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Latest meeting with my Uro/Surgeon

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Posted 7/20/2010 7:34 PM (GMT 0)
Les, thanks for your kindness.

Nurse Annie, in your opinion and in your travels as a nurse, the patients you saw with the "ileal" in place, do you think long term quality of life is better for them with that in place, as opposed to some one that spends years on a suprapubic catheter? If it came down to one choice or the other, which patient is more likely to get back into regular life with the "ileal". I think I have enough long term cath time to know how that side feels. Looking for an honest opinion, wont hold you too it.
Posted 7/20/2010 8:10 PM (GMT 0)
David, if the monkey doesn't go to Mel I suggest you just survive the surgery in the same "the 'H' with it' extraordinary fashion you've handled everything else, and get yourself ready to play baseball at next spring's HW training camp. As a non-sports sort of guy, I'll be the game announcer.

Sheldon AKA Sleepless
Posted 7/20/2010 8:30 PM (GMT 0)

I hope and pray that something go wrigt for you.I have a good friend of mine whom has been incont

for four years.

Posted 7/20/2010 9:24 PM (GMT 0)
Sheldon, no one touches my Sock Monkey but me, lol I don't play sports myself, watch some, in my high school yearbook, all you would see of me is the French Club and the Chess Club, lol.

Goldhorse, thank you, my friend
Posted 7/21/2010 2:38 AM (GMT 0)
David:

I still think I should get that monkey, after all the support I've given you!!

On a more serious note, I would say your latest post is the most optimistic one I've seen from you since I've been on HW. It really sounds like a most feasible solution!! I hope your research confirms this.

Good luck, friend. Nobody is more deserving of a good outcome!

Also, again thanks for keeping us informed.

Mel

Posted 7/21/2010 2:51 AM (GMT 0)
mel, most of posts are just reporting the facts, obviously lots of bad news when things go wrong, but certainly report good news when I get it. The perfect solution right now would be a natural healing in the affected area, but the longer I wait, the more uncertain that seems to be the case. Its a case of the lesser of evils for a solution, and there is still no easy path. And like all things PC, no reset button if you choose wrong or something goes wrong. Taking my time thinking through this, just like I did with SRT, Lord knows I did not want to go through another radiation ordeal at the time, knowing that it would screw me up but good, and it did. When I talked to my uro this week, he still said despite the damage from the radiation, and the ongoing problems and all the pain./suffering associated with it, that I still made the right choice on the SRT, that without it, he said, I would have eventually perished from the PC in a few short years.
Posted 7/21/2010 2:59 AM (GMT 0)
David:

As I said before, I'm sure you will do due dilligence and not rush into anything.. So, I do hope your research results indicate that this is a feasible way to go.

Of course, once you are convinced this is a good way to go, you will need to have a lengthy meeting with an expert in this procedure. Hopefully that meeting will also be a positive one.

You have been describing a fairly miserable existence over the last year, and it sounds like you got a shot at greatly improving your QOL!

Mel

Posted 7/21/2010 3:12 AM (GMT 0)
Mel,

I think the data in my signature just covering the past 10 months alone speaks for itself. I have done the best I can in a terrible situation. I am still a husband and a father, and still have to deal with a million and one things in my normal day to day life. With each new setback, with each new cath, I can see the disapointment in my wife's face. Of course she is fully supportaive, she just wants to see me well. Two years ago, I was on top of the world, healthy and making good money, with lots of plans for the future, and optapmistic about my life in general. I have said from day one, that I gross underestimated the power and tyranny of having PC. What has become my reality since dx, is beyond any worse case scenerio I ever thought of at the start of this journey. I simply expected to have a major surgery (been there done that), heal up quickly (which is my normal case), and simply get back in the game. But like all of us here, we have to deal with the cards we get, and make the best out of it. Its simply a combo of personal faith, love of family, and a strong will to survive that is getting me through all of this. I have said all along, that I am not that strong, or have special abilities to make it through the bad parts, but I am stubborn enough (perhaps stupid is a better word) to where I am refusing to let PC take me away and destroy my life, I intend to get the last laugh on the subject. Least that is my mental game plan.
Posted 7/21/2010 5:01 AM (GMT 0)

Hi David,

What a difference a couple of days make!  I was praying you would have some better options and they now appear to be in the table.  I'm happy for you.

