Wow, 17 years of dealing with this is a lot! I can’t imagine it.

I am taking 1000 mcg sublingual of B12 daily and will indefinitely. My neurologist is overseeing my treatment and progress. I took injections last year when first diagnosed, but was not instructed to continue, so I never got my deficiency restored. Anyway, I had a normal colonoscopy in 2020, except for some diverticulosis and internal hemorrhoids, that didn’t need treatment. I had no idea I had either. So, none of the doctors really had much to offer me, except the standard advice of eating plenty of fiber, drinking plenty water, exercise, etc. Even prescribed meds only worked for a couple of days. Miralax worked ok, except I didn’t like having jello consistency in stools. I have another colonoscopy scheduled for next month, but may postpone it, since I’m doing so much better. I have discussed that with the main gastroenterologist.

I read where many patients with IBSC or CC get all kinds of tests, like scans, motility tracking, etc,, but I had none of those. I don’t know why. I have had 2 anoscopies that were normal.

Have you had extensive testing?

My mom has had IBS fluctuating between diarrhea and constipation for most of her life. Currently, she is really regular. I have no idea why. She has also had severe B12 deficiency and takes injections due to inability to process it. Her regularity coincides with when she started B12 injections.

It’s good your levels are normal. I can understand why you are so frustrated. IMO, it takes a curious, diligent doctor to help figure out how to help patients with these types of symptoms. I hope you’ll get some feedback around here. Good luck with your search for help!

Have you tried Mayo Clinic?