Gastroparesis

[Jeannie Maier]

Over the past ten years, I have had a very severe gastric emptying disorder requiring multiple hospitaliztions, multiple procedures, and a large variety of medications.  It appears that there is a partial obstruction in my duodenum that sometimes closes and other times remains open.  When it does close, an attack involving vomiting for approximately 12 hours and severe stomach pains occur.  Finally after dealing with this condition once a month for eight years and becoming frustrated that no one could find a medication that seemed to control this condition, I asked to be but on oral contraceptives since it appeared these attacks occurred once a month right around the time I got my period. While at the time the doctors were skeptical that this would work,  I am now in a prolonged remission.  It has been approximately 2 years since my last attack.  The contraceptives along with the medication, Pepsid appear to have controlled my vacillating hormonal state and condition.  I am thrilled and healthier than I have been in years.  Is there any printed material or research correlating gastro-emptying syndrome to the menstrual cycle?  Can a hormonal disturbance cause gastrointestinal motility disturbances?  And why do the oral
contraceptives work?

[HFHSm.D.-Gastro-rf]

Dear Jeannie,
Hormones can influence gastrointestinal motor function.  Estrogens for example can inhibit muscle contractions.  Therefore, I am not too surprised that you notice fluctuations in symptoms related to your cycle.  I am surprised however, by the extent of the symptom fluctuation.  Be thankful that oral contraceptives work for you.

[Jeannine]

Jeannie,

I have gastroparesis and am very interested in the
condition that causes your duodenum to have episodes
of obstruction. I have heard alot of people claim that
hormonal fluxuations can worsen symptoms of GP and IBS.
There is research being done regarding this. I do know
that Dr.Ken Koch at Penn State Geisenger Hershey,PA has
done some research in this area.I personaly have worsening
of symptoms prior to and during menstration.I have tried
going off the pill and am currently going to resume to see
if it makes a difference.I have also been in touch with
a women who had remission of gastroparesis (she had reoccuring
vomiting episodes for years) after menopause.I am so happy to
hear of someone getting better!!
There is a web site where people exchange info about gastroparesis and I think maby the people who set it up may
be able to share info with you,they have done some research.
I know they would love to hear of another person getting better!
www.dailyfutures.com/gastro.html

Jeannine   ***@****

[paula]

Once a month I always have "attacks" also.  I get severe pain in the middle of my upper back and in my upper abdomen.  I am dounbled over in pain from 30-45 minutes and then I get very nauseaus and either vomit bright yellow, bitter bile or the dry heaves and then I'm fine.  I feel like I've been beat up but I'm not in severe pain.  If it doesn't go away, the circle will start again.  I have been diagnosed with gallstones (had my gallbladder removed but the pain is still here), had a hysterectomy, 1 ovary remaining, (the pain is still here) and recently just had a CT scan and more lab work (nothing showed up again).  I also have hypothyroidism (not sure what kind yet).  What is gastro-paresis?  Could I possible have this?  Thank you and I'm sorry I couldn't answer your question but maybe together we can conquer this debillitating condition.

[Jeannine]

Paula,

Gastroparesis is delayed emptying of food in the stomach.
Food that you eat may sit in your stomach for hours
after you have eaten.Symptoms are early saity(feeling full
after a few bites),nausea,sometimes vomiting,abdominal bloating,
epigastric pain/pressure,GERD.Not all these symptoms have to be present for it to be gastroparesis.Usually if you vomit it is
undigested or partially digested food and bile.Sometimes
constipation is present also.There are a few medical conditions
that can cause gastroparesis(diabetes,thyroid) or it may be caused by a virus
or it can be ideopathic(no known cause).If you check out the internet there is some more detailed info.I hope you feel
better soon! Good Luck!

Jeannine
PS-have they considerd Sphincter of Oddi Dysfunction?

