Gastroparesis with severe symptoms!

Posted by shimmerpixie @shimmerpixie, 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.
~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 🙁

@limecat

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.

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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.

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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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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

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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.

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, 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.

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@margieg

, 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.

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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: http://www.mayoclinic.org/diseases-conditions/gastroparesis/basics/treatment/con-20023971

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).

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@margieg

, 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.

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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!

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@margieg

, 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.

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

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@margieg

, 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.

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

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@margieg

, 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.

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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.

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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? 

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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?

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@faycarole

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? 

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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.

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@faycarole

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? 

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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?

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@faycarole

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? 

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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.

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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.

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