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mild gastroparesis with severe symptoms!

Posted by @shimmerpixie in Digestive Health, Mar 5, 2012

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.
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 🙁


Posted by @sherry8034, Mar 6, 2012

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.


Posted by @sigtau88, Mar 14, 2012

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


Posted by @sweets, Apr 26, 2012

My 23 year old daughter was just diagnose with gastroparesis last week. She is always in pain. She's got the worst case. She cannot eat because it hurts to bad, so she drink about four to five bottles of boost a day for nutrition. I want her to be seen at MAYO clinic In Florida, but medical insurance say she has to be referred. Dr seem like he want to do it on his own, but I want her to be seen by a specialist. My daughter is tired of hurting 24-7 not being able to sleep. What kind of med do you take for this problem. Is there anything else I need to know about this. Will she be able to eat again. Please someone help me!!!!!

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Posted by @krishammerbacher, May 1, 2012

I am 46 and was diagnosed last year with Gastroparesis. I am still searching for a treatment that will work for me. Your daughter needs to see a specialist. I am currently seeing a specialist in Ann Arbor and he is much more familiar with this condition that the doctors in my local community. Praying for your daughter.


Posted by @sweets, May 1, 2012

Thank you. This Dr. Put her on azithromycin to help her stomach empty faster but have not been taking it long enough to see a difference. She cried after she read that its not curable. She take liquid roxicet for pain from a pain clinic. She said she don't want to take pain meds for the rest of her life. Is there anything else out there I can do, her case is severe probably cause it took so long to find out.


Posted by @krishammerbacher, May 1, 2012

From what I have read the severity of the symptoms is not directly related to the emptying time. This is the case for emptying time is mildly delayed but my nausea is constant. I have tried many medications none of which have worked so far but I am not giving up. Currently I am taking Domperidone (although prescribed it is not FDA approved and it has to be ordered from another country or made at a compounding pharmacy). Botox injections are sometimes an option. There is a yahoo group for people with gastroparesis that has alot of good info and also this website


Posted by @sweets, May 1, 2012

Thanks. I am in the g- pact group. She's not on anything for nausea cause nothing help. She said it just come up without being nauseous. I hope someone come up with somethimg to help everyone with this problem. I am praying for all who has it and other problems. Just keep the faith and things will get better.


Posted by @sweets, May 1, 2012

Somtimes I think about writing Dr Phil to see if he know where we can find solutions. Just a thought.


Posted by @jodilynn, Aug 25, 2012


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Posted by @mrsharrison, Sep 29, 2012

I just found out last week I have severe gastroparesis myself. Irritated because I never heard of it before. Not diabetic. I'm the idiopathic that stays miserable because everything makes me miserable. Trying to get second opinion at Mayo very soon.

Posted by Anonymous-c9130af4, May 19, 2013

ive had gp for about 4 years now, ive been on zofran reglan hyoscimine belladonna donnatal pantaprazole and other medications i cant think of right now. i have yet to find a medicine that actually makes my nausea tolerable so i kept researching and read that marijuana can help subside the nausea; i know theres various opinions on the medical use of thc but i decided to try it and its been working better then any nausea medicine ive been on. some doctors have told me exessive use may cause nausea but i dont use it exessively. seems to work its magic basically everytime i smoke even in mornings when nausea is at its worse


Posted by @abracadebra, Feb 17, 2013

taking pain meds on a long term basis will damage the vagus nerve of the stomach that moves the food out of the stomach into the intestines.I'm a type 2 diabetic and have a severe case of gastroparesis that I've been dealing with for almost 2 years.I'm also a chronic pain patient with 3 ruptured discs and nerve damage to my left leg.Was on lots of heavy-duty painkillers for years, now on pain pump. Trouble is the damage cannot be undone.Avoid pain meds if at all possible-I know,my pain is horrible,too.I have to get pain shots in my iv when I give in and go to the ER.But even the regular meds that I take daily don't dissolve anyway and just come back up whole when I throw up.Good luck,my friend.


Posted by @carmiejoe, Mar 12, 2012

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!


