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

@lelia

Elaine, I'm so sorry you haven't had better results from your Mayo visit. Wish there was something I could do. Lelia

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Thanks, Lelia I have been in contact with the doctor from Mayo but so far the things he's suggested have not worked. I will be talking with him again on the 19th. I'm still on Boost and trying a few soft foods but still experiencing gas, bloating and distention, and some spillover diarrhea. I hoping that there is something out there that will help.

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@beanglow

Thanks, Lelia I have been in contact with the doctor from Mayo but so far the things he's suggested have not worked. I will be talking with him again on the 19th. I'm still on Boost and trying a few soft foods but still experiencing gas, bloating and distention, and some spillover diarrhea. I hoping that there is something out there that will help.

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Glad you will still be in touch with him.

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@pdilly

@pgroves1 I have never had shortness of breath with Gastroparesis.
@downtowntiger With severe GERD it definitely feels like you’re having a heart attack! I have been taking Prevacid for about 20 years. (Your gastric emptying study results were better than mine. I was diagnosed with moderate Gastroparesis. Yours sounds very mild. Yay!)

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Bless you. I am borderline but hope a Nissen Fundoplication will fix my GERD and mild paresis. Hope you feel better!

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@downtowntiger

My gastric emptying study showed I retained only 15% after 3 hours and was empty at 4 hours. I have had GERD for five yrs. I have chest pain in my sternum. I have one dr saying gastroparesis and 2 saying severe GERD. I do great until about 5 pm when I have a wave of nausea. Lost my appetite! I’m eating bland and no caffeine. It feels like a heart attack. I just try to calm down. God bless you-are you on meds?

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Number is wrong……40% empty at 90 minutes

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@downtowntiger

Bless you. I am borderline but hope a Nissen Fundoplication will fix my GERD and mild paresis. Hope you feel better!

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Might want to rethink that Nissan, I've had two and the damage to the Vegas nerve is not repairable. Full liquid diet ONLY now. Its a sad life. All due to the surgery and damage to Vegas nerve. If your condition is mild now you may want to reconsider.

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Interesting to hear all of this. I have yet to be officially dx'd with gastroparesis, but all my symptoms fall into that definition. I have had 2 emptying studies, one was delayed, the other normal. I have higher levels of bile in my stomach, and a Bravo test showed this moving up the esophagus. So with that I can relate to the chest pains that some of you note here. My GI doc is suspecting a vagus nerve issue as part of this given I have had 2 whiplash concussions in my life. None of this was happening to me prior to my first one. Also, I have no gallbladder which never really solved anything and only made my GI issues worse. Would really like to hear if Botox has worked for anyone. The comment on feeling like you have eaten Thanksgiving dinner all the time is spot on….small amounts of food make the right side of the gut feel like there is cement inside for me. I had a metal stent placed in the common bile duct to see if that would help, but alas it did not. Which is why I am at wits end and may need to take a risk here.

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Interesting how we all have different symptoms with Gastroparesis.
@bborth I wonder if that feeling you have that’s like cement is a bezoar. I hate that word! When I had one I just called it the monster in my belly! When they saw that in my stomach during an EGD, that’s when I was diagnosed with gastroparesis.
@dotdash how did they know that your vagus nerve was damaged during Nissen fundiplication?

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That word has never come up in all my appointments or tests. Will bring this up though. Sounds like the EGD will diagnose this? CT scan maybe? As of now, I meet with a GI surgeon a week from tomorrow to talk about either botox or a pyloroplasty. This all starting after a whiplash concussion may be behind my GI stuff after all. Onward.

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You probably don’t have a bezoar but when you mentioned cement it reminded me of when mIne was accidentally found during the EGD to check out low grade dysplasia in my Barretts esophagus disease. It’s just a big hard hunk of undigested food sitting in your stomach. Gross! It was part of the reason I felt so full after just a few bites. Although it’s gone now, I still feel full very quickly — I guess because the of the slow stomach emptying.

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Did you have an emptying study done? My PCP insists that you can have a dx of gastroparesis and have a normal study. All depends on the day I guess, which seems true since some days are better than others. Confusing though.

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bborth I have had no surgery and am relatively new with gastroparesis. Articles I have read, many at cleveland clinic motility clinic site and also journal articles at pubmed and other places, one article and I don't remember where really discouraged or said don't do botox. (That makes sense to me. It is very temporary for one thing. Also a good number of gastroparesis patients problems were caused by prior surgery or similar of one sort of another. Anything that damaged vagus nerve.) I don't remember what the article saying don't had as reason. Try Cleveland clinic motility clinic in search and read everything you can find on there.
I would want a work up by head of that cleveland motility clinic or head of Mayo motility clinic before considering surgery. Might change my mind someday if met someone I knew had much experience, training, and ethics. I don't know anyone like that. Both of those directors see patients and are highly rated in numerous places.

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I did have the stomach emptying study after they discovered the bezoar. My gastroenterologist didn’t think I needed to do the study because he said I clearly had severe Gastroparesis because of the monster in my belly! But I wanted to do the study because I read that it was the way Gastroparesis is accurately diagnosed.

So it doesn’t make sense to me that your study could be normal and then be diagnosed with Gastroparesis. But I’m not a doc!

My emptying study confirmed Gastroparesis— but moderate instead of severe like my doc suspected.

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