Looking for answers to help with gastroparesis

Hi,its Lori again. I just found your post. I need help!! I do go to Cleveland Clinic,and I know I'm a complicated case with overlapping diseases. I have ben getting worse each year and hope to pick up info that can help me.
Darli can you tell me what Failed Nissen w/gastroparesis and possible Mals would be? Thank You, Lori

Looking for suggestions on diet, alternative treatments, etc that are being used by others. I cannot use the Reglan as it is a bad drug in my opinion. I can tell you that it caused me to go into major depression in 2008

Looking for suggestions on diet, alternative treatments, etc that are being used by others. I cannot use the Reglan as it is a bad drug in my opinion. I can tell you that it caused me to go into major depression in 2008

As I have written before,my gastroparesis was caused by my narcotics. Many medications can do this. Before botox was more popular and my Reglan was discontinued (I had Parkinson-like symptoms), doctors in Philadelphia wanted nto place a pacemaker in my stomach. A lawyer I knew told me about "botox" trials that were starting at another hospital in Philadelphia and his daughter had it...was doing great! Not wanting to travel into the city and so far away...but getting sicker and sicker...the erythromycin wasn't really helping as a prokinetic (making my stomach contract and emptying it)...my local GI doctor told me Hershey Medical Center was starting to use botox to the pyloric sphincter. I had it done January 2014 and still am 80% better! A God send!

Looking for suggestions on diet, alternative treatments, etc that are being used by others. I cannot use the Reglan as it is a bad drug in my opinion. I can tell you that it caused me to go into major depression in 2008

I've had gastroparesis since 2005 and I was able to deal with it until 2 years ago. I don't eat very much to begin with but I kept getting very sick, pneumonia/bronchitis/dehyration etc. My electrolytes kept dropping down so fast causing confusion and making me so sick. Between 2016 & 2017 I was in ER 17 times, with 7 admissions. Gastroparesis reconfirmed again early 2017. I kept telling 2 gastros, my internist, a "specialist" that I paid out of pocket seeking a diagnosis; telling all of them the same thing, I couldn't hold my food down, not even the gastro diet, my stomach hurt all of the time, I was vomiting 4-6X week. That I was trying different foods in small amounts but It didn't matter. I told them I was belching so badly that I couldn't sleep, that I was hiccuping constantly that hurt. The hospital, along with these doctors all ran labs, labs all positive for dehydration and electrolytes. Stopped going to doctors & ER. Sick & tired, literally. Have been bedridden over 2 years. Finally, after 4 months, my husband insisted on taking me to a clinic outside hospital system. The clinic had access to all my records. PA diagnosed me within 15 minutes - severe malnutrition due to gastroparesis. Saw a new Gastroenterologist, tested me, gave me hope but I was unable to take Domperidone. He said I was so sick that he had to send me to Tampa. I'm seeing another Gastroenterologist on March 23 & a surgeon on March 27. I am scared. I am so sick, I have no energy. The pain is unbearable. I am being told I need surgery. Does anyone have any advice to give me? I'm on a liquid diet and drinking Pedialyte but I'm vomiting that presently also. Thank you so much. Donna

Looking for suggestions on diet, alternative treatments, etc that are being used by others. I cannot use the Reglan as it is a bad drug in my opinion. I can tell you that it caused me to go into major depression in 2008

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

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

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.