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

This sounds just like me! So tired of it! I never know whether I can eat or not. Home from work today because I can’t function 🙁
And I too have been dx with gastroparesis.

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@molly911

I have similar symptoms, but did not know it had a name. I had a nuclear egg study and it was found my food does not move at a normal rate, it is very slow. Is this the kind of study any one has had to diagnose this?

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This is not only wrong, it could make it worse. If you have gastroparesis, a LOW fiber diet is recommended. Fiber and whole grains will NOT stimulate the vagus nerve!!! Worse yet, eating a lot of fiber can actually cause bezoars. You really shouldn’t give out half hearted holistic advice. This could really cause harm!!! I hope that anyone here with gastroparesis knows better than to load up on fiber…you may end up at the ER with a bezoar blocking your intestines!

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@tammyj0201

I have had the same exact symptoms, as well as ringing in my ears for about 3 years now and I am also NOT diabetic. First they said it was my gallbladder because I had alot of vomitting, and had gallstones that showed up on a CT scan, so they removed my gallbladder. After about 3 months I continued to have the same symptoms so then they said it was severe reflux or (GERD) and put me on medication. The “reflux” especially chest pain contined and I had a Nissen Fundoplication this past March to correct this. If they suggest this surgery DO NOT do it. It has only made the nausea, fullness, and gas/bloating 100 times worse and now I can’t belch or pass gas as effectively as before the procedure and I can no longer vomit due to the creation of a one-way valve into my stomach. About a half-hour or so after a regular meal, even very, very small portions, I have chest pain, stomach pain (from the gas), and I am bloated to the point where I feel (and look) like I am about 6-8 months pregnant. I can lose or gain up to 15 pounds in the same week depending on if I eat solid food or not, and if my stomach decides to empty or not. Eventually when my stomach does decide to empty I have unpredictably severe diarrhea with a lot of lower abdominal pain until everything passes. Unfortunately I am managing the exact same way you are. Most days I just have Gatorade or flavored water like Propel, but eventually I get hungry, eat solid foods, and suffer. This cycle never ends, it just continues on and on.

I have been told that the only thing left to do would be a gasgtric pacemaker, which my insurance won’t cover until the “official” gastroparesis diagnosis has been confirmed for 1 year, and all other methods have failed, i.e. medications like Reglan,Domperidone, and anti-reflux surgery. This won’t be until November for me and if I do decide to have the pacemaker, I have to travel about 2-1/2 hours away from my home and family to have it done. Since there are no guarantees with this procedure either I’m still not certain what to do. It is a real challenge living this way. I haven’t been able to return to work since last November and have no disability payments coming in, so my family is struggling as well. I guess all we can do is support each other, pray, and hang in there hoping for a better tomorrow.
Good luck to you!

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The anti reflux surgery is what caused my gastroparesis.

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@tammyj0201

I have had the same exact symptoms, as well as ringing in my ears for about 3 years now and I am also NOT diabetic. First they said it was my gallbladder because I had alot of vomitting, and had gallstones that showed up on a CT scan, so they removed my gallbladder. After about 3 months I continued to have the same symptoms so then they said it was severe reflux or (GERD) and put me on medication. The “reflux” especially chest pain contined and I had a Nissen Fundoplication this past March to correct this. If they suggest this surgery DO NOT do it. It has only made the nausea, fullness, and gas/bloating 100 times worse and now I can’t belch or pass gas as effectively as before the procedure and I can no longer vomit due to the creation of a one-way valve into my stomach. About a half-hour or so after a regular meal, even very, very small portions, I have chest pain, stomach pain (from the gas), and I am bloated to the point where I feel (and look) like I am about 6-8 months pregnant. I can lose or gain up to 15 pounds in the same week depending on if I eat solid food or not, and if my stomach decides to empty or not. Eventually when my stomach does decide to empty I have unpredictably severe diarrhea with a lot of lower abdominal pain until everything passes. Unfortunately I am managing the exact same way you are. Most days I just have Gatorade or flavored water like Propel, but eventually I get hungry, eat solid foods, and suffer. This cycle never ends, it just continues on and on.

I have been told that the only thing left to do would be a gasgtric pacemaker, which my insurance won’t cover until the “official” gastroparesis diagnosis has been confirmed for 1 year, and all other methods have failed, i.e. medications like Reglan,Domperidone, and anti-reflux surgery. This won’t be until November for me and if I do decide to have the pacemaker, I have to travel about 2-1/2 hours away from my home and family to have it done. Since there are no guarantees with this procedure either I’m still not certain what to do. It is a real challenge living this way. I haven’t been able to return to work since last November and have no disability payments coming in, so my family is struggling as well. I guess all we can do is support each other, pray, and hang in there hoping for a better tomorrow.
Good luck to you!