[Pardeep Singh Sidhu]

Sir/Madam,
             I am 24 years persuing my Phd. course. Last year due to unfortunate ingestion of Hcl in my lab i am facing a lot of problems. To begin with, i suffer from unbearable pain in my abdomen all the time. I have 3rd grade damage to my stomach and duodenum. This also led to constriction at the lower end of stomach and beginning of my short intestine. I am afraid that surgery is must in my case. I would like to know surgery aftermaths like any gut leakage, bag out of my stomach etc. Kindly guide me in my case. Can surgery be avoided and balloning done all my life-time. Please guide me.
                                       Thanking you,
                                         Pardeep Sidhu  
My e-mail : ***@****

[stacy]

Other than a few blood tests early in the week I have not been formally diagnosed with anything. All my blood work came back normal as far as liver function, the presence of H. Pylori bacteria in my stomach, my blood sugar is normal, and I am not enemic, however I deal with nausea on a daily basis, and feel fatique and dizziness here and there. I'm starting to be afraid that I am suffering from something very serious. I have been taking some pepcid and about 9 tums a day, and today I have not had much nausea (nock on wood) I am afraid to eat, but today did have a muffin, and at 2pm, I had a small turkey sub. Does anyone know what this could be. I will be seeing my doctor again on monday, but I am very frusterated, and worried about this.

Stacy

[Comment by AJ. March7,2000]

Im in 70s. Fullness after evening meal in stomache area started about 10 years ago. Gradually if heavier meal would feel distress due to distention and take walks and pace but took 8 to 10 hours for relief. Mornings not bad . Three years ago had episodes of sudden epigastric pain and gen. weakness and had to sit for hour or more. Twice during one of these episodes had blood drawn and liver function tests abnormal. Diag. Biliary dyskinesia,tho at first gall stones suspected. No stones found on ultrasounds. However often got pain episodes and liver tests normal.   Past two years those hard pains gone but gastric delay and distention continues almost 11 years now. Always worse p.m.Often cant lay down to sleep till 5am. I have found Ativan in evening seems to decrease distention distress some.In breakfast take measured amount prune juice WITH PULP. This great help with bowel movements and gives me fair day. Anyone got comment. I dont have diabetes.

[to AJ from Jeannine]

AJ,

It sounds like delayed emptying of your stomach.Due to your
age it could be the abdominal arteries that supply blood to your
digestive tract.Id ask a Gastroenterologist about it if your feeling really bad.Also small frequent meals, low fat diet
may help and of course keep the intestines moving!
Good Luck to you,I hope your feeling better soon!

Jeannine

[Carrie Whitfield]

I am 22 years old and have experienced extreme bloating after meals for more than 10 years.  A few years ago, I was diagnosed with gastroparesis.  Tried many medications.  Nothing worked.   Because I am a small person, this condition has caused me to skip meals sometimes nothing to eat for 2 days.  I am very self-conscious about this bloating.  Look about 6 months pregnant after a meal. Is there surgery that can correct this?  I am very miserable.  Please respond.

[carissa]

Hi carrie,

There is no surgery that will correct gastroparesis (I wish it was that simple!!!) There are only medications that can be used to
help with gastric emptying.  Have you tried Reglan, Propulsid (unsafe drug for many people), and e-mycin?  A lot of people have reactions to those,
but you can try Domperidone.  You can only get it from canada because it has not been approved by the FDA yet, but it is probably the safest and most
effective drug for this.  It is not a cure, but it might helpe you out.  I am also 22 and suffering from this for six years, so I know what you're going through.
If you want the name of the pharmacy I use in Canada for Domperidone, feel free to e-mail me at ***@****.  Most insurance companies won't cover it since
it has not been approved in the US.  It's about $150 a month, but you could give it a shot.  It might be worth the money.  Good luck.

