Glad to hear of your good outcome.

I also developed stricture after surgery.

The first thing they tried was a dilation via Cytoscope -
www.healingwell.com/community/default.aspx?f=35&m=3429738

I also had to daily self-cath after the cytoscope -
www.healingwell.com/community/default.aspx?f=35&m=3431322

Like you I think the procedures / self-cath were causing more damage and irritation. The self-cath started giving me retention at 30 days so I was ordered to stop, wait and see. Well I didn't have to wait long and I ended having a laser DVIU a few weeks later. Fortunately I'm 2 months past the DVIU and still at full 'garden hose' flow.

Jon

I was the unfortunate "King of Strictures". Began right after my open RP surgery in 2008. Spent the next 1 1/2 years on over 20 catheters, including 51 weeks straight with a Suprapubic catheter in place. I underwent in the office scoping twice (both times horrible experience). Had a total of 6 corrective surgeries to re-open, but none lasted more than a month. My situation worsened after undergoing salvage radiation.

Long story short, I was never able to pee on my own without severe pain and/or blockages post surgery. In 2010, under went major surgery ,the illeal conduit (bladder by pass) surgery, and have been urinating without any feeling or sensation through a stoma into an appliance bag, which we change once a week.

My uro made one last attempt to enter my bladder to check for bladder cancer in 2013 and had to abort the operation. He couldn't even get the thinnest wire to pass through. Said I was 100 blocked with thick scarring, and there was no longer a way to get to the inside of my bladder.

Even though my bladder has been by-passed for nearly 5 years, I still get dozens of painful bladder spasms on a daily basis, as the brain is still sending "urge" signals to the bladder. So far, there has been no remedy for this, just have to live with it.

I was never a candidate for self-cathing, uro was afraid I would damage myself further with any attempts, and the entire procedure was way too painful to attempt.

Feel for you, I do understand. Hope you stay open. For some men, 1-3 attempts gives them a cure, but for others, it quickly, as in my case, became a perm. and chronic situation.

My best to you, hoping it all stays working

Hi David,
Thank you for your comments.
Wow, your not kidding about ''king of strictures'' 51 weeks on a suprapubic catheter ..that's terrible.
To me it felt more irritating than the regular catheter, perhaps due to being inserted beside RP incision.
I feel for you having to deal with that much pain daily.

With retention you know how quickly things change ...from having 70% retention, then the Catheter attempt, then Cystoscopy which adds more water to the bladder. After that I passed some urine once ....and that was it, 8 hours later he was putting in the suprapubic catheter.

Does acupuncture offer any help with blocking that urge signal.
I wish you peace and good health.

Hi WifeofMoose,
Thanks for sharing your husbands story, I was told it was unusual to get a stricture
a few months after surgery.
Glad to see he's on the mend.
James
James

Hi Woodyvt,
Somewhat similar to your radiation side effects, I remember the first week or so after surgery having a sharp stinging pain like passing something sharp when peeing.
No, it does'nt sound weird ...I would have preferred weird over pain
James

I find I'm having more leakage (dribbles) after the bladder neck stricture repair than after the original RP ..3 months previous.
Is it stretching of the sphincter muscle during the stricture repair that causes this?

I guess the original good continence after RP was due to early scarring taking place.
It's minor leakage but more noticable if I'm walking the dog ...as he wants to explore every tree stump along the way

Hi, I haven't been online here for a while but had a couple of details to pass on.

I had an open RP 12/14, with a severe UTI around 12 days into the catheter debacle. Dr originally thought it was just bladder spasms but when the medicine didn't touch it agreed it "might be infection"! I read somewhere that the UTI rate for RP is pretty high, particularly in open RP due to the longer duration with the catheter.

At about 6-7 weeks I noticed the flow was decreasing (and yes I actually measure the flow rates) and contacted my doctor. He told me that if it continued to drop to set up an appointment for stricture surgery. Well it did, and I had surgery. I remember the nice little nurse asking for my consent for the catheter, and the look on her face when I threatened to strangle anyone coming near me with a catheter! She politely asked the Dr to come in and explain that it wasn't like the one from the RP, and just overnight. All went well...

Afterwards my Dr told me that "I must have a sensitive urethra."

