Digestive Disorders / Gastroenterology Expert Forum
Gastroparesis
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Gastroparesis

Hi,I have posted here in the past and appreciate you service its
been a great help.I have had ideopathic gastroparesis for over
2 yrs now and have progressivly lost aprox 20lbs.My weight now
is 100-104 flux. Every time I get sick it drops and after some time it will get back to 104.I can not seem to progress beyond this status. I have been on disability since 11/99.
My doctor said if I dont see improvement in June,
when I was going to return to work,he will just continue the
disability.I feel weak most of the time and have been having
episodes of hypoglycemia due to what I eat or if Im not able
to eat enough.This is getting very upsetting for me.

*If I dont see any improvement do I just have to
"get by" like this?How long do I wait...........

*I am very concerned about the long term effect
of staying at my current weight and minimal activity level.
Is it harmfull to my body?

*Any suggestions as to what might be a "benificial next step"
would be greatly appreciated.I feel like I need to do something,
I cant stand watching my life go by..........

Thank you for your time!
Jeannine
(***@****)
Related Discussions
Avatar_n_tn
Hi!  I have posted a few times in the past.  Recently my gastroparesis/GERD (non diabetic) is worse.  I get totally full from eating 1/2 banana even.  I'm 41.  Should I ask my gastro guy about domperidone (? sp) in that does it help this?  Every time I eat anything, I end up burping it back up. This is raising havoc on my esophagus and emotions.  I am now living on gatorade and vanilla yogurt, which also leaves me feeling full.  I take prilosec 20 mg in the morning, Axid in the evening.  Nothing seems to help.  I can't take Reglan, it makes me feel nuts!!
HELP!!!  Does anyone know of studies/good gastroparesis doctor in the So. NH/Boston, MA area??  Thanks.   Kim
97 Comments
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Avatar_n_tn
Hi again jeannine,

I was writing you a long response, and got kicked off, so I will have to shorten it.  I also have idiopathic gastroparesis...I've had it for about six years. I've written you before. My doctor (Dr. Koch at Hershey) told me that sometimes people get a lot better, sometimes they get a little better, and sometimes they don't.  I think I'm a don't.  I haven't improved over six years...if anything, gotten a little worse.  I have been on TPN since December when I was in the hospital and I really hate that. I'm having a rough time with my last semester of college.  I am supposed to graduate in three weeks, and I am way behind in all my classes because I've been so sick this semester!  I'm supposed to go to grad school in the fall, and I don't want to be this sick!  You're taking domperidone right?  That's the only drug I can take with no serious complications (cardiac arrest because of my heart problem, prolonged QT).  I don't have any other suggestions...it's trial and error with the food.  I think Dr. Koch is thinking about sending me down to John's Hopkins for another opinion.  I am also very concerned about my low weight and activity level.  At one point i lost 31 pounds and weighed 78!  I usually run around the 90's (I am 5'3")  I have minimal activity because of the combination of gastroparesis and my heart probloem and have HP parking, which i hate because I used to play sports.  I have not heard to much about the long term effects of malnutrition (in my case, my effects have been more short term, related to low potassium and then cardiac arrest).  I am scared about the future though.  I don't know about the next step for you, because I'm at a loss myself...I'm having a rough time and don't know what to do either.  I heard the gastric pacer was approved by FDA a couple of weeks ago, but I think it is still for very few people.  That might be an option.  I am trying small bits at a time, and it's hard because I usually have a huge appetite, but then eat two crackers and almost throw up!  I am craving real food and it's tough because I can't have it!  I think that is my biggest struggle lately.  The huge appetite, and then not being able to eat it.  

I have a question for you though...I tried to get on disability a year ago because there's no chance I will ever be able to work enough to support myself.  They told me that I am not disabled enough because I used to work in retail (10 hours a week, and not a chance I could do that now..it was before I got worse).  i appealed it, and they still said I was not disabled enough.  I know it is always difficult to get approved for this, and I'm not pursuing anymore at this point, but will have to in the future.  My parents are also trying to keep me on their insurance plan by claiming me as a Handicap dependent, because I will gewt kicked off when I turn 23 in October, and I won't be able to work full time to have my own insurance!  they are having difficulty getting me approved for that too.  How did you get on disability?  Was it really difficult? Did you have to go to court?  I am not going after that now, but know it may be my only option in the future.  I really want to work, but don't think I ill be able to full-time, or even close to it.  

Sorry I wasn't much help...Hope it was a little help and support at least!  Please feel free to e-mail me agian anytime.  Good luck.  ***@****

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I AM A 50 YEAR OLD MALE.OVER THE LAST TWO YEARS I HAVE HAD SEVERE ABDOMINAL PAIN.THIS PAIN WOULD START TOWARDS THE CENTER AND RADIATE TO THE UPPER RIGHT.I ALSO HAD BACK PAIN BETWEEN THE SHOULDER BLADES.EVERY TIME I WENT TO THE EMERGENCY ROOM,THEY WOULD RUN A EKG.WHEN MY EKG CAME OUT GOOD,THEY WOULD DIAGNOIS ME AS HAVING ACID REFLUX.I HAD A ULTRA SOUND,AN UPPER GI,A CAT SCAN,ALL CAME BACK SHOWING NO PROBLEM.IN MAY OF 1999,AFTER MANY OF THESE ATTACKS,I REQUESTED TO SEE A SURGEON.AFTER SEVERAL MORE TESTS,HE REMOVED MY GALLBLADDER .HE SAID IT WAS DISEASED AND THAT I HAD SLUDGE IN IT.I HAD NO MORE PROBLEMS FOR APPROX 5 MONTHS.THEN I STARTED HAVING THE SAME PAIN AGAIN.ALL DURING THIS TIME I WAS DRINKING ORANGE JUICE ON A DAILY BASIS.I QUIT DRINKING THIS AND CARBONATD DRINKS 2 MONTHS AGO AND I HAVENT HAD ANY MORE ATTACKS SINCE THEN.I FEEL MUCH BETTER AND BELIEVE THE SPASMS AND PAIN WAS OCCURING IN MY ESOPHAGUS.
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Avatar_n_tn
hi,
i am not able to help you with your questions. but i am wondering if you can help me. I have just recently been diagnosed with Gastropareisis. I am 26yo., can you tell me what i am in for?...What meds. you are taking?...Any suggestions would help...I have been soooo upset and frustrated since I have been diagnosed, there doesn't seem to be much help out there...

Thank you in advance...

...if you just want someone to hear you vent your grief, email me at ***@****
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Avatar_n_tn
Check at Mayo Clinic in Rochester, MN.  They are doing research and tests there dealing with gastroparesis and are using different meds for this.  Last I heard about Domperidone it was not all it was supposed to be.
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Avatar_n_tn
I have been seeing the gastro dr who said that since my throwing up ahs stopped i could try to stop using the reglan when this has happened i get a pain in my back about even with my shoulder blades which seeds me back to the medicine cabnet for the Reglan that stops the pain. I have let it go and then become sick..could you help me with this. i am also not eating hardlyany red meat and am also bordering on hypoglycemia at times
i eat it seems like all day very little.I was told this could last for 6months to 2years he thinks it was from a virus.Also has any one have diahrrea and constipation with this I never know if it is from the medication or other wise I have also gone from 205 to 185 in a short amount of time. I hate feeling druged all the time. I have tryed riding my bike short distances to build my stamina back short hopes and lots of stops.could you all help with some of these questiions!!I have used the gicare diet and cut my faat intake to about 30 to 40gms a day. My E-mail if you care is ***@**** thanks
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Avatar_n_tn
Hey Patty.