[Jancy]

I was diagnosed with 'ideopathic gastroparesis' in '98.  The symptoms started following an accident where I fell about 7ft on my head onto asphalt.  My GI Dr. says he knows of no medical logic between the fall and the condition, although he doesn't say it isn't possible.  I was taking Prilosec and Reglan, with episodes occuring about every other month that required hospitalization.  Nuerological side effects of Reglan prompted a switch to Propulsid.  Lately, I've been avoiding the hospital but
having severe episodes almost every other week.  Phenegrin helps some.  The vomiting and diarea (diarrhea) I could deal with, but this condition robs me of all my faculties.  I wind up curled up in a ball, unable to think, move, sleep or care about anything.
Any thoughts on whether nerve damage somewhere could be an underlying cause??

[Sharon]

I developed this after the flu this year and am still trying to get life back to normal. I am sticking with a diet found when I looked this condition up.As soon as I venture from it problems Could some one tell me do you get better from this? or is there a constant problem. gastro dr said 6month he has seen the shortest to lifetime.Am on Reglan and previcid and would like any helps or suggestions.. This has been going on since the week after christmas and I am eating 6 meals little ones as prescribed
by diet fro www.gicare.com. any help will be appreciated. Sharon

[jeannie]

Jancy -

Do these episodes occur around the time you get your period?  If so, try birth control pills.  Why they work, I still don't know.  But I had similiar episodes to yours and since I started taking the birth control I haven't had one episode (It's been 8 years!).  The doctors feel this is regulating the hormones and controlling the condition.  Let me know if it works.

***@****

[angela]

I HAVE BEEN HAVING SEVERAL PROBLEMS FOR A LONG PERIOD OF TIME NOW. NAUSEA,VOMITING,BLOATEDNESS,WEAK AND TIERD ALL THE TIME. I HAVE SEEN SEVERAL DR OVER THE LAST 8 MOS.I HAD AN ENDOSCOPY TO FIND DAMAGE TO MY ESOPHAGUS,STOMAC,AND SM INTESTINES. I HAVE GASTRIC ULCERS AND EROSIONS THROUGHOUT. THEY ALSO FOUND COLUMNAR CELLS IN MY ESOPHAGUS.(RARE?)FINALLY I SEE A DR WHO ORDERS THE GASTRIC EMPTYING NUCLEAR SCAN.AFTER 167 MIN I STILL HAD 64%OF THE MAX. FOOD STILL IN MY STOMACH(AFTER 64 MINS IT WAS 91% OF THE MAX.) THEN THEY DIAGNOISED ME WITH SEVERE GASTROPARESIS. I AM STUDING INTO THIS,BUT I SEEM VERY DISAPPOINTED THAT THIS COULD BE A LIFELONG FEELING. AND I AM SO MISERABLE.THE BLOATEDNESS FEELS AS IF MY STOMACH WILL EXPLODE.THE ABDOMINAL PAIN,CHEST PAINS...I AM REALLY CONCERNED COULD THIS CAUSE ME A LOT MORE COMPLICATIONS? I AM ONLY 24.NEXT WEEK WE ARE DOING THE EKG SO I CAN START A PERSCRIPTION CALLED PROPULCID.IS THIS SAFE?? WHAT TYPE OF DIETS DO YOU SUGGEST? MY DR SAYS SOFT FOODS, AND LIQUIDS. BUT I AM LIMITED BECAUSE THE DISCOMFORT WITH THE ULCERS AND HIATUS HERNIA.I FEEL FOR ANYONELSE WITH THIS ESPECIALLY IF ITS SEVERE,THER IS NOT A DAY THAT GOES BY THAT IT DOES NOT EFFECT MY LIFE.

[Lynn Pegram-Midlothian, Va]

I was diagnosed last year w/gastroparesis. I have been on propulsid. My first test showed that it took 5/12 hrs for my stomach to empty, then after medication, it went to 2 1/2 hours.Now, a year later, it is taking 8 hours! for my stomach to empty. I am miserable and do not know where else to turn. Please help.