Posted by @ccosci, Apr 7, 2012

Hi had a severe case as well. extented stomach severe acid stomach. I gave up all gluten and dairy products and all my symptoms went away . it was a miracle.


Posted by @clemlaa, Aug 20, 2016

Glad you are doing well. I am just starting to give up gluten and dairy.


Posted by @colleenyoung, Aug 20, 2016

Welcome @clemlaa. Are you finding it a challenge to give up gluten and dairy?


Posted by @justjane, Apr 20, 2012

Try Align. You can get it at Sam's or Cosco. It's a probiotic. I have Gastroparesis as well and though it hasn't healed me, I can truly tell a difference. A doctor at Mayo in Arizona told me about it. Also, suck on peppermint candies. That helps me tremendously with nausea. Zofran has not helped me at all. You are not alone.

Posted by Anonymous-8f26f47e, Mar 16, 2013

My neurologist prescribes 250 mg of Erythromycin to be taken 3x a day (total 750mg daily) to help control symptoms, and it works. Does not fix the problem, but without the Erythromycin I have the severe nausea, vomiting, bloating, and cramping but when I take the Erythromycin and eat small, carefully selected meals, I find that between the two it's much easier to control and sometimes I have days where I have no nausea at all. My delayed emptying problems are due to neurologic disease, so I don't know if this will help you or not, but I hope it does. I second Jane's comment---you are not alone. Sending well wishes, always.

Posted by Anonymous-8f26f47e, Mar 16, 2013

I should add this neurologist is at Shands Neuroscience Institute in Jacksonville, FL. I have had good luck at Shands (several different depts) so far. Been there for years now. I have also been to Mayo Jacksonville and they confirmed the Erythromycin treatment. When I told my gp of the treatment, his response was: 'Really? It [the Erythromycin] works for delayed gastric emptying? I didn't know that.' Scary, but my point is one of the specialized centers like Shands, Mayo, Johns Hopkins, etc. should pick up on it right away.


Posted by @mobuckner7192, Feb 10, 2015

Hey! OMG I have a mild delay too! My first emptying test said 59% emptied in 2 hours and at 4 hours I had 23% left. My second 4 hour was 64% emptied in 2 hours and 9% at 4 hours. It's always slow at 4 hours as you can see. That's usually when I get the most nausea too is hours after eating. What was your test result? My symptoms were so severe that I got a pacer and I love it! I feel pretty decent now. My bloating isn't so bad anymore.


Posted by @margieg, Apr 1, 2015

, I have been diagnosed with gastroparesis. Been trying the liquid diet, but can't do that all the time. If I eat a normal amount of food, the symtoms are worse. small amounts more often. I get acid reflex really bad, have to sit up at night till I fall asleep, All things I take for acid reflex slow down the emptying of the stomach, Can't win,. Any suggestions. Trying to get an appointment at Mayo in the gastrology dept. but no luck.


Posted by @rebeccamcroberts, Apr 1, 2015

Hi Marjorie, I'm sorry to hear that you're struggling with this. There are several dietary changes you can make that might be an option for you, including drinking water throughout eat meal and exercising gently after you eat. I've included the link for more information here:

If you haven't already, please try reaching out directly to one of our appointment offices (Arizona: 800-446-2279 Florida: 904-953-0853 Minnesota: 507-538-3270).


Posted by @joryboy, Jul 23, 2015

Hi people, please don't give up, there's a new medication on development it's called relamorelin (rm 131 ghrelin), google it, based on what i've read, it might be a huge help for people with gastroparesis! Please don't give up just yet, there's always hope, no matter what just keep on holding, science might give us another chance at living a normal life again!


Posted by @sherry8034, Jul 25, 2015

My doctor wants to inject botox in my stomach. Any thoughts on that?


Posted by @margieg, Jul 25, 2015

My dr suggested that to me also but when I asked him how long it was good for I said no thanks


Posted by @ccosci, Jul 26, 2015

I am sorry I do not know about the Botox. I am not sure if this suggestion would help you but I had serious digestive disorder and mixed connective tissue disease.
I went off Gluten and Dairy and no longer have these symptoms. Perhaps remove foods like the ones above and eating more easy to digest foods like rice
Bone both ETC, cooked vegetables ETC might help to normalize the stomach? Just a thought.


