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 🙁

What helped me was botox to the lower stomach muscle. An injection was given in 3 places via endoscopy so food always goes into the small intestine. With gastroparesis, the stomach nerves can be so damaged that the contraction (peristalsis), is so slow that by the time the food reaches the lower stomach to enter the small intestine, the pyloric sphincter (muscle opening) closes, keeping the food in the stomach. That is what causes all the nausea, fullness, bloating and vomiting. It also can become the source of infection. Very serious. A special diet is needed of easily digested foods like white bread no wheat, oat, seeded breads, i.e.. I use gummy or chewable vitamins and liquid medicines also. March 2014 I had the procedure at Hershey Medical Center in PA and it is still working. Mine was severe. I would NOT get a pacemaker! There is no guarantee on how long this lasts but so far so good. I use liquid erythromycin as a prokinetic (muscle contractor) for the stomach. The procedure took only 15-20 minutes and no pain. Rare nausea and not that constant loss and gaining of weight, unable to tolerate smells and look at food…etc. A real blessing.

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I also did the Botox injections in my stomach but they quit working. My only choice was the pacemaker which I had implanted in April of 2012 and it was a God send. It is still working until this day. Just my opinion. Kathy

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Very glad to hear! Gastroparesis is difficult to have so thank goodness this is working for you.

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@katmandoo

I also did the Botox injections in my stomach but they quit working. My only choice was the pacemaker which I had implanted in April of 2012 and it was a God send. It is still working until this day. Just my opinion. Kathy

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I am so happy the pacemaker helped you .My husband had severe gastroparesis and we were In the hospital every other month and they couldn’t do much because he was a high risk patient. I’m happy you are doing much better .

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@jlfisher56

Very glad to hear! Gastroparesis is difficult to have so thank goodness this is working for you.

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It is. Very difficult this is why gastroparesis awareness need to be out there.It is no joke especially when you have family or friends suffering from it we suffered so much. They need all the support and understanding they need

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@jlfisher56

Very glad to hear! Gastroparesis is difficult to have so thank goodness this is working for you.

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Thank you. Yes mine is very severe but if I watch what I eat the pacemaker works great.

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

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I have gastroparesis too and sometimes I use an oil by Doterra called Stomach ease and it works great for nausea. I get it online or at a health food store. Just a thought, Robin

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I take ondansetron odt it helps with nausea.

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@ohimsick

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

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I have hiatal hernia and reflux; what is PPI?

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@ohimsick

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

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Protein pump inhibitor. (PRILOSEC, PROTONIX, NEXIUM, ETC.)

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@ohimsick

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

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Hello @ohimsick and @xcinsanx

I’d like to welcome you to Connect, and thank you both for joining the Digestive Health group with such valuable insights. Here’s another great conversation taking place on Connect about gastroparesis:
– Does anyone else have Gastroparesis not caused by diabetes? https://connect.mayoclinic.org/discussion/does-anyone-else-have-gastroparesis-not-caused-by-diabetes/

We sincerely look forward to getting to know you better.
@ohimsick, a few members have also posted about Raglan; may I ask what concerns you about taking this drug? Which proton pump inhibitors have helped you most?
@xcinsanx, you mentioned that your husband was a high-risk patient; would you be able to share a few more details?

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

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PLEASE look into vascular compressions – MALS – Median Arcuate Ligament Syndrome and other abdominal compressions.

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@katmandoo

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

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Glad to hear the pacemaker is working for you and thanks for info on Raglan

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