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PostPosted: Tue Feb 21, 2017 3:56 pm 
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Joined: Sat May 03, 2014 8:08 pm
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Location: York, Maine
Brian, thanks for the updates. I know I've been interested in reading the updates to see how you've been making out.


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PostPosted: Fri Mar 17, 2017 9:25 am 
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Joined: Wed Aug 19, 2015 11:49 am
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Location: Jacksonville Fl
So its been 6 weeks since my surgery, and I just saw my doctor's assistant as another followup.

I told her about the tissue I passed, and she appologized while saying it should not have been left in me like that. The blood clots, bleeding, and soreness are all typically expected though. In fact she told me to expect it for another 2 weeks or so, then I should start feeling better in earnest.

Apparently with green laser surgery, the recovery time is almost double when compared to the traditional hot knife surgery. Pain and bleeding too it seems. I am still needing pain meds every now and again to help control it, though much less now than I was needing since it's mostly not too bad any more.

The surgery its self was not a failure, but not a success either. I am still able to retain urine when sitting for a while, or sleeping in bed. This means I'm still getting those blasted urges, and still having to push to pee while also waking several time each night. The amount of pushing I have to do is less than before though, so that's a plus.

Still, this isn't enough so it's possible I may have an eighth surgery in my future. I told my doctors assistant it won't be any time soon though, and just requested another follow up in six months to decide about it then.


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PostPosted: Sat Mar 25, 2017 11:41 am 
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Joined: Wed Aug 19, 2015 11:49 am
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Location: Jacksonville Fl
Well it's been a couple more weeks since my last update. Anyways, I have been getting better obviously. The pain and bleeding both have been very, very, very, slowly getting less and less and I haven't been needing my usual oxycodone to manage it lately either! Yea. However, as of a few days ago (today is Mar 25 2017) I did still had a little of both. It was mostly all manageable though, but I am still needing to sit on a perennial donut to alleviate the pressure down there.


Except things have now also taken a turn for the worse. A couple days ago I started having to strain to pee again. Then on Thursday night I was no longer able to pee no matter how much I strained and pushed. I started getting more and more intense bladder urges, and their frequency kept getting closer and closer. When they got about 3-4 minutes apart I was on the floor in a ball of dizzying pain.

My first though was ok, time to go to the ER. I then immediately thought it would be 30-60 minutes before I get seen, and all they will do is put a catheter in me anyways. Duh, I still have plenty of folley catheter supplies my primary doctor gave me a couple years ago, so I decided to just try and put one in right then. (note; I've been self foley cathing for well over a decade under my PCM's guidance)

Thankfully it worked too. I had a difficult time getting it pushed past two distinct obstructions. With getting past the second, my bladder finally started to empty. No kidding, my catheter drained pee from me for 40+ seconds (albeit with a weak stream). God, no wonder my urges were that intense, it had to of been 300+ml when my bladder is barely even able to normally hold 50 now. Anyways, I was then able to put the catheter in the rest of the way and fill up the balloon. I do know my external sphincter has been blown away, and is no longer an obstruction. I do believe the first obstruction was a new stricture (which I've had two others form and block me off before). The last obstruction was obviously my internal sphincter (which obviously was not removed as my surgery intended), as when I got past it I was in my bladder and able to drain pee.

For now at least I am stabilised. Yeah, or not really. Well I called my urologist first thing on Friday. He was out of the office, and would be in surgery on Monday too. They said they would call me Monday or Tuesday morning to let me know when they can get me in for a walk in. I told them to make my appointment a cystoscopy (camera up the urethra), and asap, so we can verify what is going on with me this time. Since I've developed a sensitivity in my urethra, this catheter is yet more pain all over again. At least I still have that oxycodone to manage it though.

Oh, and to complicate things even more, I have a trip and flight coming up in late april (in about a month from now), that I cannot miss. This EXACT same thing happened to me last year too. Last time, my urologist used urethral sounding rods (medieval torture devices) on me to stretch my urethra back open. The series of increased size rods hurt like a sob, but did work to keep me open for a little more than a month and half. Something tells me I'm in for it again, and I am not liking that though at all.


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PostPosted: Sat Mar 25, 2017 5:27 pm 
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Joined: Mon Feb 14, 2011 9:57 am
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Location: UK
Sorry to hear this Brian.

I have to ask, is there a reason you can't have a suprapubic catheter? Surely this isn't worth so many surgeries and pain.


