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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
(***@****)
99 Responses
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Avatar universal
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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A related discussion, Gatroparesis was started.
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A related discussion, Gastroparesis was started.
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A related discussion, andrews71 was started.
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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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Avatar universal
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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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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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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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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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 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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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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Avatar universal
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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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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Avatar universal
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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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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Avatar universal
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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Avatar universal
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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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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Avatar universal
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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Avatar universal
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 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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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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Avatar universal
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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