Recently diagnosed with Gastroparesis

Posted by lusi0610 @lusi0610, Jul 6, 2024

Hello I’ve recently been diagnosed with Gastroparesis and have a question please. I read about a lot of you with g-tubes and implants. Can I ask how long did it take you to get to that point? I’m very scared to think this happens to most at some point.

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Profile picture for shaylyn4 @shaylyn4

I was diagnosed with Atonic Bowel after I had chronic constipation since I was a toddler. I had taken every laxative and softener OTC by my 30’s and finally went to a gastroenterologist. Sinc 2011 I have been in the hospital so many times I can’t keep track of. I am very glad for my doc. He knew something else was wrong and kept looking. I was diagnosed with gastroparesis in 2014. I need a special diet and I need to take Miralax ( one scoop 2-3 times a day to help me be somewhat regular.Thanks 4Shaylyn God Bless

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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.

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Profile picture for shaylyn4 @shaylyn4

I was diagnosed with Atonic Bowel after I had chronic constipation since I was a toddler. I had taken every laxative and softener OTC by my 30’s and finally went to a gastroenterologist. Sinc 2011 I have been in the hospital so many times I can’t keep track of. I am very glad for my doc. He knew something else was wrong and kept looking. I was diagnosed with gastroparesis in 2014. I need a special diet and I need to take Miralax ( one scoop 2-3 times a day to help me be somewhat regular.Thanks 4Shaylyn God Bless

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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

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Profile picture for dancing1 @dancing1

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.

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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)!,

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Profile picture for palermo1 @palermo1

I have gastroparesis but mild form, Dr put me on donperidone,and that really helps I was scared to eat when I first got diagnosed, 3 months ago, but now I try different foods, and see how it goes, and most of the time I feel fine, I got something, that helps with nausea, but I have used maybe 3 pills, so diet is key if there's a food that caused trigger don't eat it anymore. Feeding tube is for very severe cases is what my Dr said.

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Hello I was diagnose on 17 of July 2024, two weeks ago, My doctor recommended donperidone too. How do you get it? From what I know it is sold out of US. Any help would be appreciated.

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Profile picture for 001sarahsantana @001sarahsantana

Hello I was diagnose on 17 of July 2024, two weeks ago, My doctor recommended donperidone too. How do you get it? From what I know it is sold out of US. Any help would be appreciated.

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Hello @001sarahsantana and welcome to Mayo Connect. The medication you mentioned is medication that needs to be prescribed by a doctor. Here is some information about it from the Drugs.com website,
https://www.drugs.com/domperidone.html
Did your doctor give you a prescription for this medication? Do you live outside of the U.S.?

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Profile picture for Teresa, Volunteer Mentor @hopeful33250

Hello @001sarahsantana and welcome to Mayo Connect. The medication you mentioned is medication that needs to be prescribed by a doctor. Here is some information about it from the Drugs.com website,
https://www.drugs.com/domperidone.html
Did your doctor give you a prescription for this medication? Do you live outside of the U.S.?

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I live in U.S, he recommended it but did not give me a prescription is there a way to buy it in US with a prescription? I believe I would have to file a form to the US FDA to be approved for what I know. But I wonder if there is a drugstore already doing it.

Thanks,

Sarah

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Profile picture for 001sarahsantana @001sarahsantana

I live in U.S, he recommended it but did not give me a prescription is there a way to buy it in US with a prescription? I believe I would have to file a form to the US FDA to be approved for what I know. But I wonder if there is a drugstore already doing it.

Thanks,

Sarah

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Since it is a medication that your doctor suggested, @001sarahsantana, it might be wise to contact the doctor's office and ask if they know how to obtain this medication. Perhaps they can give you some guidance,

I would enjoy hearing from you again. Will you post again and let me know how you are doing?

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Profile picture for 001sarahsantana @001sarahsantana

Hello I was diagnose on 17 of July 2024, two weeks ago, My doctor recommended donperidone too. How do you get it? From what I know it is sold out of US. Any help would be appreciated.

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Hello You can order it online from Canada Drug . I did a few weeks ago and it went very smoothly BE sure to have your Rx from a GI. doc ready to upload, along with your ID
Choose express shipping to get it with 1 week

Good luck!

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Profile picture for bkatz43 @bkatz43

Hello You can order it online from Canada Drug . I did a few weeks ago and it went very smoothly BE sure to have your Rx from a GI. doc ready to upload, along with your ID
Choose express shipping to get it with 1 week

Good luck!

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Thank you for the information

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Profile picture for 001sarahsantana @001sarahsantana

Hello I was diagnose on 17 of July 2024, two weeks ago, My doctor recommended donperidone too. How do you get it? From what I know it is sold out of US. Any help would be appreciated.

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My Dr send a prescription to a Canada pharmacy, they called me I paid them after a long month it got here so for refills make sure you order in advance, your Dr needs to send script to the Canadian pharmacy, you can't get it a a normal pharmacy

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