Posted 1/27/2015 11:00 PM (GMT 0)
Dear UC-listers,
I have UC, diagnosed in 2013 as proctitis, and upgraded in 2014 to UC. I have not managed to get into remission despite starting with mesalamine suppositories, then enemas, then Apriso, then 40 mg of Prednisone (I'm on a taper, now at 15 mg). Next option is remicade (I need to have some surgery done so the choice is remicade instead of humira, once the surgery is done I guess I could switch to humira). I am fighting the idea of remicade/humira. I am also working with a TCM practioner.
Recently, I developed cellulitis on my shin and have been on 3 days of Keflex, upgraded for 5 days on clindamyacin, 2 rounds of IV Vancomycin, and now on 10-day course of oral Doxycycline (currently finishing day 3). Cellulitis finally beginning to respond slowly.
My layman's brain has been churning away to find a silver lining to this cloud and has come up with the following possible plans, which I would love your collective wisdom to weigh in on:
My assumption:
I have wiped out a huge swath of my gut microbe and am as close to a "blank slate" as I'll ever be on both the good and bad. Hence I have an opportunity to repopulate the gut with "good" bacteria (in the right combination) without as much resistance from "bad" bacteria.
To accomplish this I'm thinking:
1. Try to get/do a FMT as soon as I'm off doxy. Difficulty being I think the FDA doesn't allow it except for c. diff patients, which I am not. I really don't want to undertake this myself (particularly as my only local friend whom I think would be a good donor is my boyfriend... oh the humiliation...) but will if it is really a good idea. I'd much rather go through medical channels, even if just to purchase the donor stool that's been screened, particularly as I feel time is of the essence. I have written to my GI asking if he can do this, but if he says no, should I proceed?
2. Start/continue with a regimen of probiotics. I have been taking VSL#3 DS prescribed by my GI. I am continuing that in between doses of doxycycline. I have made my first batch of SCD yogurt with Stonyfield Greek yogurt as the starter and have tried it. I'm planning to continue that interspersed between the antibiotic doses too. My idea is to start a major blitz of repopulation as soon as I stop the doxy. I know this is a tricky field, but if you are willing would you suggest which types of bacteria you think would be best? I'm thinking of treating from both ends by using my current stash of mesalamine enemas with probiotics mixed in (currently thinking that I'd use one of my precious VSL#3DS packets per enema). SO, what other probiotics/probiotic mix would be recommended?
I will admit to being close to the end of my energies to think of and execute possible "cures" that are not the mainstream -- in this case remicade. This forum has been a lifeline for me. I would be energized and very thankful if your collective wisdom could be turned my way for a little bit.
With thanks in advance,
dragonmother