Gastroparesis

[gooberpea]

Hi
I'm a 40 year old who has just been diagnosed this year with idiopathic gastroparesis, after 5 years of gradually worsening GERD.  In Feb. this year I had a nissan fundalplication for the GERD. After that I had a bloating problem. The doctors finally diagnosed gastroparesis after several stomach emptying studies. The last one showed that after 4 hours I still had 42% of the meal in my stomach. I have tried propulsid, but it causes me to have too many arrhythmias.  I then tried erythromycin for 2 months but even in low doses it caused too much irritation and discomfort.  I am presently on reglan 5mg ac and hs. This seems to be working fine.  I still cannot burp since surgery, one Dr thought this is a problem the other says it isn't. I still have some problems with early satiety and bloating. My questions are:  will the gastroparesis get better or worse? and where can I find more information on the disease?  I have tried NORD and APHS.  Nord had a little info. Do you know when they will approve Domperidone?
Thanks  Sheila

[bill]

I HAVE THE SAME PROBLEM IT SEEMS. I HAVE SEVERE GAS RETENTION IN MY STOMACH, WHEN I EAT AND DRINK, AND IT WILL LAST FOR HOURS. I ALSO HAVE SOME OTHER SYMPTOMS. HOT FLASHS WHEN I EAT, AND WHEN I GET HUNGRY. SO HOT, I SWEAT PROFUSELY FOR A GOOD 15 MINUTES. I'M IN SALES AND I PREFER NOT TO HAVE LUNCHES WITH CLIENTS. I ALSO HAVE MILD SHAKING AND I AM FATIGUED OFTEN. I EAT SMALL MEALS, BUT HAVE NOT LOST WEIGHT. I HAD AN ENDOSCOPY, COLONOSCOPY, UPPER GI, SONIGRAM AND I HAVE BEEN ON THREE DIFFERENT MEDICATIONS PROPULSID, PRILOSEC AND ANOTHER I FORGOT. DR. FOUND NOTHING AND MEDICATION DID NOT WORK. THEY THOUGHT IT WAS STRESS AND I WENT ON PAXIL. THAT WAS NOT PLEASANT. I AM STILL HAVING THE SAME SYMPTOMS. ANY IDEAS. PLEASE?

[Mary]

I am on the domperidone and have been for a few years now.  I am interested to find out from anyone who has been on domperidone if you are having any symptoms such as irregularity or stopped menstrual cycles, low estrogen levels, urinary symptoms, dryness of the eyes, fatigue, muscle aches/soreness.

[Sheila]

The surgery I had was not for the gastroparesis.  It was for the reflux problem. My reflux was so bad I could not bend over without food or liquids coming up into my esophagus or mouth.  I had several episodes of ulcers in my esophagus and stomach. The surgery is where they wrap the top part of the stomach around the esophagus to tighten the sphincter muscle.  I had a complete wrap so now I cannot belch or throw up. That has caused the bloating to be worse. That was when they started to suspect the gastroparesis and started the testing.  I ended up having 3 gastric emtying studies.  The first was 1 hour that came out T 1/2 144. The second was a 4 hour study and that came out that 42% of the meal was still in my stomach after 4 hrs instead of the normal 2-3%. The third was a 4hr with reglan. that came out normal. I am presently on 5mg of reglan before meals and at bedtime. I tried 10mg but that made me too sleepy.  It seems to help me to go back to a liquid diet once a week, or once every 2 weeks. It is good to hear from others with the disease and hear what is working.
Thanks  Sheila

[Polly]

I too was diagnosed with gastroparesis in April of this year. I am 52 and started having several medical problems in 1993 and finally diagnosed in 1995 with SLE.  To begin with I have Systemic Lupus and Discoid Lupus which basically controls my life and gives me lots of problems since it  can affect all of the major organs, etc.  I was scheduled for gallbladder surgery after the normal complaints of pain, nausea and some vomiting.  Hida Scan showed 32% ejection and thickening walls, along with infection but no stones. Before continuing with the gallbladder surgery, the surgeon decided to do an esophagogast roduodenoscopy which showed undigested food in my stomach which shouldn't have been there.  I was then scheduled for the gastric stomach emptying scan which showed no gastric emptying during a one hour period and the computer-generated T 1/2 emptying time equaled 514 minutes which is very abnormal, according to the report.  Gallbladder surgery was cancelled and  I was put on Propulsid which helps very little.  I'm glad I finally found this info and comments from other patients.  I'm going to ask my doctor about the Domperidone, which I haven't heard of.  I'll be checking back in for additional comments and hopefully more information.  My
best regards to all of you.  Thanks, Polly

[Mary]

I am 38 years old and I too have idiopathic gastroparesis, symptomatic since 1990, with
diagnosis in 1994. Gastric emptying was markedly delayd at 4 and 1/2 hours (normal 30 minutes).  I have had repeat studies along with specialized blood tests to look for collagen vascular causes as well as motility studies.  They have tried Reglan, Erythromycin, Propulsid.  I also participated in a study to determine if menstrual cycles played a role whereby my cycles were stopped with the administration of Lupron injections monthly for a few months.  Symptoms seemed somewhat improved during this time.  So, it was thought that the increase in progesterone just before menses was key in causing an increase in the intensity of gastric symptoms (abdominal bloating & swelling, belching, nausea, vomiting, constipation, abdominal pain, weight loss).  I was then placed on a compassionate need study with domperidone and have been on that for about 4 years now.  Symptoms are much improved on the domperidone but are still there especially the early satiety and the constipation.  It is thought that I have not only stomach but small bowel and colon involvement.  Tell me more about the surgical procedure done for you and where you had it done.  Do you also have significant problems with chronic constipation and if so, what do you take?  I have been on osmotic laxatives chronically from the beginning.

[Carol]

Mary:

I have the same symtoms as you do and am on Domperidone 3 x daily. I have severe constipation for which my doctor has had me on Milk of Mag, and also I feel it isn;t just my stomach either but also the small and large intestine. Feel free to e-mail me at ***@****. I also suffer early satiety despite the fact I take the Domperidone and a lot of nausea.
Carol