Posted by @faycarole, Aug 8, 2016

have had this disease for 4 yrs now. i am 75 yrs old and have no life. have had several drs say "nothing we can do" would a trip to mayo help? 


Posted by @katmandoo, Aug 10, 2016

I have idiopathic gastroparesis & suffered for about three yrs until I went to Omaha. Ne hospital and had a gastric pacemaker implanted in my abdomen in April 2012. It's worked wonders with me! I can now eat, as long as I watch what I eat, and don't get sick now. Talk to your gastroenterologist about the gastric pacemaker. By the way I'm almost 61 yrs old.


Posted by @colleenyoung, Aug 10, 2016

Welcome back to Connect @katmandoo! So great to hear that the gastric pacemaker has turned out to be a long-term solution for you. Last time you posted you had the pacemaker for only 2 months and now it's been 4 years and counting. Thanks for sharing your story.

What types of foods do you avoid?


Posted by @katmandoo, Aug 10, 2016

I should have posted foods & medicines I have to avoid from getting sick with my gastric pacemaker so here are some I avoid: any fresh vegetables, fresh fruits, all nuts & high fiber. These are all hard to digest & to much fiber could bind up in my stomach. I can only eat chicken, fish & hamburger when it comes to meats. I also have found that I can't take antibiotics or antidepressants by mouth because they make me sick. So my Dr gives me antibiotic vaccines when I'm sick and I take a short term active antidepressant because the Dr thinks the slow release ones make me sick after about two months on them. Hope this helps anyone else that has gastroparesis.


Posted by @colleenyoung, Aug 9, 2016

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

To contact Mayo Clinic, click this link 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?


Posted by @faycarole, Aug 12, 2016

the constant nausea, my husband is going to have a cochlear implant at vanderbilt in nashville tn next week he is almost deaf and it is so frustrating that i will be unable to go with him for it but my son and daughter in law will be with him after this is done and is hopefully successful i am going to tackle this gastroparesis and my first plan is to try to go to mayo


Posted by @mrsharrison, Aug 15, 2016

After suffering 2 long and horrible years, I no longer have gastroparesis.
I voluntarily stopped all medications for the GP and severe psoriatic
arthritis after multiple complications from side effects landed me in the
hospital numerous times from the 12 medications I was taking.
I began juicing with ginger and greens religiously, became a vegetarian and
no longer have any symptoms of these two dreadful diseases.
I wish all those well who are suffering and pray they too can be healed.
Living a plant-based lifestyle worked for me.



Posted by @citygirlannie, Aug 10, 2016

My stomach emptying test showed I have a zero digestive system. This was due to a surgery last year to pull my stomach down to where it belongs. It had gone thru a large hernia and it got lodged behind my heart and it was leaning on my lungs. My only systems were shortness of breath, weight gain and a very swollen stomach. After the surgery was when the vomiting and diarrhea, and cramps started. I've seen 6 gastro. doctors and I've taken every medicine there is. I even tried Botox and pot. I have lost over 50 lbs. I have dry eyes, hair loss, teeth problems and no energy. All the doctors agree that the vegas nerve was cut or badly damaged and it can't be repaired. You mentioned that you have a gastric pacemaker. Can you please tell me more about that. I don't want a feeding tube if it can be avoided. Thanks so much for sharing.


Posted by @katmandoo, Aug 11, 2016

I had a gastric pacemaker implanted next to my stomach in 2012. My gastroenterologist suggested it after everything else I tried didn't work. I had mine done in Omaha Ne hospital. I believe it has leads that are directly leading into my stomach which stimulates my stomach to work so when I eat it will go down. Gastroparesis means your stomach is paralyzed so food won't go down and then you vomit it up. I vomitted and was nauseous 24/7 for at least 3 yrs. Took several Drs before I was diagnosed. The dr adjusts the pacemaker by upping the batteries in it with a hand held device. I was told its kind of like a heart pacemaker but for your stomach. My last visit to see the dr I ask if they know yet what causes gastroparesis and he believes it's from a virus but I've also heard it can be caused by the vegas nerve not working. I hope this helps answer some of your questions about it.