Sorry to hear about your diagnosis.  I remeber when I was first diagnosed and it was very
difficult to adjust.  Although it still really sucks having to deal with this, I have learned
to adjust and it has become part of my lifestyle. Every case of gastroparesis is different, so
it's hard to say exactly what you are in for, but I will give you my experience (and I have a
lot of it!).  I have been dealing with it for six years.  Is your gastroparesis idiopathic, diabetic
or postsurgical?  The reason I ask is because prognosisis can differ between the three causes.  
Idiopathic gastroparesis has a little hope of improving, in some cases, and typically does not get
any worse.  Diabetic gastroparesis usually gets worse.  Postsurgical usually does not have the hope of
improving, but will not get worse because the damage has been done.  As far as what you are in for...Nausea
and/or vomiting after eating, early satiety, occasional abdominal pain (maybe), weight loss, malnutrition,
bloating, dehydration, etc.  That's my main symptoms.  Some cases are not as severe as others.  Some people
are able to maintain their weight by eating small meals all day long.  Other people can't even keep small meals
down and eventually end up on nutritional support (like me).  I have been on TPN through a midline 5 years ago,
a j-tube for two years, and now I have had in a PICC line for five months. There is no cure for this disease, but
the doctors are currently working on a pacemaker for the stomach which was recently approved by the FDA for a
small group of severely ill people.  Drug research has been slow, and they are not sure about ever discovering a
new drug.  I take domperidone which I get from Canada, and in the past have taken reglan, e-mycin, and propulsid.  
I had severe neurological reactions to reglan, and went into cardiac arrest several times in reaction to propulsid
and e-mycin (I also have a heart problem).  this all started when I was 16 and now I am 22.  None of the drugs
have been really effective...basically the reglan only blocked out my nausea until the drug wore off and then I
felt it full-force.  The other drugs have not given me tremendous benefits, and the domperidone alone certainly
doesn't do the trick.  As far as what you are in for, like I said, it depends on the nature and severity of the
disease.  It is very difficult to treat, but if you are not real severe, you have more hope.  I can't say you will
lead a normal life, because you won't, especially if it is severe.  It has had a tremendous impact on my life and
some days I can't even get out of bed, which is hard as a full-time college student!  I don't work, barely take a
full-load, and still take incompletes every semester in my courses.  Of course, I am on some pretty high doses of
heart medication also which makes it especially difficult and tiring. As far as foods...eat low fat, low fiber, low
or no meat (some people can handle some fish), and careful on the fruits and veggies.  Some good foods to try are Frozen
yogurts, low fat cottage cheese, eggs (one of the most easily digestible foods), pasta, soups, mashed or baked potatoes,
hard candy (for calories), some breads are ok (a lot of carbohydrates are good), puddings, soft white meat (if you can
tolerate it).  You have to get creative in order to add variety.  For example...I have had very low fat cheese pizzas!  
I have to make them of course and only eat a very little bit, but they are pretty good and it adds variety.  Sometimes if
I feel up to it, I will eat low fat waffles with high-cal syrup.  On a good day, half a bagel goes down ok. Some low fiber
cereals in small portions can work well too.  I hope this is helpful...Sorry if the news is not that great, but there really
is no good news with this disease.  Some hospitals to check out (depending where you live) are Hershey Medical Center in PA (to
see Dr. Ken Koch), Johns Hopkins in Baltimore, University of Kansas Medical Center (to see Dr. richard McCallum).  Dr. McCallum
used to be at the university of Virginia, but he left so I don't know that they are heavily involved in the research there anymore.  
I hope this helps.  If you have any more questions (I also have other food ideas if you are interested...you have to get creative,
and even then it gets boring and you REALLY start craving a McDonalds Cheeseburger and fries), feel free to write me at
***@****.  Good luck.
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I have a three year old son who has always refused to eat solid food and his fluid intake was minimal from day one.  He was finally sent to a GI doctor a few months ago who diagnosed him with gastroparises and a motility problem.  His stomach is always bloated he is very gassy.  His weight has always been very low and finnaly was off the charts when he was about two years old.  He also has cronic (chronic) ear infections, speech delay.  His GI doctor put him on Peptamen Jr. which is about 30 cal.per ounce.  It is pre-digested, lactose free and gluten free.  In just two months time he put on 6lbs. which placed him in the 25% for his age.  He has steadly gained about a lb. a month since and looks very healthy.  Although he does eat a tiny bit now we depend on the formula for his total nutrition.  He is on pepcid and pariactin syrup for an appitite stimulant.  We did try Propusid for about 3months with little response and so after the warning about it we discontinued it.  Thankfully we haven't had to put him on a tube but I spend my whole day dealing with his feeding.  When he will accept food he won't feed himself.  Although he can drink from a cup he refuses to drink his formula from a cup so he is still on a bottle.  Which he won't hold himself so I have to give it to him which is about every 21/2 hrs.  We have tried taking the bottle away but he loses weight every time because he doesn't eat.  When he does he is in a lot of pain and becomes very very bloated.  He has done very well on a very strick routine that suits him.  We tried putting him in Nursery school this year but it would have messed his schedual up to much.  We don't try to make him fit into other peoples ideas of normal.  He sleeps quit a bit so we are home bound pretty much.  and of course being on a bottle at 3years old is not considered acceptable but it works.  It sure seems better than a tube.  His doctor wants to put him on Reglan but we are hesitant.  He does very well if he only drinks the formula and stays away from solids.  We are seeking alternative treatment for him.  We have taken him to an Envirmantle allergist.  Who is a Holistic Doctor and just had a consult with an ostiopathic doctor who has given us some hope.  He says that the trama of being born did damage to his cranium therefore the brain doesn't send the correct messages to the stomach.  He also thinks that he may have an over growth of yeast and is doing a complete study of his stool.  Both of these doctors are old and belive in finding out the cause of the problem rather than treating just the symptoms.  Not to many insurance  pay for these services so it can get expensive.  Our insurance doesn't pay for the formula eaither (they would if he was tube feed) which is costing us $721 a month (four cans a day).  It can get tough financally plus a am going through a divorce.  I am so glad I found this site because I am alone in this.  My mother brother and sisters want nothing to do with him.  Which is hard for me. I would appreciate any feed back or suggestions.  His GI doctor said that it will probably be lifelong.  I am getting so sick of battling doctors and insuance companies.  
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Avatar_n_tn
Jolene,
Sorry to hear about your son, but as for the formula he is taking for nurishment and the cost, I can relate.  I too need to supplement my intake with a liquid nutrient.  It runs me approximately $645.00 every 2 weeks.  My insurance was not going to cover it but my GI doctor wrote and appealed it for me, explaining that it was my only real source of nutrients due to my malabsorption and motility disorder.  They, the insurance company, had their medical team review my appeal and they are now reimbursing me for this expense.  You might want to try this. (I do have to pay up front but then submit the bill to them and recieve a check from them.)
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Jolene-

I also have had to take liquid supplements by mouth as my sole source of nutrition in the past.  My doctor wrote a prescription for it, and that way the insurance company covered it.  Otherwise they would not.  They did cover my tube feedings for two years, and also my TPN for the past five months as well as a few years ago.  I think you should be able to find a way to get this covered.  Good luck!
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Thank you both for your suggestions about the formula.  His doctor has written numerous letters to our insuance company but they still haven't agreed to pay for the formula.  I also call them almost every week.  They have said that if was tube fed they would.  I was wondering if someone could tell me how uncomfortable my son is with so much abdominal swelling?  He is pretty good if he just does liquids but if he eats solids it is obvious he is in pain and usually vomits.  His doctor says he is a tough boy.  If he had his way he would live on water.
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Just a thought.  A pharmacist once told me that sometimes if you contact the pharmaceutical company that makes the product they can help you.  They sometimes have funding for something like this.  It might be worth a try!
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Hi,

Now I have a question for all of you. I have had severe problems the past few months keeping any food down (I've had very severe regurgitation).  My doctor
checked for blockages last time I was in the hospital, as well as other problems.  Basically, what he discovered was an excessive amount of acid in my stomach...
no suprise.  He also did the gastric emptying test which, of course, came back positive as it always has.  There was not much change except a slight decrease in my
emptying speed (2-3%) which he was not all that concerned about.  He started me back on nutritional support (TPN)and I began taking Prilosec.  I've heard all these
great things about Prilosec, but haven't had much success myself with it.  It has been helpful in that now when I regurgitate it is usually just undigested food
and not as acidic as it was in the past.  My food usually comes back up after around an hour after I have eaten it and lasts up to six or twelve hours later. It doesn't
seem to be affected at all by what I eat...everything I eat comes back up.  It is like vomiting, only it's not.  It's that amount though.  Depending on how delayed it is,
it will come back up in the form of bile.  I am on 20mg of Prilsec twice a day.  Even on this dosage (which my doctor will not increase) I am still losing everything I eat.
Five weeks ago I took some medication for diarrhea (which is caused by the TPN...I've never had problems before) and it made me sick, so I only took it that once.  I know it
was five weeks ago.  Twice this week when I have regurgitated my food back up, large remains of that medication have been in it.  It's really disgusting.  I KNOW without a
doubt that it is that medication because nothing else would look like that.  It has not dissolved or digested in all that time.  It really made me nervous.  I am going to talk
to my doctor at Hershey Med about this, but I doubt he'll have any answers for me.  He's scoped everything he can think of out.  He's thinking about sending me down to Johns
Hopkins for another opinion.  My questions are:

Is it possible that the Prilosec would not do the trick for me?  Why would everything (even six hours later) be undigested food and not acidic if my problem is acid reflux?
Also, if it's acid reflux, why would the Prilosec not help much?

Second of all...why would this medication sit in my stomach for five weeks without being dissolved or digested.  Is that possible?  I KNOW it was that medication, and I know
my stomach is slow, but that's ridiculous.  

Also, why would this regurgitation problem just show up five months ago when I have had gastroparesis for six years, and my gastric emptying has not changed much?

Oh yeah...besides the Prilosec, I am also taking Domperidone and Tenormin (for prolonged QT...a heart complication).

