SE's of surgery..robbing me of my life

island time,

I wanted to express my support for your extreme, and extraordinarily understandable frustration...I know it's with you every day, not just today, but it is your life right now. And it was just, as you recognized earlier in this thread, your own case, your own unique flavor, of everyday bad luck.

I feel for you, brother. Could been me. We got our own issues, but yours could been any of ours. And sadly it'll be someone else tomorrow.

Wish you strength needed to continue the fight.

142 said...
IT,

I know I should not say "been there, done that", but that is the case. Back in Nov / Dec I got scoped twice, dilated 4 times. It was a weekly meet with some ugly pieces of steel and or cameras.

My issues were strictures from radiation damage spots that would scar over in days, and the tissue blocked me up completely. Uro and I finally agreed on hyperbaric oxygen treatments. Even while on them I went to the ER twice in the same day for catheters and then flushing them. Four caths in three weeks. But the good news? After 60 days of treatment, (since the end of February), no further bleeding, catheters, or dilations. I have had a cystoscope, and will have another, just to validate that the urethra is healing.

My insurance is still at war over the $300,000 in bills, but that is their issue, at least for now.

No, 142...you really shouldn't say that. But, I'm glad you did.

I was in the clear man! about 2 weeks after the last catheter pull...my stream cut to half of what it was when they pulled it. So...i suspected a stricture. However....it dropped off so fast and then...it just "stayed like that". I didn't care. I was urinating fine...no other symptoms at all...just a slower stream was all! So I rode with that. No problem man. "I'll take it"...was my attitude.

Then in Mid March I developed gross hematuria. Freaks me out and run to the doctor(s). That's when the uro did the scan and found the kidney stones. I had been on blood thinner up until the day before I began bleeding (leg clot...now resolved). Now...I'm off of blood thinner but bleeding most every day. My uro said he thought it was coming from the stones and thinner but this made no sense to me. There was no blood while I was on thinner . So...i go off it in March and began bleeding. I went with the "stone theory" FOR 2 MONTHS. I bled almost daily for two full months. Now...it's mid-May. Still bleeding. That's how long I put off getting scoped because I "knew" I had a stricture. Then...The big, bad bladder cancer boogie man got in my head. So..i go get scoped to check for bladder cancer and he can't get the scope in. So....There ya go. 1) Take a chance on bladder cancer or 2) break the stricture and check for it?

Reluctantly...I chose door number 2. It was just a choice I felt I couldn't afford to not make. I just felt the stakes were to high. (Not to mention...One never really gets used to peeing blood without a definite diagnostic cause...and even then...).

So after the dilation in May to check the bladder the flow was no better and there was blood from breaking the stricture. I thought then..."trouble". Sure 'nuff....and about 2 weeks ago I began to close up even more from the stricture break. It happened really fast over the course of a day or 2....just like from the surgery. But...now its half of the prior half. Plus...urgency and incomplete feelings of voiding.

So...Last week I go and have my bladder checked and there's no urine in my bladder after I pee.


LOL Soooo....NOW WHAT DO I DO !! Lol

I mean...if prior experience is any indication of future performance. ....i should be fine without further damage! Only....granted....with 1/4 stream, frquency...and urgency. But...it may not get any worse.

I asked the uro today...."What happens if I walk outta here right now and never come back?".

That's when he muttered...."It may close up completely". (This guy is sooo nonchalant. It can be difficult to read him completely. That's both a blessing and a curse of his having had cancer. Not much seems to rattle him). He knows... (I suspect) that none of this'll kill me. (And even if it does...so what then?)

Both you and Chas had problems after radiation. Radiation is definitely not the friend of scar tissue.

You got yours fixed. I spoke with greytech. ..he finally has his manageable for 10 mos....

Can you see my hesitancy in doing anything? Except for the stones. One is 2 mm. I read where that sicker is eventually gonna wanna get outta there. (It might already have...and its in my bladder now as my pains have receded in the last 2 days).

I asked the uro if that could block my flow. He says..."Man you worry about EVERYTHING".

I'm torn. He does act as if he wants to go after that big one that can't pass (too big). But...i know....This is more than likely to be a marathon rather than a sprint. And he said as much.

But...if I get that stone out...The only thing left to do will be the stricture. But...lol...that's no small thing. (I don't care what he says). He says..."it'll be fine". But...he says that about everything. (I take that back. He's not real big on doing nothing. But...is this because he's a urologist or because he knows something I don't know? Scratch that...I've got the information. And i know the risks. It's just a decision that only I can make.

Did anyone even read all this? It's a novel!

Hey there Island Time.

I am late to the party as always, but wanted to say as have many others - vent away. I don't think anyone here gets offended or upset and many for many of us it is good to hear that problems we might have are not unique to us - but got to say you seem to have issues by the bucket load.

I had surgery last September for a stricture that had completely blocked me up - needed a trip to A& E and 2 nights in hospital - and Surgeon recommended daily self catheterisation reducing to weekly for life to keep the pipes open. Unfortunately I started blocking up again within 3 months, never got down to weekly and by golly was it painful. A surgeon who specialises in Urethra reconstruction told me of a technique for keeping strictures open by clamping the old chap right by the base with a hand whilst opening the bladder, thus expanding the urethra by urine/bladder pressure.

I had a dilation performed abut 4 weeks ago and have employed this technique on an at least daily basis since that point, and so far so good. No diminishing of flow, and a lot less pain - both on the procedure and normal functions.

