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

@pdilly

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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My gastroenterologist suggested it was likely the cause since I began the excessive vomiting after surgery. Just something I would do differently since I only had mild symptoms prior to the surgery.

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Thank you @dotdash I just wondered because I know damage to the vagus nerve can cause Gastroparesis. I’ve just wondered how it’s determined that there was damage. And I guess it’s determined by your symptoms following a surgery — like you had the excessive vomiting.

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@pdilly

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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did they chop up the bezoar while in the stomach doing endoscopic exam or did they have to go back in with some kind of surgery? I am having endoscopy and colonoscopy in a few days and I hope I don't have one. It wouldn't totally surprise me if I do though. I am slow emptying liquids as well as solids and it has developed gradually over past 6 mo. to yr. Haven't had any tests yet. I have sloshing sounds for a few hours after rising from sleep, until get full enough of liquids and little food that it all goes silent much of the rest of the time. I also belch a whole lot, often loud and frequent. From what I read that is likely from food staying in transit so long it starts to ferment or something.

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@beanglow

I don't have gastroparesis but do have CIP which also has to do with slow motility of the intestines. I was diagnosed just recently and my doctor has tried a few conservative approaches which have not helped. I am on a low residue, low fiber diet and cannot eat solid food. I have been living on Boost for months. It's hard to maintain my weight or gain any. I've lost over 35 lbs. I'm also looking for some suggestions on any medications which help with the condition.

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I haven't tried any meds yet and won't unless I get worse. You are already worse it sounds like. Reglan and domperidone are the only 2 I think. Both have the possiblity of severe side effects. The first, if I remember right, is tardive diskinesia, uncontrollable twitches or other movements. they may go away if stop meds. But not always. Same is true for many psychotrophic meds. The second med is possible to preceed a heart problem, can be very serious. In USA you have to get it from a dr. who will sign a bunch of paperwork as its experimental or somesuch designation here. Other countries its approved. Think insurance won't cover it and so it is pay out of pocket so naturally the drug companies charge a lot. Not sure price. Also read somewhere that must go in to dr. every 2 or 3 mo. the first yr. or something similar. Go to drugs.com and type them in and read prescribing information on each. Some of my spelling may be a little off.

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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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What does CIP stand for?

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@mayorocks I did a lot of research about the monster in my belly. Read an article about success getting rid of them by blasting them with Coca-Cola! Seriously! No docs in my area would do that though.
So without my doc’s blessing, I started drinking a couple of cokes a day on an empty stomach. (Not supposed to drink cokes when you have Barrett’s.) When I had my 2nd RFA 10 months later, the doc said the monster was gone.
Now I’m not going to say that I got rid of it by drinking cokes because I’m sure that the extremely low fiber diet and taking domperidone had a lot to do with it!

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@pdilly

@mayorocks I did a lot of research about the monster in my belly. Read an article about success getting rid of them by blasting them with Coca-Cola! Seriously! No docs in my area would do that though.
So without my doc’s blessing, I started drinking a couple of cokes a day on an empty stomach. (Not supposed to drink cokes when you have Barrett’s.) When I had my 2nd RFA 10 months later, the doc said the monster was gone.
Now I’m not going to say that I got rid of it by drinking cokes because I’m sure that the extremely low fiber diet and taking domperidone had a lot to do with it!

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VERY interesting. It would be worth trying your route to avoid surgery. I read somewhere that the endoscopic equipment can sometimes chop them up so they go through, probably much smaller than yours I guess. Or possibly it has a suction to vacumn, up the pieces it chops. I am just guessing. I am not sure much gets through me since even liquids are slowed.
I know coke has been said by someone to be very corrosive and that you can pour it on battery cables attachments in car to bubble off corrosion. Don't know if its just the carbonation or what but I did that once. If I end up having one I will write again to see where you read it etc.

did you have side effects, good effects or what with domperidone? I have thought about trying to get on it as I sure don't like this diet or the prognosis for improvement on average.

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No bad side effects at all with domperidone. I have to get it from Canada because the FDA has not approved it. And I think it must be helping me. Of course I’m sure the extremely low fiber diet helps too.

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By the way the domperidone cost me $80 for 200 10mg tablets. I’m supposed to take them 4 times a day but I only take it twice a day — before breakfast and at bedtime.
So that’s a 100 day supply for me.

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@pdilly

No bad side effects at all with domperidone. I have to get it from Canada because the FDA has not approved it. And I think it must be helping me. Of course I’m sure the extremely low fiber diet helps too.

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Domperidone was a Godsend for me for a couple years but now its not very effective. Does still keep my all liquid diet down.

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I did that in the beginning as well.

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@mayorocks

What does CIP stand for?

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CIP stands for chronic intestinal pseudo-obstruction. It is a rare potentially disabling disorder characterized by abnormalities affecting involuntary coordinated muscular contractions of the gastrointestinal tract.

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