Please help me if you have any ideas.  I will talk to my doc about it, but I don't think he will have any new ideas either. My e-mail is: ***@****
Thanks.
Carissa
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Avatar_n_tn
I posted this reply under another question but received no answers.  Can someone please help me?  Since I posted the reply, I have tried to eat and ended up so sick that I do not want to eat again.
"Hi, everyone! Sorry that you are all having these health problems. I do know what it is about.
What is gastroparesis and how is it diagnosed?
Here is my story. Started in January with the Flu which went to Bronchitis then Asthma. Next I had menstrual bleeding and a kidney stone at the same time which required a D & C and Cystoscopy/Ureterscopy (also at the same time). Came home from the hospital to find my dog sick (he was old), he collapsed outside and I picked him up to carry him in the house (did not want him to die out in the cold by himself) which was not a good idea because I popped a ventral hernia repair. I went to the doctor about the hernia and because I had diarrhea and nausea and vomiting since I had gotten the Flu.
Doc said he had to do a test and it turned out I had Pseudo Membranous Colitis. This came from taking antibiotics but the treatment is more antibiotics. Was given Flagyl which sent me to the emergency room with an allergic reaction. Then I was given Vancomycin in the dose of 125 mg a day. This did not work so I was given 500 mg a day.
Three months down the road, I still have pain in the upper left quadrant, diarrhea, nausea and vomiting. Cannot eat or drink. I have been in and out of the hospital about four times this year. Mostly for dehydration. I lost seventy-one pounds in less than three months.
Last week in the hospital, I had all kinds of tests. They did not really find much. The C-Diff test is now negative so it is not the colitis. I was told Gastritis and Irritable Bowel. Find it hard to believe that is the cause of all of this and my family doctor thinks it is something else, too.
On Saturday when I came home from the hospital and walked in my front door, I immediately had a sore throat, tightness in the chest and an upset stomach. The diarrhea, nausea, vomiting, pain and fever (low grade at about 99.6) were all back. Back to going to the bathroom, three to ten times a day and throwing up all I try to eat or drink.
Now my family doctor (as I do) thinks I am allergic to something in my house so next week I see an allergist. He thinks it is my new puppy but I only have him for one month and I have been sick for three months.
I live in a very old mobile home which could have lead paint, asbestos, formaldehyde, mold, mildew or who knows what.
One doctor made a comment to me that since I can stand to lose more weight (I was huge at 380 lb a year and a half ago. Lost the first 50 lb with diet and exercise over a year's time but lost the rest in the past two and a half months with still 100 lb to lose to be at a proper weight.), they will just wait until I lost weight down to a normal size and then see what is wrong with me. My appointment with the gastroenterologist is not until May 30.
Also, I was told that it could possibly be Eosiniphilic Esophagitis because there are Eosiniphils in my blood work. What is that?
If anyone can help me to get better or at least to get fluids down so I don't have to go to the hospital again, I will be ever so grateful for the advice.
Thanks everyone!"

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Avatar_n_tn
Hi Cindy-

All the symptoms you describe (except for the diarrhea) sound like gastroparesis.  Gastroparesis results in severe nausea, vomiting, abdominal pain (due to food sitting in the stomach for so long)after eating or drinking. It can be a complication of diabetes, post-surgical, or idiopathic (Unknown)  In some idiopathic cases, it can be linked to a virus or flu. Usually people with gastroparesis have more of a problem with constipation than diarrhea because food moves through so slowly.  I have heard of people having diarrhea with gastroparesis though...usually if they also have IBS.  It does seem weird though that the symptoms seem to worsen when you walk into your home...that would not be an indication of gastroparesis.  It does sound like something in the home might be making you sick.  

Gastroparesis is diagnosed by having a gastric emptying test done.  For this test, you will eat a meal (usually eggs, sometimes something else) with radioatctive material in it.  Then you will lie under a camera for two hours (or at some places they will put you under it every fifteen minutes for two hours).  The camera will trace the food as it goes out of your stomach and into your intestines.  At the end of the test, the radiologist will determine what percentage of food was left in your stomach after two hours. If there is an abnormally high amount left, it would indicate that your stomach is emptying slowly and would be an indicator of gastroparesis.   If the test comes back positive, your doctor will probably also do an endoscopy and possibly other tests to make sure that there is not a blockage or obstruction.  If there is no blockage, or anything keeping the food from emptying, then you would probably have gastroparesis.

Given your symptoms, I would recommend having this test done.  I don't know about why you get worse at home, but if nothing else, this test would at least rule out the possibility of gastroparesis.  Good Luck.
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Avatar_n_tn
My situation doesn't sound as severe as others and my sympathy goes out to everyone. I have been diagnosed with gastroparesis. My symptoms started about a month after I had a viral infection which caused my throat to feel tight due to the blisters in it. My left arm felt numb & I felt a tightness in my chest. I went to an urgent care facility & had an EKG(normal) &  a GI cocktail which didn't offer any relief. My family doc put me on tylenol (arm pain)& 30mg Prevacid. Driving home from a  stressful day at work, I felt an increased pressure in my chest(to the point where I didn't want my seatbelt or bra touching my chest) & I felt like passing out. I went to an urgent care facility where I had another EKG & GI cocktail. Still no relief. My family doc ordered an upper GI(normal.) She then decidied some anxiety must be involved (stressful job & getting married soon) & gave me Klonopin so I could relax & sleep at night (when my symptoms were worse.) At the 1 month follow up visit she referred me to a GI doc & did an upper chest xray. The following day I had another episode (again driving in the car, tightness in chest & left arm & feeling like passing out.) It was during office hours, I went to see my doc who did another EKG (normal like the chest xray.) She then ordered an ECHO (ultrasound of my heart) which was normal & gave me Serzone for anxiety. My GI doc ordered a gastroscopy & gastric emptying study. The gastroscopy showed mild irritaiton of the esophagus & the gastric emptying showed delayed. He diagnosed me with gastroparesis which was causing acid reflux & gave me Propulsid & upped the Prevacid to 2xday. He advised me to eat low fiber/fat diet w/ no dairy fat or raw fruits/vegs. I had a bad reaction to Propulsid & switched to Reglan. This helped but he was concerned about long term use & swithced me to liquid emycin. Which seemed to help. Then more chest, arm & shoulder pains (left side). Drs office sent me to ER where ultrasound of gallbladder came back ok. Then they referred me to cardiologist where I had another normal EKG. My GI doc then ordered a stress test for heart (normal) & HIDA scan on gallbladder (normal.) I have had good & bad periods since. My ob wanted a 2nd opinion before I tried getting pregnant. The new GI doc wanted me to go off emycin & repeat gastric emptying in 3 wks. I felt bad going totally off so took only 1xday instead of 4xday with none 2 days prior to test. Two more almost passing out episodes while driving where attributed to side effect of anxiety med Serzone (drop in blood pressure) & dosage reduced which helped. Last Friday my gastric emptying test was rescheduled to following Tuesday. Going off the emycin, I have noticed I do not have a bm everyday like I use to on it. Yesterday (Saturday), I had some of the ususal tightness in chest, shoulder & arm which I attributed to going off emycin. It got worse when I walked on treadmill but thought that was b/c I already did not feel 100%. Then driving I had another episode but much worse & called 911. They took me to ER & I had another EKG (normal). The ER doc was able to pull stress test and HIDA scan results.  He believes the attacks (though on the left side & not on right as most people have) are from gallbladder.  HIDA scan was actually borderline abnormal (emptied 33% with 35% up being normal.)  He gave me pain medicine for arm, sholder, chest & now back.  No relief.  GI cocktal. No relief. So a stronger pain med. No relief. So then he gave me nitroglycerin (even though he did not think it was my heart - normal tests, 31 years old, no family history.) All I could feel then was heart pounding & not sure if pain went away.  Then more pain medicine & everything else is fuzzy. He talked with my GI doc & a surgeon & they think I should have my gallbladder removed. I am a little hesitant to under go surgery if they cannot say definitely it is the gallbladder that causes these attacks & not the gastroparesis, acid reflux or esophageal spasms. I am at a loss & just hope they figure it out soon. These episodes are scary. Sorry my story is so long but I wanted to include as many details as possible to see if anyone else has had a similar experience. Thank you for letting me share my experience.
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Avatar_n_tn
Weird...

Gastroparesis causes nausea, vomiting, abdominal pain (on left side from food sitting so long, usually in the stomach),
early satiety after eating, and bloating.
It does not cause a weird pain in your chest...at least I have never heard of that.  That can be caused from acid
reflux though because I have had it since my reflux got worse.  I actually feel food food getting trapped in my
throat and chest on the rare occasion it doesn't completely come back out (almost like vomiting). I have never had pain
in my arm or shoulder because of gastroparesis...the only reason I have pain there is because of some nerve damage that
was done during a major surgery four years ago.  Your symptoms don't sound typical of gastroparesis.  What was your emptying
percentage? Do you know?  It may be a mild case, but I would say that there is something else going on.  I don't know
if it's the gallbladder or not, but I would say if your symptoms don't completely match up, that I would have other
things checked out before you go to the extreme of having surgery...since there is no solid evidence that is the problem.]
Do you also have those symptoms I listed above of gastroparesis?  Have you tried taking Prilosec?  I've heard it's better
than Prevacid.  It's worth a shot.  Other than that, I don't really know what to tell you.  I've never had (or heard of)
those symptoms being caused by gastroparesis.  Good luck.
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Carissa,
Thanks for responding. My gastric emptying was delayed with T 1/2
greater than 120 minutes. I don't exactly know what that means but the nurse told me I did not pass any of the 1/2 egg sandwich in 2 hours. I have not had any nausea or vomiting and advised my doc of such. Early satiety - I just assumed I rarely got hungry and felt full because I ate too much and never mentioned it to a doctor until after the gastric emptying study. I have not tried Prilosac b/c my HMO won't cover it - just Prevacid. My GI doc says the tight pressure in my chest and numb arm are from acid reflux resulting from the gastroparesis but I've never had the acid taste which I am told is common with GERD.  He also cannot explain the passing out sensation I have had on occassion. I did feel better before I went off of the emycin. Hopefully the second gastric emptying study will help.  Thanks again for your time and input.  My best to you and everyone else.
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To all.....

