VSL#3 enema?!

A little history because I don't post often. I've been in a major flare since July 2013. My sig line has most of everything I've tried, though I'm sure I've left some things out. Since I started on Remi and Aza and 50mgs of pred in August, I have seen a big improvement. I got down to about 7-8 bms in 24 hours. Not exactly great, but a welcome improvement from 20+. I'm currently tapering the pred 5mgs every 2 weeks.

Now, about two weeks ago, dropped from 20 to 15 on pred. The same day, I had a pretty rough day. Up to around 10 bms. I wasn't terribly concerned thinking maybe it was a bad day. The next day was the same, then the next. I started feeling lousy again and started seeing more mucous (never been a big bleeder). I became pretty concerned that I was slipping and that the pred was what had been working this whole time. But, this has also been the longest I've gone without Remi (7 weeks) because I've been on the loading dose up until now. I wasn't sure if it was the pred or the Remi. Anyway, last week it dawned on me "what if I put VSL in my Rowasa"? It's essentially the same concept as a FMT, right? Maybe not as much bacteria involved as a FMT, but still... I did some research and saw where it has been tried (should have known) with varying degrees of success. I decided to try it. I first did it last Thursday. Just half a sachet per enema (mainly because i was having a hard time retaining my first enema of the night and didn't want to waste the vsl - i sometimes have much better luck with the second enema). First night - major rumbling all night long. The next day, not much difference. I did it again Friday night (was able to retain until morning) and I went from 9 in the morning until 11 at night without one bm. That is by far the longest I have gone since having this disease. 5 hours was probably the longest before that. Sunday i was back up to about 7, but today I have had 3 all day. This is a major improvement for me.

I'm reluctant to say that I'm onto something, but at the same time, i have a hard time thinking it's just a coincidence. These last few days are the best I've felt in over a year and I'm on the least amount of prednisone I've been on in several months (tapered down to 10 today).

Sorry for the extremely long winded post, but I just wanted to share my experience and see if anyone else has tried this recently? I'll share my progress over the next several days/weeks if anyone is interested.

PS- I started to feel like I was going into remission a few months ago when I was on Cipro/Flagyl for possible c-diff. Two days after the docs took me off those, my symptoms came back. Since then, I've had a strong feeling that my case was somehow bacteria related.

Would all depend on rowasa ingredients. Not sure how viable the bacteria would stay in the solution. That would be first thing I would research. I know I used some different probiotics in straight up saline solution, and tried distilled water too.

Did you have any luck with yours Dr-A?
I've done it 5 nights now and still doing great. Two bms this morning after waking up, but haven't had another one since.
I'm scheduled for my next Remi infusion this Friday, but strongly considering pushing it back and seeing how this plays out.

Thanks! Yeah, I'm sure I'll go ahead and get it done. It's just crazy and confusing that after almost a year and a half, I'm all of the sudden doing this good. When even just a week and a half ago I had taken a step back. It probably makes more sense to lay off the VSL enema for a few nights and see what happens.

Jacket fan - just two questions: 1) for a vsl enema (solely without salofalk), how much water would you put for one sachet of vsl? 2) do you use plain water or distilled water? Thanks :)

thank you so much Jacket :) i'm sorry to hear your symptoms have worsened but uc means ups and downs so i keep my fingers crossed you recover asap !