It TOTALLY SUCKS to have this issue! I have only been suffering with it for about 8 months now, and like you was tested and treated for bacteria in the colon. I have a picc line and do rounds of IV antibiotics, so of course that is where the blame was always placed. I just figured out after months of keeping track on my own, it happens to me when I am in a flare. I finally mentioned it to the doc that manages my lupus and he confirmed that many lupus sufferers have this problem. He also said that he sees it so often, he has begun to call it a side effect of lupus!!! There actually is a positive side to it however . . . When my husband disagrees with me and says, "Oh Angie, you are full of @*%#!" I always say . . . You may want to re-think that statement! (I cant believe I am going to post this!)
A good friend will help you move, a GREAT friend will help you move a body . . . Let me know if I need to bring a shovel!!!