Off to see my URO/Surgeon & Followup Report

Time to see my uro/surgeon again, we meet every 4 weeks.  Normally, he would change out the SP catheter tube at this time, but I am too friggin sore down there.  Had a rough weekend in "painville".  Hurt equally if I rested or if I tried to do something.  By some miracle, had a short window of not hurting too bad yesterday evening, when my kids took me out for father's day dinner.  I was thankful to be able to do that without a problem.

Got a long list in front of me.  He's wanting to do a day surgery, perhaps as early as next week, so that he can re-inspect me properly, hadn't been done since first of March.  We are trying to decide if its time to take out the SP cath.  I still have my doubts its a good idea.  When a spasms forces urine through the bladder neck and eventually my penis, the pain is intense.  The more spasms I have during the day, the more the hurt builds up, until I am finally forced to take some prescription pain meds.  Even then, its not always enough to off-set the pain.  So I can't imagine relying on my bladder neck/penis to urinate on its own.  But I do think the doctor needs to see what's going on up there visually.

Probably would mean coming home from the hospital with 2 caths in place for the 3rd time.  A thought that frightens me.

I also have several ideals and suggestions that I picked up from a few of your guys that I am going to mention to him as well.  He's open minded enough to listen at least.  I am suppose to start my new job two  weeks from today, I still don't see how it will be physically possible, no matter how much my mind and wallet want it to happen.

There's no point in a "tube" change today, with the pain I currently have, if he's only going to remove it during the day surgery procedure if that still happens.  It would hurt to much for me to bear with it today unless I was put under.

I will post an update here when I get back a little later this afternoon.

David in SC

Good luck. Hope something good comes your way for a change. Having gone thru the bladder spasm problem for a while, I feel for you. Can't imagine having the problem for such a long time. Squid.

I'll check back hoping for some good news!
Dave, Durango CO

UPDATED REPORT FROM DOCTOR'S VISIT MONDAY AFTERNOON:

Spent 30 minutes with the doctor, as usual, no rush on his part.

Decided I was too sore to change out the catheter tube (SP), he felt around and agreed. Been in 4 weeks, hes ok letting it go 4-7 weeks out if needed.

Put me on a new med for spasms, Enablex. Take it 1x in the morning, gave me tons of samples and a scropt, wants me to try for a few days to see if it works better than ditropan.

He is going to arrange day surgery this week or for next week depending on hopsital schedule. Wants to look with scope from below through the penis, and correct any new scarring, and wants to scope from the SP site, to see how much inflamation he's sees this time, as compared to his last look in March. Will mean coming out with both a SP cath and a foley at the same time. Which one stays after a few days depends on what he sees.

He has consulted with Dr. George Webster, a reknowned urological surgeon from Duke about my case. He can do advanced level surgeries. Unfortunately, he feels that there is too much radiation damage to my bladder neck/urethra area. He said I might as well had radiation as a primary treatment based on the 72 gys of salvage I had, because the damage is just about as exstenive. The logic is the same, if you have radiation first, then surgery as a salvage is usually a risk and bad idea. This Dr. Webster seemed to agree. Even without the radiation damage, the op considered is high risk to begin with, and was told that I would be certain of being 100% incontinent the rest of my life. My uro said he can arrange a personal consulation for me with Dr. Webster, but he said it wouldn't change the opinion or the outcome.

Our current thinking, is if this 6th corrective surgery bears no positive fruit by the end of August, will strongly consider Plan "B" surgery, which is a urinary by-pass op. In simplest terms, the bladder neck and urethra would be by-passed, and they would make a new tube out of a piece of my intestine (I believe), and exit it to the outside of my body. Don't have the name of the op handy. It would be no more catheters, and no more worries about bladder neck blockages. It would be a 4-5 hour surgery, and he said to expect 5 days min. in the hospital. So this would be no easy matter in itself.

He is still hoping for a natural solution, but realizes that since radiation did so much damage, it may not have that happy natural ending we both hoped would be there.

I did ask him about hyperbaric treatments (think I spelled correctly). He is not opposed to them, but in my case, he feels that the damage is too deep in the body for it to be effective, and that it would be an expensive waste of money. He does uses it in rare cases with other urinary matters, but didnt think it would be good for what ails me.

When I asked outright, he said that I was not medically fit to be working at all, let alone full time. So that still leaves me between a rock and a hard place about starting this new job in 2 weeks. But that is another matter.

Back home, resting, thinking, on meds. Over did things this morning with some painting prep work in my living room, and foolishly tried to mow some outside while waiting for my son to come over and mow. Big mistake, big pain. Just sick of feeling helpless and in pain, told the dr that too, that I was in a purgatory just circling around and around.

