Hey folks, I'm a long-time lurker on the forum but decided to register recently to post about the success I've had with homemade milk kefir since I started making and taking it 1 year ago (not that long in the grand scheme of things, I know but still).
A quick history my disease:
I got a jpouch 3 years ago (in my mid-thirties) after my UC got very bad after just being diagnosed with it just a year before. After getting the jpouch, I had a few bouts of pouchitis and generally had a continuous difficulty with mucus/liquid stool. About 1 year ago, I ended up with recurrent pouchitis and my GI wanted to put me on Cipro/Flagyl for 3 months (I had been on them for 1 month at that point and felt they were starting to lose effectiveness). I was also taking lots of align probiotics (tried VS3 equivalent as well without much luck).
Then came milk kefir:
Frustrated, I started looking into clinical trials for FMT (I'm in USA) and was all signed up for one in Canada when my mother suggested I try milk kefir (she had been using it to treat her osteoporosis). Now, I was NOT a believer in "home remedies" as I figured if Entyvio/steroids couldn't help nothing could, but I figured I would give milk kefir a try before I went for my clinical trial. At the same time, my GI told me to discontinue the antibiotics so he could scope me in a couple weeks to provide disease documentation for the clinical trial.
A few days before discontinuing the antibiotics, I started taking Lifeway milk kefir (without sugar, 3 cups/day, bought from local grocery stores) and immediately noticed a reduction in urgency/frequency/pain). After a few days, I received my "kefir grains" from Amazon in the mail to make my own and within a week I had my first batch of homemade milk kefir (which is supposed to be much more potent in antibiotics and strain diversity). Once I started taking this 3 cups/day, my symptoms drastically decreased even as I completely dropped off the antibiotics.
A couple weeks later, I went for my scope with almost no symptoms and my GI doctor said that I had almost no inflammation at that point and that the clinical trial wouldn't accept me because my pouchitis wasn't active.
Fast forward 1 year, and I've been making homemade milk kefir a couple times a week and drinking 2 cups a day (one in the morning, 1 at night) the whole time. It makes a huge difference throughout the day (immediately thickens me up). I still get lots of mucus/gas when I go 12 hours without eating (usually overnight) but the cup of milk kefir seems to immediately get me back on track the next day. I am not taking anything else and have been doing quite well for the last year.
I wanted to share my experience with milk kefir since it helped me so immensely when other drugs were failling and has me doing quite well consistently. It might be worth a try for you!
https://www.youtube.com/watch?v=wZoCBbYhdIU (not my video but how to make it - I use 1% milk).
As a side note, I went to Europe over the summer for work and was without my homemade milk kefir and started to get similar-to-pouchitis symptoms after a few days until I started it again. It seemed that the best milk kefir they had over there tasted more like milk than kefir and was probably pretty weak (no offense to any Brits!). I have also dropped off of the milk kefir for a few days several times since with similar results, so I just keep taking 2 cups/day and do pretty well!
Best,
D