[Cheryl]

I have been diagnosed with severe gastroparsis and gerd.
i was sent to shands hospital in gainesville fla. they did nothing.  i have taken propulsid but was recently taken off of it. i am trying to take reglan i have a terrible time with side effects.i had a gastric emptying test done a few weeks ago while on reglan it showed some improvement but i can not handle the side effects.There have been times that i am in severe pain and have to go to the er for a pain shot. i try eating smaller portions of food. This is not a fun condition to live with. I also have hypothyrodism and have been on medication for 20 years for that.I have had a hysterectomy no ovaries and am on ert. i thinkI would feel good if it wasnt for my stomach. Any suggestion. I am 41 years old gall bladder is gone. What can be done for the severe pain and spasm.

[Linda]

My sister has been diagnosed with gastroparesis recently.  This started after surgery for gall bladder. Could there be a connection?  She also has lupus. Is there a connection. Her doctor has told here there is nothing anyone can do.  She has only one opinion.  There has to be some help out there.  I caught the end of a news cast on the USA radio network today about help for this disease, but didn't hear it all.  Did anyone hear anything on the news about this today?

[Linda]

My sister has been diagnosed with gastroparesis recently.  This started after surgery for gall bladder. Could there be a connection?  She also has lupus. Is there a connection. Her doctor has told here there is nothing anyone can do.  She has only one opinion.  There has to be some help out there.  I caught the end of a news cast on the USA radio network today about help for this disease, but didn't hear it all.  Did anyone hear anything on the news about this today?

[Linda]

My sister has been diagnosed with gastroparesis recently.  This started after surgery for gall bladder. Could there be a connection?  She also has lupus. Is there a connection. Her doctor has told here there is nothing anyone can do.  She has only one opinion.  There has to be some help out there.  I caught the end of a news cast on the USA radio network today about help for this disease, but didn't hear it all.  Did anyone hear anything on the news about this today?

[PATTY]

Thank you...I was beginning to feel that I was the only one with this crazy problem...I am 26yo. and was diagnosed recently with gastropareisis.

I am interested in keeping in touch with someone who is going through or have gone through this horrible problem/disorder/disease.

I just had an emotional breakdown last nite...I can't take it being nauseatious almost all the time,puking, not having an appetite, tired from the medication, and embarassed to go out ANYWHERE because i don't know when or how severe an attack will be...and the fact that there is no cure is not helping...

...I just started taking Reglan, every nite before i go to sleep as prescribed by my dr. I am anxious about taking this because of the possible Nuerological damage that this drug COULD possibly cause..

My Dr. has suggested DomPeridone...but, i am hesitant, because i don't know anything about it. If someone is on it/knows someone or something about it can you please let me know...

Thank you in advance...

[Veronica]

Well, I recently joined the club...yay.  After five years of hell after I got my gallbladder out, I now am on e-myacin (2cc each meal), viokase for digestion of my food since my pancreas stopped creating the enzymes I need, an antispasmodic for the cramping/spasms every time I eat/breathe, Flax Seed oil to keep my bile and pancreatic ducts open after 5 lovely procedures, and an extremely low fat, bland diet where I can't eat red meat or anything with more thatn about 4 grams of fat.  To top it off, I can't lose weight partly because I have no energy and partly because my food still doesn't get digested/processed well because of the stomach dumping problem.  I just started on the E-myacin, so hopefully I will feel better, since my doctor says there's not much more that they can do (except stomach surgery taking out the bottom sphincter).  Anyone hear of anything else that may work?  Reglan sounds horrible.

