AUS Nightmare Part 2

Td, really sorry you are having to go through this, with yet another surgery. I hope this resolves your issues. I’m sure it’s fairly uncommon to have a device become defective like this, but I know that doesn’t make you feel better when this is happening to you. Stay tough and good luck with the corrective surgery.

tdn...

Yes it can. Complications can make a man feel ...well...”different”. (They can wear you down). Had the tear after surgery. The abdominal issues. Bladder spasms. Stricture. Clots.

I’m sorry you’re having these issues. Here’s hoping your procedure alleviates them. It did mine.


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Here's hoping they can get it fixed this time.

Hang in there,
Andrew

boy that is disappointing. I am a long lime AUS user, ( about 9 years) while I am not that happy with my, 4 operations to get me where I am now, nothing that happened to me was anything like what you are going through. My last operation was, I guess this February, and already I am thinking, what next?. I don't see me getting yet another revision. At this point I am wondering if a permanent supra pubic catheter might be a better solution. For me I hate going around stinking of urine all the time and pads, which I now wear again, always have that issue plus not to mention leaking on the pants occasionally. The supra pubic might not be all that good but at least you know where most of the pee will go. What are you thinking for your next step?

I've tried a few different clamps but after a day or so irrational sets in so that is reserved, in my case, for short usage. Ever since the prostate removal I have used my most trusted method, condom catheter, by it's self and as a back up to the AUS. While these are comfortable and almost 100%, I cant wear one more than two days. I went 4 days once and when I took it off I went straight to my GP. It looked really bad but it healed up OK. So, I really don't know what to do, but I better figure out something because at the rate my AUS is losing it effectiveness, it wont be but a year or so I will be needed a long term answer. I didn't say before but I am also 100% incontinent. My AUS second revision done in 2013 was pretty much shot to the extent it was barely any help. So from my point of view a permanent catheter would check the most important boxes but I have no idea if it is practical for an active person.

tdn...

I’ve never had an AUS. My earlier post was only meant as a validation of, given enough complications, your (what appeared to me) feelings of isolation that can arise as a result of them.

My prostatectomy has been my only surgery. The “tear” in my urethra was a result of an anastomosis. (The urethra at the neck of my bladder wasn’t healed when the cath was pulled). This (unknowing) resulted in leakage of urine into my abdomen during the week following the first cath being pulled, and re-admission to the hospital for an additional week.

My other complications all stemmed from that one complication. My story is boringly long. (It’s a 6 month to a year long ordeal). What I can say is, in the four years of being on this forum, I’ve yet to see anyone with the number of complications I had from that one operation.. That’s not to say they weren’t here. It’s only to say, if they were, they either didn’t talk about them or I just missed them.

To this day, when people come in for help, support and connection, asking what they can expect, I have very little to share. I’ve never had a “normal” prostatectomy. From my own personal experience, I have nothing to share.

After reading through some of your past posts, my sulfur burping began during my second stay in the hospital. It went away for about a year, and has since returned. (It’s mostly in the morning. In the hospital, it was constant). In the hospital it was diagnosed as GERD and a gastro was brought on board. He performed an endoscopy several months later. (I could not eat for the week I was in the hospital). He found a small hiatal hernia. He said it was not large enough to repair. He said he did not believe that was the cause of my inability to eat during my hospitalization.

Since the doctors have no explanation, I’m left to formulate my own. I believe the hernia was somehow caused by the operation. And that has left me with GERD. Either that or the ascites left some kind of permanent damage to my digestive tract. One doctor told me “ascites plays havoc with your intestinal and digestive system”.

A long winded way of offering a possible explanation to your sulfur burping.

I also noticed you were “mostly dry” before SRT. Then became totally incontinent after. Call me “The Theory Guy”, But that may have had something to do with how your urethra healed after surgery, and the SRT irritated it.

The doctors don’t seem to have all the answers themselves, so why should I not come up with a few of my own? Your case is what gives me serious pause about SRT should I ever need it. QOL is right at the top of my list where “trifecta” is concerned. But it’s easy to talk a big game unless faced with the real prospect. So, we shall see.

Good luck going forward. This is such a personalized disease. And we all have different definitions of what QOL means to us.

Be cool.

