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Colonoscopy, Vancomycin, and Entyvio, oh my!

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Ulcerative Colitis
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Posted 12/24/2017 3:23 AM (GMT 0)
Had a colonoscopy on Dec. 19. Despite being on huge weekly dose of Humira and MTX, doc found significant inflammation in the lower 35 cm. He feared I had an infection, so I was prescribed Vancomycin on the spot while we awaited stool cultures he obtained during the procedure. Labs were also drawn. Fast forward to yesterday and I get a call that all labs are completely normal and cultures are negative for infection. BUT I’m feeling 10 times better than I’ve felt in months after being on the Vancomycin for a few days. Coincidence? Placebo effect? Anybody else have a similar experience?

Also, doc wants to discuss moving to Entyvio since the Humira is clearly not doing the job. I’m a bit hesitant about this switch, particularly since I’m feeling better on antibiotics. My doc’s practice also has a large research department, so if I choose to switch to Entyvio, I would have the opportunity to participate in a clinical trial they are currently conducting regarding dosing recommendations for the drug. My doc is actually running the study. Any thoughts or feedback on any of this??
Posted 12/24/2017 4:50 AM (GMT 0)
Feedback: I started Entyvio infusions on March 29th of this year and just had my 7th infusion 2 weeks ago. I am in symptomatic remission. My colonoscopy in Sept showed no visual inflammation, although the biopsy showed an area with microscopic active colitis. I started the infusions a year after diagnosis, as I'd been flaring off and on most of the year, only responding to prednisone. So, it's worked for me. With that in mind, I'd definitely vote for you to go ahead and switch, especially with the study going on. I'd be interested in in data, should you join the study. Where is the study located?
Posted 12/24/2017 4:51 AM (GMT 0)
hmm. that is tough. I know in my case, I would want to believe all was well and good, but after stopping whatever was helping me, things always deteriorated quickly. I hope your luck is different.
Posted 12/24/2017 7:48 AM (GMT 0)
FG—glad to hear Entyvio is working for you! Here is a link to the study: http://trials.crohnscolitisfoundation.org/trials/NCT03029143. I guess my biggest concern is what happens if I fail Entyvio? Is surgery imminent? Is the Vancomycin really working, and if so, can this be a long term therapy?

NSSG—now many different therapies did you try before surgery? It’s been 3 1/2 yrs since my diagnosis. Thankfully, I’ve never been hospitalized. I think the huge dose of Humira helped somewhat, but obviously not enough to give me a good quality of life. The only other drugs I’ve been on are Lialda and rectals. I guess I’m just feeling like I’m getting to the end of my options, therapy-wise.
Posted 12/24/2017 12:45 PM (GMT 0)
How long will you be on Vanco, I saw a post where a someone is remission with it. I think maybe I should try it.
Posted 12/24/2017 1:43 PM (GMT 0)
Miracles—prescription is for 10 days. I’m seeing my doc on the 10th day to discuss treatment options, so continued Vancomycin will be my first option addressed. I researched last night and found info about patients who have been on Vanco successfully for 10+ years with excellent results and no visible side effects. I have to admit I’m somewhat hopeful this might be the answer I’ve been looking for. I’m trying not to get too excited because I have a history of trying new therapies (meds, diet, natural remedies, supplements, etc) with promising results in the first 2 or so weeks. Then I’m back to where I started sad
Posted 12/26/2017 3:32 AM (GMT 0)
Vanco is active against certain species of bacteria that are implicated in the development or exacerbation of IBD, like clostridium, strep, mycobacterium avium paratuberculosis, fusobacteria, and enterococcus. Especially when it comes to spore-forming or cell wall deficient bacteria, vanco can suppress them into dormancy.

If people find one antibiotic that keeps them in remission for 10+ years without any antibiotic resistance, they are very lucky.

I would encourage you to not draw conclusions from only 10 day's worth of vanco use. The deleterious effects of antibiotics increase the longer you are on them. Sometimes they provide initial relief only to have a recoil effect later.

The only way to know for sure is to find out which bacterial population is being successfully targeted by the vanco.
Posted 12/27/2017 12:51 PM (GMT 0)
Connor—thanks for that info. I was only tested for c diff. I’ll definitely ask my doc about the other bacteria you mentioned. I see you have MAP. I’m assuming some of the meds listed are antibiotics. How are you feeling?
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