Domperidone has not had bad side effects for my daughter. There is another med that name I forget which is prescribed in the US and does have serious side effects. It is often the first prescribed med. side effect is muscular, forget the name.

https://www.drugs.com/condition/tardive-dyskinesia.html
Reglan is the scary med and tardive dyskinesia is the side effect to avoid.

I have gastreoperasis I believe came from after my adrenalectomy, never had a problem before this operation. I don't know an answer, but I can relate. There are days we're I just don't eat anything. When I feel good ill eat, but then realize after time, it's way to much. I'm not so sure about GI Dr's, I mean they had me on 5 different pills. I just said enough is enough. Now months and months later I'm hurting again. Bloating nausea oh my. Not only gastreoperasis, but Gerd and hiatal hernia, constipation and the list goes on. I hope you find answers, but on my not so good days I do protein drinks and broth.

Thanks for your reply, Brenda. Sorry you still are not feeling well. Your description of the procedure sounds 'confusing" I am in the medical field so I know quite about about surgeries, endoscopies etc. when you have an endoscopy they go in through your mouth with a tube (like an upper GI examination - which I am sure you have had many of) and they do the surgery through that tube (no incisions in the abdomen) it sounds like you have both? is the pyloroplasty all they did or did you have some other procedure like a hernia repair or something as well?

Anyhow - that is interesting that you can eat right up until an hour before you go to bed. That is my biggest problem - laying down with food in my stomach - it causes major pain/pressure/gas/nausea. I stop eating at 2 p.m. and only have liquids after that - soup with no chunks or thin purees - and I don't even eat any of that after 5-6 p.m.

I live in California - I was hoping the doc who did your surgery was nearby! Is he just a "regular GI doc" or did you go to a Gastroparesis "specialty" doctor?? There is one place near me that specializes in it - but its about 30 miles away and my insurance will not cover it unfortunately. I would very much like to know if the pyloroplasty helps you (once you are healed) and if you are able to eat normally again - or at least "better" and more different foods other than purees and toast!!

SO sorry you are still suffering after everything you have gone thru. i have been researching the procedure you had. You did mention you had the Botox injections first to see if it will work - right? i plan to go that route if if comes to that. My BIG QUESTION that i originally posted and have been trying to find out is: What has been the disease progression for you. Did it start out slowly and then progress - or just came on "all of a sudden" and the symptoms have stayed more or less the same? I got quite a bit of response since i posted the post - but no-one really addressed my question - except for one or two - one got it after having another surgery and one got it "overnight" just woke up one day throwing up with full blown symptoms and was fine the day prior !! I do feel mine is slowly but surely progressing. i go thru bad patches where i only eat pureed stuff and liquids for days - but then i have better days when i can eat a sandwich and some soft solid foods that are easy to digest... in retrospect mine started decades ago - first indication was i was unable to tolerate broccolli and very "heavy/hard to digest" vegetables - that was probably 5-6 years ago - and then it progressed from there..

