Oral Vancomycin

I just wanted to share some information that might prove helpful for others.  Our son was diagnosed at 15 with severe Pancolitis.  Could not get below 20 mg of Prednisone, tried Remicade at its highest dosing along with 5-ASA and still his colon worsened.  It looked like the only relief would be surgery.  We tried Fecal Transplant at Boston Childerns hospital with nine follow up home enemas, but still no help.  I haad found a research paper abstract about a docotor who had six pediatric patietnes all headed for surgery that he put on Oral Vancomycin as a last ditch effort to avoid colectomy.  Our son's doctor whole heartily agreed to try it and within six weeks we could get off Prednisone and within that time all symptoms were gone.  he has been on oral vancomycin for two years now and we just had a colonoscopy and the doctor could not believe that there was no sign at all of the disease, weven the pseudo polyps has gone.  Dr. ken Cox out in Stanford has used long term oral Vancomycin for children with Primary Sclerosing Cholangitis and he believes there may be an immunomodulator function of the Vancomycin that is not clear.  The doctor who did the orignial research that I found the abstract for  wrote me that it either works like magic or not at all.  Our concern about antibiotic resistant infection has been somewhat reduced by the data from Dr. Cox's long term treatment of children for over 10 years, with still no incidents of such infection.  It has greatly helped our son and I hope it can help some others.

Thanks for telling your story. I think gut dysbosis certainly has a lot to do with UC and that in some patients, like your son, the antibiotics may be killing off some bacteria, causing your son's gut bacteria to come back into balance. I personally prefer that theory to the Vanco having some kind Immunomodulator effect, unless you want to label it all the same thing. If C-Diff is not a problem I think that this Vanco thing would only work on small subset of UC cases but it is certainly worth trying, especially before the surgery option. Hope you son stays well. He may have to do this Vanco thing for the rest of his life but he may be able to do it as some kind of maintenace therapy, like maybe taking it a few days a week instead of every day.

I am dealing with the very same thing! I was put on Vanc for c-diff and after the c-diff was gone, i felt better but get much worse when trying to wean off the Vanc. My GI started me on cimzia and Azathioprine but everytime I try to wean off the Vanc the symptoms come back. I would stay on this indefinitely but am worried about cost and also worried bc Vanc is supposed to be hard on the kidneys. Have you heard that?

My gastro also supports long term vanco use and has patients who have been on it for years. He wanted me on it indefinitely but i had such bad neuropathy from it that i couldnt stay on it. It definitely helped with my c diff though.

Vanc, I am waiting for a refill on my Vanc now. It has helped me although i was hoping I could use it as a bridge but now I am considering staying on it long term. The azathoprine has me completely miserable and the Cimzia is not working so I may have to suck up the cost of the vancomycin and stay on it long term, as long as it continues to work.

Thank you for sharing your story.  I was diagnosed with left side UC, which after 7 years progressed to pancolitis.  Since I have had the pancolitis, the only thing that has brought me true remission is antibiotics to include Cipro (can no longer tolerate due to rare side effect of tendonitis), Xifaxan and Clarithomycin.  I have not used Vancomycin, but it is certainly something to consider and I will look at the supporting data you provided. Please keep us posted of your sons progress.  I was in my late 30's when diagnosed and have always felt sorry for kids that develop this disease. 

On the brighter side, the collective medical thinking about Chrons and UC has come light years since I was first diagnosed.  At least big pharma is coming out with new meds to treat this stuff and the surgerical rate is declining.  One good website to explore is IBDwatch.com.  It is updated weekly and managed by a med student who has Chrons and is pursuing a career as a GI doc.

Current meds:  just back on Clarithomycin, Coritfoam, Pentasa