I guess like a reverse Kegel. Idea being that the stricture is being dilated by the urine, rather than by shoving a tube up. Made a lot of sense to me, and as I say so far so good. But to be sure I need to keep open for a couple of months. Going on the anything but surgery basis

AlanB5 said...
I guess like a reverse Kegel. Idea being that the stricture is being dilated by the urine, rather than by shoving a tube up. Made a lot of sense to me, and as I say so far so good. But to be sure I need to keep open for a couple of months. Going on the anything but surgery basis

Thanks for the tip Alan. To be honest with you...i really don't see my signing up for any of this until forced to against my will. And what constitutes "against my will" I may have to just "know it when I see it".

What I do believe is, dilating what I've got will cause even more closure. This starts in motion alot of things the end result of which no one really knows.

What I do not know is whether what I've got now will close up more.

Either way...no one knows how the future will pan out with these these things.

I also asked the uro if jumping on this now rather than later influenced my outcome. I got no real answer, other than...I know he believes it's in my best interest to do it now.

But...he's a urologist. Urologist like to do things until there's some sort of resolution. ..One way or another. The way it is now is "unstable" is the word he likes to use. An SPC is "stable"...but is that really better than unstable without one?

I'm just unconvinced that digging around will result in something better than what I've got. That's all.

He says I need to trust my doctors more.

Post Edited (island time) : 7/6/2016 12:24:16 PM (GMT-6)

Hey Island Time ---

Awww ! The kidney stones --- I had always heard horror stories --- then, I lived it --- I've had two rounds with those dreaded things ---

Was teaching school one day --- things went from bad to worse --- ran to a doctor after school and was told to "drink lots of water" and the stone will eventually pass --- two months LATER, it finally did --- never drank so much water in my life ---

Was told that school teachers are often prone to kidney stones --- not enough bathroom breaks in our day --- truth or urban legend --- not sure, but I can believe it ---

Another time --- was out having dinner at a nice restaurant with a girlfriend --- long story short, she had to drive ME to the emergency room as we left the restaurant --- I was doubled over in pain that was beyond belief ---

The trouble with kidney stones --- no warning !

You talked about the pretty girl when you were in 6th grade who wanted to be kissed --- sometimes, there's a pay-off for being a gentleman --- years ago, I started going out with the prettiest girl I've ever known --- beautiful and talented and smart --- she took a liking to me, and we started going out --- I was keeping things on the gentlemanly side --- soon enough, I guess she decided it was time to give ME my first official lessons in KISSING 101 --- I think we both ended up passing that test with flying colors, thanks to her ! Sometimes, it pays to be a gentleman, I guess ...

Meanwhile, Island Time --- you're getting a plan going, my brother --- you're facing your fears --- we've all got them --- it's a 3-headed monster and that monster is named --- FEAR, WORRY, and ANXIETY !

Take your silver sword and shiny shield --- get your battle armor on --- keep fighting back against the 3-headed monster named FEAR, WORRY, and ANXIETY --- you've got this --- you're the warrior, Island Time --- don't let the 3-headed monster have any undue power over YOU --- and you already know this, deep down inside --- you're going to live to fight another day !

Stay strong in the battle, determined in the fight, my fellow warrior !

Iowa State University CYCLONE FAN

IT,
This is the first post I've read of yours that you complained even a little. And you've had plenty to gripe about! Sure, normally no one wants to hear a person borch, with two distinct exceptions. Your significant other and US! I have always felt a tender sadness for you that you and a couple other guys have to manage this without that significant other to support you, but you gotta lean on us, man. Otherwise you're sharing it alone in your head. I sure wouldn't wanna go there myself. I have some nasty monsters lurking in my dark corners .
I have the same love/hate relationship with Gary s medonc that you seem to have with your Urologist. I hope he's really good at what he does, because his bedside manner could use some polishing.
Best wishes IT, with your strictures, but mostly for a happy life.
Beth

It reflects my own power, frailties and handicaps back to me...when I write. I'm thinking of buying a laptop. I need to write. Let me rephrase. ..i want to write. I want to know...what is it? That I run from..

I understand first hand what you are going through. Coming up on the 8 year mark of my PC journey (August 25). And I am the result of "side effects", surgery and radiation going wrong.

I spent 1 1/2 years on a variety of catheters, both Foley and Suprapubic, its no fun, and was scoped multiple times, and had chronic stricture issues.

One of the toughest decisions I ever had to make, was in the fall of 2010, when I decided to have the Ileal Conduit Surgery to have an Urostomy. And yes, for nearly 6 years I pee out of a hole (stoma) in my side into a plastic bag. I don't like it even now, this far out, but it beat the endless operations and catheters and the trauma associated with that. After my failed and flawed SRT, I was never able to urinate freely or without extreme pain on my own. That's why I was on the Suprapubic catheter for 51 weeks straight, before the big operation.

If you think you are heading that way, more than happy to help you work through the decision, what is involved pre- and post surgery, and what it's like living as an Ostomy patient. There's definitely a big learning curve involved.

I hope you feel better about your situation. I only saw your thread tonight for the first time

island time said...
It reflects my own power, frailties and handicaps back to me...when I write. I'm thinking of buying a laptop. I need to write. Let me rephrase. ..i want to write. I want to know...what is it? That I run from..

Read and write.

You have a lot to share.

Every year, there are 100,000 low risk PC cases diagnosed in the US very similar to yours...many pass through this doorway. There has been a silent revolution in the last 5 years leading to increased AS, but still more men in this category go quickly into RP than any other choice. Many don't fully realize they have a choice. Many don't realize the "slippery slope" of problems which accompanies such an aggressive choice for an "elective" treatment.

Read. And write.

You have a lot to share.