Scope results -ugh

I had my 3rd colonoscopy in under a year Monday, and they also did an endoscope this time. Endoscopy looked fine, but it didn't go very far into the small intestine. Unfortunately he said my colonoscopy showed I have 5%-10% more inflammation than I did two months ago at my last colonoscopy, when I was told that my inflammation was inactive.

However the fact still remains that even when my UC was inactive, I was still having the exact same symptoms I've always had. I'm convinced it's a bacterial issue.

GI made a deal with me, that if I don't feel better three days after my next Remicade infusion this coming Friday, I can try Vancomycin again and see if it works like it did the other four times. More or less as a proof of concept, because he has no idea what's wrong with me.

I really, REALLY hope the Vanco works, because to me it's proof positive that something bacterial is causing my issues. But at the same time, we'll have no idea what it is, because I test negative for everything.

I also have an appointment at Mayo Clinic coming up on the 17th. Really hoping they can fix me. Uncontrollable diarrhea 10+x a day is a horrific way to live, and after a year and a half of being this way every single day, it's really beginning to weigh on me.

Post Edited (Canaveral) : 7/5/2017 9:06:07 AM (GMT-6)

Yes that's correct, I had no inflammation last scope 2 months ago (with the exception of some minor inflammation in my rectum), but I do now throughout my colon. I can't recall which degree he called it, but it's between 5%-10% more inflammation than last time.

I hope to get biopsy results tomorrow.

I've had a gazillion stool tests, all negative. Nonetheless, Vancomycin instantly fixes everything for me.

Never had liver enzyme tests.

I know you are focused on an infectious agent, but abx also manipulate commensual bacteria, as well as cause some people constipation. It is possible that there is no "bug" you can kill and be done. It is possible that the abs is acting as a gut microbe therapy, and you need to find some probiotic combination for maintenance.

good luck

Post Edited (DBwithUC) : 7/5/2017 8:13:25 PM (GMT-6)

I think that there are a couple barriers to re-establishing a good gut flora. One, if it's overrun with bad bacteria, introducing the good may never take hold. Two, it may be difficult to establish a good flora with inflamed cell walls. From what I've read, you can't eat what your butt needs, that only FMT would deliver that. This is basically because all those bacteria you are eating are stomach friendly dairy based bacteria. Your butt wants super angry aggressive butt bacteria that would make you deathly ill if you ate them. Of course that's a simpleton's theory behind FMT. However if you're inflamed and trying FMT, the bacteria might not find a home they can live in.

There are of course a million other variables at play, some known, some unknown, that I haven't addressed either.

Think long and hard about what DBWITHUC is saying.

You've done this four times. And, it hasn't cured your colitis. Will a fifth time ever cure you? What will you do this time that is different?

Is it possible that each time you do it, your gut biome comes back worse? That the bad guys that aren't killed will be the only ones remaining in your gut? And, that those super antibiotic resistant bacteria may dominate your gut more each time you repeat the experiment?

Maybe you can't figure out exactly what prebiotic to take. It's all just guesses for now.

" Fecal transplants in the US are limited to recurrent C Diff patients only, so I've already had my one shot at that"


one word = DIY

I agree with TroubledTurds. If you feel confident that FT will help, and the only thing holding you back is availability, you might want to find your own safe donor and do it at home. I never felt like it would solve my issue personally, so I didn't bother, but I probably should have.

I'd get on a clinical trial of FMT for UC, as there are many ongoing right now for it. Less risk that way as they handle the screening of donors and provide you with a safe and effective means to try it. There's a number of them that are on going:
/clinicaltrials.gov/ct2/results/map?term=fecal+microbiota+transplantation&cond=Ulcerative+Colitis&map=

It seems biologics are in the exclusion criteria for those studies.

As you currently have active inflammation, and I'd wager UC is the cause, then have you switched around your medications at all? Are you only on remicade? Perhaps you need immunomodulators (6MP otlr imuran) also or anti-inflammatory mesalamine (lialda or rowasa).

Canaveral said...
Well IF it's a matter of dysbiosis and not pathogenesis, until somebody can give me a road map for re-establishing the proper bacterial colonies, I don't have much of a choice.

This has been the question that has caused my head to nearly explode. What good does it do to re-establish them, if our immune systems annihilate them anyway?

My partner has offered to share poop. Never sick, but never firm BM's either ( a weird mushy texture) so I've always said never mind. Plus there has been times of severe urgency and I am used to constipation. And now I see this anyway :

notsosicklygirl said...
but I've heard a better donor is someone you do not live with.

I wonder if there is a donor site somewhere? I guess you could look at the questionnaire to procure the necessary information from this site?

http://www.openbiome.org/stool-donation/

I think that's what I'd personally do if I decide to go the DIY route......I am just worried about introducing the wrong spectrum of bacteria and getting worse instead of better. In much the same way that not all probiotics agree with all people.