question about gastroparesis

[Pistol]

I have a long history of GI issues - including barrett's esophagus - from POTS. I also have several deficiencies including B12 and ferritin. After some studies and based on my symptoms I was just diagnosed with gastroparesis which supposedly is causing the GI issues. For now I am to try the dietary route but I am already doing all of that for years: 6 small meals a day, no fresh fruit or veggies, low acid, avoid eating late in the pm, drink fluids with meals … here is my question: does anyone have any additional tips to avoid the problems from gastroparesis and has anyone found relief with meds and if so : which ones? I take protonix, Zantac, GI cocktail, Zofran, Phenergan and Compazine. --- Thanks for reading!  

[StayAtHomeMom]

As far as I know there are 2 medications that can work. Reglan and a compounded medication. My sister in law has severe gastroparesis and is allergic to the Reglan. The compounded medication I think she tried for a month or two but didn't help. They have talked about putting a pacemaker in that would help her stomach digest, but I don't think she ever did it. 

Did they do the test where you eat the dyed egg and they x-ray your stomach a few times to see how it is digesting? Have they tested you for celiac disease?

Personally I won't accept a diagnosis unless there is definitive proof. Too many experiences with I think it is this. Then I react badly to the meds. 

 

[Guest KiminOrlando]

I agree with @StayAtHomeMom These meds are rough, so eating the glowing eggs should happen before trying them. I have gastroparesis and my doctor put me on the compounded med. It changed my life! If it ever stops working, well, that is simply unimaginable. If you fail the glowing eggs test and you try the compounded med and it works, send me a PM. 

Don't be afraid of the med. It isn't perfect, but life is so much better.

Kim

[WinterSown]

Compazine gave me lockjaw. Not a happy drug for me. Reglan made my tongue jump around in my head and I drooled all the time.  Endoscopy showed I have a paraesophageal hernia--four inches of my stomach are up through and above the diaphragm--running right along my vasovagal nerve. When I upchuck it feels like a lightning bolt going through me and then I faint. Yipee! Prilosec 40mg has been the most helpful. It cuts down on bloat and GERD. I'm happy with it. I do eat veggies and fruits but most I cook in the microwave twice, then I freeze some of them into serving packets. Microwaving and freezing are wonderful ways of breaking down the cellulose and making food more digestible. I can eat watermelon without a hitch, and thats wonderful because it's loaded with electrolytes and water. Good stuff it you can digest it. I love this book, I bought a used copy a few months back. Recipes for IBS. It has a lot of good advice and is very informational. The recipes are bulleted so you know which are recommended for how you are feeling. 

 

[Pistol]

@KiminOrlando - I did have the gastric emptying study with the eggs and I passed it but my GI states that you can have a normal one and still have gastroparesis. They think I have it and just had a good day, and I could only eat a little bit of the eggs ( not as much as they wanted me to ). I have pretty bad stomach issues and twice I threw up hours after eating a small meal and it was still mostly undigested ( sorry if that comment is yucky ). I also get full after eating a little bit - if I eat an egg I feel like I had a 7 course meal!  ( I am a cheap date!!! ). 

Thanks everyone for your responses - I appreciate it! 

[Guest KiminOrlando]

@Pistol That sounds like gastroparesis. I threw up spaghetti the next morning. When I bent over to pick something up, stuff came up. Yuck! Glad it is under control now. I highly recommend the compounded med if your doc will write for it. It isn't FDA approved but is widely used in Canada and in Europe for decades. 

Let me know if you decide to try it.

[Pistol]

@KiminOrlando - thanks! If I do not get better than I will ask my GI about it. They are really accommodating - be well yourself and take care!!!!!

[blizzard2014]

4 hours ago, KiminOrlando said:

@Pistol That sounds like gastroparesis. I threw up spaghetti the next morning. When I bent over to pick something up, stuff came up. Yuck! Glad it is under control now. I highly recommend the compounded med if your doc will write for it. It isn't FDA approved but is widely used in Canada and in Europe for decades. 

Let me know if you decide to try it.

So,, if you burp up and taste 8-12 hour old food you ate, could be a problem? I wonder because sometimes I can barely eat a microwave meal and last night I ate a whole pizza, but I am paying for it now with bloated full stomach and cramps. But only ate like that because my constipation turned into over-activeness this week. BP is back out of control and bowels have sped up which I prefer over inactive bowels. I need to get checked out eventually. Little by little I guess. 

