For me the fact that most days I get by with 0-3 bowel movements a day (granted it might be 5 or 6 or who knows what if I didn't take any prednisone for flaring), oftentimes formed for 1-2 week stretches, makes it harder for me to jump to surgery, because I would be trading 0-3 for 8 or 10 or whatever (4-6 according to the Colorectal surgery advertisements which sounds like hogwash compared with what I read about on j-pouch.org, but I plan to become a Kagel Exercise olympian if I can help it, lol). For me it is constant pain, not frequency or even urgency, that is my nemesis and reason for starting to dream of surgery. Plus, I can relate to the family issue... I hate being forever never wanting to go travel on vacation anywhere interesting, or eat out more, etc, because it is just not enjoyable with the sheer nagging pain. As a male, though, the idea that one will pooh as much as one now pee's is not that encouraging, because we men have the luxury of peeing when standing like we are cars getting gas at the Indianapolis 500, as opposed to having to go into the neighborhood garage which is what the sit down seems like. But alas, we can't have it all. If I can't get off pred without flaring, my decision is obviously made, pain or not.
Pancolitis ~20 years, once had a full med-free 10 year remission,
but flaring/simmering on and off for years, allergic to all 5ASAs
15ish mg pred,
100 mg Imuran TCM
Probiotics (PD, Cust.Probiot., Culturelle, VSL3, etc), DMSO,
boswellia, fish oil, many vits/minerals
Lower-carb version of Specific Carb Diet (SCD), Remicade newbie