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

Interested in more discussions like this? Go to the Digestive Health Support Group.

ken82 | @ken82 | Nov 21, 2023

In reply to @parrotlady "Mine was diagnosed by symptoms but there is a breath test for diagnosis." + (show)

@parrotlady at Mayo MN I had 3 tests in GI dept. The most telling for gastropanesis is one where you eat a standard breakfast with a nuke tracer and then have hourly x-rays for 4 to 6 times.. my Gastropanesis is medium but was caused by a failed Nissen surgery at my local hospital.. bad decision on my part.. physical damage to stomach nerve system cannot be fixed..

dragonfly123 | @dragonfly123 | Nov 21, 2023

low vitamin D shown on a blood test, vitamin D is vital for the GI to operate properly...thyroid, calcium and vitamin D all intertwine, along with thiamine and folic acid, B vitamins, and add electrolytes

romans8 | @romans8 | Nov 21, 2023

In reply to @astaingegerdm "@romans8 Regarding Motegrity you can get it through a Canadian pharmacy at a much lower price...." + (show)

Thanks, I will check that out. Have you had good success with Motegrity? Any side effects?

Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Nov 21, 2023

@romans8
I’m pleased with Motegrity so far. I don’t take it every day- I change depending on how irritated my bowels are and sometimes I take half a pill. I also take Amitiza. The combination works well enough for me. Just wish I didn’t have to take anything!
I have not experienced side effects.

parrotlady | @parrotlady | Nov 22, 2023

In reply to @ken82 "@parrotlady at Mayo MN I had 3 tests in GI dept. The most telling for gastropanesis..." + (show)

The breathe test was for SIBO. I had surgery for hiatal hernia and the surgeon injured my vegus nerve and now I have gastroparesis. Got C-diff immediately followed surgery and the SIBO. My biggest mistake was having the surgery. It’s been 8 months and I haven’t had one day without nausea, abdominal pain and diarrhea.

ken82 | @ken82 | Nov 22, 2023

In reply to @parrotlady "The breathe test was for SIBO. I had surgery for hiatal hernia and the surgeon injured..." + (show)

@parrotlady a
The Nissen surgery done at my local central Iowa hospital was supposed to fix GERD and the Hiatal Hernia... for 2 months while I lost 50 pounds the Local GI and surgeon tried to figure out what was wrong.. at Mayo MN the GI doc figured it out one day...with 3 tests.. The nerve damage is not fixable.. so since 2015 every meal is a challenge.. I must eat very often. ..seems like continually.. grazing I would call it.. cut food small.. chew well.. eat less than 1/2 your normal portions at a time.. Pause as you eat.. I drink Pedialyte so I can stay hydrated without drinking so much water.. I have gained back 30 pounds but keeping up weight is a battle.. I can eat nuts, fruit, ground meats.. avoid hard to digest cabbage, broccoli.. good luck, lady.. ..I eat ice cream with strawberries very often..

ken82 | @ken82 | Nov 22, 2023

In reply to @parrotlady "The breathe test was for SIBO. I had surgery for hiatal hernia and the surgeon injured..." + (show)

@parrotlady .. I drink Kefir dairy product..to help with loose bowels..

parrotlady | @parrotlady | Nov 22, 2023

In reply to @ken82 "@parrotlady a The Nissen surgery done at my local central Iowa hospital was supposed to fix..." + (show)

I was told I shouldn’t eat nuts, fresh fruit or vegetables because they’re hard to digest.

bonez3861 | @bonez3861 | Nov 23, 2023

In reply to @ken82 "@parrotlady a The Nissen surgery done at my local central Iowa hospital was supposed to fix..." + (show)

I have severe gastroparesis and barrett's esophagus and chronic pancreatitis and severe malabsorption. I am on a feeding tube and pump fed into my small intestines. I take Zofran 8mg that dissolve on my tongue. I take it continually. Sibo is a monthly problem. I recently lost 15 pounds for no reason. I am struggling to gain weight but it won't happen. I'm 96 lbs and 5'5 my BMI is 16. It's horrible. I got this when I was 49. I'm now 63. I am not getting any answers from my gastroenterologist and I am finally going to Shands Hospital for another opinion. I have been to all 3 Mayo Clinics and one 3 time's. I need answers because this is awful. If I find anything helpful I will share. Hang in there 🙏

ken82 | @ken82 | Nov 23, 2023

In reply to @parrotlady "I was told I shouldn’t eat nuts, fresh fruit or vegetables because they’re hard to digest." + (show)

@parrotlady my GI told me to experiment.. keeping a log for a few weeks of what food goes in and what happens after.. I kept a little book in kitchen and another in the bathroom... we damaged nerves are all different.. gravity has to be considered as part of the way our stomach passes stomach processed food on.. I cannot lay flat..must be at 30 to 45 degree angle..in bed or on the couch.. Ken