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Friend who has had allot of strictures and catheters

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Posted 6/7/2012 7:53 PM (GMT -5)
I have a local friend who has gone through allot more than myself with PC and associated problems.

He had surgery and has strictures usually within 6-8 weeks of surgery. 

He has 5 surgeries and just had reconstruction on his urinary track.

The surgeon did the surgery and catherized him.

After two week the surgeon removed the catheter and he had adhesions so back it went along with another supra pubic.

Prior to that he was on a supra pubic for many many months.

I continue to talk with him and ask that he contact you guys on this forum.

Many of  you have experiences which I just cannot relate to and some I can.

You all helped make my decision to do the AMS 800.

His last reconstructive surgery was at Ohio State and next step if he can stay stricture free is the AMS.

If he cannot he is considering a supra pubic as a way of life.

Any suggestions on articles or procedures which may be worthwhile looking into.

I hope he gets on here but if not, I want to support him the best I can.

His life as a truck driver has been hell.

Thanks and God Bless

Tom of West Central Ohio

 

Posted 6/7/2012 8:03 PM (GMT -5)
Hello Tom,

I am the person you want to talk to hear about your friend's issues. From the time of my original surgery, I had constant stricture issues. I spent a total of 1 1/2 years on a combination of 21 catheters. I had 6 corrective surgeries on my bladder neck, only to have a new stricture form, in some cases, in less than a month from the previous surgery.

Then to make matters worse, I underwent Salvage Radiation. Due to my stricture history, they put a suprapubic catheter in me prior to the radiaton. The radiation was administered wrong, and my bladder and bladder neck was destroyed in the process. I ended up being on the suprapubic catheter for 51 weeks without a break.

In the end, I had to have the Ileal Conduit surgery, which was horrible. My bladder was by-passed, and a stoma was created into an Urostomy. I have had to pee into a plastic bag essential since October of 2010. I was not a candidate for the re-contronstructive surgery (was being considered at Duke), because the radiation damage was so extensive.

I feel for your friend, as I know what he is experiencing. That period in my life, the "Catheter Days", were some of the most painful and worse in my life, still feel traumatic about it. I also had several emergency dialations and ER visits during that time.

If there is any way I can help, or give advice to your friend, I am available by e-mail or phone. For me, the real nightmare, is that I still have to connect to a catheter everynight before going to sleep, it's like the problem never will go away. I still get moderate to severe bladder spasms, despite my bladder being made in-operable, with both the entrance and exit being sealed.

Speaking of bladder spasms, I would estimate that I went through more than 5,000 of them during that time period, and had to live off of Ditropan, which did little to help against the pain of them.

Good luck to you too,

David in S.C.
Posted 6/8/2012 6:59 PM (GMT -5)
bump, for the poster. was hoping there would be some other input on this thread. perhaps it got buried fast
Posted 6/8/2012 7:14 PM (GMT -5)
Purgatory
I spoke with my friend from Mc Cartyville. I urged him to get on here and contact you. He said he would.
He wants to call.
He had good news sort of on his condition today after visiting uro in Columbus.
I told him to contact you thru here.
Thanks for your help.
Tom
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