I went to that Yanow? site for the first time, and read some good things about this Dr. George Webster at Duke, and a case with a guy with a similar problem to mine.

As soon as they make the arrangements, will let you all know about the next hospital visit. Thrilled.

David in SC

Steve, I am not opposed to the idea of it. Just the thought of going through another major surgery with a whole other recovery schedue sounds spooky at this point. Not going to me much left of me. But the thought of being on an indwelling catheter the rest of my life requiring painful tube replacements every 4-7 weeks doesnt sound good either. And all of this assumes that the salvage radiation ultimately keeps the PC at bay, with one "zero", he said the jury is still out, that we need another 2-3 good readings before relaxing a little. Least he's honest on that point.

David in SC

Thank you much, Les. Each of our journey's is unique here at HW. My uro said he has only had one other patient in all his years, with a similar ongoing problem like mine, but mine I believe is more severe. While it may be rare, its still in there with the risk of having PC surgeries and PC related radiation treatments. Just the cards I pulled from the deck. Really helps to have have caring and understanding doctor. Been seeing him since 2007, and each time, he acts like I am his only patient. That helps when dealing with something like this.

David in SC

David, I can't say anything that I haven't said to you before -- just double it, at least.

I post simply to let you know I've got you on my prayer list.

Sheldon AKA Sleepless

David...is the bypass like this website?

http://www.answers.com/topic/ileal-conduit-surgery

David,

I wish you good luck!

Regards,
Sharp

Thank you, Rob and Sharp.

Sephie, thanks too, my uro is very cautious and wants to make sure, that if we have to go forward with a more serious surgical approach, it will be one that gives me the best chance of returning to some kind of normal, pain free life. On the surface, the bypass surgery would do that. The reconstructive type surgery as performed by Duke, was not intended for someone damaged by radiation, so that is why is not a good option, especially knowing that it would leave me incontinent, where that hasn't been an issue for me. My doctor is very concious of the daily pain I suffer, and agrees, that we need to come up with something that will eliminate that long term.

Now I am trying to think what I want to tell my future boss, we are suppose to have a lunch meeting later this week. My dr. feels that I should tell him what is going on, as he says that I am not in any kind of medical condition to be working full time. That sucks when I finally have a real offer in hand.

Sometimes life never gets any easier. That's why I am a one day at the time kind of person.

Give my best to John. How's he liking that 3 way tie between the Yankees, the Rays, and the Red Soxs. Of course we know the Red Sox will win the world series this year.

David
I'm sorry about the job aspect being added to all your other difficulties.

One of my wife's uncles had the bypass thing a couple of years ago after bladder cancer. He is on a bag. Reports say he's okay, but I'm sure he hates it. And in relation to working he was confronted by it after he had retired.

I think you and your uro are going to have to judge this in terms of your whole body and mind and future and not just in relation to those painful few cubic inches down below. And drawing a line in the sand for August sounds like the sensible decision after all this time. (At least lines in sand can be scuffed away with your foot and drawn somewhere else if needed.)

All the best
Alf

David, I am so sorry all methods thus far have not been succesful.  You have endured so much pain.  I hope it will end soon, and new doors will be opened for you!

Aimzee

mel - that's the advice my dr and even my former boss is telling me, that when i meet with future boss thursday, go ahead and spill the beans to some degree, too much to hide at this point, as i had hoped to had this behind me and not an issue, but since it is, go for it

alf - a bag is one possibility, but it would allow me to do almost anything again with my life, like taking a bath, swim, horseback ride, bicycle ride, hot tubs, etc, all things I can not do with a catheter, and it would greatly cut down risk of bladder cancer and future UTI's

pasa - thank you, brother

thank you, aimzee

sephie, the job is not the end of the world to me if it cant work out. think i will be laying the cards on the table to the future boss when we meet thursday, at this point i have nothing to lose. if he has no compassion or care, then so be it. i could work my pay at hourly rate and start part time until i am well enough to be full time and back on salary, that way, he wont be paying me for missing work. this is a newly created position, so i am not replacing someone with a set schedule. now, if i end up having the by pass surgery later, it is major, and the recovery will be slow, so i dont know how that will play into it. if i could just get the VA to hurry up my agent orange disability claim, then this job or any other job would become an option, not a need. right now, all the financial burden is on my poor wife. we have done much the last 2 years to eliminate debt eveywhere. got one year left on my car, and without that payment in the way, we could actually get by on one salary. but trust me, i just want to be well and back in my trade and earning real money again.