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

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ken82 | @ken82 | Sep 27, 2019

Are you home? Is it partially digested food that comes up in the esophagus? Eat less each meal but eat more often...stay vertical after eating..

pdilly | @pdilly | Sep 27, 2019

Yes I’m home — had the laparoscopic surgery Tuesday at.noon and came home Wednesday evening. I can already tell the difference — no partially digested food coming back up and best of all no heartburn!

Thank you for the advice — I do all those things as well as eat very little fiber. I also take my “illegal” drug twice a day! I call it that since it’s not approved by the FDA and I have to get it from Canada! Domperidone.

ken82 | @ken82 | Sep 27, 2019

I don't take that... My Radiologist friend in Sweden advised against it.. as my Iowa GI prescribed it . That's one of the reasons I went to Mayo MM

ken82 | @ken82 | Sep 27, 2019

Glad things are going well... happy sailing..k

pdilly | @pdilly | Sep 27, 2019

Thank you @ken82 — at first I wasn’t going to get the domperidone because it wasn’t FDA approved. But my gastroenterologist wanted me to try it to see if it would help move things along out of my stomach — he didn’t want another monster to form in my belly. (I hate the B word so I call it the monster in my belly!)

My prescription was to take 4 a day but I only take it twice a day — morning and night — because that’s the only time I can remember to take meds! And it has worked very well for me. According to my gastroenterologist it is considered safe in countries all over the world — and is even an over the counter med in many countries.

ZeeGee | @fourof5zs | Sep 27, 2019

In reply to @pdilly "Thank you @ken82 — at first I wasn’t going to get the domperidone because it wasn’t..." + (show)

@pdilly Glad you are doing well. I tried Domperidone for a short time. I had a lot of side effects.. which I don't remember what they were now and it did not help. I got it from my local compounding pharmacy. It is probably cheaper getting it from Canada. I cannot remember the cost either. Many think it is illegal in USA.. just not approved.

Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Sep 27, 2019

I have motility problem for years - never tried domperidone. Most worrisome is the risk of cardiac side effects.

pdilly | @pdilly | Sep 27, 2019

Thank you @fourof5zs — I have been so lucky. Domperidone helps move food out of my stomach with no side affects. I have gastroparesis but it’s moderate — not severe like so many people on this thread suffer with.

@astaingegerdm I understand your concern. I’m lucky that I don’t have heart disease. Also my gastroenterologist made me go to a cardiologist to get checked out and approve me trying ithe domperidone before I sent off my prescription to Canada.

sickirishlass | @sickirishlass | Sep 28, 2019

In reply to @pdilly "Thank you @fourof5zs — I have been so lucky. Domperidone helps move food out of my..." + (show)

How do I send a prescription to Canada? The Doctor took me off of Reglan & gave me nothing else , I am having a horrible time digesting food. I’ve been told about domperidone but can’t get in the 🇺🇸
Where /how do I send a prescription to Canada! Thank you in advance 👍💕