[Cheryl Anderson]

I left a comment about my gastroparesis but no answer back.I am wondering if anyone knows if I go to an all liquid diet if this will help. I am very depressed over this condition I can eat sometimes and not others.I am on erythromycin prilosec synthroid estrogen axid and other medicine as needed. I have severe spasm at times requiring a pain shot.I have gerd also.Always some sort of gastric problem.Went to university hospital in Gainesville but not any help. I need to know how to deal with this and what will help.      Thanks Cheryl

[Jeannine]

Cheryl,

Hi, I have had ideopathic GP for over 2yrs now and can sympathize
with being depressed/frustrated with it!Have you tried Domperidone yet? It may be worth a try. It is only available in Canada,you can pay for it by credit or "debit" card and have it sent fed-xor regular mail.
I have taken it in the past with some improvement
but developed lactation and had to discontinue it.For the most
part it has little side effects but it can cause lactation.
I would like to suggest a web sit to check out for people with
GP: www.dailyfutures.com/gastro.html it has current info and
suggestions.On this site they have a link to Jackson Gastroenterology which has gastroparesis diets (3 types).
How is the E-myecin working for you? Ive heard they are working
on a motility drug that is a derivative of E-myecin but no
antibacterial effects.Have they re-checked your thyroid status?

I hope you are feeling better soon :)
Jeannine ***@****

[Cheryl Anderson]

To Jeannie,  Yes I tried domperidone I also had problems with Lactating plus it supposedly caused me to have a pitutary tumor so I had to stop that medication.Not sure how the emycin is working yet scared to eat a big meal,My dr told me that a new drug may be out soon   Tha
nks for the web site and info.

[Cheryl Anderson [e-mail]]

Jeannie,
Tried to get on that web site no luck will continue to try. Yes they have retested my thyroid its ok.Iam glad I can talk to someone about this and they know how miserable I am at times.. Thanks       ***@****

[TO PATTY]

Patty,

I have had ideopathic gastroparesis for over 2 years now.
(following laprascopic gallbladder/appendix/adhesion removal)
I took Domperidone for almost 10 mo's. I did
have to gradually increase the dose over time and eventually
did have lactation which lead to me discontinuing it.
Domperidone usually has few if any side effects as it does not
cross the "blood / brain" barrier. This means it does not directly act on the central nervous system so there are less
effects "felt by you".It may be worth a shot to at least try
for a week or so.I found after taking it for a while it did
mellow out the nausea and help my system work better.You may
want to ask to try Zofran, it is really good with nausea.
Its a bit exspensive but you need a break and this may help also.There is a web site you may want to check out:
    www.dailyfutures.com/gastro.html
I can sympathize with the "loosing it" it is very hard to deal
with feeling sick all the time. It may be good to just......
have a good "fit".If you keep it in you'll only feel worse.
Have you been told the cause of the gastroparesis? Sometimes if
the underlying problem is treated the gastroparesis may subside.
If constipation is an issue, keeping that under control may help
also.Please feel free to e-mail me if you have questions,need support or just want to vent to someone who has an idea about
what you are going through physically and psycologically.
Hang in there :)
Jeannine ***@****

PS-Have you checked out the other posts re:gastroparesis & nausea
on the board?
or

[Jeannie Maier]

Dear Patty,

I can relate to you.  I also had many of the same symptoms as you.  My condition started around the age of 18 and lasted until I was around 25.  Once a month I dealt with the severe attacks.  I was first diagnosed my freshman year of college and at that time was hospitalized for 1 month.  Needless to say, I had to withdraw for the semester since I went to school in PA.  All through college I dealt with these attacks once a month trying different medications including domperidone, which didn't work for me.  After college, I got a job teaching fifth grade which I loved.  Unfortunately, these attacks continued and often would occur during the day.  At that point the school would have to find coverage so I could go home.  This lasted for several years.  Luckily, my district was very understanding or I could have lost my job do to absenteeism.  However, I made it through and am now an Assistant Principal in the same district.  THings do get better - believe me.  They need to just find the right medication for you.  What "cured" me was the birth control "pill".  At one point, I was hospitalized and on the verge of a breakdown as well.  I couldn't handle this anymore and kept asking why me - why can't the doctors do something.  At that point, my mom, a nurse, contacted a specialist and informed him of my condition.  He suggested I try taking birth control pills since the attacks occurred often around my period.  The doctors were skeptical, but we gave it a try.  And I haven't had an attack since.  I now feel as if my life is back.  I am not afraid to go out because I might get sick.  I am more confident in myself and happier than I have been in years.  I hope they find the right treatment for you - All I can say is that none of the obvious medications worked for me (reglan, pepsid, domperidone, urecholine etc. )but the "pill" worked exceptionally well.  I hope this information helps.  I know it is hard not to get discouraged or frustrated, but try to keep your spirits up.  I hope this information helps.  Let me know how you're doing.

