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

[HFHSm.D.-Gastro-rf]

Dear Sheila,
The inability to belch is not a result of the gastroparesis but is actually a consequence of the Nissen fundoplication.  Almost everybody who has a fundoplication complains of the inability to belch or to vomit.  The early satiety and bloating, however, may be related to gastroparesis.  I suggest that you discuss with your doctor the benefits/risks of increasing your Reglan dosage to 19 mg four times per day.  Another option is the use of cisapride, another prokinetc agent.  

You may wish to look up gastroparesis through the medline search in the National Library of medicine.

[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

[jan]

I have been diagnosed with gastroparesis also, but I don't have the exact symptoms as do most other people; I feel better after eating and have gained weight.  That is something I can't find info about.  I am not diabetic and have been treated for ulcers.  The gastr emptying test confirmed the disorder but I seem unable to find much on this except as it relates to diabetes. I am very interested in finding info on why I have gained so much weight.

[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

[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

[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

[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.

[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

[Brandon]

I am only 24 yrs old asian suffering from gastroparesis for 9 months.  I've been to Johns Hopkins about 1 month ago and was supposed to go for one of those experimental drug study but never got a call from them.  I have bought domperidone from oversees and been taking for awhile w/ a little improvement.

today i went for the ultimate alternative treatment.  (i saw several acupucturists before)  I received qi gong treatment.  A qi gong healer examines your body and opens the blocked qi in your body w/o touching.  He just sits beside me like doing nothing. The weirdest moment was when he told me if i have hurt my right wrist and right knee b/c there was blocked qi.  guess what.  I hurt my right wrist by arm wrestling and right knee by auto accident.  i know there are skeptical ppl out there (maybe i am one of you too). but i am going for the 2nd treatment on fri. wish me luck.  anyone interested in this treatment or want to be informed about my condition, email me at ***@****.

[bill]

Juli

I am sorry to hear about your husband, especially having these problems at 28. I am 36 and I thought I was just getting old. Sounds silly but the heavy stress these days, especially on young adults is incredible. Proving yourself at work, kids and just dealing with day to day situations, driving, bills, doctors appiontments. I went to a specialist for a year and you remember all the tests and medication I took. I still have my problems and am still looking for answers. Doctors though it was stress, but I took paxil and celexa. They seemed to help a little in a way I cannot decribe, but these are very unpleasant medications, I stopped taking them. I think stress may have helped to form this condition, but I need help. I don't have all of the symtoms your husband has, but everyday is a fight. I wish I could do more but right now I don't know what to do. I will keep searching, and I if I find something I will post.

Take care,

Bill
  

[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 (***@****)

[Lorna]

Hi my name is Lorna and I too have Gastroparesis, I was told after vomiting for 12 months, had my gall bladder out and  a division of adhesions that oppps!! it was not the gall bladder or adhesion, but was Gastroparesis that was causing me problems.

I have been on Prepulsid 20mg 3 times a day, which has stopped the vomiting, but I too seem to be puting on a lot of weight and I have also had my large bowel removed, and I'm still am very comstipated. I take lots of stool softeners and other laxatives but still I end up blocked.

I get small bowel obstructions every 2 or 3 months, which I end up in hospital for about a week on IV fluids, they just don't know what to do...

I'm truly sick of being sick.  I can sympathise with you all as I know bad this disease is..

I would love to hear from anyone who has the same type of problems as I do..

[courtney]

I think I may have gastropresis from reading the symptoms.  I have had upper and lower GI studies but have been unable to hold down the barium and it appears that the barium was not leaving my stomach in the right amount of time.  I had a stomach emptying test and after the 90 minutes my stomach was still full.  I'm hungry but I can't eat without my stomach hurting - if I eat too much I get sick.  I am on prolosec and an anxiety medication.   I'm not one bit better after two months.  I'm off work and feel helpless.

[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.

[Sheila]

Brandon     What is your e-mail address. It does not show up on the forum unless you write it.  I'm interested in hearing how you are doing it and who your doctor is. Please e-mail me at ***@****    Sheila

[Pat]

I was diagnosed with gastroparesis a couple of months ago.  My stomach hadn't emptied after 14 hours.  I have continual URQ pain. However - I had observed that the situation, including GERD, first became severe about a month after starting Allegra-D for allergies.  It got continually worse until I woke up aspirating from the GERD and finally went to the Dr.  Having stopped Allegra-D, and begun taking Prevacid on an intermittent basis, the GERD has all but gone away, and the motility has improved.  Endoscopy in 2 days - we'll see.  Also interested in suggestions for diet changes, alternative medicine, please email me at ***@****

[Mary]

Brandon:
Tell us more about this treatment you are on.  We could use some help as the doctors offer little hope.