It has been my experience that if you eliminate all fibre from
fruit and veggies and you have to many carbohydrates you may be setting yourself up for feeling worse.Its good to try to have some protien with a carb and to have "some" veggies/fruit even if you have to put them in the blender or have really small amounts through the day.If you can't handle fresh raw veggies
try frozen and smash 'em up.

Jeannine
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I was so fascinated by the number of people who suffer with gastroparesis.  I have diabetic gastroparesis.  I have been diabetic for 34 years and developed this disorder 6 years ago.  I had surgery on my hands and developed a complication called neuropathy.  There are a couple of kinds. One is where you can't feel anything, like in your feet(that is why there are so many foot and leg amputations.)  Some diabetics can't feel if they have a soar.  The other kind is PAINFUL neuropathy which is what I got after my hand surgery.  I became suicidal in the hospital because they could not control my pain.  After 8 weeks, I was put on liquid morpheine.  It took my system 2 years to get used to it.  During that entire time, my gastroparesis was getting worse and worse.  My husband became very frustrated, not believing there was nothing any one could do. I have all the nasty symtoms (symptoms).  Throwing up is second nature to me. Because I am diabetic, my nutritional needs are very specific, but I can not take care of them.  My doctor just mentioned las week about the stomache stimulator for gastroparesis.  I will try ANYTHING.  I am so sorry that so many people have this, but am grateful to know that mine is not so out of the ordinary.  Thanks for this forum  Deb Ritter - Minneapolis
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Two and a half years ago I started with frequent "stomach flu" symptoms.  I figured my resistance was low and I just kept getting the stomach flu.  One July day, before leaving for a trip, I was so sick and so determined to go on vacation, that I literally ate Tums, Gatorade and dry Cheerios for a day until the pains and vomiting went away.  Then I made an appointment with a Gastroenterologist who did an endoscopy on me.  He found an ulcer on my esophagus and diagnosed me with GERD.  Two years later, I continued to complain that my stomach always felt full and that Prilosec (which I was taking because my insurance would not pay for Prevacid) was not working.  He wrote a letter and switched me to Prevacid and told me that the pains I was having were "all in my head."  I went to a new Gastroenterologist (A WONDERFUL PHYSICIAN) who sent me for a gastric emptying scan.  I was found to have gastroparesis (my stomach only works at about 45% capacity).  I am currently taking Propulsid 20mg. three times a day and doing well(but worried because it will soon be taken off of the market).  There aren't many options left except maybe Reglan--------and that's a drug I'm really afraid of.  I sure hope that find a way to control this problem soon--without such severe side effects.
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Hi! I have posted a few times in the past. Recently my gastroparesis/GERD (non diabetic) is worse. I get totally full from eating 1/2 banana even. I'm 41. Should I ask my gastro guy about domperidone (? sp) in that does it help this? Every time I eat anything, I end up burping it back up. This is raising havoc on my esophagus and emotions. I am now living on gatorade and vanilla yogurt, which also leaves me feeling full. I take prilosec 20 mg in the morning, Axid in the evening. Nothing seems to help. I can't take Reglan, it makes me feel nuts!!
HELP!!! Does anyone know of studies/good gastroparesis doctor in the So. NH/Boston, MA area?? Thanks. Kim
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I experience upset stomach close to diarhea (diarrhea) at different part of days with different foods. I've been to a GI but he said everything is fine. He sent me to a psychologist and I checked out fine. What could I possibly do?
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There is a web site that you may want to check out:

www.dailyfutures.com/gastro.html

It has information,internet links, alternative medicine info. and helpful ideas re gastroparesis.

Jeannine
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I think I probably have gastroparesis too.  I have quite a bit of pain in my upper stomach though.  This is sometimes a burning, dragging pain which is not helped by antacids.  My doctor has me on Prilosec and Propulsid and I too am afraid about what will happen when Propulsid gets taken off the market. I haven't had a gastric delay test but I'll be asking my doctor for one when I see him next.   However, my stomach often feels full.   Since taking the Propulsid, I can usually eat a half decent meal.  Sometimes, however, if I eat something that doesn't agree with me, I'll get that horrible burning, dragging, nauseating episode.  I have to run to the bathroom quite a few times too.  Most days I feel some pain and nausea.  Does anyone else with gastroparesis have pain all the time in their upper stomach as well as nausea?   Could it maybe be gastritis.  I just don't know and the doctor doesn't seem to be able to give me any ideas either.
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I can relate to being fed up.........
I have gastroparesis and the chronic nausea and pain can be
symptoms of it.I usually have pain/pressure if food is sitting
in my stomach. I also feel burning at times.If you have alot of acid and things are inflamed then that may cause nausea also.
A medication worth trying is Carafate,it may cause constipation
but otherwise it has no side effects.If you are running to the bathroom due to diahrea (sp?)this may help that also.
This med coats your stomach lining to protect it from acid and helps inflamation (inflammation) heal.I found it to be helpfull.Zofran is great for nausea (a bit exspensive) Domperidone is a motility drug like Propulsid but it is only available in Canada.Your doc can fax a RX to the pharmacy and then you call and give a credit or debit card # and they can fed-x it or mail it to you.If you would like info on a pharmacy let me know.Symptoms of gastroparesis are usually feeling full after a few bites or
fullness lasting a long time,nausea,vomiting,some people have
reflux of food and or acid,abdominal bloating pain/pressure
and sometimes constipation.Everyone is different with how severe
symptoms are and not all symptoms have to be present for it to
be gastroparesis.I would definetly ask your doc about a gastric
empty scan to rule it out or confirm a diagnosis.This way you
know what you are dealing with.Eating small more frequent meals
can be helpfull and limit fat/grease and high fibre foods as these are harder for the stomach to break down and can worsen
symptoms.There is a web site www.dailyfutures.com/gastro.html
you may want to look at. The second page has links to other
sites and one has a good diet plan,it gives you an idea of
quantity and types of food you (can add or replace things)
I hope you get some relief soon, hang in there.If you have
any questions ect. ***@****

Jeannine

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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.)  On 10/27/99 someone named Mary posted a message on this site where she described taking part in a study that found a hormonal link.  If anyone has any info. on the study or any other info. on the gastroparesis-hormone connection, I would greatly appreciate it if you could post this information or direct me to it.  Thanks so much.
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I read all the previous replys. Please visit AOL's website and search Medical Advise, then Specialized Medical Searches.Cruice the subjecta and match symptoms to yours. Good Luck.
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Hi to all,

There is a site worth checking out that has been set up by a fellow gastroparesis sufferer,it has a message board and they
are trying to set up a chat for May 30 or 31st? not sure.

The web addr is:  www.geocites.com/rainforest/wetlands/8810/

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I am 41 have gastroparesis severe reflux. Been on numerous medication. Reglan made me crazy Propulsis made my heart race. Now I am trying emycin again. My dr has started me on a low dose before meals, one half teaspoon before meals. Is such a low dose substantial. I also tried domperidone lots of side effects. I also have hypothyroridism my gall bladder has been removed. I have days that are awful nausea although I have not had any weight loss. I went to gainesvile Fla to the University for an eval... They did nothing because i am able to maintain weight. That on a medical standpoint is a positive but I am miserable 90 percent of the time.I get tired of my dr saying there is nothing we can do,, this plays havoc on my mental well being.I am trying to change my lifestyle eat more liquid and less solids if anyone has anything that will help let me know.Thanks Cheryl
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The correct address to the gastroparesis message board.
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I am a 16 yearold boy and recently I have noticed blood with my feces what should I do? and what could be causing this?
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Jeannine,
I have finally after so many tests found out that I have this same condition as yours.  I have also lost about 30 lbs. and I am getting nowhere.  The medicine propulsid was prescribed, it does no good for me.  I have been trying to learn more and more but keep getting nowhere.  Any info you care to share with me will be greatly appreciated.     Thanks and I hope you are doing well.       Cheryl          ***@****
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dear mike,
I have been having the same thing go on with me as you. I have
something that started in my abdomen and seemed to go into my
stomach. pain intermittent. Then It went into my shoulder blades
and radiated down into my arms. Right now after 2 months of test
and nothing. I have muscle spasms or something that
radiate from my shoulders into my neck and if I sit for long
period of time it seems as if Im cutting something off to my
neck and i get the pain in my head and shoulder. Any insight
for me?
Tonia
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Hi,

I have set up a web site for people who are suffering from gastroparesis or just want to learn more about it.  I suffer from gastroparesis and have included a bunch of tips and suggestions on food and how to feel better, as well as information on how to get a hold of domperidone.  I also set up a section where patients can submit their name and e-mail address so that other people with gastroparesis can contact them.  Check it out if you get a chance!  The URL is www.monkeygirl.atfreeweb.com.

