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

@bellyacheblues

I’ve just been diagnosed with gastroparesis after having a gastric emptying test. My case is idiopathic in origin, prior to my diagnosis I was on massive amounts of prescription antacids for 4 months. Has this caused my gastroparesis to get worse. I’m scheduled to see a nutritionist in 2 weeks.I am taking erythromycin 250 mg. before each meal , am excercising, but don’t feel much improvement. Does anyone have any advice for me? Shocked with my diagnosis, signed sleepy tummy

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my daughter Ashley (age 16) had similar issues starting 3+ years ago. She was finally diagnosed with Gastroparesis a year ago. Check out

http://www.g-pact.org

for more information. Also, you can read my daughter’s story at:

http://www.caringbridge.org/visit/AshleyJenkins

Also there is an excellent you tube video created by a young lady with Gastroparesis to raise awareness about this rare disease. You can check it out at-

Hope this helps and that you can get some answers…

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@betsy1rn

my daughter Ashley (age 16) had similar issues starting 3+ years ago. She was finally diagnosed with Gastroparesis a year ago. Check out

http://www.g-pact.org

for more information. Also, you can read my daughter’s story at:

http://www.caringbridge.org/visit/AshleyJenkins

Also there is an excellent you tube video created by a young lady with Gastroparesis to raise awareness about this rare disease. You can check it out at-

Hope this helps and that you can get some answers…

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back pain
rest

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@lisab

I’m new here, so bear with me. I too was diagnosed with gastroparesis in 2009 after having a lap band placed and tightened. The lap band was removed, and the daily nausea and vomitting continued. I was then given botox injections, massive doses of anti-nausea meds, feeding tubes, TPN, and even a pace maker for my tummy. Eventually my stomach was removed in May of 2011, it had turned black inside due to the chronic vomitting. Guess what?? I am still sick, vomitting almost everyday, and down to 104lbs from 272lbs. My doctors told me friday there is no more they can do for me. I tell my story to say this, if you take nothing else away from all of this, please, please, please remember, BE YOUR OWN ADVOCATE!!! Make your voice heard, due your research and be dilligent. Keep a food diary, mark what works for you and what doesn’t. I kept telling everyone it just didn’t make sense to me that my stomach was the only culprit. Now I am at a loss and hoping that Mayo can help. As a single parent I struggle everyday to be well enough to just talk to my children to see how their day went. Don’t allow this to happen to you. Make informed decisions, get second, third, and fourth opinions. I wish you all the best! I would love any resourceful information.

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I have idiopathic gastroparesis, I used to be tube fed and on many pain meds. I now only take 1/2 a suboxone tablet and I am functioning better than ever before. I’m not in paiin or vommiting on a regular basis. I haven’t found a study relating the suboxone and gastroparesis. If I can go from a dying woman to a functioning mother and wife who is now able to eat then it seems like there has to be a connection. I am unfortunately uninsured, so I won’t ever have the opportunity to go to a medical facility like mayo. I’m always looking to find answers. I have lost 6 online friends from support groups to this horrible disease. Wish I had all the answers! !

REPLY

I’ve just been diagnosed with gastroparesis after having a gastric emptying test. My case is idiopathic in origin, prior to my diagnosis I was on massive amounts of prescription antacids for 4 months. Has this caused my gastroparesis to get worse. I’m scheduled to see a nutritionist in 2 weeks.I am taking erythromycin 250 mg. before each meal , am excercising, but don’t feel much improvement. Does anyone have any advice for me? Shocked with my diagnosis, signed sleepy tummy

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@indigo7505aolcom

I’m sitting in a hospital bed currently another horrid bout with gastroparesis before I found this site I felt like the only person alive with this horrid crap tonight thanks to it I’ve read others stories and felt not so by myself in this fight. I will actually recieve Botox treatment on the 26th of this month I’m not convinced I’m not harming myself more by adding weird drugs to my already frail frame however diet control has not done much if belly decides its time to erupt she’s going to do it whether I drink gatorade for a month or eat like a starved dog.. either way I’m not the same person I was3 years ago I wished to be skinny.. be careful what you wish for. Because I’m scared at this point and feel awful my family suffers when I suffer. If anyone has any info please send it my way

