Hi grandmaof1,
Yes, I can relate to what you're going through. I'm 64 and have had my pouch for 2 1/2 years. I'm still waiting for the day when my butt is not the center of my life. In fact, I've never felt great--seems I've always had butt burn or butt pain, with a bm frequency that ranges from 7x - 12x+ depending on the day/diet/whatever. Every day is different even if on the same diet. I've tried to be proactive. I've had manometry, a gastrograffin and more recently defecography. I've had three pouchoscopies, four months of pelvic floor therapy, plus regimens of Cipro, Flagyl , Xifaxin, Canasa and Cortifoam. I've lost 25 pounds since I'm not eating snacks, sweets, fried or spicy foods, limiting carbs and have cut all alcohol. I never get a good night's sleep. What seems to work best for me--at least for the moment-- is Canasa (generic), a 30-day regimen of Cipro, and one packet of Visbiome around noon to space out between the Cipro dosages. Again, not perfect, but I'm not miserable either. Or maybe it's just because my misery tolerance is higher than normal after so long at this. It's tiring and frustrating but I'm not giving up finding or learning a better way to go (pun intended).
Best of luck to you!
John