Gastroparesis Online Support Group

Hello Friends,

I was diagnosed w/this "Hell of a Disease" (As I call it!) a little less than a year ago & since that time my condition has steadily gotten worse! In the last 10 days I've had my 2 worse attacks yet! The 1st one lasting a little over 28 hours & this last one for 25+ (hours!) I'm at the end of my rope, I don't know what to do? If ANYONE knows of any (new) "Medicine/Treatment" please LMK! I hope everyone is doing as well as can be expected.

All my best...

Ronny

P.S. To anyone who's been recently-diagnosed & needs any info or just someone to talk to I'm here for ALL of you 24/7!

Post edited by: RonoftheDead, at: 01/24/2012 03:00 AM

Hi Ron. I'm sorry to hear you're doing shitty. I had 3 really rough weeks recently as well and had to be hospitalized because I was dehydrated and starving...I know what you're going through and it sucks!!! I thought you were going to have your stomach removed? What happened with that?

The Doctors refuse to do it except as a last resort...I'm just about there!!! I'm sorry to hear about your problems as well! This disease is a sick joke!!! I hope you're doing better my friend.

That sucks. It sounds like you're at the end of your rope. I am going to see a GP doctor and ask for Bottox or pace maker and see what he says because this nausea is driving me insane. I woke up in pain today. I had real food yesterday! How dare I? Right?! Stupid GP!

Post edited by: Plo83, at: 01/26/2012 10:33 AM

I feel for you my friend this disease is nothing short of a "living-nitemare!" I hope you start feeling better real soon?

Are you taking domperidone?

General remark: please describe your symptoms on the forum. Don't just say, you feel terrible, the last 24 hours etc. what happened, N & V, pain, what? what are you on? What works, what doesn't ? What surgery, intervention, botox, "pacemaker"--what?

Hi Ronnie! I hope you are feeling better. I'm new to Gastroparesis. Mine was caused by a surgical error, my Vagas nerve was severed. Like you I have horrible days and days that I can tollerate this disorder. My symptoms are severe pain in the stomach and where my gallbladder used to me, extreme bloating and fullness along with gas and nauseau. I'm finding my options for treatment non-existent. I've been prescibed zofran for the nauseau. I was taking raglan and the doctor took me off it since there was no benefit to me. The pacemaker option along with botox injection is off the table since insurance will not cover it (considered experimental). I've been advised my case is severe. I'm waiting for a referral to a larger facility with a motility clinic and physician that specializes in gastroparesis. What has helped you through your bad days?

Hello Lisa...

I'm at the end of my rope!!! The doctors are fianly realizing just how severe I have this! I'm supposed to hear from a surgeon this week about totaly removing my stomach! It's the only option left for me other than a feeding tube. I hope you find some answers (& relief) VERY VERY SOON!!! I know just how much grief this disease causes!!! LMK if I can do anything for you?

Please keep me posted on your progress! My prayers are with you. I too am frustrated with the lack of options.