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montgomery41
@montgomery41

Posts: 12
Joined: Jan 20, 2018

Please, I need advice r/t my Gastroparesis and my Vagus Nerve Damage

Posted by @montgomery41, Sun, Aug 26 6:11pm

Hi everyone! I follow this Digestive thread but I lurk most of the time and I apologize. I apologize, this may be a little long. If anyone is going through this and have any insight please share your thoughts/comments. I'm 41 y/o. I've had GP and the Vagus Nerve Damage for several years now. Anything I put in my mouth, food and/or fluids I end of vomiting the majority of the time. I've tried several different medications for the GP but none of them really helped. I had my first EGD with Botox injections back in April of this year which after about 2 weeks it seemed to help with the n/v to where I gained weight. I had my second round of Botox injections this past Thursday so I hope this helps. My GI specialist commented on my EGD results and said there was old food lining my esophagus and stomach and she was unable to remove it to see my abdominal lining. It sounded like the old food was like placque build up from old food. I have had more EGD's performed but none of them showed something like this. I am now to follow a full liquid diet and if that doesn't work then I'm looking at getting another J-tube placed. I also have an appointment with another specialist to talk to me about the gastric pacemaker. My abdomen hurts so bad I'm doubled over all of the time and my GERD is so bad even though I have to sleep in a recliner and not next to my husband the reflux is free flowing up my esophagus and out my mouth and nose causing painful sores in the corners of my mouth and in my nose. I had a Heller Myotomy in 2006, which is where they removed the lower section of my esophagus, which a typical person has a sphincter there to prevent food/reflux from going back up but with that procedure that sphincter does not work. I'm constantly nauseated and vomiting/retching. I don't know how to explain these things to my general primary doctor or the doctors in the ER because they don't have a clue as to what is going on with me. My pain is real and noone wants to address it. I was on a pain regimen but my PCP cut me off cold turkey and refuses to prescribe pain medication to me any longer. Can someone give me some insight on how to plead my case to physicians who aren't that familiar with my conditions?
Thank you so much for reading this.
God bless!
Michelle

REPLY

God bless you @montgomery41 !!! I’m so sorry that you’re going through all of that. I have moderate Gastroparesis so I’m not suffering the way you are. It sounds like your gastroenterologist found a bezoar ( or bezoars) in your stomach. Surely they are going to check again after you’ve been on the liquid diet for a while. And your gastroenterologist should be sharing all of this with your GP. If you don’t think your gastroenterologist is doing everything possible to help you, maybe you need to look for a different one.
Good luck to you!

@montgomery41

This does sound very uncomfortable and I can understand your concern. A second opinion as suggested by @pdilly sounds like a wise decision.

It might be best that your second opinion come from a research oriented health care system like Mayo (clinics in Minnesota, Florida and Arizona) or a medical university in your area. You need to have some good specialists overseeing your condition and your treatment.

Will you post an update on your search for help?

Liked by pdilly

Yes, I will post updates as I have them. Thank you both!!

Hello @montgomery41,

I found some information from Mayo Clinic regarding new treatments (under investigation) for gastroparesis, and though I'd copy relevant points that might interest you:

– One example is a new drug in development called relamorelin. The results of a phase 2 clinical trial found the drug could speed up gastric emptying and reduce vomiting. The drug is not yet approved by the Food and Drug Administration (FDA), but a larger clinical trial is currently underway.
– A number of new therapies are being tried with the help of endoscopy — a slender tube that's threaded down the esophagus. One procedure used endoscopy to place a small tube (stent) where the stomach connects to the small intestine (duodenum) to keep this connection open.
– Gastric electrical stimulation is a surgically implanted device that provides electrical stimulation to stimulate stomach muscles to move food more efficiently. Study results have been mixed. However, the device seems to be most helpful for people with diabetic gastroparesis.
– Gastric pacing also involves a surgically implanted device that stimulates the stomach muscles, but this device tries to more closely mimic normal stomach contractions. Currently, the device is too large and causes discomfort. Gastric pacing devices are only available in clinical trials right now.
https://www.mayoclinic.org/diseases-conditions/gastroparesis/diagnosis-treatment/drc-20355792

The above link also has details about two current Mayo Clinic trials that you may wish to view.

I'd like to reconnect you with @jlfisher56 @kamg @aishia @katmandoo @xcinsanx @harliegirl, as they've discussed similar issues – I hope they will join this conversation and share their thoughts about talking to your doctors.

Liked by kracki

@kanaazpereira

Hello @montgomery41,

I found some information from Mayo Clinic regarding new treatments (under investigation) for gastroparesis, and though I'd copy relevant points that might interest you:

– One example is a new drug in development called relamorelin. The results of a phase 2 clinical trial found the drug could speed up gastric emptying and reduce vomiting. The drug is not yet approved by the Food and Drug Administration (FDA), but a larger clinical trial is currently underway.
– A number of new therapies are being tried with the help of endoscopy — a slender tube that's threaded down the esophagus. One procedure used endoscopy to place a small tube (stent) where the stomach connects to the small intestine (duodenum) to keep this connection open.
– Gastric electrical stimulation is a surgically implanted device that provides electrical stimulation to stimulate stomach muscles to move food more efficiently. Study results have been mixed. However, the device seems to be most helpful for people with diabetic gastroparesis.
– Gastric pacing also involves a surgically implanted device that stimulates the stomach muscles, but this device tries to more closely mimic normal stomach contractions. Currently, the device is too large and causes discomfort. Gastric pacing devices are only available in clinical trials right now.
https://www.mayoclinic.org/diseases-conditions/gastroparesis/diagnosis-treatment/drc-20355792

The above link also has details about two current Mayo Clinic trials that you may wish to view.

I'd like to reconnect you with @jlfisher56 @kamg @aishia @katmandoo @xcinsanx @harliegirl, as they've discussed similar issues – I hope they will join this conversation and share their thoughts about talking to your doctors.

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Hi there is this gastric pacing you on about is the pacemaker you talking about or something new

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