Posted by @citygirlannie, Aug 11, 2016

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.


Posted by @katmandoo, Aug 11, 2016

I also had a Nissen fundiplication, pylori plasti and the gastric pacemaker all done in the same surgery. I'm sure you could have the gastric pacemaker put in also. Good luck & I hope you find a dr that will do it for you. I had to drive quite a ways away to find a dr to do it but it was so worth it.


Posted by @citygirlannie, Aug 12, 2016

Thank you, I'll start looking today.


Posted by @2thnkpztv, Nov 20, 2016

I have osteoporosis which has gotten worse over the last five years. Two years ago I noticed when I ate to much, such as Thanksgiving dinner about an hour later I would have a pain above my left eye, pain in my left collar bone and indigestion. This was very infrequent. Since April I now have GERD which causes hoarseness, mucus and clearing of my throat. I have been going to a gastroenterologist the last two months and mentioned I thought my vagus nerve was causing this. He said no and gave me medication for GERD. This has not helped. I have read all the information on gastropareses and know this is what I have. How can I convince him?


Posted by @healthsearch, Nov 22, 2016

I have given up trying to explain that I have Crohn's, GERD, diabetes, and a lot of pain. If my family had arthritis I had the same problem I am told. All was false diagnosis. I've been telling different doctors that I was cured in 1960, but because it was not drugs that couldn't be correct. Now I learned all about GERD, diabetes, Crohn's, and memory all controlled by the same source. My treatment in 1960 by an Italian Doctor was shots of: Methionine, B-12, and vitamin K. A two week treatment and I avoided surgery to remove part of my inflamed intestines do to severe pain. Last year from a neck pain I solved all my problems. I noticed eating bread and sugar increased my pain but eating vegetables decreased the pain. I changed my diet per a friend suggestion and the following happened. I was able to stop all my bodies pain including neck, hands, lower back, and knees area intermittent pain. Also by it self GERD stopped. I had it for over 50 years but I knew from the Italian treatment it stopped for 3 years. My diagnosis is the liver since Methionine cleanse the Free Radicals of the liver and I am sure it does other things. I located some liver supplement pills but it helped until I ate the wrong food again. Now I have GERD completely under control and so my intestines and memory. Also my diabetes reversed to normal. I removed bread and any flour products, removed all carbohydrates, soft drinks or any thing with preservatives. I make fresh smoothie drinks fruits and raw vegetables and it controls all my pain within one hour. I eat what I shouldn't and get the pain activated and Neuropathy, but vegetables specially raw vegetables is better than any drug medicines. Why doctors keep it secret? The Internet is full of good information about what I am talking, but no one wants to hear specially when they hear about that bread is the source of many diseases. Sugar also. My neck pain have been my trainer and learning even to pay attention to fresh fruit sugars. So far so good since after many blood test and Ct Scan I was told by my doctor that I figured out there is no medication for me. I also lowered my blood pressure to normal and healed all my ulcers that was on my esophagus from acid stomach. I wished I knew all of these 50 years ago and not suffer from GERD like I did. Try what I am saying it will cure you in few days. I hope it will help you.


Posted by @kanaazpereira, Nov 22, 2016

Hello @2thnkpztv,
Welcome to Connect; I'm sorry that you are experiencing these symptoms, but also glad to know that you are being an advocate for your health. You will notice that I moved your discussion to this group within Digestive Health, as I thought you might like to connect with others living with gastroparesis.

I'm also tagging @gingerlyn, @clemlaa, @citygirlannie, @margieg, @sherry8034, @katmandoo, and @faycarole, with the hope that they can share their experiences with you; @mrsdeecee, do you have any suggestions for @2thnkpztv with regards to the hoarseness due to GERD?

Here is some information about treating gastroparesis from Mayo Clinic
@2thnkpztv, have you considered getting a second opinion? Since the medication is not working, how are you managing your symptoms?

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