Specialist in Colorado
After waiting almost 6 months I finally saw the director of a university research hospital GI department. It was one of the worst experiences I’ve had so far. She said because my GES (from 6 years ago when my symptoms were much less severe) was close to normal by hour 4, despite severe retention up to that point, that means I probably don’t have gastroparesis. I was diagnosed by a doctor. I recently had an NJ tube because I’ve lost 20+ pounds and am severely under weight and can’t keep solid food down.
She gave me prescription for motegrity, which I did want, but told me to do pelvic floor therapy (which I told her I’ve already been doing for over a year) and to keep taking zofran. And see her again in 8 weeks to see if I continue to lose weight. I asked what happens when that doesn’t work. She said I might be a candidate for a gastric pacemaker but I’d need a repeat GES for insurance (fair enough). But she then mentioned that if my results were even slightly normal at any point, she’d remove my diagnosis and would refuse any treatment other than constipation management and CBT (which I’ve also been doing for years and told her that earlier in the appointment).
I’m just at such a loss and I feel so hopeless and insane. My last GI said I need a PEG-J because my health was extremely compromised from the gastroparesis, but that he didn’t have the skill set to manage that. All my other GI doctors have agreed I have gastroparesis but am too complex for them to handle. I was recommended this doctor from them. How could this have gone so wrong?
I guess I’m just wondering if by any chance someone here is from colorado and has a motility specialist or just GI doctor that actually cares and knows what they’re doing? I don’t care where in Colorado, I’ll drive anywhere at this point. Thank you if you read all that.