[StayAtHomeMom]

6 hours ago, WinterSown said:

Compazine gave me lockjaw. Not a happy drug for me. Reglan made my tongue jump around in my head and I drooled all the time.  Endoscopy showed I have a paraesophageal hernia--four inches of my stomach are up through and above the diaphragm--running right along my vasovagal nerve. When I upchuck it feels like a lightning bolt going through me and then I faint. Yipee! Prilosec 40mg has been the most helpful. It cuts down on bloat and GERD. I'm happy with it. I do eat veggies and fruits but most I cook in the microwave twice, then I freeze some of them into serving packets. Microwaving and freezing are wonderful ways of breaking down the cellulose and making food more digestible. I can eat watermelon without a hitch, and thats wonderful because it's loaded with electrolytes and water. Good stuff it you can digest it. I love this book, I bought a used copy a few months back. Recipes for IBS. It has a lot of good advice and is very informational. The recipes are bulleted so you know which are recommended for how you are feeling. 

 

Have you tried talking to a chiro about the hernia. I have heard of some that can be corrected through chiropractic care. 

[WinterSown]

7 hours ago, StayAtHomeMom said:

Have you tried talking to a chiro about the hernia. I have heard of some that can be corrected through chiropractic care. 

It will have to be removed by surgery when I am ready. I have been to the chiropractor before--I had pinched nerves in my neck. Wonderful relief. 

 

[Guest KiminOrlando]

@blizzard2014 Yes, it sounds like you should see a gastroenterologist. I had a similar problem. Then when you have to eat the glowing eggs, try to schedule it for a day that isn't right after you empty. Have you been able to find a pattern? I had a pattern somewhat. 

[bombsh3ll]

I don't have gastroparesis but I do struggle with nausea and no appetite due to being presyncopal all the time and eating drawing even more blood flow away from my brain, so I have lost considerable weight since developing POTS. I blend things up in my nutribullet and drink a lot of protein shakes. The bullet allows me to get fruit and veg in - would this be an option for you or are you advised to avoid them even in liquidized form? I find liquid a lot easier to take than solid food.

One medication that I tried for POTS was pyridostigmine aka mestinon. Rubbish for orthostatic intolerance but definitely got my digestive tract moving! Is this something you have tried or could ask your doctor about if the other meds don't work?

I have had reflux and chronic constipation/poor motility all my life long before POTS - I attribute to having EDS rather than POTS. I take omeprazole and movicol for these. Magnesium citrate also helps me go. 

B x

[Pistol]

My problem is that I cannot tolerate liquids very well. I can tolerate the discomfort from eating an egg or 2 pretzels but I cannot tolerate a stomach full of liquid - especially water. It gives me the worst heartburn. I do tolerate gingerale or low-alcohol beer ( of all things! ) or even carbonated water. 

[blizzard2014]

18 hours ago, KiminOrlando said:

@blizzard2014 Yes, it sounds like you should see a gastroenterologist. I had a similar problem. Then when you have to eat the glowing eggs, try to schedule it for a day that isn't right after you empty. Have you been able to find a pattern? I had a pattern somewhat. 

I don't notice a pattern, just when I began to have the severe constipation despite being on pain meds for 5 years and not having an issue. Pain meds took me from going to the bathroom 11 times a day to 3 times a day. Then all of a sudden locked up and then liquid movements, then locked up again. This all started about 2 years ago. This week it is a solid movement, then a gooey movement, then two liquid movements, then done. But still feel bloated and like I have to go to the bathroom. I prefer this over being locked up and throwing up. I have only thrown up huge amounts three times lately, but I feel like throwing up a lot. It is like someone is squeezing my throat and saliva starts to drip out. If I fight it long enough, it turns to a liquid movement and the nausea passes. For this week I attribute the movements to starting 500 mgs of Magnesium citrate per day. I believe it is helping me a lot. I already had a semi-solid movement today and waiting for the goo and then the liquid movements lol. Sorry for TIM, but it beats being backed up and having to lay in med. Oh, I do notice that when I sleep and lay in bed more, my bowels empty better/faster. Last week, I was sleeping 9 hours, then awake 6, then sleep 6, then awake nine, rotating in said order all week and it helped a lot.