James C may have been reviewing an article like the following about urinary diversion surgery which explains more than one option of where the urine exits:

http://findarticles.com/p/articles/mi_g2601/is_0014/ai_2601001429/

I truly hope you find more positive informaton about "door number three," if that is what you desire.  yeah

All the best to you and your bride, my friend.

Barry

Posted 7/21/2010 2:36 PM (GMT 0)
Thank you much, Barry.
Posted 7/21/2010 2:56 PM (GMT 0)
Sorry I didn't get back sooner. Yes, Barry, that's what I was speaking of, the routing of urine into the large intestine and voiding thru the rectum. No catheters, stomas, or anything invasive. As mentioned in your quoted article:

Ureterosigmoidostomy. The ureters are attached to a portion of the large intestine, the sigmoid, which allows the urine to flow through the large intestine and out through the rectum.

This method is why I was asking about diarrea or anal leakage. I did misunderstood what David was talking about in his first post, and assumed he was talking about this procedure instead. Seems to me this would be a better, less invasive, if maybe somewhat more "messy" procedure, but still- you would get away from anything invasive, hence susceptible to infections, etc. That's if one has good anus control to prevent leakage.
Posted 7/21/2010 5:03 PM (GMT 0)
James, part of the problem with that surgery, is that I already have radiation damaged rectal areas, and it would keep you in a constant state of having to go to the bathroom. If something later went wrong with your rectal area, then you would not be able to reverse to something else. My dr said that procedure was rarely done anymore, because people with bad bladders or bladder pc, they can easily nowadays make a new bladder, and assuming the rest of their urinary system is intact and working, i.e. bladder neck and urethra, they can almost make it like nothing happened. Again, I am being limited in choice because of the severe radiation damage to those areas.

david
Posted 7/21/2010 5:23 PM (GMT 0)

Hi David,  As a fellow nurse, I really like the idea of your wife speaking to the man with a conduit in place. Then possibly you can talk with him; this is exactly what I would do. Field nurses rarely see post surgical patients long term, so I saw most recover, and go back to their lives. I did see one patient who had a conduit for many years, and was referred for other issues; she seemed to have no problems with the conduit. My kids got so tired of me saying "You have to do what you think is right" that it's now a huge family saying. But it is true, research, explore, talk lots with your MD, your wife, your family ,and then decide; you will do what is right for you. You are so knowledgable and are taking the time to make this choice, it will be the right thing. smurf   Nurse Annie

Posted 7/21/2010 5:46 PM (GMT 0)
Nurse, thanks for the answer. Just was looking for a blunt personal opinion. I gather opinions here, and elsewhere with all of my journehy, so definitely not trying to put you on the spot or asking you to tell me what to do or which way to go. Another way of asking, if you were a patient and you still had years of life ahead of you, which would be the lesser of evils, to be on a perm SP catheter, or to go the ileal way. after 10 months on the SP, I know first hand about the limitations in my life and lifestyle being stuck on a catheter for so long.

thanks for helping.
Posted 7/21/2010 6:07 PM (GMT 0)

David, If it were me, I  could personally deal better with a permanent solution. I would check out the conduit! Will be thinking of you! Nurse Annie (possibly the worst patient ever, I couldn't even put up with me smurf )

Posted 7/21/2010 6:19 PM (GMT 0)
Thanks Annie. You are not the worse. My wife-nurse is the worse possible patient in the world, totally non-compliant if it is her health issues we are talking about, lol. You nurses have that reputation, lol. But gotta love those nurses, often know more than the doctors they serve.
Posted 7/22/2010 9:59 AM (GMT 0)
Hi David,

Just checking in to see how you are doing.  I am glad Nurse Annie is around to give an opinion for you to consider.  This condition must be conquered.  Take care!

Aimzee

Posted 7/22/2010 2:52 PM (GMT 0)
thank you aim, all opinions are welcomed, always open minded
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