[sue]

Brandon What is your e-mail address. I'm interested in hearing how you are doing it and who your doctor is. Please e-mail me at ***@****.

[Brandon]

Hi.

My email address is ***@****
It's Qi-Gong treatment.  I think you can find some info in the internet.  There are great and very poor (or fake) qigong masters who perform it.  Well...I know many ppl are skeptical about it but it is working for me.  (much better than acupucture treament)

[carissa]

I am a 22 year old college senior who has been suffering from
idiopathic gastroparesis for 6 years.  Ever since I first got
sick I have had mild problems with reflux, regurgitation, and
burping food up hours after eating, along with the normal nausea,
early satiety, and bloating.  Recently the reflux has gotten out
of control and I am regurgitating food and bile up anywhere from
half an hour after eating up to 14 hours later, and that's only
eating very small portions.  I was recently in the ER with
dehydration and low potassium because I can't even keep liquids
down.  Even very soft foods that I can normally handle pretty well
with gastroparesis are coming back up. I can't keep anything down
and am very sick.  I have been on domperidone for five years, and
cannot take propulsid, reglan, or e-mycin because of a heart problem
and I have gone into cardiac arrest six times and those drugs make
it worse.  I was on a J-tube for two years but they had to take it out
because I was in so much pain from it.  I have also been on TPN in the
past. (I've been through about everything)Last week at the hospital,
my doctor started me on Prilosec for the reflux and I thought it
was helping at first, but now my problems are getting worse again.
I'm concerned because I can't keep stuff down and when my potassium
gets low it also increases my risk of going into cardiac arrest.  I
am extremely limited as to what drugs I can take because of my
heart problem.  I'm very distressed that this medication is not
helping like it is supposed to.  Does anyone else with gastroparesis
have problems with severe regurgitation of bile and food for hours
after eating, and if so, what helps?

Please e-mail me at ***@****.  I would also love to
communicate with anyone else with gastroparesis.  

Thanks.

[Beth]

I was also just recently diagnosed with gastroparesis.  I was diagnosed with GERD five years ago and am only 22.  Four months ago I had my gallbladder removed because it too did not want to empty.  I am currently on 20 mg of Propulsid four times a day and 10 mg of Reglan at lunch time and Prevacid for the GERD.  I'm still having symptoms and like you Jan, have also gained weight. I wonder if it'll ever get better.  But it's nice to know I'm not the only one.

[Brandon]

You are reading very important message!!!

I have been suffering from gastroparesis for one year.  I was taking Reglan,Erythromycin,Prilosec,Domperidone,etc.  However, since I received Qi gong treatment,I have been off all medications and healed about 90 %.  His office is in the northern virginia.  You can contact him at [phone] or [phone].  Tell him that you have a stomach problem and how long you had this disease.  and if you want to talk to me, ask him if Brandon is there.

Qi Gong Center/Quantum FAFA
4231 Markham Street #219
Annandale, VA 22003

[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

[connie]

Have had GASTROPARESIS for over 5 years and am looking to converse with anyone who would trade information.  Have had
stomach pacemaker implanted,sub-total colectomy and still
have problems.  Have been reading horror stories on internet
and would like to let people know that there is a support
group and also can be started in your area.  ***@****

[ARLENE]

This is in response to Mary's posting of 10/27/99.  I have recently begun to suffer from gastroparesis and believe my condition is directly linked to my hormones.  (Basically, I get sick about two days before my period and the last time landed me in the hospital for about a week.)  Please post any info. you have on the study you participated in or any other info. on the gastroparesis-hormone connection.  Any information would be greatly appreciated.

[Alison]

I am 36 with Gastroparesis and have been on cisapride and now switching to Domperidone.  

In terms of natural alternatives, I have found some significant improvement with papaya enzymes,  as well as activated charcoal when an acute episode hits (this also seem to help with constipation and bloating). Ginger also helps with the nausea.

I also have esphogeal reflux which has been helped significantly by the prescription medication Losec.

[Julie]

Hi all!  My heart goes out to you all!  Heavy sigh.  I have gastroparesis, colonic inertia, PVC's (heart palpiations), and lots of ANXIETY!  You are all in my thoughts and prayers.  I am 36, live in WI, am married with a child.  Would like to hear from you rw-***@****

[SarahStof]

I am 43 years old and have been diagnosed with Gastroparesis about 6 months ago. Always feel nauseous and vomit every 10 days or so. Even when I am not vomiting I feel terrible and extremely tired. I am on Reglan and Domperidone, neither of which seem to be helping. It is extremely frustrating and depressing. I have lost weight and do not feel like eating. Any foods seem to work well for anyone out there?

[kate2383]

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