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I could have written your post because I’m going through the same things, thoughts and feelings. It’s scary isn’t it? And hard for others to understand unless they have GP. I’ve felt so many things during the past 2 years…..including: sad, angry, hopeless, scared, guilt, shame…..and so much more. I was in the hospital for a week last month (got out a day before Christmas). I had something called an intusseption (hard to explain what it is, google if interested). I’m not sure if it was a complication of GP, or something unrelated. It’s very rare (1 in 10,000 or so adults have this happen – though I can’t remember the exact ratio). That was the first time in all of this (I have several other significant health complications as well as GP) that I truly feared for my life. It was the worst hospital experience I’ve ever had (emotionally as well as physically). When I got out, I had to decide how much (if at all) I really wanted to live and get well. I tenttively made an appointment at the Mayo Clinic and was on the fence about going until the minute I got into my car and started driving. That was this past Monday. It’s Friday and I’m still here. It’s been a rough, challenging week. I felt I needed to come alone, and though I’ve had periods of loneliness, it was the right decision (for me). I am still on an emotional roller-coaster and have experienced all the feelings I mentioned above (while here). But somewhere in the midst of the fear, loneliness, guilt (about spending the money to come here), etc…….I felt a new feeling. I felt a sense of hope for the first time in a long time. I also experienced other feelings I have not experienced in a very long time. I experienced compassion, comfort, caring, less alone, less frightened…..At some point during this week, I found myself having to answer (to myself) if I really wanted to go on (living)…and getting healthy – and – if so, how much did I really want it? It was probably my 2nd or 3rd day here when I had an amazing day. I met several other patients who reached out and encouraged me…I also met a few staff members who helped me immensely. It was that day that I decided I want to live. I identified WHY I wanted to live. I also decided that I was going to get better. And I began to assess not only WHY I wanted to get better, but what I was willing to give up in order to get better ( things like guilt over spending money on self-care, shame about my illness, isolation, etc). Each person that reached out to me that day, all had the same thing to say to me. They said (and I’m saying this to YOU right now)…”you ARE worth it, you deserve to live, you have worth, you have reason to hope, you are loved, and most importantly YOU ARE NOT ALONE. Each person who approached me that day all pointed me back to God. I picked up a devotional book (amazing one – I’ll post the name when I remember it) and started reading. It was as if everything I read spoke directly to me. That was one of the best days of my life and I am going to be ok. You will be ok. Feel free to email me at JHFocus@yahoo.com. If anyone else wants to email me, I’d love to connect with you and support you on your journey. With love, peace and understanding, Julie

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@indigo7505aolcom

I’m sitting in a hospital bed currently another horrid bout with gastroparesis before I found this site I felt like the only person alive with this horrid crap tonight thanks to it I’ve read others stories and felt not so by myself in this fight. I will actually recieve Botox treatment on the 26th of this month I’m not convinced I’m not harming myself more by adding weird drugs to my already frail frame however diet control has not done much if belly decides its time to erupt she’s going to do it whether I drink gatorade for a month or eat like a starved dog.. either way I’m not the same person I was3 years ago I wished to be skinny.. be careful what you wish for. Because I’m scared at this point and feel awful my family suffers when I suffer. If anyone has any info please send it my way

Jump to this post

my daughter Ashley (age 16) had similar issues starting 3+ years ago. She was finally diagnosed with Gastroparesis a year ago. Check out

http://www.g-pact.org

for more information. Also, you can read my daughter’s story at:

http://www.caringbridge.org/visit/AshleyJenkins

Also there is an excellent you tube video created by a young lady with Gastroparesis to raise awareness about this rare disease. You can check it out at-

