Posted 6/27/2020 1:30 PM (GMT -6)
Posting this for awareness:
I have a J-pouch and there is a small rectum cuff from my colon left after surgery (1-1.5 inch width). Over the past few years, I have had complications and inflammations with it. I tried many different drugs and finally settled for Remicade which worked for me since 2016. In February 2020, my doctor pushed for this probiotic (Visbiome extra strength 900) claiming this can manage this small amount of colon (rectum tissue) left and I don’t need to do Remicade perfusions anymore. I read good reviews about it and agreed to take the probiotics even though I was still skeptical about it.
So I had my last shot of Remicade in February which would hold me up for 2 months and I started to take Visbiome immediately. Long Story short, It’s June 27th and I have pain and just did a pouchoscopy and my rectum cuff is infected with ulcers. Now I am on a heavy dose of Prednisone for 40 days and going back on Remicade again.
So basically as soon as the lifetime of Remicade finished (Sometime in April), in 2 months off Remicade, this probiotic couldn’t do anything for such a small amount of rectum left. This probiotic is so expensive and won’t do much for pouchitis (at least for me) I don't how it will work for people with UC and whole colon.
I would just recommend being cautious about your decision going on this probiotic and don’t just fall off for advertisements, what your doctor says (they get deceived by selling agents and what every they present to them) and please, please don’t stop taking your medications if you are on it for the sake of only using this probiotic (especially if you have a mild case UC cause it might get worse and ruin it all for you)