Female, 40s, obese but losing (down 40-50 lbs in 9 months or so)

TLDR: Medically complex with severe gastroparesis, second GI doctor confirmed today that there is nothing more that can be done and all I can do is keep fighting and be grateful I’m still alive (have mitochondrial disease, apparently the odds have never been in my favor). Am I really out of options and stuck living like this?

History: mitochondrial disease (labeled as mitochondrial encephalomyopathy), gastroparesis (diagnosed at least 15 years ago but symptoms go back further), intestinal dysmotility, diabetes (diagnosed about 8 years ago, well after the gastroparesis, last A1c was 6.0), dystonia, dysautonomia, juvenile onset systemic lupus, paraparesis, severe reflux (GERD), etc.

Medications: so many but stomach ones are Reglan (only as needed due to interactions with psych meds), Dexilant, Pepcid, Zofran, Compazine suppositories, Phenergan, Carafate, Bentyl (prescribed but almost never take), Miralax, Maalox liquid

• I receive palliative care, or some form of it. Not hospice level. I have a port and receive IV fluids daily plus can give IV Zofran.

My stomach symptoms have greatly progressed over the past year and I am quite miserable with them about 80% of the time. During a scope last year I still had large quantities of undigested food in my stomach after 16 hours of fasting. The nausea is persistent. The sudden gagging and retching until I vomit mucous even without any nausea (or warning) is frustrating. Waking up choking on refluxed stomach contents is terrifying, especially when using an auto pap for sleep apnea. But the pain and pressure in my stomach much of the time is my breaking point. My stomach becomes hard to the touch, the pressure has me begging to vomit or anything to relieve it, and the pain exceeds that of any gallbladder attack I had with a swollen, stone filled gallbladder with an EF of 7%.

I was told I am on every medication available and any surgical options or such are too high risk. The teaching hospital closest to where I live with a dedicated gastroparesis clinic agrees I am too high risk for any such interventions.

I was told that when the pain gets too bad I should take a good dose of my prescribed Valium so at least I won’t care so much about hurting. Am I really stuck living the rest of my life like this? Is this “quality of life”?