I have mitochondrial myopathy as my main diagnosis with colon failure/solitary ulcer disease as a secondary

I'm so sorry to hear that but also thank you for sharing, it helps me have an idea of what to look into

I’m in the process of whole genome sequencing, if they can’t find a main cause, push for a genetics appointment.

That sucks, a good doctor should be like a detective and help to find what’s wrong and treat it

Thank you both, I will be looking into genetics asap because at this point they aren't testing or looking unless I land on the right thing and ask for it specifically. I basically have to try being the investigator and present them with my guess. Every test regardless of the sample type shows evidence of inflammation throughout my body and still they say "everything looks fine" the most proactive response I've had was "well it is elevated... we'll retest in 4-6 weeks"

I went to almost every doctor in my city and even reached out to the Mayo clinic but they wouldn't take me because I'm too complex. But the Cleveland clinic took me and that's where I found some answers at least. Good luck 🤞

I recently started rectally bleeding, might sound scary but it's a blessing in disguise it made my doctor's listen after years of being ignored. I have elevated calprotectin and a positive fobt. I have a colonoscopy next month. Seems like I may be getting an answer soon.