Hope this helps and that you can get some answers…

REPLY
@indigo7505aolcom

I’m sitting in a hospital bed currently another horrid bout with gastroparesis before I found this site I felt like the only person alive with this horrid crap tonight thanks to it I’ve read others stories and felt not so by myself in this fight. I will actually recieve Botox treatment on the 26th of this month I’m not convinced I’m not harming myself more by adding weird drugs to my already frail frame however diet control has not done much if belly decides its time to erupt she’s going to do it whether I drink gatorade for a month or eat like a starved dog.. either way I’m not the same person I was3 years ago I wished to be skinny.. be careful what you wish for. Because I’m scared at this point and feel awful my family suffers when I suffer. If anyone has any info please send it my way

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just saying sorry you feel so bad I don’t have any answers but I will pray for you I wish you the best BUTTERFLY BETTY

REPLY

I’m sitting in a hospital bed currently another horrid bout with gastroparesis before I found this site I felt like the only person alive with this horrid crap tonight thanks to it I’ve read others stories and felt not so by myself in this fight. I will actually recieve Botox treatment on the 26th of this month I’m not convinced I’m not harming myself more by adding weird drugs to my already frail frame however diet control has not done much if belly decides its time to erupt she’s going to do it whether I drink gatorade for a month or eat like a starved dog.. either way I’m not the same person I was3 years ago I wished to be skinny.. be careful what you wish for. Because I’m scared at this point and feel awful my family suffers when I suffer. If anyone has any info please send it my way

REPLY

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 🙁

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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 🙁

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I have taken zofran for nausea and it seems to actually make me worse and vomit. I have IBS and when I have an attack I disolve a Symax FasTabs (levsin with a unique distribution to get into system fast) tablet under my tongue. The generic does not disolve. You need the brand. NuLev was best but they don’t make it anymore. I also have gastroparesis (quite significant but not with all your bad symptoms). Unfortunately for me it does not make me lose weight even though I have little appetite.
It sounds like you have much more than IBS going on and don’t let them push it off as psychiatric! I wish you could get worked up at Mayo clinic. I’m sure with the way they do work ups there they would figure this 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 🙁

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I’m so sorry for your troubles. It must be awful to have to deal with all the nausea and vomiting, etc. My mom was recently diagnosed with gastroparesis after having a gastric emptying study. They said hers was “moderate” but she’s been having a terrible time with it – throwing up every few days and unable to keep anything down. She’s been in the ER with dehydration several times as well. She has osteoarthritis (along with a number of other medical issues). They put her on Reglan which helps with the vomiting when she can keep it down…It’s been extremely difficult for her. One thing they are looking at is that she takes pain meds for her chronic pain and this may be causing the slow down in her gastric emptying. We are in the middle of all this but just wanted you to know you are not alone and I hope you are able to come to a satisfactory solution – it is a really difficult situation – best of luck!

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@sherry8034

I have taken zofran for nausea and it seems to actually make me worse and vomit. I have IBS and when I have an attack I disolve a Symax FasTabs (levsin with a unique distribution to get into system fast) tablet under my tongue. The generic does not disolve. You need the brand. NuLev was best but they don’t make it anymore. I also have gastroparesis (quite significant but not with all your bad symptoms). Unfortunately for me it does not make me lose weight even though I have little appetite.
It sounds like you have much more than IBS going on and don’t let them push it off as psychiatric! I wish you could get worked up at Mayo clinic. I’m sure with the way they do work ups there they would figure this out.

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I am sorry to hear what you are going thru. I actually just got back home from the Mayo Clinic in Rochester for Stomach issues. Mine are not nearly as bad of symptoms you are having. I have been to Johns Hopkins and UPenn and I will tell you that the Drs at Mayo were excellent. I was there for 7 days and went thru extensive tests. I was finally diagnosed with Gastrointestinal Motility / Gastroparesis. I met with the dietician today before I caught my flight home so I can modify my dirt to five small meals and still get the required nutrients. Good luck

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