Scaring between the urethra and NEO bladder

Well, I sent out Mike's post to Mark Schoenberg, head of Johns Hopkins uro-oncology dept and he said this:"this is the kind of thing that you can only evaluate if you can see the patient i would be happy to do so if he wants to come here."

When I questioned Michael O'Donnell, another of WebCafe's advisors about Warren's stricture problem a month or so ago he said (from another thread):

"Urethral strictures occur after some form of trauma resulting to scarring and circumferential tightening of the urethra. Mild forms can be incised (cut open) or balloon-dilated. This is usually the first step. However, the recurrence rate is often >50% because the tissue is diseased with a restricted blood supply so it tends to retract back down and scar again. At this point one can either persist with daily self-dilation in the hope of getting the scar to “set” in an open position. This can take 6-12 months. Or – one can go with an open surgical revision where new fresh healthy tissue is brought in to repair the defect in either one or two stages. The success rate is usually over 80%. If he has been free of cancer for >5 years and this is the only enduring problem and he is not seeing progress with these conservative measures then it would make sense to go with the surgery."

I suppose the worst case scenario would come down to a choice between open urethral surgery or revision from neobladder to either internal or external pouch, if the conservative measures mentioned above don't help. Sounds like no fun at all.

Wendy

Wendy, thanks for listening. I anxiously await word from your expert. Bob's next surgery is scheduled for Aug. 30. They plan on using a laser to cut away the scar tissue and then will probably put him on steroids again. Then I assume we go back to the monthly scoping and dialating. Keep in mind, Bob will have a foley catheter too, so we won't know for some time if it works.

Thanks again. It's nice to know there are people out there willing to help and others that have actually experienced the same things.

Patti

Hi Patti,

Good grief it sounds awful for you and your husband, too. I cringe at the thought of this complication and thankfully it's not common to have this happen. I have sent out an inquiry to an expert, see if we can learn something.

The last time I asked an expert about strictures post op I was told that it's easily fixed; now I hear these experiences and my head swims.

Wish I could wave a magic wand and make it all better, as I'm sure you do.
Please share what you learn, and I hope the news is good.
Wendy

To Mike & Wendy,

I am curious. Mike says that he is able to self-cath and can even wait until he gets home from work. Bob's problem is that he closes up completely and that is why is on a foley catheter all the time. We do have a box of sterile self-caths which is probably what Mike needs. Bob did try to use them once, but was so closed up that he couldn't get it in. We had to rush to the ER to get a urologist to work on him.

We are really hoping that this next surgery will work. I just wish someone could reassure us that what we are doing is the right thing. I plan on talking with the doctor who performed the neobladder surgery too. We are seeing a local urologist now. They know each other, so we feel pretty confident with our local doctor.

Thanks for listening . . . Patti

Hi Mike,

Welcome here. What a horrible problem this sounds like, I've heard about strictures and the need to be re-operated for them but never for such an extensive period as you. I'm sure it must wreak havoc with your quality of life.

Has the doctor or anyone else mentioned the possibility of re-doing your neo into a pouch (internal, catheterizable reservoir)? Or as Patti's husband's doctor suggested, an ileal conduit.

How would you feel about it? Do you mind if I ask where you're being treated? Just curious.

I will see if I can find anything out...

You said "I have a lot of issues with trying to keep the cath clean with I use it at work. So I try not to until I get home."

Hmm...this might be unwise. not drinking enough can encourage infection (catch 22 again), and waiting too long between voids can mess up the neobladder, stretching it (called "floppy bag syndrome").

Maybe you have to invest in sterile catheters for this period.
Wendy

My husband had his neo bladder surgery in Nov. of 2006. Since then he has had 3 additional surgeries to remove scar tissue between the urethra and neo bladder. He also been on a foley catheter for almost the whole time. He has only been on his own for about a total of 3 weeks. He also has had some terrible infections along the way. And trips to the ER to insert catheters.

It is amazing to us how quickly the opening closes up. This last time, he took his catheter out the night before his doctor appt. By the time we got in the next day, he was having trouble peeing and during the Cysto we noticed scarring along the length of the urethra not just at the opening this time. His doctor had trouble getting another foley in, so now he is dealing with a small catheter and mucous clogging.

His last surgery was in April. The doctor used a laser instead of cutting which was supposed to cut down on the scarring and he also put him on steroids. Since the dialations don't seem to be working, (and are very painful) he is scheduled for surgery again at the end of August. Again, the doctor will be using a laser.

Our fear is that this won't work again. The doctor has already talked about an external pouch if this surgery doesn't work. Bob really would not be happy with that after all he has been through.

Bob looks and feels good. Except for not being about to urinate, all is well. Of course with a foley catheter, we haven't been able to try to see if the nerve sparing worked either. Right now we would just be happy to have him pee on his own. He wouldn't mind a little leaking either.

The doctor keeps saying the scarring should eventually stop. Can anyone confirm this?

Thanks, we appreciate any help.

Patti