Badgut RN: Looking for answers to help with gastroparesis   

Yes, at endoscopy.

I read there’s a new drug, maybe in trials, “donperidone”. A medical school near you might be able to help.

The best advice for anyone with digestion issues: go ASAP to a dietician. I had to ask for this as it’s simply Not on a medical doctor’s radar!! Lots and lots of help from dietician. Medicare doesn’t pay for this diagnosis to see dietician so you may have to pay but worth it. If you have other insurance I don’t know the protocol. But if you have other issues, insurance pays for diabetes nutrition guidance and I believe overweight diet counseling.

I also suffer from this, however, the ulcers are my problem now.

Amen! A Registered Dietitian is also a great resource if you are allergic to wheat. I initially saw a dermatologist and she told me that the rash I had was not dermatitis herpetiformis(spelling?). It was and is a result of ingesting wheat. An R.D. amd a gastroenterologist confirmed the rash and celiac disease.

@annieoh hello - I don’t think domperidone is new. I’ve been taking it for a couple of years after it was prescribed by my gastroenterologist for gastroparesis. He explained that I would have to call a mail order pharmacy outside the USA because the FDA would not approve it for use here. I get mine from Canada. It is approved for use worldwide except in the USA. It’s even over the counter in some countries. It helps improve stomach motility.

@pdilly @annieoh ,

I tried domperidone in 2013 and I had several side effects.. I don't remember what they were now and not sure where the paper is I wrote them on. I got the prescription from a doctor at the Mayo in Jacksonville. I had it filled at a local compounding pharmacy. My insurance did not pay for it and I don't remember the cost. Worth checking at local compounding pharmacy for first try.. I got two week's worth. I think I made it a week and a half before I said I'd rather put up with the disease than the medication. It works for many people though.

@fourof5zs Hello Zaroga - hope you are doing ok! I remember you posting about your experience with domperidone in another conversation on this site. I am so sorry it did not work for you. It has worked so well for me with no side effects whatsoever. That’s what’s so crazy about drugs. They can affect anyone in anyway at any time.
(I was always so surprised that a compounding pharmacy made domperidone for you since it’s not approved for use in the United States. I did not realize they could do that.)

I can relate with you completely. I have the same condition and same exact symptoms/issues. I suffered for 10+ years with no Doctors having an answer that would help. The only treatment that would give me some relief was to take lactulose almost daily and once a month I had to clean out with the same prep you do before a Colonoscopy. I was so fed up and depressed because of being miserable and looking like I was pregnant all the time,(even had been asked when my baby was due, several times. I’m 58 years old)!!!
I made several trips to the ER and spent many nights in the hospital. I swear that I had every test in the world done!!
Then strangely, after having an MRI of brain for migraines they saw a tumor on my pituitary gland. After seeing many specialists I was sent to a Endro Dr he diagnosed me with Secondary Addison’s Disease.
He put me on Hydrocortisone 5mg.
tablets. I take 15mg in am and 15mg in pm.
Oddly enough, my bowels started working and my stomach is no longer hard and bloated !!! I’ve been on the Hydrocortisone for 15 months now and I do not look pregnant and have no discomfort and regular bowel movements!!!
My Dr doesn’t really have an answer to why this happened. But I feel that because Hydrocortisone is a Steroid which speeds up your metabolism it must be speeding up my digestive track and making everything work right again!!??
Sounds strange but that’s all I can come up with and maybe you being a nurse you might have some connections to investigate this possibility and might be able to get some relief by trying the Hydrocortisone. Probably only needing a small dose.
Just thought that I would share my incredible story in hopes that there is some off label use here that could give you and others relief from this horrible condition. I’m not a Dr. and am only explaining my personal experience. Good luck and please keep me posted.
Sincerely,
Michelle

I was diagnosed with gastroparesis in 2016. May vagus nerves were inadvertently cut/damaged during a surgery. You are correct in that gastroparesis is miserable! I had a pyloromyotomy in August 2016 which helps my stomach empty. Trying to take in enough calories every day is a battle, and an uphill one at that . I am losing the battle currently. I am 6'2" and weigh 137. I have a CT scan tomorrow as Dr.'s are grasping at straws to determine why I am getting stomach cramping and diarrhea almost every time I eat, regardless of what it is. I am well-versed in the gastroparesis diet and don't stray from it. I have had a lot of ups and downs over the past four years....picc lines for parenteral nutrition (and several episodes of sepsis), j-tube for nutrition (did ok for a while and then started vomiting the j-tube liquid followed by bile and pancreatic acid and developed granular scar tissue which was painful and the tube was prone to pushing itself out....none of the prescriptions helped...from what I can gather people seem to respond differently to this disorder. I hope you find some relief.

Hi @rossjt and welcome to Connect. I can relate to some of your struggles on a personal level. I have had several abdominal surgeries resulting in a G-tube placement that later caused sepsis and peritonitis. I am 6'0 and got down to 120 lbs at one point. It is an uphill battle for sure! This was a good discussion that you picked to share your story as there are several people that are having similar issues. @tazz61, @pdilly, @mariesgut are just a few.

I have added an article below that you might be interested in reading.
http://www.digestivedistress.com/sites/default/files/pdf/Chronic%20Diarrhea.pdf
Has your doctor considered Dumping Syndrome at all? Also, are you currently on any medications? Sometimes with gastrointestinal issues, medicine can weigh heavy on how our body reacts to it.

Is anyone out there living well that has been diagnosed with gastroparesis? My vagus nerves were cut during a surgery which caused my gastroparesis. I have lost 100 pounds and have tried prescriptions, a j-tube, a picc line and the gastroparesis diet. I am 6'2" and currently weigh 132 pounds. This is not working. I now get diarrhea almost every time I eat, even though all I eat are gastroparesis diet approved foods. I was doing ok until about 6 months ago. If anyone is having a quality life, I would like to know how you are doing it?