Take Care,
Carissa
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I keep waiting to post a question but the site says keep checking back in a few days and I've given up so I'm posting here and hoping someone has some info.  I was diagnosed with gastroparesis about a month ago.  My symptoms were terrible for about a week (although looking back on it I had milder symptoms for a few months prior)and then got better.  I haven't taken any medication since getting better.  In the last few days, I feel that my stomach is a little slow - I don't exactly get nauseous but just have a sick feeling in my stomach.  Also, I'm able to hold food down and my meal size is pretty good.  I'm just wondering if I anyone else has had a similar experience where symptoms were terrible (I was actually hospitalized - couldn't hold down anything, very nauseous, and in pain)and then they just eased up.  Until three days ago, I wasn't really feeling anything bad at all.  Is it possible that I won't ever have a really bad bout again or am I being unrealistically optimistic?
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I have had idiopathic gastroparesis for 3 years now but noone knew what is was offically until last year.  I also get pancreatitis(I don't drink!)  due to possible spincter of Oddi dysfuntion.  My liapase counts are high but the amalayse levels don't climb that much.  I've been hospitalized many times for dehydration, enlarged pancreas, severe stomach pains and severe
diarrahea.  I can't eat- maybe once everyother day.  I've been on T.P.N. twice via Picc line- 4 weeks ago I got sepsis and was in the hospital for a week.  I'm afraid to get a port put in because I don't want the risk of getting sepsis again.  I've been to Boston, and now they want me to go to John Hopkins Med. Cntr.  I can't stand the constant nausea and shooting"electrical" pains in my stomach.  When my stomach is really bad, i.e. full to "the max", nausea, wanting to get sick but can't- then my pancreas kicks in with no mercy.  I thought I was the only one out there with this problem- I hope you all get better soon. Has anyone been to John Hopkins?  Were they helpful?
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I hate to be anonymous, but unfortunately I have to.

I was diagnosed with gastroparesis and GERD 2 years ago. Previously in high school I had developed a bleeding ulcer, which went away with prilosec and rest and relaxation for 3 months.

I've been on Prilosec since then and Propulsid since 1998. Although they've helped a little with my symptoms, I still had a problem with getting nauseous after I eat and often throwing up, and I had absolutely no appetite.

After I lost 20 lbs, my doctor warned me to get my weight up or she would have to surgically insert a feeding tube into my stomach. So I was really worried and my boyfriend suggested something I wouldn't have ever thought of: MARIJUANA.

Before my diagnoses of gastroparesis, I smoked cigarettes, but quit soon after I got sick. I had smoked pot a few times early on in college just to try, but never really got into it.

Pot has made life livable for me again. Now I do yoga, go on long walks with my dogs every day, and enjoy life a lot more. Pot helped me to get my appetite back, I gained my weight back and have maintained it for the past 8 months. I'm not a slacker or a deadbeat. I work part time and go to school full time, although my GPA got really low due to getting sick all the time. Since I started smoking pot, my grades have actually gone up!

I usually smoke before dinner at 6pm. If I get stomach cramps, or nauseous, I can smoke pot and it immediately calms down my stomach and I can breathe and feel ok again.

It's a weird solution, but I have to say that it has helped me and this is NOT a joke. My life was terrible before. I laid around, was weak all the time, my grades fell and I had to actually medically withdraw from a semester. Now my graes are getting better and I have my life back, but I can't tell my doctor about it and I have to be really careful and I can't tell my family or anything because I'm afraid of being arrested. But it helped me, in any case.
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Hi,

I have had gastroparesis for six years. In all those years, I have never once vomited...not because I haven't needed to, just because I can't.  It's miserable to be so sick that you want to vomit, but not be able to.  However, in the past seven months I have had difficulty with regurgitation of food, bile, and liquids.  I have the same amount come back up as someone who would vomit.  I have been on a PICC line for this.  I am also taking prilosec (80 mg a day..the maximum dose) and it helps reduce the acid that builds up from my food sitting in there so long, but I still spit all kinds of junk back up.  Now that I am looking at having to have the j-tube put back in (I already had itin for two years at one point) I would like some help.  My doctor doesn't think that anyone should be on a PICC line for regurgitation.  He said "fat people regurgiatate a lot"  Of course his "fat people" also don't have the extreme nausea, bloating, uncomfortable fullness, abdominal pain, etc that goes with this.  My question is...do you think that since I don't have the ability to vomit, that this is my body's way of getting rid of unwanted food?  It makes sense to me...if it can't go down, and I'm not able to vomit it, then doesn't it make sense to come up this way?  It comes back up for hours. I know a lot of people with gastroparesis have problems with regurgitation, and was wondering if anyone has ever been told this is a cause.
Also...has anyone taken the domperidone for a while and then had it lose it's effectiveness?  Just curious since i have had gastroparesis for six years and this problem worsened seven months ago.

You can post here or feel free to write me at ***@****.  Take care.

Gastroparesis site: www.monkeygirl.atfreeweb.com
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Carissa welll I also regurgatate a lot of my food.It can be anything from just a little to a whole lot depending on what i have ate.I was back to the gastro dr.I am trying to just live with being nauseated.I also would like to know from all of you out therre have you had irratable bowel syndrome problems with this. I can go from being constipated to the d. every few days .He claims that the two go hand in hand.Are these thing you just learn to live with???? my HUsband thing I am just looking for attention. Ha. I have spent so much time in the bathroom it isn't even funny I have lost more weight and the dr would like me to gain some before he release me is there really anything they can do for it. Sharon
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Carissa welll I also regurgatate a lot of my food.It can be anything from just a little to a whole lot depending on what i have ate.I was back to the gastro dr.I am trying to just live with being nauseated.I also would like to know from all of you out therre have you had irratable bowel syndrome problems with this. I can go from being constipated to the d. every few days .He claims that the two go hand in hand.Are these thing you just learn to live with???? my HUsband thing I am just looking for attention. Ha. I have spent so much time in the bathroom it isn't even funny I have lost more weight and the dr would like me to gain some before he release me is there really anything they can do for it. Sharon
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To Kim:  I was referred to the Beth Israel in Boston, where I was diagnosed with gastroparesis.  They want me to see a doctor there who is a specialist in this area.  I'll look for his name and if you e-mail me, I'll let you know who it is.
Good luck.    champagne.***@****
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To Kim:  I was referred to the Beth Israel in Boston, where I was diagnosed with gastroparesis.  They want me to see a doctor there who is a specialist in this area.  I'll look for his name and if you e-mail me, I'll let you know who it is.
Good luck.    champagne.***@****
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To Kim:  I was referred to the Beth Israel in Boston, where I was diagnosed with gastroparesis.  They want me to see a doctor there who is a specialist in this area.  I'll look for his name and if you e-mail me, I'll let you know who it is.
Good luck.    champagne.***@****
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To Kim:  I was referred to the Beth Israel in Boston, where I was diagnosed with gastroparesis.  They want me to see a doctor there who is a specialist in this area.  I'll look for his name and if you e-mail me, I'll let you know who it is.
Good luck.    champagne.***@****
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To Kim:  I was referred to the Beth Israel in Boston, where I was diagnosed with gastroparesis.  They want me to see a doctor there who is a specialist in this area.  I'll look for his name and if you e-mail me, I'll let you know who it is.
Good luck.    champagne.***@****
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I am replying to the person who was having pain in his or her chest. I have had the same problem for five years. I have been bounced between heart doctors and gastro doctors.I have had many cardiac tests. And except for a years bout with frequent PVCs they can find nothing wrong with my heart.  My symptons are horrendous pain in my chest sometimes left sometimes right. When this pain comes it feels like a tight band is being strapped around my chest and I feel like my insides are beind cut to pieces with acid. I burp constantly and stuff comes up. I don't vomit and I have no nausa. The only relief I have gotten is to drink a bottle of that nasty tasting citrate laxitive and about six hours later when I go to the bathroom I can feel the pain dropping down into my intestines. This feels great inspite of the pain, at least I can breath and its more normal feeling. Like I have a stomache flu and I need to go to the bathroom.\
I have been to the emergency room many times with the chest pain and to several cardiologist. I have had ekgs,teadmills, nuclear catscans, dopplar. I have also had barium xrays and a scope of my esophagus with no signs of reflux. The gasto doctor thinks I have esophageal spasms caused by chewing nicorette gum. I gave up ciggarettes five years ago. I developed this pain about a year later. I'm actually thinking of smoking again! I tried propulsid once and felt so strange I never took it again. I think reglan will be about the same for me. I have gained thirty pounds since this started. I don't exercise because my chest starts hurting nearly everytime I exercise. I start burping and the pain starts. I also get the pain on an empty stomache.I burp up alot of white stuff.
I'm thinking of seeing a doctor in Houston. The pain is so bad I can't do very much. I am a widow and the most important thing to me is my son. I try not to act sick around him. But I still get very sad when I can't run around with him. I do alot though. He helps me get through the pain because for him I hide it and do what I need to do as a mother. I just don't want to give that up too.
The doctor also has said I have symptoms of gastropareisis. I know my symptoms are not exactly the same as most of what I have read still it is similar. I feel like gas comes up from my stomache and just sits in my esophagus and pushes on the walls and causes the pain. what do you think?
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My fiance got idiopathic gastroparesis about 3.5 years.  We think it might have been caused by food poisoning.  It took 2 years of IBS/helicobacter diagnoses before she went to Johns Hopkins and was finally properly diagnosed.  Erythromycin made her more nauseous, and Propulsid didn't work well by itself, so she obtained Domperidone from family in El Salvador (nothing like having to get advanced medicine from Central America, thanks FDA!)  Domperidone returned her ability to sleep dependably, although her diet is limited to cereal, beans, and bread.

The one drawback to Domperidone is ultra-high prolactin levels, so you may lactate.  It also makes you slightly accident prone due to mild Parkinson's-like effects if you take too much.  On very bad nights, she also uses Propulsid, they are a good combo, but too risky for daily use.

