Hi Jackie. I'm so sorry you're going through this. Your story sounds so much like mine. Oh the accidents! It was awful!! I, too am 43 and was diagnosed with UC in '04, pancolitis by '06 with a colon so scarred by the trauma of the explosive and uncontrollable "D" that even if remission ever came, it would not be much relief. I had a lot of the same drugs and treatments that you listed including 2.5 non-stop years of various doses of prednisone and about 6 remicade treatments - none of which had any impact. I finally had that nasty colon removed in Oct. '07 and the takedown in May '08. I had a rocky start and just recently went thru a bout of pouchitis, but I would still take a bad day with my j-pouch over any day with a UC flareup. Now that things are all working properly, it's the greatest decision I've made. BM's are often formed (forgot what those were like!!) and never painful. Sometimes the gas is a little uncomfortable, but NO MORE ACCIDENTS!!! Some minor issues with nocturnal incontinence, but nothing too bad or messy. I wear a pad just in case. I think most people who have this get past it in time and many j-pouchers don't experience it at all. My life quality is so much better it's hard to believe how I had to live before. I do take some things to help me out, but they're pretty easy compared to all of the meds I was on previously. Metamucil wafers are the greatest things ever for thickening stool. And I'm becoming a big beliver in probiotics. VSL#3 is a must. Neither of these are prescription, although the VSL#3 is very expensive. I can't tell you what to do, but the j-pouch was a good decision for me.
Oh - I guess your original question was what does it feel like when you have to go? I imagine everyone's experience is a little different. For me, sometimes it's a gentle pressure that gets stronger if I ignore it and other times, if there's gas behind it, it can feel a little more "impatient", but I wouldn't quite call it urgent. It's NOTHING like having UC where you feel the urge and if you aren't seconds from the bathroom, it's another mess. I'm so sorry you're dealing with that. Is there any reason you have to wait until spring to have the surgery?