Island Time, thanks for clearing that up. Doctors talk percentages and you always hope you are on the side of the positive outcomes. In our cases, we are those small percentages where there isn't a good outcome. I don't want to discourage anyone from any type of operation or procedure. I just relate my own experience...and also want to vent sometimes.
As far as SRT. I have no doubt that I would probably be dry or pretty close to it if I had not had SRT. And I could be dead from not having SRT too. While I am not entirely happy with QOL (don't even get me started about my sex life), I have to credit radiation with putting me in the remission category for the past 5 years. So for me I made the right choice and would do it again.
Now to the Sulphur burping. It has been so frustrating that no doctor and no test could find the cause. Endless internet searches were of no help...except I found one post (and have not been able to find it since) that said radiation could be the culprit. I even mentioned that to two Gastros I talked to and neither believed that was the case. I had never heard about ascites until you mentioned them. Certainly my doctors never said a word or suggested a test for them. Oddly, I have not had a Sulphur burping attack in over two years. So I hopefully your attacks will just suddenly go away as well.

Well, I want to thank you tdn. That last post of mine is incomprehensible even to it’s author.

And I’m only free of this when my own absurdity is staring right back at me.

BillyBob@388's comment regarding age is familiar to me. My hydraulics were working less than top notch before RALP a year and a half ago. Post-RALP it's sort of so-so. Considering that a Post-RALP orgasm is like switching from a fine micro-brew to a Bud-Lite, I am just considering that at least I had a good run before all of this.

I even joked with friends that if things were less than operational post-surgery, I'd just get a new hobby and suggested model railroading since, except for the sight of trains going into tunnels, it seems about as far away from that other activity as possible.

Then I heard that singer Rod Stewart had PCa. Then we just find out he's into model railroading.

https://www.bbc.com/news/entertainment-arts-50403561

Who knew I was on to something.

I drop in here now and then, check for interesting threads, and avoid any that might be a personal trigger.... avoiding cancer forums in the mornings in particular, as it can ruin an entire day. This was a topic I saw a couple days ago and deliberately avoided reading it. Now I can read it rationally. I do remember your story TD, and I.T. I recall you also have had a bad experience. BB, I always appreciate your input.

So the AUS is one of the nightmares of my PCa journey. I did use the condom caths for a year between RP and RT, as pads were insufficient and full briefs just didn't hold enough. It took a while to find the size and style cath that I liked best, but could only wear it for a few days before needing a full day to air out my weenie or the irritation became a problem.

After failing in PT with a Kegal coach, I opted for the AUS in order to get me thru adjuvant RT. The surgery was a nightmare. That and the revision were two of the six surgeries I've had just in the past three years or so... sixteen lifetime surgeries under general anestesia, 24 surgical scars, plus a dozen or so biopsies and such under sedation. But who's counting.

The AUS got me thru radiation, but the RT left me with bowel issues and I believe also dysuria. It's like having a prostate again... frequent urgency (even with the AUS) and incomplete voiding. Plus I still need a pad round the clock as the AUS leaks. My distrust of the urologist who performed the AUS has been a major emotional drain for me, and I will ultimately need to find yet another uro, one that I can trust and communicate with.

The colitis and mesenteritis that followed RT were just the icing on the cake, having had GERD and Barrett's for over a decade now. There's little that I can eat without problems. Fortunately there are good days but much longer spells of bad days and nights. I've had to watch myself go steadily downhill since first mention of my PSA in 2012.

Most of what I do here is gripe about what I've been thru, which hasn't helped my attitude either. So I've been laying low. Just wanted to say TDN that "I feel your pain". Not everyone has had a good experience with the AUS. Or cancer. Or any medical problems.

More than anything, I just wish that I could be treated the way that most other people seem to be treated. Elevated PSA, positive DRE, caught and treated early... and easily. Maybe just RT. So here I am with three years of what has essentially been castration. And I'm not half the man that I was just seven years ago. Wish I had something more constructive to say. Not looking for sympathy. Prato, you probably recall that I first came to HW because no one on that other forum knew anything about an AUS, and it was a major decision at the time.

Well I for one am inspired by all of your heroic stories here, makes me feel a bit better. I am typical post prostatectomy guy using trimix for over a decade with now a mild case of peyronies, somewhat nonorgasmic sex when everything goes right, and a disinterested partner. So what would be the point of straightening junior with an implant for more spontaneous sex and nobody to use it with? I’ll have another glass of wine thank you...

Well said, TD.