroparesis with severe unrelenting nausea and pain. I just started Marinol, but my gastroenterologist hadn't really used the drug , but wrote 2.5 mg twice a day. Not enough. 5mg gets rid of nausea, but I still have this unwell feeling in my stomach. I have had a hiatal hernia with reflux since I was 22, but I've done well with PPi. I started developing nausea around 2007 plus I was developing lower extremity neuropathy. Zofran worked good for several years, but no longer effective . The first of December I went into a severe nauseated state that doesn't let up. I do NOT vomit. I can't live like this . I was to afraid of Reglan

I have idiopathic gastroparesis and am not diabetic. I have had the gastric pacemaker implanted in my stomach since 2012 and it’s going well. My Dr. told me not to take Raglan because it can cause Parkinson’s disease. If you have any questions feel free to ask me. Kathy

<p>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. <br />~Stephanie~ <br />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 :(</p>

<p>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. <br />~Stephanie~ <br />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 :(</p>

Yes I am 52 years old and had to leave work a year ago. I have mild gastroparesis with severe unrelenting nausea and pain. I just started Marinol, but my gastroenterologist hadn't really used the drug , but wrote 2.5 mg twice a day. Not enough. 5mg gets rid of nausea, but I still have this unwell feeling in my stomach. I have had a hiatal hernia with reflux since I was 22, but I've done well with PPi. I started developing nausea around 2007 plus I was developing lower extremity neuropathy. Zofran worked good for several years, but no longer effective . The first of December I went into a severe nauseated state that doesn't let up. I do NOT vomit. I can't live like this . I was to afraid of Reglan