So frustrated and tired of this bloody disease!

Thanks guategirl. I am the same with the walking. I don't even walk to get my kids from school - even though it's only 7 min away. I just never know when I will need to go.

My Dr has me on a short course of pred (2 weeks) to see if that helps to allow the Remicade more time to work. At least all my secondary symptoms are gone. So far no change with my BMs or urgency. We'll see. Either way, it is easier to deal with when I am not feeling awful with fatigue etc.

Wow, Disney - that sounds so wonderful. I think in all of this, we forget how we "used" to be. My life is so scaled back now - it's pretty much work, pick up kids and stay home. I used to be so active with my kids, playing after school, exercise, coaching soccer, parent council, a bit of a social life...all of that is gone now.

If the remi would work, I would be so happy. The Dr really wants me to keep going with it for now. I really want to keep my colon, but when I read how well you are doing, it gives me pause for consideration.

I think that if I am not feeling better by my next infusion, then I will likely have the surgery. I just always think - what if after 1 month of surgery, they find the cure?

Although I have had this since July 09, it has really only been the last 4-5 months that have been bad. Prior to that I was always on pred, which control everything perfectly. I guess I just never truly considered that I would get to this place.

     Mom2Panda....my heart goes out to you.  I've walked in your shoes.  However, I was already retired from the work force when my UC (actually proctitis) became really bad.  I just cannot imagine the fear that strikes you while driving in your car and get that feeling...uh oh..I gotta get to a bathroom FAST.  Someone mentioned a port a pot in your car.  Well, that will only work if you have a van of some sort.  We had an Astro Van and kept the port a pot in the back and yes, I did use it on occasion.  Not a pleasant experience, but then I didn't have much of a choice.  I can remember one time going to my daughter's home.  She only lives 15 minutes away by car.  My husband was driving, I was sitting in the front seat and WHAM...gotta go.  I scrambled to the back while hubby was still driving, he couldn't pull over, and I just about made it onto the pot.  Thank goodness we had the shaded glass and people couldn't see into the van.  However, hubby had to make a sharp turn and I almost tumbled over while still on the pot..lol...oy..what an experience.

     I do hope you find relief soon.  Guess you know I ran the gamut of meds.  Prednisone gave me osteoporosis.  While on it, I suffered with very high blood pressure and high glucose levels, so just be very careful and be monitored.

     I also understand your feelings about wanting to avoid surgery.   No one was more scared to have surgery than I.   I sometimes cannot believe I actually went through it..lol.  If your situation does not improve and you find yourself facing surgery, find the best colorectal surgeon in your area and do your homework.    For now though, I'll keep praying for your health to improve and for the Remi to do its job!!!