DJBHusky- Yes, that's what I worry about... I know how quick illness from UC can come on. AND, now that I've I take all medications (other than the transfusions of Remicade) and find that none work, I feel this is my only choice because it's just a matter of time now. Sadly, I've read about too many people who've waited too long or actually never had a chance to choose because they were just SO ILL. You made the decision just in the nick of time! UNREAL! Thank you so much for the information and helping me get over my worries.
Marianne- I worry that I will be so sick that I could have horrific outcome if I do have surgery. I definitely am going to the consult. If he lets me, I'm going to schedule the surgery for early November or possibly late October (before I start getting sicker). I just wasn't sure if my GI doctor was trying to tell me that I should be embarrassed since my colon is apparently not in as horrible of condition as some of her other patients. I don't know... my mind just goes. All I know is that I am a peace with my decision to schedule surgery. I'm tired of UC determining what I will and will not do that day. Just today I was in my closet deciding what to wear. I grabbed my white pants but then put them back because I know in the back of my mind that today could be another day where I don't make it, or a little 'stuff' escapes before I get into the bathroom.
Thanks so much for your input.
DogDay- I think my decision is made. It's J pouch surgery for me. I'm done with drugs and all of the experimental stuff.
vstRN- I'm so glad its been good for you since the takedown. I know it will be a traumatic journey. But it can't possibly be more traumatic than having my life be ruled by UC. I'm so tired of being afraid to leave the house or afraid of 'accidents'. I feel confident in my decision but am still understandably nervous.
Sue!! You helped me on the Healingwell forum ;o) I took your advice and posted some of my new concerns here in the j-pouch forum. AGain, I think surgery is my only option as I'm out of options on drugs. AND, I will NOT take Remicade or those other biologics. I just believe it is inevitable so why not do it now while I'm still young and hopefully healthy enough. In my mind, I'm still aiming for late October or early November if he (Dr. Stocchi) will have me! This will also help me out with my job. As I will have more leave built up by November AND in January will roll over with more leave to use.
Rocket- I agree with Marianne too!!! Driving home from work is the absolute worse time for me. I don't know why, but that's where I get caught too!! It's like whatever I had for lunch is SCREAMING TO COME OUT by about 4:15pm! This is where most of my accidents happen! I'm glad your surgeon told you it was your best option. That's where I think I'm having issues is the fact that my GI said "I have patients who a worse off than you". I just can't figure out what she meant. It was as though she was saying that I should be embarrassed asking for surgery rather than trying yet another experimental drug!! It's easier when everyone supports your decision. I too hate prednisone. It's never put me into remission but it does help me with 'accidents' and lessens the stomach cramps and pain.
I worry about pouchitis and all of the other complications but I'm ready for it.
Thank you for your words of encouragement. I agree with everything you said ;o)