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I was told the gastric pacemaker wouldnt solve anything for me. Im as careful as i can be keeping blood sugardown and just being vety careful about fiod choices to feel good doesnt always help. I wish you the very best. Write anytime!

REPLY
@tammyj0201

I have had the same exact symptoms, as well as ringing in my ears for about 3 years now and I am also NOT diabetic. First they said it was my gallbladder because I had alot of vomitting, and had gallstones that showed up on a CT scan, so they removed my gallbladder. After about 3 months I continued to have the same symptoms so then they said it was severe reflux or (GERD) and put me on medication. The “reflux” especially chest pain contined and I had a Nissen Fundoplication this past March to correct this. If they suggest this surgery DO NOT do it. It has only made the nausea, fullness, and gas/bloating 100 times worse and now I can’t belch or pass gas as effectively as before the procedure and I can no longer vomit due to the creation of a one-way valve into my stomach. About a half-hour or so after a regular meal, even very, very small portions, I have chest pain, stomach pain (from the gas), and I am bloated to the point where I feel (and look) like I am about 6-8 months pregnant. I can lose or gain up to 15 pounds in the same week depending on if I eat solid food or not, and if my stomach decides to empty or not. Eventually when my stomach does decide to empty I have unpredictably severe diarrhea with a lot of lower abdominal pain until everything passes. Unfortunately I am managing the exact same way you are. Most days I just have Gatorade or flavored water like Propel, but eventually I get hungry, eat solid foods, and suffer. This cycle never ends, it just continues on and on.

I have been told that the only thing left to do would be a gasgtric pacemaker, which my insurance won’t cover until the “official” gastroparesis diagnosis has been confirmed for 1 year, and all other methods have failed, i.e. medications like Reglan,Domperidone, and anti-reflux surgery. This won’t be until November for me and if I do decide to have the pacemaker, I have to travel about 2-1/2 hours away from my home and family to have it done. Since there are no guarantees with this procedure either I’m still not certain what to do. It is a real challenge living this way. I haven’t been able to return to work since last November and have no disability payments coming in, so my family is struggling as well. I guess all we can do is support each other, pray, and hang in there hoping for a better tomorrow.
Good luck to you!

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I didn’t get a pacemaker. They did a fundoplication (wrapped the top part of my stomach around the esophagus to tighten things). In the process he cut my vagus nerve, which caused the gastroparesis. I thought I was

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@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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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.

Liked by MaryinKansas

REPLY
@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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Dear Lisa I am so sorry for all you are going thru. My daughter got sick 2003 when she worked at a day care and came home throwing up. She went into the Hospital for 2 months. They gave her demerol to knock her out so she wouldn’t vomit all the time and she had also TPN. We were adviced by Baylor here in Houston not to do the pace maker for it hasn’t really proven it’s self. She still has her stomach, but it can go into chronic pain where she can’t control it and we go to the Hosptal. She would be weeks at a time in the Hospital, now we go only about 7 times a year instead of 60. Crazy right. I said all along to everyone are you sure we don’t have a dule diagnosis. I think she has become now use to all the pain meds. You can’t give the cannons of pain meds in the Hospital and send someone home on Tylenol with codine 3. It just doesn’t work. 5 Hrs later they are going thru detox and you are back in the ER. She now takes 2mg of SUBOXIN for gut cramping and pain and a antisuppressant to calm the stomach . She also has shots for the nausea 25mg phenergran a box of 30. This medication I give IM in her hip and it catches the nausea quicker then the pills. Dear Lisa if I could hold you in my arms and comfort you I would. Know one knows what it’s like to have a sick child or family member in your life. I will keep you in my prayers. Saskia

Liked by MaryinKansas

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@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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Hi I’m 42 years old diagnosed I too suffer from this horrid condition I’m currently laying in a hospital bed in midland Michigan my quality of life isn’t the greatest very weak very sick monthly seems to hit me hard during menstral cycle I live on mostly liquids but on occasion eat what I want if I’m going to vomit anyway I’ve kept food logs. now was everyday for 3 years I was in bed have had Botox and getting it again January 26 I understand your agony your fear. I hope the best for you but I’m at a loss for any new or good info

Liked by MaryinKansas

REPLY
@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…

Liked by MaryinKansas

REPLY
@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

REPLY
@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.

Jump to this post

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
@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

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

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
@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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