Hi! Does anyone been diagnosed with gastroparesis. 4shaylyn

Yes, in 2020 with severe Gastroparesis. I had many other digestive disorders prior, so medication was not an option as most of it already stopped working for me, and the disease was already severe so my options were all surgical. I have only gotten the gastric stimulator so far but I feel like I will bee needing a feeding tube in the next year or so. This disease really effected my life and is very hard to manage. I can't eat and function or go out in public, so I have to plan my meals around working, errands, etc. I don't have a social life anymore because I'm exhausted from the day to day basics so I rest on days off. And diet doesn't matter for flares in my case. The stimulator helped me stop throwing up, but I still get the debilitating nausea about 50% of the time. My main problem with the stimulator is only having one person in my area that can program it, so I can't see any other GI specialists.

Can I please ask how they finally decided you had it. Thats what we are thinking my issues are. I’m loosing with also and so exhausted going out is also extremely difficult for me also.

The gastric emptying test was done when I demanded a referal to another doctor, so it was a surgeon who finally ordered it. Which is funny because my GI actually gave me the emptying test 6 years prior and knew it was developing but didn't keep up with monitoring it. He didn't even think to order it when my symptoms were literally the exact words as GP symptoms listed that I used to tell my GI. Extreme nausea all the time, throwing up, very bad bloating, abdominal pain and pressure, constant GERD, you basically feel like you have the worst stomach flu you ever had and it never goes away, and major body changes from malnutrition, and of course the constant fatigue. I lost my weight after the diagnosis. When the symptoms were bad before I retained a ton of water. But when I lost it, it went really fast! 30 lbs in 4-5 weeks. And now, I can drop 15 lbs in a week and a half in a bad flare.
So my experience was just getting the right doctor to actually listen to my symptoms and ordering the test.
It's not evasive, so there's no harm in just getting it done. If you don't have GP, they can rule that out and go from there.

I had the gastric emptying test which was positive. Trying the recommended diet now but still the swelling bloating nausea especially if I bend over is still there. I’m very complicated due to having an ileostomy and and two or three hernias above the midline. I also have Sjogrens and other autoimmune diseases.

Hi dancing1 Yes you are complicated.With my EPi and being on Creon it doesn’t agree with my CIC and gastroparesis. When first diagnosed I was on an antibiotic ( back in 2014- can’t remember) but it didn’t help. Stress is a big trigger and I’m sure with Sjogrens you have some stress. After all these years I still get bloated and nauseous. Very rarely do I vomit.
On SingleCare it recommends green tea for bloat. and nausea. I’m not a tea or coffee person so I will have to try it with some lemon.
One of my old oldest & dearest friends has an ileostomy. It’s odd that you mentioned that. She has been having wicked diarrhea for they can’t figure out why. She’s had it for about 9 years and it’s never happened before. I ‘d like to hear from you. I avoid not. Talking about my medical problems with most people because then they say all kinds of sympathetic things which makes me feel uncomfortable.
Shaylyn 4

Hi @teeposey928 from Shaylyn4.I had an atonic bowel since I was a toddler but no official diagnosis until my mid thirties. That was diagnosed by my taking citrate of magnesium and dulcolax so I would be fairly clean.Then I swallowed a bunch of radio isotopes ( little bits). Then every day I had an x-ray to monitor them. I couldn’t take anything to help me go. I lasted the first time for 12 days and the second for 14 days. Some of the pellets were scattered about and only about 1/3 were in my sigmoid.
My mom had been giving me mineral oil and castor oil( which did nothing) so when I cried with pain she gave me an enema. By my late twenties I had tried every laxative and softener OTC. By then I had wicked GERD and had taken all those EPC meds to help. I finally had a really good talk with my GI and I started on scripts for the GERD and atonic bowel. Now I take Nexium 40 mg. twice/ day. Not much really helped the bowel problem. I would get partially obstructed, go to the ER and they would start an IV put meds in it and give me 2 different kinds of enemas. I would go. I could have spent the night but opted to go home.Around 2012 I began with more bowel problems, nausea and wicked abdominal pain and once with pancreatitis. Was in the hospital 13 days and almost died from complications that were not noticed by the nurses.From then I was in the hospital so many times I forget. I had many ERCP and pancreatitis. X-rays,MRI’s CT didn’t show anything. I was fortunate to have a good GI because he believed me and listened to me even when the ER docs said I was Drug Seeking. He did 2 gastric empty tests and then a special radioactive pellet put in scrambled eggs and then had more x-rays and all demonstrated the same condition—- gastroparesis and severe. I had lost a lot of wgt. Boston docs wanted a stomach tube - - no way - I had TPN in the hospital 3 times and finally in 2017 I was in a nursing home for one mo. on TPN. When I went home I was back to my so call normal wgt. I still have flare-ups usually caused by stress or trying something new to eat. I have not been in a restaurant or eaten their food since 2014. No fresh fruits or vegetables,very little fiber and juices. Recently I’ve tried roasted chicken mashed potatoes and green beans. Hopefully native tomatoes, low fat cheese, chicken and lettuce on Italian bread. Lucky me I have a new GI ( young) the other retired. and he’s even better than the other one. He’s trying to get me off my pain meds ( using amitripyline.( lowest dose possible) and CBD. If I have a question or concern I call in the morning and he will call me before the end of the day and many times from home or on a Sat. or Sun.. I hope I answered your questions. I tend to ramble when someone is asking and is interested ( so many people don’t want to hear about it)!,