Hi, thought I'd chip in re: meds. In the US, a GI Dr can set you up to get dimperidone from Canada under a humanitarian exception. I hear that many clinics dont bother with it, but I was supposed to get it all going. Of course my GI Dr forgot. My three month follow up is 2 months past due and still hasn't been scheduled.

I've prescribed myself probiotics, but I don't know if it's worth it. Does it cause more or less pain?

I've been on an almost completely liquid diet with forays into soft food that always result in pain. I dont want to eat anymore. No matter what I injest, there is always pain.

I "eat" once or twice a day, well under 1000 calories a day (probably closer to 700 or so). Yet I am gaining weight. The GI doc's dietician blew my concerns off (she may not be the brightest bulb in the building - she seemed to know very little and basically handed me the GI diet protocol from a different institution. It's a diet built to help one develop diabetes. She said I shouldn't lose weight on a gastroparesis diet (it felt condescending to me and completely dismissed my concerns). My BMI is very high, and it all just results in mixed messages. Get gastric bypass surgery (a hard no), but don't diet,etc.

I have been fighting heart failure for 10 years, finally had a significant improvement in my heart (yay, since my mother and baby brother just dies from heart failure - we carry a gene in the family line.

Since gastroparesis often causes diabetes and heart failure due to malnutrition, I am scared. I've spoken to 4 or 5 registered dieticians (multiple sources), and have come out of it with no direction. Lots of contradictions.

I feel lost in the wilderness. I grow weaker by the week but I'm still fat, and I don't think I'm believed. I don't know what to do. When I look up gastroparesis mortality rates, they seem significant to me.

I live near Portland, Oregon. We have awful medical care here if your situation isn't easy. I've been turned down for care because I'm "top complex, which sounds worryingly close to "good luck with your slide into death."

Where do I find hope?

Thanks for listening.

Cheri