Winterberry, we have been following everything all the doctors say. Surgeon was absolutely amazing- although terribly complicated because rectal cuff so badly damaged (left over from 2.5 years earlier - we all knew, but no one thought to treat it while having ostomy). Anyway he worked his magic, it all healed and then transferred us to GI. We have a special place in his heart, so he still continued to meet us and check-in. Both GI and Surgeon put my day on Remicade to help cuff to heal. They just suggested FIBRE FIBRE FIBRE (Benefibre which we never saw results - so now she is eating Metamucil Fibre Thin Cookies - just starting out with 1pkg a day), LOMOTIL and IMODIUM (as much as she needs).
So we went from gradually increasing toileting sits from about 12 to 30!! We went to hospital and that very next day, we dropped back down to half (~18), and she felt BETTER. And the next day, again only about 12 toileting trips. But TODAY!? WITHIN 2 hours she had 5.
GI doc is wondering about lactose intolerance - dairy is a staple for my "vegetarian" daughter. We will MONITOR. He also agreed to test for SIBO (yay!) - they will call us with testing dates, hopefully soon. We are permitted to contihue using the Visbiome probiotics, but he wondered if IT was causing her diarrhea? I wondered if it actually helped - after reading many posts in this forum, we increases from 1 pkg a day to 3 for two days and them we had that really good day. I thought a couple days of Visbiome may have been responsible, but he thinks it might have made the two days we took it, worse??? So ingaveher one pkg last night and then this morning happened - lots of toileting. So I have mixed feelings.... ANY THOUGHTS ON VISBIOME connection?