***@****

[Jacqueline]

Hello all my fellow gastroparesis sufferers. I have quite a story to tell my self. I am 19 years old and have been suffering from this disease since high school. Around my sophmore year in high school I went through a period of horrible nausea and fullness after everything i would eat. After six months of having every test known to man and being told constantly that I must have an eating disorder i was finally diagnosed with gastroparesis. I was put on Propulsid witch didn't help. I was then switched to Reglan. After about a year I went into complete remission. I was perfectly fine for about two years. Recently the symptoms have returned. Again I was put through alot of tests. A scope, a nuclear gallbladder scan, blood tests..etc. The gallbladder scan was abnormal and I had my gallbladder removed but this did not improve my symptoms. I then had a gastric motility study done which showed delayed emptying of the stomach. I am now back on Reglan, hoping that once again I will eventually get better. I am down to 90 pounds and spend my days feeling tired, nauseous and full. I am interested in trying birth control pills as my symptoms do seem fluctuate with my cycle. I would love to correspond with someone who suffers from this disease. I am feeling so alone right now. I'm depressed and sick and tired and just want to feel normal. I would appreciate advice or just someone to share experiences with. my email address is: ***@****  Thanks and good luck to everyone I hope you feel better soon.

[Jolene]

To Jancy
  My three year old son has gastroparises syndrom (syndrome) and a motility problem from birth.  He has never been willing to eat and the doctors just kept saying that he had a behavirol problem.  Even though he barly drank enough to survive.  After about 21/2 they finally sent him to a GI doctor who diagnosed him.  We recently met a doctor through a mutual friend who thought he might be able to help our son so we took him to see him.  He said that there was damage done to his cranium during birth. He is an osteopathic doctor specialzing in cranial treatment and said that our son has a lot of swelling at the base of his head which is always a sign of trama but he feels this is what is causing the stomach problems. I thought that maybe since it started for you after your fall that maybe it is the same for you.  It may be worth a try.  I dont know if your insurance will cover cost because a think it is considered alternative but I know that these kinds of doctors belive in finding out the cause for a problem and not just masking the symptoms.  I would suggest going to someone that is old I have had better luck with the older doctors because I find that they are not so swayed by the insuance companies.  Good luck

[monkeygirl]

hello!

I have been suffering from gastroparesis for six years and have set up a web site giving tips and suggestions on how to feel better from my own experience as well as what other people with this condition have told me.  There is also information on how to get a hold of domperidone, as well as a section where people with this disease can submit their name and e-mail address so that other people with this problem can contact them with questions or suggestion, or you can also contact anyone on the list.  there is also a page of gastroparesis links that will take you to some of the other gastroparesis web sites, including a chat room and message board.  the link is www.monkeygirl.atfreeweb.com

Take Care,
Carissa

[Sarah Chilcutt]

I am 22 years old.  I was diagnosed with gastroparesis when I was 19.  My doctor has been treating me with Propulsid.  Before I began using Propulsid, I was in a great deal of pain.  Treatment with Propulsid has changed my life.  After I began using Propulsid, I could particpate in social activities at college, hold a work study job, and go to college.  Unfortunately, the FDA is taking Propulsid off the market because of deaths associated with its use.  My doctor says these deaths were not caused by Propulsid in and of itself.  Rather, irresponsible general practioners began prescribing it to patients with heart problems,such as heart murmurs.  Propulsid comes with a strong warning against using it with patients with heart murmurs.  My doctor tells me the fatalities also occured because of drug interactions.  Irresponsible doctors who did not stay informed of the drug interactions possible and irresponsible patients wbo did not memorize the medications they were not suppose to take contributed to these deaths, according to my doctor.  

