help with urgency feelings after cystectomy

[carlin kammerer]

I have not been on the board for many months. Mostly because I have been sick. Besides IC, I have asthma and pulmonary hypertension. Right now I am having asthma problems. I have been in the hospital twice in the last two months for kidney infections. I am also still having the feelings of urgency. It has been a year since I had my bladder removed. (Nov. 1 of last year). I have been to my gyno. twice since then. He says part of my urethra is still there. My urologist says there is not enough there to cause a problem. I am taking Lyrica, but it has not helped. Some nights I think "I am so tired I don't want to get up and go to the bathroom, and then I remember I don't have a bladder." That is how strong the feeling is. I also still have pelvic pain. Don't get me wrong, I would still do it again, just for the frequency (over 6o times a day.) It is really nice when my lungs are bad, like know, I get short of breath just walking, so not going to the bathroom all the time is a big plus. Any advice? I read a little about Kara. Did she have the nerve cut? I will have to consider that, because the urgency feeling is driving me crazy. Thanks for any help. Hope you all have been OK. I have been thinking of you, just to sick to get on boards.

[Judith56]

Carlin, sorry you still are having such trouble with phantom urgency. What I used to do and most likely you ahve done this too, is to sit on the toilet till the feeling passes. You can also pour water over where the urethra used to be to simulate the feeling of urinateing. Sometimes this tricks the brain into thinking you are going to the bathroom. You may want to talk to another uro about removing what is left of your urethra or go to a pain clinic to see if they have some suggestions. I would also check out some websites devoted to ostomies- like www.uoaa.org or www.ostomates.org You may find a more people there who have had this problem and can help you with suggestions. Judith