Hi! I know I’m late to this thread but I was wondering the same thing- if gastroparesis is progressive.
This is how it started for - Well so I have colonic inertia for sure and possibly gastroparesis (according to dietitian) About 6 years ago I had suddenly felt something had switched off in my stomach, turned out that was the beginning of my chronic constipation issues. So For about 6 months I self treated with colonics. I'm assuming that could've possibly made my situation worse but it was temporary relief at least as I could easily go two wks, if not possibly longer without passing any stool at all.SORRY FOR THE TMI! Finally after 6 months my Gastroenterologist put me on 290mg linzess with 17 mg of miralax .. luckily it worked for me. Anyways, fast forward to 3 years after being diagnosed with colonic inertia - I got pregnant and suddenly start having acid reflux and vomiting every single morning. I figured this was temporary but no... it's now been 4 years since I had my daughter and I still have acid reflux (not vomiting thank goodness ) and for awhile I also had early satiety, nausea, and just this overall feeling of feeling like dreadful. I searched for a nutritionist and that helped me a bit, she taught me about macros and slowly increasing them so I was able to increase my calorie intake bc I was def malnourished even tho I was heavier than normal bc I was always bloated ... then after no more results came from that I switched to a dietitian- and she was able to get me off linzess and miralax and swapped it for magnesium- since then i haven’t had bloating. She also suggested some bitters for acid reflux and some enzymes to breakdown my fats, proteins and carbs- which I’ve been taking . My dietitian is now telling me she suspects I have gastroparesis which really upsets me bc I def didn't have the symptoms of it years ago when I was first diagnosed with colonic inertia which leads me to think I developed gastroparesis from having colonic inertia for so long and prob sped up with being pregnant maybe even the linzess was a contributing factor? The reason she thinks I have it bc I had a setback about 3 wks ago where my bowel movements weren’t feeling complete and I was having early satiety again and a lot of acid reflux. My concern is also whether or not gastroparesis (which we assume for now till I get tested is what I have) is progressive or can my diet maintenance and workout help keep it at bay? Rn I’m back on mostly liquids and very soft textured foods, low fiber and low fat in hopes that’ll clear me up and get me back to some regular healthy bowel movements. I would say that mine has progressed sorta.. improved since pregnancy but being pregnant caused so many other issues afterwards as I mentioned. I’m just scared up to how far I’ll progress one day.. I’m sure most ppl on here share that fear :/

Also since I haven’t seen this mentioned anywhere yet, There’s an article on ncbi.nlm.nih.gov -( can’t post the link )
suggesting that gastroparesis also causes smooth muscle atrophy so it’s been suggested to me by my dietitian to continue working out (I do weight lifting) to prevent or slow down the deterioration of my muscles. So just some info for everyone in case they can try and get a workout in.. hopefully it’ll help slow down progression of muscle atrophy.

Hi , I have mild Gastroparesis for 1 year ( gastric study) and I don’t eat after 3 pm if I want to be able to sleep like you. I eat chicken breast, French toast, 1/2 chicken breast sandwich with milk and light Aldi’s ice cream 4 grams fat every day. I had an Upper Endoscopy with Botox injection 4 cc in the pyloric valve, it made it worse for a few weeks. I had a Manometry test and a Barium Test with eating a sandwich. It showed I also have Esophogastric Junction Outflow Obstruction. I get GERD all the time, so unable to drink too much water or milk or food as it just sits in my stomach. I will try exercising more. I am going to NYU hospital in NYC ( top 5 hospital in the country) and Mount Sinai Hospital in NYC in May, as my 4 former Florida Gastroenterolgists only have offered dilation and Botox. I feel I deserve better, so I will continue to search out other opinions, tests and solutions. I recommend you researching other gastroenterologists specializing in motility disorders, even if you have to travel.

Gastroparesis sometimes has a mind of its own. I was diagnosed with it back in 2017 along with several other conditions (duodenal stricture, ulcers, inflammation). The docs wanted to do a partial removal of my stomach and upper duodenum. Thank heavens I'm an RN and questioned it. I went to Mayo Clinic (Phoenix) and the team thought that surgery was a bit premature. I was diagnosed with Crohn's Disease for which I receive infusions of Entyvio every 8 weeks (which is no big deal). Today I feel good and function normally. The gastroparesis, strictures, and ulcers have disappeared. Thank heavens for up to date medicine! Just the same, I do eat slowly and chew well (which everyone would benefit from doing!) and have minimal problems.

You have been through a lot more than I have! Crohn's is known for having the "symptoms" like ulcers and gastroparesis, strictures, and ulcers coming and going. Fortunately I have done very well with Entyvio infusions every 8 weeks at Mayo Clinic and haven't had any recurrences of symptoms since I have been on it. I hope you continue to do well on your infusions and that they permanently help you.
The best to you as well!

Amazing support group with knowledge on FB.