[Sarah Chilcutt]

This letter is to vent my feelings, inform members of the forum, and request replies from anyone having similar problems.
     I am 22 years old.  When I was 19 I was diagnosed with gastroparesis.  My doctor has been treating me with Propulsid for the last three and a half years.  My treatment with Propulsid has been very successful.  Before the Propulsid, I was in a lot of pain.  Now I can participate in activities I could not engage in a few years ago.  Unfortunately, the FDA is taking Propulsid off the market because of fatalities that have occurred with the use of this drug.  It is officially off the market in mid August.  My doctor tells me these fatalities are not due to Propulsid in and of itself.  Rather, they are the result of irresponsible doctors who do not specialize in gastrointestinal problems.  These doctors prescribe Propulsid to patients who have heart probems, such as heart murmurs.  Propulsid comes with a strong warning against use with heart patients.  My doctor says the fatalities are also caused by doctors who prescribe medications that interact with Propulsid and patients who do not make it a point to know what medications they should and should not take with this drug.  The FDA has decided to treat Propulsid as an experimental drug.  Gastointestinal doctors must fill out huge amounts of paper work on each patient using Propulsid (I've seen the paperwork is literally a large book).  My doctor has not decided yet whether he will participate in the "experiment."  At the time of my appointment, my doctor had just received the paper work so I do not know the details of what the FDA wants me to do.  He is angry that he is even expected to do this when Propulsid has proven itself safe and effective with so many of his patients.  Needless to say, I am not happy myself.  I suspect that, if this experiment is like other medical studies have a read, patients will be tested frequently and be expected to fill out paper work themselves, and basically disrupt their lives for this "experiment."  I am not trying to be pessimistic about the FDA's "experiment".  I am being realistic; I have participated in a medical study before.  Why should I have to be an experiment for a medicine that has already proven itself safe and effective for me and other patients?  Propulsid is being pulled off the market because of others irresponbility so the rest of us have to suffer.  I could use Reglan and will probably have to for a while after Propulsid supplies completely run out.  Reglan is more likely to have minor side effects than Propulsid.  There is a small risk that Reglan could cause brain damage which makes muscle spasm so severe you cannot eat.  I am irritated at the FDA.  Is anyone else having these problems?

[WHAT IS GOING ON WITH THIS FORUM????!!!!]

Hi Sarah,

I sympathize with the problem that you are having, and agree that it's irresponsible doctors giving this drug to patients not properly screened for heart problems, or patients who already have heart problems. With so few drugs available to treat this problem as it is, it is maddening. I would not use Reglan as it has many side effects, and I have heard nothing but awful things from others with Gastroparesis who have taken this drug. From what I understand, Reglan crosses the blood/brain barrier which is why there is so many side effects. There is another drug, Domperidone (Motilium), that is not FDA approved for use in the US but Canada and other countries are using it. It has been proven safe and effective with very few side effects (doesn't cross the B/B barrier). What I'm hoping is that maybe the FDA will consider approving Domperidone, with Propulsid being taken off the market it leaves us with so few options. What I would suggest to you is fight this by writing the FDA. Since you're having such good luck with Propulsid, I would fight for it. It's only been a short time since it's been pulled from the market and you can bet the FDA will be getting some mail, hopefully enough to make them reconsider. If you can't get Propulsid at all, fight for Domperidone. We need SOMETHING, and we need to pull together to let these people know just what we deal with in a day. Good luck!