Her secrets: 1) get an Internet job where you can work at home or coming in at 9AM everyday isn't mandatory.  2) eat fiber in the morning and afternoon if you can.  Not right before you go to sleep.  You will be happier when you go to the bathroom, and it may help in moving food through your system.  She lives on bean burritos from Taco Bell (hold the cheese) and eats raisin bran in the morning, but just bagels at night 3) Smart Beat lactose free/fat free cheese and 4) one slice of very thinly sliced ham, maybe you can fool yourself into thinking it's real cheese/real meat.    

You can check out her webcam/weblog at http://www.carlazone.com
She and I both left the "real world" when she got sick and started an Internet content company.  We're getting married in March, but I don't think we'll be eating the wedding cake.  

She lost about 25 pounds from gastroparesis before she figured out a stable, non-puking diet.  Fortunately, she was a bit overweight before, so now she looks better than she did when she was well.  It's no compensation for the torture, but at least there is _something_ good about the disease.  I've had to lose weight "the old fashioned way" to keep up :)
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my endoscopy turned up negat. helic. bacteria, but mild gastritis
from a biopsy, of stomach and esophagus. I burn alot in the
lower stomach, my tongue is ulcerated. I have alot of gas in chest,palpitations, chest pain under breast bone. I have had this
now for 3 years. I am 33. I am on 20 mg of prilosec a day. I only
drink water. I do no eat anything spicy or acidic, cut back on
sweets. I feel like my inside is gnawing. I had ph probe , negative. gallbladder x-ray, mri's, gastric emptying, bariums,
all negative. So how can I solve this problem of gastritis?
Is there any blood work I should have done? And why is it my
amylase is normally midly elevated, and often the lipase?
my e-mail is ***@****  ( I think)
Thank You
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Jill, I don't know much about amylase or lipase and what is normal and not, but the rest of your symptoms sound like what doctors have told me is GERD.  I get the same burning, gnawing feeling and I thought it was an ulcer, especially since I have a family history of ulcers.  But, the Upper GI proved differenttly.  I was diagnosed with GERD and have been on Protonix since.  It helped a lot more than Tagamet which made me really sck, but I still get the burning pain at night and have to wake up and eat.  Also, I get the acid reflux taste and a lot of burping after eating, but not really nausea.  Is prilosec working?  I am not sure why my doctor won't put me on it, she says that protonix and prilosec are the same.  I feel a lot better than I did a couple months back, but I go through phases.  I still have to take antacids too.  Is your gastrtis stress related?  My doctor also stated that getting off the PPI would be good and to switch to H2 blockers, like Tagmet and Zantac...but if I skip a day, I feel a lot worse, so I hope that I can get off the PPIs soon.
Good Luck and if you hear anything better...please post it!


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Hi Everybody,

It's my first time posting here and I share the feelings of a lot of you. I am a 29yo male and have been suffering from gastroparesis for 2 years.  It tried everything from Prepulsid to Reglan and all kinds of antacids. The only thing that really helps me is domperidone.  I had problems finding at first,I went on a road trip to Canada to try and get it at some pharmacies but the pharmacist there did not want to take my prescription. I was able to find another place through my physician... I don't know if I am supposed to adverise over this site but you can write to me and obtain the name and info on my source of domperidone. micheal_valence***@****. This company seems to specialize in hard to get drugs and the pharmacist at their prescription counter is really nice -although sometime busy-:-)

I also heard the story about Janssen and domperidone/FDA approval. Knowing how this big pharma companies are ($$ driven) I don't see any quick access to domperidone here soon. This drug has been around for some time and they have done nothing! I rather stick with the source I have now!

Write to me!  I wanna help anyone who suffered as I did!..if I can.

Mike





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Hi Everybody,

It's my first time posting here and I share the feelings of a lot of you. I am a 29yo male and have been suffering from gastroparesis for 2 years.  It tried everything from Prepulsid to Reglan and all kinds of antacids. The only thing that really helps me is domperidone.  I had problems finding at first,I went on a road trip to Canada to try and get it at some pharmacies but the pharmacist there did not want to take my prescription. I was able to find another place through my physician... I don't know if I am supposed to adverise over this site but you can write to me and obtain the name and info on my source of domperidone. michael_valence***@****. This company seems to specialize in hard to get drugs and the pharmacist at their prescription counter is really nice -although sometime busy-:-)

I also heard the story about Janssen and domperidone/FDA approval. Knowing how this big pharma companies are ($$ driven) I don't see any quick access to domperidone here soon. This drug has been around for some time and they have done nothing! I rather stick with the source I have now!

Write to me!  I wanna help anyone who suffered as I did!..if I can.

Mike





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Hi Everybody,

It's my first time posting here and I share the feelings of a lot of you. I am a 29yo male and have been suffering from gastroparesis for 2 years.  It tried everything from Prepulsid to Reglan and all kinds of antacids. The only thing that really helps me is domperidone.  I had problems finding at first,I went on a road trip to Canada to try and get it at some pharmacies but the pharmacist there did not want to take my prescription. I was able to find another place through my physician... I don't know if I am supposed to adverise over this site but you can write to me and obtain the name and info on my source of domperidone. michael_valence***@****. This company seems to specialize in hard to get drugs and the pharmacist at their prescription counter is really nice -although sometime busy-:-)

I also heard the story about Janssen and domperidone/FDA approval. Knowing how this big pharma companies are ($$ driven) I don't see any quick access to domperidone here soon. This drug has been around for some time and they have done nothing! I rather stick with the source I have now!

Write to me!  I wanna help anyone who suffered as I did!..if I can.

Mike





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For the past month I have been have severe stomache pain and a bit of gas. I had cut down on the fats and seen to be alright for awhile but now I am feeling nausea and shakey (shaky). I had ultrasound done and everything turned out ok. Could you please help me to see what is going on...   Thank you !!!!
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I know I am not supposed to post questions here but they say the question posting is currently closed. Can anyone help me? I found postings on this site speaking of neurological side effects from the drug Reglan. I am twenty eight. I was prescribed Reglan as a supplement to Prilosec in the treatment of GERD. Since I begun taking the drug I have been experiencing a strange form of 'ansi-ness' in my right leg -- that is, a jumpiness leading to an inability to sit still. My specialist can't see any connexion, but the timing is perfect. Has anyone had similar experiences? What were these neurological side effects people have mentioned? Thanks, I would really appreciate any info.

Neil
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I know I am not supposed to post questions here but they say the question posting is currently closed. Can anyone help me? I found postings on this site speaking of neurological side effects from the drug Reglan. I am twenty eight. I was prescribed Reglan as a supplement to Prilosec in the treatment of GERD. Since I begun taking the drug I have been experiencing a strange form of 'ansi-ness' in my right leg -- that is, a jumpiness leading to an inability to sit still. My specialist can't see any connexion, but the timing is perfect. Has anyone had similar experiences? What were these neurological side effects people have mentioned? Thanks, I would really appreciate any info.

Neil
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Wow, I felt alone until I read this site.  I'll join the choir.  I was recently diagnosed with Gastroparesis after complaining for about 2 years of bloating, lots of belching, pain, nausea, vomiting, etc. Finally, I was sent for an endoscopy and after fasting since midnight (8 hours) bile was found in my stomach and evidence of undigested food.  Before I was diagnosed, I was taking low doses of Ultrase, which is a prescription capsule with digestive enzymes in it.  This helped somewhat.  I am now on Reglan.  Knowing of the side effects, I decided to try the lowest possible dose and work up, if needed.  I am finding some relief on just 2.5 mg (by quartering a 10 mg pill).  I take it 30 minutes before breakfast,  lunch and dinner.  Even this small amount makes me drowsy but I at least feel better.  Sometimes I take an OTC digestive enzyme complex thats easier on the digestive system than the ultrase (too much causes the runs).
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I can't help but wonder:  Many of us with gastroparesis have lost our gallbladders.  I'm willing to bet that most did not have gall stones.  I am beginning to believe that it was the gastroparesis which led to the diseased gallbladder (everything backing up just too much on an overworked organ?????)  I also had a hysterectomy the year before (still have ovaries).  By the sounds of it menopause may suspend this thing.  Bring it on!
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The "jumpiness" could very well be linked to the Reglan,  as it can cause "tics".  Some people are more sensitive to Reglan's side effects than others. I took Reglan for several years and had a problem with my eye twitching.  When I stopped the Reglan, the twitching also stopped.  If you didn't get a list of side effects and other info from your pharmacist when your prescription was filled, request one.  This should answer some questions.
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My wife has gastroparesis too. No gall bladder, IBS, used to have GERD but had a nielsen fundal plication (stomach wrap) to fix it. Has been on Reglan (crawling skin, bad reaction), Propulsid (heart racing), Prilosec (not too good for stomach emptying process), carafate (good coating but doesn't help the original problem), zorfan (new to us, and we will have to see). I am currenlty looking into some alternative, natural, medications that may help. I read about the pot. No is the answer to that, so I am open to any other ideas. 20 years of suffering for my wife is pretty bad. I need some help for her. Thanks.
Randy -***@****
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Hi My sister has this too.  she has found that not eating things such as tomatos works but however this is not a fix for every thing.  I hope this helps.  and if you could send me anything you know about it it would be grate.  my Email is ***@****
Take care and again my email is <***@****>
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Does anyone suffering from gastroparesis suffer from these symptoms when beginning to get ill and during an episode...
I can feel my inner organs swell up...
I can feel the organs rubbing and catching on my ribs in the front and back....
I get a centralized pain in my back in certain areas on or under my shoulder blades...
  Do you suffer any of these symptoms.  It feels strange and frustrating at times.  
I would be happy to communicate with anyone suffering from this disorder.  
  Thank you.
***@**** or ***@****
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To jeane Im a 40 yr old Fire lieutenant. I have taken a liquid gastric emptying study and passed and a solid gastric emptying test and failed. Im not sure if i have gastroparesis or not . Im nauseaus all the time. I lost 40 lbs and gained 30 lbs back. No prokinetic drugs help. any suggestions.
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I have been dignosed with having diverticulosis and IBS but sometimes im in doubt because of the way it can come on so sudden. One hour I can be fine and the next hour I have terrible stomach cramps and vomiting bile IM at my wits end, can sombody help? it's not gullbladder (gallbladder) that was  removed years ago also the bile duck was taken out. thanks S.
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There was a new update on Hep C At Sonoma Co.CA on Sept 11,2000 Want to find the article
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There was a new update on Hep C At Sonoma Co.CA on Sept 11,2000 Want to find the article
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I to have suffered with gastro But I have a wonderful doctor and he has me on nizatidine, and domperidone and I have not suffered in the last 7years , all tho I have what he calls back up when the food goes down it will some times back up with bile only if I eat fruit or drink milk,pop,,If I eat slow I have no problem eating at all, but not thease foods that I said, also I don,t eat meat only some time if I am very relaxed, not to much mind you but I can and he does every thing he can for everyone I owe my life to him also, as I was taking perpulcid and ended up in death rowI was down for the count four times and he brought me back to the living. For breakfast I eat kelloggs just right and 1%milk its more water then milk one toastwith peanut butterand bottled,can,t drink tap water,lunch low fat cheese and a lettuce salad water dinner 1 patato brussel sprouts carrots spinishand any veggie I can get a hold of.I was 125lbs and now I am 140 so I am not loosing any more.as before I was sick all the time. now I ride my bike visit people and feeling great,still have some pain but Ive learnto live with it         (flaming-bear)
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Hi,

