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

[Shar190]

A related discussion, fundoplication,gastroparesis, hiatal hernia surgery or not was started.

[jennifer]

Dear Sheila,

As I looked throught the messages,  I was suprised to see no one mention Papaya and Bromelain enzymes.

  This is going to sound a bit strange but I have a 12yr Rottweiler that was on Reglan for 4 years.  She was having great discomfort with bloating and vomiting undigested food even on the Reglan and was showing sighs of dementia  ( not a good thing in Rotties!).   I was working at a Pharmacy at that time and the Pharmacist asked if we had ever tried papaya enzymes.

With- in a weeks time  the dog was off the Reglan and florishing. After time her dementia went away and she is a completely new dog.  We are going on 1 1/2 years on this regiment and even her vet is now recommending this treatment.

Pleas do not think that I am down playing the seriousness of your illnesses or that I am comparing anyone here with a dog,  but it sounds like it would be worth trying!  

Good Luck
Jennifer

[Brandon]

I am beating gastroparesis.

no medications!!!!!!!!!

I have been on Prilosec 40mg and domperidone.
I am not taking them and will never again!!!!!!!
Great, isn't it?

People who want to have a normal life again....
or interested in this treatment, email me.

p.s. medical doctors fear this doctor and he is for real.

[Jeannine]

Hello to everyone,

I am 29 and have had gastroparesis since I had my
gallbladder/appendix & adhesions removed
in Feb. of 98. I have found that propulsid
does not really help my stomach but helps
with constipation a little. I was on Domperidone
for about a year,having to increase the dose
to 30mg 3x a day. I had to discontinue it due
to lactation and irregular menstural cycles.
I did see some improvement of symptoms for a while.
I have found Zofran to be a great help with
nausea, unfortunatley it causes severe constipation
for me and then my stomach gets worse.
Ive found massage to be helpfull for my general
well being.

I have some questions...for anyone:
When you get a cold or flu does your
stomach get worse?

Anybody out there get gastroparesis after
gallbladder or appendix surgery?
I would also like to suggest a good web site:
www.dailyfutures.com/gastro.html
Im sorry to hear of so many people suffering
I hope we all get better soon!
To all...hang in there!
Jeannine (***@****)

[Juli]

In response to everyone, Gastroparesis is a horrible disease.  My husband was diagnosed with severe idiopathic gastroparesis and small bowel dismotility.  His symptoms began about five years ago with what we thought at the time was the flu, about four or five times a year for two years.  Slowly over another two years the symptoms increased.  The vomitting came more and more frequently, once every four months then once every two months and for a while it occured once a month with hospital stays for up to ten days each episode.  After his gall bladder was removed and the symptoms continued, if not got worse he was referred to Johns Hopkins Hospital.  It took about ten doctors, many referrals and thousands of dollars before we were sent the the Bayview Medical Center, a subsidiary of Johns Hopkins in Baltimore (I recommend anyone to them for this problem).  My husband is only 28 years old, he does not have diabetes, no rare disorders, Hopkins has no clue what has caused this.  I understand that this is more common in older women with severe diabetes, but very rare in younger men.  My husband has tried the tube feedings, a horribly slow and uncomfortable process.  The tube fell out during one episode.  His vomitting was so severe that the tube blew out!  He now just has the stomach emptying tube in, which when it works is great.  He only has an episode about every other month.  He has severe mood swings for about two weeks before, this is how I anticipate what is coming.  The whole process is terrible, I have gained a great deal of respect for anyone that suffers any chronic medical condition.  I have learned to dispise the medical profession and insurance companies.  This is an expensive condition to have.  BILL had written that he suffered from episodes of sweating and salivating.  I find this interesting as my husband also has these symptoms.  No one seems to find this annoying symptom worth their trouble, but it causes lack of sleep, discomfort and embarrassment.  This disease has caused the loss of a family owned business.  Nightmares in our daughter, who constantly has worries.  We have found that regalan, propulsid, domperidone (in a trial study) several types of injections (which I give him at home) and prolosec are all essentially worthless after time.  The resistance buildup is fast.  He has created his own treatment.  Eats regularly for 4-6 weeks (but low on red meats, greasy foods, caffeine, etc.).  As symptoms begin the diet becomes more soft (mashed potatoes, stove top, soups, ice cream, pureed foods, etc.)  Once the inevitable happens, and this consists of severe abdominal pain, constipation, vomitting, dehydration, etc.  I give him phennegran injections at home and we are experimenting with pain injections also.  Do not take any standard pain medicine.  Narcotics are a killer on the digestive system.  We have success with Ultram, which is a non narcotic pain medicine.  If the dehydration becomes severe, then it's off to the emergency room for fluids.  At times he will be admitted for a day or two.  Need to stay on liquids for about two weeks after.  This is no solution for any active adult, no nourishment involved.  If there is anyone with these symptoms, please respond.  I have heard of a surgery to bypass the stomach and send food directly to the intestines.  This won't work for my hubby, as his intestines are in the same condition, but it may be a possibility for others.

Hope to hear from someone.  Good luck to all!
JULI

[Carol]

Sheila:

I too had a nissen about 3.5 years ago. I had it taken down because it was done improperly, and I ended up having 4 more operations to fix things. I like you have gastroparesis, and I take Domperidone. It helped in the short term, but I have to say my bosy has built up a resistance to it, and isn'rt doing much to help me now. I have tried all the other meds without luck.

You can search the internet and it will bring you to sites on gastroparesis. If you want to chat more, you can e-mail me at ***@****.
Carol