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

John, 

Thank you for replying back.  I feel like you do but I am also just tired of it all.  I do have good days.  I think I might have found a connection with my recent flair up.  Sometimes I get sores inside of my nose.  Just out of the blue.  And sometimes on the gland of my neck will swell.  I’m wondering if when I have something in my body go haywire if that is not causing my pouch to have issues also.  It’s just a thought.  I know it’s all about inflammation.  So that was my thought.  I am so sorry for all you are also going thru.  I won’t have a defecography.  I just don’t think I could do that.  So I will continue on with my Canasa and when I have bad days I just rest and take it easy.  I will say I don’t go to the bathroom anymore as much as you do so that should get better for you.  Do you have a bidet?  I have a spray bidet.  Best thing ever.  At the beginning I used Dibucaine for butt burns and discomfort.  There is a generic for it.  I do agree it’s tiring and exhausting.  The worse part I hate is being so tired.  But I am alive.  And still trying to go on with life like you.  Please keep in touch if you find anything that works for you and might help me.  Thanks for your support.  Things will get better for you also it just takes time.  

Thanks, I appreciate the offer to stay in touch. Stay well!

The only thing that has worked for me is daily Cipro 250 mg morning and evening. I became very allergic to all UCdrugs..canasa pentassa sulfa salazine etc.