Later, I talked to 2 different RO's about future ART, if needed, and mentioned the stricture and sensitive urethra comment. They both got more serious and told me that the scar tissue, coupled with the sensitive urethra issue could pose continence issues during and post-ART. The explanation dealt with the higher adsorption of radiation by the scar tissue around the bladder neck and in the urethra, and the sensitivity of the urethra.

Now I am praying that my PSA stays down so I can avoid the ART process. Unfortunately, like most everyone on this site, if I could apply the odds on what has happened to me medically to the lottery, I would be retired in Tahiti or somewhere similar.

Options for treating recurring strictures are fairly limited. Dilation is rarely effective. Urethral stents have not proven to be successful in the long term and have caused unpleasant experiences. Urethral resection surgery is difficult and again not always successful.

So far as I know, the only long term solution for recurring or permanent strictures is a SupraPubic Catheter (SPC).

That is where I am at right now. I have had an SPC for over a year now and it looks like it may be with me for life. The only alternative to that is a Urostemy ie bladder removal and replaced by an external bag. Very keen to avoid that.

My retention came about after RT and subsequent cystoscopies. However it is not obvious that I have strictures. Two different Uro's have been able to pass size 14 catheters through my urethra, yet I remain retentive. It has been suggested that the nerve which controls my urinary sphincter has been damaged and the sphincter is in a permanently closed position, but there is no definite diagnosis.

Given my previous high level of incontinence, I am not keen to undergo further investigative procedures in case I return to incontinence. As uncomfortable as the SPC is, it is preferable to permanent incontinence.

I hope you are able to find a less invasive solution to your problem.

Chas

Hi James,

Have to say I'm not really into alternative medicines and not sure how I could use anything given that we don't really know what has caused my retention.

I should also say that I have now gotten quite used to the SPC and am living with it pretty well. I don't think there are many people in this forum faced with the prospect of an SPC, so won't go into details of living with an SPC, but can do so if the need arises. I think I now manage mine pretty well and as I mentioned earlier, it is preferable to being incontinent, and it is definitely preferable to a urethral catheter which I absolutely hate.

Chas

Fellas: Here's something to consider, some uro's are going away from suggesting self-cathing, they believe it does more harm than good. Here's some info. if you have a reoccurring stricture. I haven't used Dr. Gellman but his site seemed to have the most information.

https://www.centerforreconstructiveurology.org/urethral-stricture/#.VmxDuo-cGyI

Goodluck
David

James: I actually spoke with Dr. Gelman on the phone at one point, he does surgery on both urethral strictures and bladder neck strictures. Mine was a bladder neck issue. Dr Gelman is one of the true experts in the field but he wasn't in my insurance group so it would have been too expensive to have him do anything.

If you read his website he explains why it might not be a good idea to self cath
and if you stop up a second time the chances are you have a chronic issue that
will probably only be cured by surgery.

Good luck
David

I am surprised, over the years here, at the number of members who had chronic stricture issues, who's doctor advised self-cathing. I still have a lot of faith in my original uro/surgeon. I was never allowed to self-cath. Wasn't even an option. He said there was far too much risk of me further damaging myself in any self attempts, even with proper education about the process.

Every time he did a procedure on my bladder neck, I was warned up front, that the area is so critical, and so tiny, that there was always going to be extreme risk to end up fully incontinent for life.

My advice, as a non-doctor, just educated first hand opinion, is if a person needs to be on a cath long term (more than a month), or are going to be dealing with long term chronic stricture issues, to be put on a Suprapubic catheter, vs. the standard Foley (through the penis).

My only complaint from having spent 51 weeks on a Suprapubic, is that for me, they every 4 week tube change outs were some of the worse pain events of my life. Crystals from the saline in the urine can crystalized that quickly, and when the tubes were pulled, they would tear through the hole like barb wire fence.

My doctor knew this, and it took 2 nurses to hold me still while he exchanged the tubes as quickly as humanely possible. Of course, the fresh tube hurt almost as bad going in, because of the damage done taking the old ones out. I dreaded this for nearly a year, always brought me to tears, yes, I admit that. But it had to be done, as risk of severe UTI's were extreme under the circumstances.

If one is going to deal with chronic strictures for ever, then give consideration to having the bladder by-pass surgery I underwent in 2010. Yes, its a major change of life event, a major operation, but its better than a lifetime of dealing with a pain filled bladder and bladder neck. Knowing that I can never be on a catheter again has its benefit itself. I still deal with trauma related to that period of my life, even 5 years later.