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
(***@****)

[Maria.]

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  ***@****

[margaret]

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,

***@****

[Jane]

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.

[dorothy]

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.

[Jeannie Maier]

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

[kate walsh]

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.