UC feels like it's almost in remission after two weeks on Vancomycin

I was talking about this in one of my other threads about the microbiota, but it got too convoluted and I think people stopped following it. But I feel like this is super important, so I'm really going to stress it.

I've been in an almost continuous flare (my first flare) for a year and a half now. Tried all the mesalamines, prednisone, Remicade, nothing worked. However, despite the fact that I keep testing negative for all infections, Vancomycin and Augmentin seemed to make me better.

I went to Mayo Clinic two weeks ago. At this time I was having severe, uncontrollable diarrhea upwards of 10x a day and 4x a night every single day. I was started on a course of Vancomycin 250mg 4x daily as a proof of concept.

At 1 week my BMs turned solid. I was still having significant cramping, but my urgency had vanished and my left side was calming down. Still had bad cramping in my right side. However I was seeing improvement on a daily basis.

At 10 days my left side basically stopped playing ball. When my right side would cramp and force everything along, my right side didn't complain. I began being able to pass gas, albeit with a bowel movement following.

At 12 days I began being able to pass gas without a bowel movement behind it. Still some cramping associated with it. My upper right side began to calm down

At 13 days my lower right side began to calm down.

Today it's been two weeks. My lower right side barely began to cramp once this morning and immediately stopped. I have completely normal gas with zero cramping or urgency associated with it. My entire colon feels restful. It feels like I took Immodium.

You guys. This is big. This is not some incidental thing. This is probably not the case with everyone, but clearly my UC is 100% caused by bacteria. Whether it's pathogenic or dysbiosis, I don't know. It has Mayo Clinic baffled, but they cannot disagree with the results. I do know that, based on my past experiences with Vancomycin, it will probably return about a week after cessation though. My doctor has extended my Vanco a third week since I continue to improve on a daily basis, just to see where it takes me.

Post Edited (Canaveral) : 8/4/2017 10:48:11 AM (GMT-6)

Have you ever done a uBiome stool test? Just wondering how wacky your microbiome makeup really is. It only goes down to bacteria families, but still has some useful comparisons to what's norm. There's some free for IBD patients thingy going on. I've pondered taking this but never have, yet at least. /shop.ubiome.com/pages/picnichealth

I've been following your other thread as well, and it is great to hear you found what seems to cause your UC. Have you ever tried to use any natural antibacterials, such as oil of oregano for example? It seems to help some people with UC. Also many herbs used in TCM have antibacterial properties.

Hey Canavarel,

I thought of you when I read this study. For these folks it seems that staph is the offender, and once that clears up then the UC symptoms do as well.

https://bmcgastroenterol.biomedcentral.com/articles/10.1186/1471-230X-5-28

Interestingly I have had a case of chronic sinusitis the entire time I have been in this current flare (going on 20 months) and guess what?

As my UC symptoms have dissipated (B and M) so has the sinusitis !!!

Seriously, this is nuts. I have been having to carry around a tissue every day 24/7 for so long that it just blows my mind that now my nose doesn't run. Very occasionally it will, like maybe once every 2 or 3 days as opposed to constantly.

I am wondering if this study isn't a perfect example of ME.......plus on top of it, my rosacea (eyes and cheeks) may be related as well. Very interesting angle anyway.

Maybe all of the mesalamine, probiotics, natural antibiotics have knocked "the infection" down?

Of course we are still stuck with "why does our immune system react to these bacteria and other folks don't?".

yeah my symptoms usually start returning about a week after cessation.

I have had serious flares 3-4 times over the past 9 years and each time a short term use of antibiotics (Flagyl) jump-started me into remission. I have been able to maintain remission for months or even years between flares by watching my diet for triggering foods and taking probiotics, (pills, yogurt, kefir, etc.) and other supplements such as curcumin and fish oil.

Probiotics are ‘good guy’ bacteria that help keep the bad bacteria away. The antibiotics kill the bad bacteria in your gut and that is probably why you experience remission. But abx also kill the good bacteria and that can cause problems. (The Flagyl I was taking has been known to eventually cause C Diff infections later on).

Antibiotics can have side effects and shouldn’t be taken long term. Hopefully you will find a way to maintain remission for longer than a week after stopping them.

cupcakespinkgal said...

Oral Vancomycin is being used to treat pediatric PSC patients who also have UC. The patients PSC and UC have both gone in remission while on OV, and not just symptoms, pathological improvement in their livers and colons.

Cupcakesgirl, I don;t want to hijack the thread, but if I started a thread on PSC could I ask you a couple questions about symptoms and diagnosis? thanks.....

I am finding this topic really intriguing. I guess mesalamine also works as a anti-microbial and an anti-inflammatory, so I wonder ion something very similar happens with IT too?

^^^ That is really amazing. What a smart drug.....I wonder though, if it has a similar effect on the good guys? also, I wonder if they know the exact strain of bacteria and if they have mentioned in any other literature?

Another reason to keep on supplementing with probiotics along with it.....

Why not use Vancomycin indefinitely?? My doctor offered this to me as a treatment and has other IBD patients on it for longterm treatment. Obviously, it costs a fortune but if your insurance covers it and it helps you, then might as well keep taking it.

Very good informations, thanks everyone!

Canaveral, even though our stories are different, everytime I read you, I fell like our disease act similarly.

On my last flare, I was such in a bad shape that my doctor put me first on pred, then Stelara and Vancomycin while I was still on Remicade. We were trying to avoid a surgery. I'm so glad he listened to me and decided to put me on Vanco even if I tested negative for everything. Pred work for me, so a lot of symptoms were under control. But I definitely felt better after I started Vanco. For example, my night sweats stopped immediately. And I was feeling more human in general.

Now am doing better. But I still ask myself those questions : Did I really had some bacteria and Vanco treated it? Do I still have this bacteria but Stelara is suppressing my immune response? Was there no bad bacteria and Vanco kill everything (my colon was sterile) which calm down my immune system until Stelara worked?

Vanco is pretty expensive. I still have about 2 weeks of it at home and it's very reassuring.

Keep us post, very nice that Mayo is giving you the medecine that works for you!