I have been suffering from gastroparesis for six years and have set up an egroup (like Listserv) for people with this to exchange information.  Sign up is free and located at www.egroups.com/group/gastroparesis.  If you would like to learn more about me before signing up, please check out my website at www.monkeygirl.atfreeweb.com.  I'm looking forward to meeting a lot of people with this, and I think the egroup will be really helpful so we can all learn from each other.  

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Hi,

I have been suffering from gastroparesis for six years and have set up an egroup (like Listserv) for people with this to exchange information.  Sign up is free and located at www.egroups.com/group/gastroparesis.  If you would like to learn more about me before signing up, please check out my website at www.monkeygirl.atfreeweb.com.  I'm looking forward to meeting a lot of people with this, and I think the egroup will be really helpful so we can all learn from each other.  

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i have a sickness of belching and upset stomach. I need to know is it gallbladder disease? I also have diabetes.
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For years now, I have been suffering with gastoparesis.  I too have problems with appetite, nausea, vomiting and diarrhea.  At night I sleep in Depends because I am terrified that My bowels will move without warning.  I had given up hope of finding a male friend that I could invite over to stay for the night.  Recently, I met a man that I really would like to eventually be come intimate with.  What can I do to ensure that my bowels don't embarass me? or how I can I tell him about my problem?  Maybe someone has had this experience and can advise me.  I am so lonely and depressed about how my health has turned out ( I am grateful to be alive).

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I have read with interest all of the posts here. I was diagnosed with gastroparesis last week and I am waiting for my domperidone to arrive. I am trying to learn all I can about this disease, and quite frankly, I find it a little frightening.

I did want to respond to a few questions:

1. Reglan side effects. Reglan can cause a syndrome called EPS (extra pyrimidal symptoms) which can include akasthesia(the ants in your pants/skin crawling syndrome),dystonia (muscle stiffening), and sometimes something called oculorgyric crisis, in which your eyes can roll back in your head and the muscles in your back spasm and arch up. Sound scary?

Actually, these side effects can be adequately controlled, by adding Benadryl or Cogentin to your regime of Reglan. Of course, some people are very sensitive to these side effects (I am) and still couldn't take the Reglan, regardless of additional meds. Also, did you know that phenergan can also cause these side effects as well.

2. About the gallbladder issue. I also had my gallbladder out and did not have gall stones, just the inflammation and sludge, which could very well have been contributed to this disease. I take long term antibiotics for repiratory infections caused by my GERD and had been on Biaxin (eryc family) for 8 months. My problems got worse when they changed me to Tequin.

3. My GI recommended a gastric emptying surgery (modified gastric bypass with the large intestine being fashioned for a new outlet for the stomach contents.)

I will wait until I see the results of the domperidone, before deciding on any surgical procedures.

Really like this site for all the archival info and I am glad to know that I am not alone.

Lea
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Please post & let me know how you're doing with the low dose of Reglan.  Do you experience drowsiness or any other side effects?
And do you have stomach pain, if so, does it help with that?
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I feel like my life is passing by to Istay in pain and keep
looseing wieght too.
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i would like to no why a person just bloats up suddenly,  full of gas, with lots of burps and feels really bloated
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To Sharon:  I was told this is caused by taking in too much air. Such as gulping, sometimes when you get nervous you do this.
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Some of you may have more than just gastroparisis.
I thought that is what I had as of a few months ago, but a visit to the Mayo clinic diagnosed me with autoimmune autonomic neuropathy.  This deals with a little more than just your digestive organs.  I have been living off Ensure products since February.  If anybody else has this condition please e-mail me at ***@****.  I have tried several different types of treatments and drugs.  If you know of any good support groups PLEASE let me know. I am 29 years old.  I have gastroparisis and plus many other symptoms that effect functions of other organs.  Some of you have some of the same symptoms that I am experiencing and just think that you have gastoparisis.  Please check in to neuropathy for your own sake.
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Approximately 1 and 1/2 years ago I had a very bad pain in my right side (upper at liver and gallbladder) This went on for about six months, My doctor checked me (GI Lower) and said I had divorticilious? Inflamed colon.  My side continued to hurt.  I asked my new doctor (I moved from Marietta ga to AL.) to check me. He found gallstones, however at times when I take a deep breath, it feels like my appendix did when they had to be removed.  My doctor suggested I wait until I turn yellow before doing anything.  Can Cancer, or infection, or another type of medical problem occur, if I had gallstones a year and one half ago?
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I had a change in my email address so wanted to put it back on... I have gastroparesis my dr does not know why this has been going on for about 6 years.. I have been to the university of gainesville hospital but they would not do anything because I was maintaining weight.  Well I just lost 13 pounds due to the nausea.. My medication are 60mg prilosec, synthroid  premarin corgard and back on reglan (which I hate) phenargan for nausea he just prescribed zofran. I have been on propulsid and domperidone  no help.. I am having alot of pain right now   my gall bladder has been removed as with all other female organs,, I have had ulcers in the past. My dr. just took a ct scan no results yet,, but I figure they will be normal.. I hate feeling terrible most of the time.. No one in my family understands, I am getting depressed. I feel better when I do not eat then I get to the really being hungry point.. I am careful what I consume.. I just need some support from whomever will give it to me.. My dr is at a point where he no longer can help me other than writing different presription to get me through my day.  I also have terrible constipation and bleed when I go to the bathroom just because of the hard bowell movement  and am taking Miralax for that.  So please help    Cheryl
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Hello. I have been on Reglan for about 9 months now. While it has worked wonders for me, it has caused depression. My doctor recommended Domperidone but I don't know how to get it as it is only legal in Canada. Does anyone know how to go about accessing Domperidone?
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Hello. I have been on Reglan for about 9 months now. While it has worked wonders for me, it has caused depression. My doctor recommended Domperidone but I don't know how to get it as it is only legal in Canada. Does anyone know how to go about accessing Domperidone?
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I am writing to all that have had to endure this horrible disease. Yes, disease. No one wants to call it that. My husband suffers from gastroparesis. He was diagnosed four years ago. But has been suffering for six years. We had to go to Hopkins for a diagnosis. My recommendation is if you already have a diagnosis, don't waste your time or money at Hopkins. They run a lot of expensive tests, but really can't tell you much. Don't misunderstand, it is the best hospital in the country. The best treatement will come from there. But there are no meds that truly help. No test results that will help the problem.

I give my hubby shots of phenegran at home when it acts up. Take him to the hospital when he gets too dehydrated. They won't admit him anymore. They won't give him any meds for the pain, which I see as the worst symptom. If we could manage the pain, it would go a lot easier. There are times that he actually starts vomitting because the pain is sooooo bad.

He also has night sweats which cause lost sleep, which in turn causes another episode. The mose odd thing, my husband is NOT diabetic. Go figure, they have no idea why he suffers from this.

I do sympathize with all sufferers. Although I do not personally go through what you do, it is horrible to watch, and one is helpless to do anything but watch.

