Idiopathic chronic gastroparesis with idiopathic orthostatic hypotension

[Theresa]

I'm a 21 year old female and about 3 months ago I was diagnosed with idiopathich chronic gastroparesis and then right after that with orthostatic hypotension, followed by intense pain in my mid-back, hips, and legs which my doctor tentatively described as nerve pain that debilitates me, could these all be connected somehow? My doctors all five of them have tried medicine, diets, and physical therapy to try and help me but they didn't work!  Now I have a Jejunostomy tube placed in my jejunum to provide about 95% of my nutrition, and Florinef for the hypotension though that doesn't always work, they're still stumped on the pain.  The doctors are still looking and running tests, but my insurance doesn't cover the enteral formula and that costs $5,000 per month.  Does anyone have any suggestions for resources or information that could help me?  I am tired of being bed ridden, I have two children ages 2 and 3 and husband that need their mommy and wife back!

[goofy]

I have gastroparesis, but it is not as servere. I have done some of my research and read that they have a pace maker for the stomach. It will help you move your food without taking any meds. I don't no what the pros and cons are of it, but you can ask your doctor's about it. I hope that this can help alittle.

[monkeygirl]

I am 23 and have had severe idiopathic GP for seven years.  I live on a j-tube as well for all nutrition and meds.  This is my third j-tube and I spent three weeks in the hospital when this one was placed due to complications.  I had to have an open procedure because my intestines were a mess from past surgeries, and a lap procedure to clean up the mess.  I have also been on an NJ tube and TPN in the past as well.  Please check out my website at www.monkeygirl.atfreeweb.com for more info on my life with a j-tube, GP info, etc and join my support group at www.yahoogroups.com/group/gastroparesis.  There are almost 300 members.  We are also starting a GP foundation.

Carissa