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

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.

REPLY

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?

REPLY

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.

Liked by pdilly

REPLY

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.

REPLY

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.

Liked by pdilly

REPLY

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.

Liked by pdilly

REPLY

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.

REPLY
@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?

Jump to this post

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.

Liked by pdilly

REPLY

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.

REPLY
@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.

Jump to this post

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.

Liked by pdilly

REPLY
@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.

Jump to this post

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.

Liked by pdilly

REPLY
@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.

Jump to this post

What does CIP stand for?

Liked by pdilly

REPLY

@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!

REPLY
@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!

Jump to this post

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.

REPLY

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.

REPLY
Please login or register to post a reply.