[monkeygirl]

I agree with you on this sarah.  I have been fighting with the FDA and have written my senator and representative as well as Janssen, but I need some help.  There is A LOT of information on my web site about how to go about writing the FDA (addresses, and sample letters, and who to send it to) and Janssen (same info) as well as other places to send it to and senators and representatives who are the most influential with the FDA.  Plus bombarding Dateline with this info might also get us coverage which could help.  Please check out my site if you are interested in fighting for this.  Janssen is about to take domperidone completely out of the US as of October, and quit trying to get it approved.  If they take it out, it may not come back!!! I know who to contact to keep it in the states, but i need as much help as possible.  Please PLEASE PLEASE PLEASE PLEASE check out my web site if you would be willing to help out with this campiagn.  I have almost all the information you could possibly need on this site.  The address is www.monkeygirl.atfreeweb.com

Thanks!
Carissa

[WHAT IS GOING ON WITH THIS FORUM????!!!!]

Hi Carissa,

You've got my help! I'm disgusted and don't understand why they won't approve Domperidone, what harm will it do? It's safer than Reglan! The FDA spends more time on Viagra and the like. I'm going to raise hell 'till October.  

I've been to your website and you've done an excellent job, so much info on one site cuts down my time spent surfing. Like one stop shopping at Wal-mart! Enjoyed your artwork and the little icons too. =o) Thank you for sharing your story and knowledge. Take care!

[monkeygirl]

Hi Christine...

thanks for the help with this campaign...sorry for calling you sara in my post...I read who you were writing to!!!  I have written letters, and so have a few other people that I am working with, but not enough people are doing it to be very influential.  That's one reason why I created this site.  To get this info out.  Domperidone is the only drug for this that I can take.

Thanks again for the help.  I'm going to keep doing stuff too, but my senator and representative need the support of others.

Carissa

[Sheryl Tevebaugh]

Dear Jeannie,
I was diagnosed with gastroparesis several years ago.  The one thing that the doctors don't seem to pick up on as a problem is that I have pain that is asssociated with my bakc and when my bakc is sore and the muscles contract it seems to make my stomach sore and it also reacts with spasms and severe pain.  I just recently went in the the Er during an attack and they said that I had pancreatitis which I believe was caused by the spasms of the stomach.  Is there anyone else who has similar problems with skeletal muscle tightness which interferes with the stomach?

Thanks for your answer.

[Kristin Buckingham]

Oh my goodness right now I am praying that Birth control pills will change my life!!!  I am 27 and have had this nightmare(gastroparesis) for almost two years.  It's funny but it is almost comforting to hear that others have had breakdowns over this.  I follow the Jackson site diet religiously and get domperidone through a study but eventually I will go to Canada.  Please continue to share sucess on this website.  It is so wonderful to hear from people who can understand.  Unlike those who are annoyed because you are obsessed with your diet. Anyone who needs help can E-mail me at ***@****

[Susan]

I have a 20 year old son suffering from these same symptoms, and all the replies I have read are from
women. Are there any men with these same problems out
there? My son's doctors, including Mayo Clinic, think
he is delusional about his stomach, and referred him
for psychiatric evaluation. He is on medication, but still insists he needs surgery to correct the problem. He has been this way for two years already,

[Jack]

Hello,

I read that some of you are getting your domperidone at $150 a month from Canada. I am taking 40mg a day and it's costing me $66 a month. I am also getting my domperidone from Canada (octoberhealth.com - I don't know if I am supposed to "advertise" here or anything- I just want to make things easier for you to get relief (ie Sarah and Christine!)). I heard from my physician that obtaining domperidone from Canada is my only viable option as the FDA will not be approving the drug for use here any time soon (if ever!).

Feel free to write to me at ***@****

Jack

[monkeygirl]

Hi Jack,

I am taking double the amount that you take...80 mg per day, so that is why it costs me double the amount to buy it.  I pay $123 a month to take 80 mg a day, so it is not any more that you pay per pill or anything.

Thanks for the help anyway,
Carissa