Gastroparesis

Jeannine

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
(***@****)

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Juli C.

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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Jill

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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Jill

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Cheryl Anderson email [email protected]

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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Barbara Porter

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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chris

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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