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PostPosted: Sun Mar 26, 2017 4:18 am 
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Joined: Sun Jan 25, 2015 9:13 am
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Hi Brian
sorry to hear you are going throuh this again

rob


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PostPosted: Sun Mar 26, 2017 8:13 pm 
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Joined: Sat Mar 29, 2014 11:45 am
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I regretted reading of your latest difficulties with recovery from a sphincterotomy. I keep thinking, after all the procedures you've had there, could you have developed some scar tissue? I've had the sound, which worked, although I agree, just looking at it before the urologist uses it on you, does make medieval torture seem preferable. Here's hoping you will get things under control soon, or at least before your next trip.


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PostPosted: Mon Mar 27, 2017 9:27 am 
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Joined: Wed Aug 19, 2015 11:49 am
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Location: Jacksonville Fl
tangerine wrote:
Sorry to hear this Brian.

I have to ask, is there a reason you can't have a suprapubic catheter? Surely this isn't worth so many surgeries and pain.


Good question, I have not had good luck with catheters in the past, and due to my bladder urges I would have to have a catheter in place 24/7 to stop it from filling (and therefore prevent my urges). I did heavily consider a low pressure suprapubic, but again would always need that catheter, and of course a collection bag. And as bad as a catheter is for me, those bags have also been an uncomfortable pita for me too.

As you may be aware, I am also much more comfortable and like wearing a diaper too- I just always have been.

So, before even my first surgery the simplest and most comfortable solution seemed like removing my sphincters would be the best approach- for me. Whereas a suprapubic would have requied a more dramatic "reconfiguration", and dependency on bags and catheters which I still don't feel comfortable with.

Of course I was also misinformed and led to believe just three or four surgeries would have been enough. And they have been incrementally working a little more each time, so while not a success yet they haven't been failures either.

I suppose at this point I'm sort of invested in this approach too. If that makes any sense. It keeps seeming with these few last ones like just one more will be all I need too- if only though right.

Lastly, I guess I've been a bit hardened to expect pain in my life. Ever since my car wreck 22 years ago, I've always been in constant pain. I've come to realize that going through a moment of intense pain to lessen it later, is better than having moderate pain all of the time too. Yeah, these surgeries have been WAY more painful than I signed up for (especially this last one with the laser), but to me a surgery is almost always an acceptable risk when considering the intended or expected relief it is to bring.

That's why I opted for the sphincterotomies instead of the suprapubic. Now if only they'll get me to where I need to be.....


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PostPosted: Mon Mar 27, 2017 9:56 am 
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Joined: Wed Aug 19, 2015 11:49 am
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Location: Jacksonville Fl
Patrick wrote:
I regretted reading of your latest difficulties with recovery from a sphincterotomy. I keep thinking, after all the procedures you've had there, could you have developed some scar tissue? I've had the sound, which worked, although I agree, just looking at it before the urologist uses it on you, does make medieval torture seem preferable. Here's hoping you will get things under control soon, or at least before your next trip.


Oh I'm sure I have scar tissue now. It's probably what closed me back up again and forced me to start staining again, which then led to my stricture.

This is exactly what happened to me when they tried removing my external sphincter too, so it's not a surprise really.


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PostPosted: Mon Apr 03, 2017 10:06 am 
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Joined: Wed Aug 19, 2015 11:49 am
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Location: Jacksonville Fl
Ok, so I need to give another update on my blockage. I went to see my urologist, and had a cystoscopy done. And I looked completely open.....

My urologists best guess it that I had a piece of tissue that broke off and was in my bladder. It eventually got stuck in my urethra, and blocked me off. Putting in the catheter pushed it back in, and opened me back up again.

My only remaining concern is if it will block me off again in the future. My urologist said it should eventually dissolve on its own, and may never cause another problem. So I'm left hoping for that.

In the mean time, I'm still left with having to strain a little at times, and other times I drain freely. And position does not seem to matter, except when I'm sitting or lying down, then I tend to have to strain more often.

I have no idea whats going on. I know sitting will put pressure on my urethra, so I can expect that. However, while lying down (on my back or side), and even when just standing still, I sometimes just can't go and other times don't even have to think about it. Uuugh, this is frustrating.


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PostPosted: Mon Apr 03, 2017 11:16 am 
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Joined: Sat Mar 29, 2014 11:45 am
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This situation must be frustrating. Keep your urologist on top of it, and keep us informed.


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