We too have tried to go for disability. We had a Dr. Schuster, top in the field, from Hopkins sign off that he couldn't work. But the state of Marlyand seems to disagree with the good doctors diagnosis. Don't you love how a state seems to think they are better doctors that the best ones out there.

If anyone wants to chat or has any suggestions for pain management, please email at ***@****.

Good luck to all sufferers of gastroparesis
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I too, have been diagnosed with idiopathic gastroparesis. I am at the point now where i can not tolerate anything by mouth and my doctor simply gets annoyed as if i can control this. I have just come home from the hospital with no solution. I take domperidone 20mg qid. i am allergic to reglan(dystonic reactions), erythromyacin(anaphalactic shock) and cisapride is no longer available. I have not eaten more than 2 servings of jello and 2 gingerales daily. I have been on TPN in the past as well as j tube feedings with the most success coming from TPN. What can I do and where can I get help soon.
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Dear Arlene -

You posted a message bback on May 16 regarding gastroparesis being related to hormonal situations.  I had severe attacks every month right before my period for at least eight years.  Finally, after my doctors tried all different types of medications they put me on birth control pills to see if this would help to regulate my hormonal cycle.  It did!  I haven't had an attack in over four years now.  I would be very interested if you had any information pertaining to this topic.  I am also looking for research information so if I come across anything I'll post it.

Jeannie
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Dear Jeannine,
I have been having trouble keeping up my weight, too.  I'm at 104 and am presently taking xanax and Lotronex for IBS. Now I'm lightheaded and the floor seems to be moving when I walk.I'm home on a medical sabatical from teaching.  The doctors say it's caused by stress.  I feel like I'll never get better.  Have you any trouble with dairy products?  This is stressful and confusing.
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I also suffer from gastroparesis.  I am on domperidone and that seems to help some.  I am wondering if anyone or their doctor has considered pyloroplasty to make food move through their stomach faster?  I am going to the Mayo Clinic in two weeks and hope to get some information there about ways to manage this condition.  It is a bit depressing to hear how sick many people are and that there seems to be no help.
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I HAVE SEEN A SPECIALIST ABOUT THE GASTRIC PACEMAKER FOR GASTROPARESIS.  I WOULD LIKE REPLIES IF ANYONE HAS HAD THIS DONE.  I COULD NOT TAKE THE DOMPERIDONE.  THANKS,

***@****
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I have been dealing with gastropareisis for about three years, i am a 19 year old female trying to maintain a college education right now.  I have a very severe case of gastropareisis, or at least that is what doctors have told me.  I throw up any where from once a day to three times a day and then sometimes can go a couple days without throwing up but am usually nausious every day.  I also have severe pains that double me over and i am almost unmotile after them.  i have been on every stomach drug and other medicine imaginable.   i have taken the domperidone, reglan, acciphex, prilosec, prevacid, keflex, zofran, carafate, unltram, levsin, propulsid..... the list goes on and on and as you can see, you name it, i have more than likely been on it.  When i first started having trouble... real trouble, i thought it was from partying... but after the partying stopped, the problems went on and on.. i went to doctors, i had several tests ran and when i was 17, had my gallbladder removed because it would not ever show up on any tests.  i was accused of have eating disorders, anorexia and belemia because i was always tiny and kept getting smaller when everyone else in the family was "healthy."  I follow a diet which i have maintained a constant weight from...no vegetables with skins, no beef, no pork, no fattening dairy products and so on.  Yogurt has also be very beneficial... several doctors have always told me to eat yogurt that it kills any bad bacterias and aids in digestion and it is very easy on the stomach.  The best combination of medicine i have ever take is propulsid, oxycontin, acciphex and zofran... with the occassional ultram.  i take at least four tsp of propulsid four times a day, two tsp of zofran every 12 hours and always before bedtime and i take the oxycontin before bed time as well so hopefully i can sleep and not take the pain i get.. you see i do most of my getting sick through the night.  i have also heard about the pacemaker for the stomach and as a matter of fact the doctor i go to helped patent it but personally i feel it isnt something that should be considered for everyone since it is new on the market. My doctors have advised me to take disability but i have been reluctant and although they pulled me out of school, i plan on returning because i cant let something like this get me down... so i am going to go against their wishes and go back here soon.  it gets tough and for days at a time i dont go anywhere or out of the house... from my bed to the bathroom to the couch are how some of my days go.. but i am trying to tough it out.. and i am glad there are other people with this so i am not alone.
Maria  ***@****
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My problem sounds like those of Patty and Carissa.  I've been sick for over a month-started with severe nausa and green, stinky diarrhea.  I've taken so much medicine and nothing seems to work.  When I think I'm having a better time I get sick again.  It feels like most of my food stops in my throat and then I throw up.  Also, I have a pain in left side.  I try to eat but the only thing that has worked so far is oatmeal.
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I think I may have just personally e-mailed you. However, I too feel like I have gastroparesis. I have a wide open LES valve as well. I understand and feel just as you described, dear. How sad. I will pray for you tonight. I would like to hear any explanation of gastroparesis due to the fact that I can't afford much medical treatment.

Amy Jones
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Hi. I am writing on behalf of my father who has had Diabetes for the past 39yrs. He is 51yrs. old and right now is hospitalized with Gastroparesis. The Dr. informed him that his stomach is no longer working. He has been taking the medicine reglen which is not helping at the moment.They want to increase his dose to double the amount. We don't know where to turn right now as far as answers to the question Can his stomach regain the ability to work again or has the Diabetes shut his system down that there is no chance? If anyone has any information that could help our family PLEASE e-mail me at ***@****. I would love to hear from you. We need all the help we can find to try and make my dad feel as comfortable as possible and help him deal with this disease on a day to day basis.
                                      

                                   Thank You,
                                      Stephanie
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I have been suffering from a very bloated stomach for a couple of years. It all started with extrem burning sensation after an endosccopy it reavled I had ulcer and was presribed losec whioch I still take it has helped. I had tried every thing my doctor could write, cispride propulsid (WARNING this drug cause weight gain) A specialist presribed BENTYLOL it has helped a lot maybe thsi medication can help some of you guys.
CAN anyone tell me how to help in my problem of bloating it becomes so much tt at my times my clothesdont fit.
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Can anyone tell me if Gasoparesis is cureable.  My GI doctor seems to think this is what i have.  Did not due a test to confirm this.  Had scope for the throat and dr. found  bile in stomach and inflammation.  But had blood test for h-pylori which came back twice.    I have pain in stomach area, with belching and bloat.   Currently on Reglan 2x a day and nexium, 1x a day.  Would appreciate any feedback. Still do not feel that great.
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My 17 year old daughter has been throwing up since Jan 2001.  She had week long episodes in Nov and Dec 2000.  At first we thought a stomach virus, then appendix and then gallbladder because of the pain.  Drs could find nothing wrong.  They said she had irritable bowl syndrome and an eating disorder.  We have changed drs several times.  Her gastric emptying test came back positive.  She throws up several hours after meals and whole food and medication comes up.  The drs are still saying eating disorder, but she fits gastroparesis to a T.  I did not know so many people had this problem.  Does anyone know of a dr who is familiar with this disease in TX?  I am willing to drive ANYWHERE.  I am so tired of fighting drs and trying to get them to listen to me.  Also--any ideas on food that she can eat will be helpful.  Thanks.  Please email me at ***@****
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I dont know alot about gastroparesis. Everything I've read about it before tonight talks about diabetes which I know Idont have.I've had stomach problems for yrs. I'm 32 and had stomach problems in high school. I had my gall bladder removed at 22 (which i'm told is young for gallstones).I went to an internist just about  2 yrs ago.Endoscopy showed i had gastritis according to the internist. I've  been on Prilosec (20 mg 2x/day ) and reglan(5mg it was originally a higher dose but i started have problems with my central nervous system ) with no relief. The reglan does help with the nausea some  but i'm still nauseous everyday and the abdominal pain excruciating. I finally went to get a 2nd opinion and this doctor  immediately  said she felt with mt history it was gastroparesis and did the gastric emptying test you've mentioned. I won't have results for another few days. I guess my question is this . Can anyone tell me what the difference is between gastritis and gastroparesis? From what i can tell, they both involve the stomach emptying and they are both treated with Prilosec and reglan. Should also comment tnat I also suffered dizziness (and actual fainting)which you had mentioned but Dr's assure me the 2 aren't related.
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I read what you wrote about your daughter and her digestive problems and can sympathize.  I was told that I had IBS and suspected eating disorder.  I am 25 years old and have been suggling with problems since I was in 7th grade.  at the age og 18 I was diagnosised with Pancreatitis and at the age of 22 I was diagnosised with gastroparesis.  It took a lot of Dr. hopping and medical test to finally be correctly diagnosised but it happened.  I have been hospitalized for months at a time for malnutrition due to chronic vomiting.  The best advice is to check the major medical centers in your area to find a physician.  If you have insurance try to get the book of practioners from your insurance company to see if you can find someone.  I have had a PICC line for TPN to try to help with my nutrition problems, I now have a J-tube which is providing nutrition directly into my intestines to help live a "NORMAL LIFE".  I hope you find a solution to help your daughter, she is so young to be experiencing such problems.  Your in my prayers.  If you need any ifo or just want to vent e-mail me at ***@****.
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A related discussion, andrews71 was started.
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A related discussion, Gastroparesis was started.
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A related discussion, Gatroparesis was started.
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