Scaring between the urethra and NEO bladder

Hi George, you mentioned that within days after removing the foley, the blockage was back. How then are you able to self-cath? This has been Bob's problem too but when he gets blocked, even the doctor has a hard time getting a catheter in. His scar tissue seems to come back within hours of removing the foley. I don't think he would mind self-cathing if he knew it would work. We just haven't had any success trying that method.

He goes in for more surgery next week. I think if we don't have better results, we may try to consult another doctor. We really like our local guy, he is not the surgeon who performed the neobladder surgery although we liked him too.

I'll let you know how it goes.

Patti

Patti and Mike-

I can definitely empathize with you. Since my RC w/neobladder in February, I've had two bladder neck resections for scar tissue blocking the flow thru my urethra. Both times, the blockage recurred within days of removing the Foley. After the second, my surgeon (a med school professor, also on the staff of a top-rated cancer center) told us he didn't feel that further resections would be beneficial, and that eventually the scar tissue would abrade enough that I would be able to urinate normally. I also am not a candidate for a stent because of lack of clearance. The Dr. said that it had been his experience that people who were quick healers were most apt to form excess scar tissue. We asked about modifying the neobladder to an internal pouch, but he said he would be very reticent to do that, because it would require another major surgery, and I am having no trouble catheterizing.

I have so far managed to avoid any infections (knock on wood). I definitely don't enjoy the procedure, but have gotten used to it. In actuality, having an internal pouch would require catheterizing thru the stoma anyway, so there's not that much difference. Plus, the NB offers the hope of regaining normal function in the future.

Having said all that, I too would like to hear from someone who has had this problem, and has been able to regain normal function.

Hi Wendy & Joe - my question is has anybody had scar tissue issues like Bob's with the opening closing up and repeated surgeries to clear it with good results?

He is about to face another surgery (with a laser this time) and I don't have a good feeling that he will be any better. The doctors keep saying the scarring should eventually stop. What is eventually?

Love to hear something positive.

Patti

Hi Joe,

Good question, I think I've met folks who have done this but can't really remember who. I could ask our ACOR email discussion group. Maybe you should start a new thread under "cystectomy" asking this question as well.
Wendy

Wendy,

I have noticed that you got no answer to this question. Thinking of this horrible situation, I'd probably request such change to get it over with, but that's just me of course.

Do you know any member here who actually had such surgery - re: changing neobladder into Indiana pouch? My doc told me that should there be complications it can always be done, and that it is fairly easy change to make.

I wonder if anybody actually did this, how did it go and what the reason was.

Since it doesn't seem that we have many options, Bob is going to have laser surgery to cut away the scar tissue once again. Our doctor did say he has never had to do this more than 3 times. This will be Bob's 4th time, however 3rd with this doctor. We are wondering if all this activity (scoping, dialating, caths) is making it worse.

One thing for sure is Bob does not want to have an external bag. He is willing to deal with this for a while longer till hopefully we have better results.

Patti