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Posted 7/19/2010 1:55 PM (GMT 0)
Like Willie B mentioned kidney damage and other issues possible if one has total blockage for to long of a period. If you have bizarre pains in that area, seek emergency room if you have to.
Posted 7/25/2010 2:01 PM (GMT 0)
Sunday - July 25th - What is is about Sundays??? - an Update

It was just last Sunday afternoon that I had a total blockage. I woke up this Sunday morning, because I felt all this pressure down below. As soon as I tried to sit up, starting leaking everywhere, by the time I stood up to go to the bathroom, the urine was just pouring out of me, zero control.
My back was aching, as well as my bladder neck, what a way to start. Sitting on the toilet, a lot more came out despite the cath, and ended up doing a #2. When all done, I did an irragation, almost afraid to. But it pushed through and retracted fine. Did it twice, not clogged. My only explanation is that I must have pinched the tube sometime during the night or early morning, that and having an immediate need for a BM, which always builds up pressure there, perhaps a combo of both things.

I have noticed, that since radiation, if I have any cath problems, or if its blocked on purpose for testing, I appear to have total incontinence, which is sad, because prior to radiation, I was 100% tight as a drum, not even a drip or a drop, and I was one of the fortuante ones that went dry fast and easy.

As each passes, I am leaning more and more to having the urinary diversion surgery approach. Even though it would be another major surgery, and involved a long recovery time, and I would have to get use to another "life" change to some degree, it would indeed end this nightmare world of catheters, spasms, endless pain, sore bladder necks, incontinence, wearing a pad and a cath when I go out, and feeling like I am some busted up piece of shi# all the time. Tired of it all, tired of worrying about dragging a bag 24/7, where is the tube? is it kinked or wrapped around? and then to wake up this morn just to wet myself, despite having a cath, terrified that I am blocked again.

Sorry, an early vent. I can not spend my life like this.
Posted 7/25/2010 2:12 PM (GMT 0)
Hi David,

So sorry that it is like this for you.

It is so understandable that you in want to close this chapter of your life with a long term solution, even though it requires major surgery.

I can see in everything you say in your threads that this one issue is affecting everything you do, how you sleep, how you feel emotionally and physically, your ability to work and your ability to live day to day without having to consider your medical situation at every turn.

It's quite amazing that you still have the ability and empathy to still reach out in this forum to people who are going through a lot less than you are and helping and encouraging them with their issues.

I hope that the opportunity of the long term fix is possible sooner than later.

Best wishes,

An

Posted 7/25/2010 3:41 PM (GMT 0)
Purgatory, perhaps it's time for you to sit down with your medical team, urologist, radiation oncologist, surgeon and have a long heart to heart talk...Like you said, there are limits of what humans can endure and you sound like you have reached yours...

If your bladder has been badly damaged by the radiation, for whatever reason, you need to move on, repair / fix the problem, and learn to live with the new plumbing system..Anything that works and is pain-free would be a big improvement and probably not as bad as you imagine. Has your medical team explained ALL your options to you?
Posted 7/25/2010 4:15 PM (GMT 0)
Sorry to read about that David...I don't think you're venting. I think any reasonable person would do the same thing. There is a time when you have to say to yourself "enough is enough". Sounds like further grounds to pursue the ileil conduit option. You should be able to hopefully put all this trouble behind you.

I remember when my dad had radiation, some years later he seemed to have an trouble holding it in. He didn't talk about it much. He had radiation and seeds, not sure which one was the cause of it though.
Posted 7/25/2010 5:51 PM (GMT 0)
Yes, I have discussed all possible options, that was the point of my last visit with my uro/surgeon. The next appt. is in about 3 weeks, and he's waiting to hear what I have been thinking, as I have been researching through the available options. I can stay in an indefinite holding pattern like I have been doing the past 10 months, but now have reached the point where I almost can't stand living any more like this. Time for the nightmare to end and for me to wake up to something better.
Posted 7/25/2010 7:51 PM (GMT 0)
Dear Purgatory:

I hadn't been on this site for a while. I was hoping when I posted today that I would find
that your problems had been solved. I am sad to see that this has not yet happened. I hope and pray you and your doctors are able to find a good solution to your issues.
Posted 7/25/2010 7:59 PM (GMT 0)
David:

ENOUGH!!! Enough pain and enough living this way when alternatives == reasonable ones -- exist.

I do hope your next step (after your next local visit) will be doing what you should do, which is a personal consultation with the expert who does the procedure (I assume this is someone other than your local urologist?).

I so hate to see this situation and I'm thrilled that it might be correctable.

Mel

Posted 7/26/2010 12:40 AM (GMT 0)

An38 said...
Hi David,

So sorry that it is like this for you.

It is so understandable that you in want to close this chapter of your life with a long term solution, even though it requires major surgery.

I can see in everything you say in your threads that this one issue is affecting everything you do, how you sleep, how you feel emotionally and physically, your ability to work and your ability to live day to day without having to consider your medical situation at every turn.

It's quite amazing that you still have the ability and empathy to still reach out in this forum to people who are going through a lot less than you are and helping and encouraging them with their issues.

I hope that the opportunity of the long term fix is possible sooner than later.

Best wishes,

An

 

 

AMEN!!  I couldn't agree more.... wish there was more that I could add David..... but An hit the nail on the head. 

Hope you get your life on track again... my prayers are with you!

Posted 7/26/2010 1:35 AM (GMT 0)
Yes, enough is enough, David.................I cringe each and every time I read a post that you've generated, not wanting to hear the same old, and hoping things have changed for the better. Here's hoping you can deep-6 the existence you've been leading, and on to an alternative that provides QOL for you.

Arnie in DE
Posted 7/26/2010 3:16 AM (GMT 0)
Thank you An and Vam both.

Mel, the solution will not be easy, nor the choice(s). Ultimately, it comes down to what I think is best for my body. Still sorting it all out, and like all things PC, there are no guarantees or re-do's, we all know that. Any thing I do from this point, will be non-reversible, so that makes working through all the potential good and bad points really tough. There are always trade-offs, and I have to think clearly through them, not reacting just on pain at a particular moment or a bad emotional day. Whatever happens next, will be it for me. about all I am 100% settled, is that after 10 months on an SP cath (not counting all my previous caths), I do not want this to be "me" for the rest of my life. For those that have to be on tubes for life, my hat is off to them, because I have had a good taste of what life is like for them. I have to find a way to re-gain a better quality of life, even if it means biting the bullet with a tough surgery and recovery ahead, ultimately it would be worth it from my vantage point. I have already suffered much through the entire PC ordeal (surgeries and radiations and complications), that a few more months is okay with me, if I come out of it in better shape, and can return to some simblance of my former life. So all these thoughts are weighing heavy on my brain the past week or so, and for the next few weeks ahead until I meet with my doctor.

David in SC
Posted 7/26/2010 3:43 AM (GMT 0)
David:

I understand. You need to research this and see if there truly IS a feasible solution.

Assuming your best guess/researched answer is YES, I would urge you to find someone with true experience/expertise who you can first CONSULT with before making a final decision.

Of course, it is your body and your ultimate decision. That is true for all of us fighting all phases of this darn disease, PC! But thank goodness for this group where we all can offer opinions, share knowledge and experiences, and provide support as best we  can.

Mel

Posted 7/26/2010 11:51 AM (GMT 0)
David, I do not post very often, but I follow your ongoing story with some interest. I cannot say any more than has already been said, but I would just like to add my own best wishes, and hope that the future holds some solutions to your problems.

All the best from England.

Posted 7/26/2010 2:33 PM (GMT 0)
thank you, dogbot, this is a unique one man fight at this point
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