Anyone diagnosed with Gastroparesis?

Posted by jlfisher56 @jlfisher56, May 7, 2017

I have had problems similar to so many GI people. The swallowing problems (food stuck in the throat, bloating, nausea, feeling like choking, "fullness" for hours). Finally after many upper and lower scopes ( have 18 cm colon left and function 80% well when cervical neck is well), a small hiatal hernia, numerous different PPI's for stomach changes, reflux, etc. and now on Nexium, the finding out the main problem 6 years ago was gastroparesis caused by a pain medication. Instead of a pacemaker, I tried a "newly" approved drug for the pyloric muscle of the lower stomach, botox, placed in 3 places to keep the muscle open a little so food could continually be released into the small intestine. The erythromycin in a low dose is a prokinetic, making the nerves contract the stomach muscles but, wasn't working. Still use 4x/day. This way no food collected in the stomach being able to "rot" causing sepsis, and decreased daily nausea and vomiting. I still can only eat small amounts and is more liquid or soft medicine/foods. My appetite isn't the best. I often have reflux, bloating, constipation and hoarseness. But it has been 3 yrs since botox to my stomach and it is working. I take my blessing where I can. I hope this helpe others.
Also, my diet had to change to rapidly digesting foods like white bread and not the "good" eating I was doing like whole wheat or 21 grain bread ( was laying on my stomach for hours), plus many vegetables and also many raw vegetables...a no no.
My daughter is going through so much of this and is an RN. Has Barrett's esophagitis, hiatal hernia, dysplasia, leaky gut syndrome i.e. and awaiting biopsies. Constant n/v, bloating,hoarseness, food in the throat like you in the chat.She is also an RN. On many "new" meds again.
It really can get to you especially when you work and have a very busy life like she does.
My best to all. Hope I could help someone.I understand your frustrations. It is wonderful having an understanding doctor that listens!

Joan

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@brendaharvey

The Pyloroplasty has relieved my constant cramping. I suffered for over 3 years.
Has relieved my constipation also. I am eating more foods now. I can eat before going to bed. I have not had meats or raw veggies or fruits. I will see a new Gastroenterologist on Feb 13 who was recommended by my surgeon to lead me along the path to adding foods. I was on liquids for weeks following the surgical procedure. The relief from my constant pain has just given me a new life!!

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Hi Brenda:

I just wanted to follow up with you and see how you are doing now. This is Denise - I am scheduled to have the pyloroplasty procedure at the end of the year.... I know you said your pain is gone - however now - several months later - can you eat everything or are you still limited? if you cannot eat everything can you give me an idea of what you can eat now that you could not eat prior... Also what about volume - are you still limited with the volume you can eat? i can only eat less than a "child's portion" right now otherwise I have extreme pain and discomfort..

Also - you said you were sore for about 3 weeks after the surgery - did you have laparoscopic surgery or robotic surgery??

Another thing I was a bit concerned about - if the food leaves your stomach super fast now (since they pretty much "destroy" the valve at the bottom of the stomach - are you constantly hungry??

Thanks
Denise

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I have struggled with digestive problems forever. I have had several colonoscopies and endoscopy’s. Always negative for polyps but I was diagnosed with IBS. I still have problems that gone undiagnosed. I was just doing some research and believe I have come across my problem? Undiagnos gastroparesis?
Can anyone enlighten me on this mystery?

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It know it has been years since you posted this, but I'm curious if vagus nerve disfunction or damage was finally discovered as the cause of all of this.

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@catlove30

I have struggled with digestive problems forever. I have had several colonoscopies and endoscopy’s. Always negative for polyps but I was diagnosed with IBS. I still have problems that gone undiagnosed. I was just doing some research and believe I have come across my problem? Undiagnos gastroparesis?
Can anyone enlighten me on this mystery?

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ONLY way to get a firm diagnosis of this is a gastric emptying study.
what are your symptoms?

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@catlove30

I have struggled with digestive problems forever. I have had several colonoscopies and endoscopy’s. Always negative for polyps but I was diagnosed with IBS. I still have problems that gone undiagnosed. I was just doing some research and believe I have come across my problem? Undiagnos gastroparesis?
Can anyone enlighten me on this mystery?

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Symptoms can vary from person to person but can include a full feeling after a small amount of food to nausea and vomiting to trouble swallowing as well as constipation or diarrhea, among other things. It took me several ER trips before somebody had sense enough to admit me for failure to thrive and ordered X-rays, a CT scan, an MRI, a gastric emptying study, and an endoscopy and colonoscopy. I went on a special gastric diet with low fiber and small meals, gradually increasing intake and becoming more comfortable after a year. Hope you can find a doc willing to listen to your concerns and follow up appropriately and/or refer you to a GI doctor. Best of luck in finding a diagnosis so you can better manage whatever is going on.

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@catlove30

I have struggled with digestive problems forever. I have had several colonoscopies and endoscopy’s. Always negative for polyps but I was diagnosed with IBS. I still have problems that gone undiagnosed. I was just doing some research and believe I have come across my problem? Undiagnos gastroparesis?
Can anyone enlighten me on this mystery?

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I would like all of the latest information

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@pittcrew2020

I would like all of the latest information

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I have gastroparesis as a result of damage to the vagus nerve during hiatal hernia repair surgery (Nissen Fundoplication). The wrap has slipped and I have another hiatal hernia and Barretts esophagus. I follow a very low fiber diet, no raw fruit or vegetables and I avoid some cooked vegetables that tend to be fibrous. The drug Zolfran helps when the pain just doesn’t go away. I don’t vomit because I can’t vomit. Sometimes it feels as though food just stays in my stomach and rots! Living with gastroparesis is a challenge! The International Foundation for Gastrointestinal Disorders has a lot of helpful information. Check their website, IFFGD.

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@catlove30

I have struggled with digestive problems forever. I have had several colonoscopies and endoscopy’s. Always negative for polyps but I was diagnosed with IBS. I still have problems that gone undiagnosed. I was just doing some research and believe I have come across my problem? Undiagnos gastroparesis?
Can anyone enlighten me on this mystery?

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I FOR SURE FEEL THAT MY HERNIA SURGERY HAS CAUSED MY ISSUES ..THAT I HAVE TODAY.....

AND I WOULD SO SO LOVE TO KNOW THAT MY FEELINGS ARE RIGHT??? THANKS FOR YOU INFO..

STAY SAFE....

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@peck1944

I have gastroparesis as a result of damage to the vagus nerve during hiatal hernia repair surgery (Nissen Fundoplication). The wrap has slipped and I have another hiatal hernia and Barretts esophagus. I follow a very low fiber diet, no raw fruit or vegetables and I avoid some cooked vegetables that tend to be fibrous. The drug Zolfran helps when the pain just doesn’t go away. I don’t vomit because I can’t vomit. Sometimes it feels as though food just stays in my stomach and rots! Living with gastroparesis is a challenge! The International Foundation for Gastrointestinal Disorders has a lot of helpful information. Check their website, IFFGD.

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I also have gastroparesis as a result of damage to the vagus nerve during hiatal hernia repair.
In addition I have immediately diarrhea and afraid to leave the house. Been to two different GI Doctors and both said its a separate problem from gastroparesis. I’m at my wits end.

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@jacque6977

Has anyone had experience with using the drug Domperidone for chronic nausea?

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I get phenergan in a gel that I rub between my wrists. It's a life saver!

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