Hi - I have an indiana pouch and was wondering if anyone h

[waterlover]

here has used the Austin Medical Patch with Cavilon no-sting Barrier wipe to cover their stoma. I am going to give it a try. Also, is there anyone here who knows what to do when you are lying in bed at night trying to sleep and all you want to do is 'pee'. I get up and do the hot water spray bottle, take a pain pill, and try to forget about it, but last night I was in tears. I am 6.5 wks post cystectomy, urethrectomy, creation of continent pouch d/t interstitial cystitis. Have called Dr. Raz's office for 2 days for some help. No answer- they are in Cal. and I am in Virginia. thanks, Aileen

[jpotts]

Aileen, Please check your private messages on this. I do have this sensation occasionally with no rhyme or reason, but I really think you should talk to your doc.
Jules...what do the experts think???

[JMA]

Hi Aileen!

I had my bladder out in 2000 due to IC. I had suffered with it for about 12 years before I had the surgery done. I too had the horrible urge to pee. It takes time for that to go but it will! It took me about 3 years for it to TOTALLY go away. Once it was gone, I did not even have twinges really. It was the most awesome thing ever. I then decided to have the internal pouch done in 2005 and after that surgery, the feeling came back for 4 - 8 weeks and then TOTALLY went away. I felt awesome. I exercised everyday for 1 to 1 1/2 hours, had sex, everything. Then, the end of June of this year, I had to have double hernia surgery. A couple of weeks after surgery, the urge came back and it is still working on going away. It has always been that when it did come that it was very persistant and there all of the time. As time went on, it got less intense and I started to see breaks where it would be totally gone. One day, it was just gone! The only thing that we can think of is that going down the same scar, upset the nerves and they need time to settle down again. The nerves do not die, they just someday stop sending signals to the brain and your brain just kind of remaps itself. It will go away, you just have to give it time. Some people never feel that after surgery and some do. It varies from person to person whether it was for IC or bladder cancer. It is normal and it usually takes a good year or so. As far as what to do to try to get the urge to pass, I really don't know as I have to just wait until it passes. It is like it has a mind of its own. Hang in there, it will go and someday it will be but a distant memory! There is lots of sunshine ahead for you!!!!

[waterlover]

I have found that when I sit- it gives me the feeling of urgency, but when I walk or stand, it goes away. WArm baths also help, so I am doing my best to try all this and most of all, let time go by. Thanks to all of you for your support. Aileen