HealingWell
Search Close Search
☰

Scheduled for my AUS Next Monday

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 6/22/2020 2:19 PM (GMT -5)
Hi all 1st post. Was looking for information on post AUS bicycle riding and stumbled across posts by knotreel. Sir, if you happen to see this, did you find a saddle that worked? That lead to poking around and now this post. Mostly an intro and a question.

My prostatectomy was in October 2018. Did the kegles for months then was told told the problem was I was "non-compliant" because I couldn't make a connection between radically changing my diet post-surgery when none of the diet items, coffee, whatever, had caused a problem pre-surgery and none of the changes did anything for the 100% incontinence. So I figured this is not going to change and was the last time I saw that Nurse Practioner. Despite the "If you get an AUS, I'll see you again when it doesn't work." Gee, thanks. LOL, anyone else responded to the "How many pads a day?" question with "I'm 100% incontinent Dr.." and get the same "How many pads?" question . . . So anyway, here we are. Not happy, but figure it's this or clean Foley bags the rest of my life while hoping the plumbing doesn't fail . . . Seems like "most" are happy with the AUS, but it's all statistics and what the heck, I'm already an outlier. Rambling, but it's been a lonely couple of years. Sorry.

Ron
Posted 6/22/2020 2:50 PM (GMT -5)
I hope the device will work great for you.
I will also state that your medical 'helpers' could have shown more empathy.
Posted 6/23/2020 9:18 AM (GMT -5)
That's pretty shocking treatment from the nurse practitioner! This was life changing surgery for my husband, who like you, was severally affected by his prostatectomy. He had a much more understanding and kind doctor who realized that even with time, PT and diet changes, the incontinence was not going to improve. His AUS surgery was 6 years ago. He has some stress incontinence and wears a light pad for security. Some guys need an adjustment after a while, but he's still doing fine and grateful that it worked. You will be amazed at the number of medical professionals who have no idea what you're talking about when you tell them you have an AUS. He's had many opportunities to inform them.

And to answer your original question, he rides a bike using an Easy Seat by Hobson. The urologist recommended a recumbent bike, but this has worked for him. Best of luck with your surgery.
Beth
Posted 6/23/2020 11:08 AM (GMT -5)
Shiseiji, I was a 4-6 pad a day guy after RALP. My uro had told me to see a physical therapist, which I did, and things never really improved so a year later she gladly installed the AUS a year ago. It gave me my life back. I wear no pad at all and have only had the occasional, inconsequential leak. I run, swim, lift weights, and am pretty active in other ways.

Regarding the bike, I am not an avid bicyclist but do like to go out for a ride. By the time I healed up enough last fall our weather changed to winter and it wasn't until a month or so ago that I gave it a try. My bike is a Specialized, comfort series I think, with a split seat. Regardless of how I adjust it I can't keep it from putting pressure wear the AUS cuff is. The cuff distorts and causes a leak. I am less concerned about the leak than I am with the possibility of damaging the cuff. I looked online and found very little help in this area. I went to a local bike shop and sat on a bunch of saddles and none of them feel right. One was sort of OK and it was one of those larger style seat shaped like an equilateral triangle. They sold me a new one from old stock for 25 bucks and my plan is to mount it and possibly saw off the horn. If this doesn't work I'd probably just rid of my bikes. I am more of a runner and swimmer anyway.
Posted 6/23/2020 11:09 AM (GMT -5)
DYank, thanks for the heads up on the Easy Seat. That just might work and, compared to many bike seats, the price isn't too bad.
Posted 6/23/2020 11:12 AM (GMT -5)
Shiseiji, BTW, I kept a journal from the day on AUS installation through activation where I detailed what recovery is like. It's really something that the medical professionals know very little about. I have shared it with a couple others here who found it of value and would be glad to send you a copy if so desired.
Posted 6/23/2020 12:39 PM (GMT -5)
Thank you all. I'm not an avid rider, but am also a volunteer bicycle maintenance instructor at a local bike coop so try to ride some. Due to minimal L4/L5 cartridge, running days are over, I have a huge Brooks B-190 saddle, but I suspect the horn is still too big. Recumbent or a trike is always an option if I can't make a saddle work. Vince, yes, thank you very much for the offer. I'll drop you a note from ron.kellis

Ron
Posted 6/26/2020 4:54 AM (GMT -5)
I am one of the failures with AUS. I had to have it removed a couple of weeks after surgery because it was defective. I decided not to have the surgery again. This is not to discourage you but to tell you of possible options if you decide not to do AUS. I am 100 percent incontinent. I can easily go through 20 pads in a day, so life can be pretty miserable. The best option I have found is a penile clamp. It is far from perfect, but at least it helps me reduce the number of pads used per day to about two to five...depending on how active I am and how effective the clamp works. It does fail sometimes and sometimes at the most inopportune times and in the most embarrassing way. I don't wear it to sleep, so I have to wear a pad and always put a incontinence sheet on the bed. Oddly, depending on how I sleep I can end up being fairly dry. Sleeping on my side only. As far as bikes are concerned, I have a recumbent bike and it works well for me...when I use it. I have to drag it out of a room to use it, which can be a pain. In any case, good luck with the surgery and I hope AUS provides you with good results!
Jim
Posted 6/26/2020 8:01 AM (GMT -5)
I have seen numerous comments here and elsewhere suggesting a recumbent bike as a way to reduce pressure on the perineum. That seems like a reasonable solution but I live in Montana’s largest city where we have the worse drivers in that nation and a very strong anti-bicycle sentiment. To ride a regular bike one has to have a bit of a death wish and to get on a bike that sits so low as a recumbent is almost a guarantee on being run over by one of the big pickups that dominate the landscape. One of our legislatures even tried to get a bill passed to outlaw bicycle from anything other than a dedicated bike path.

Even as runner I have had numerous close calls due to the complete disregard for pedestrians even when in a cross walk on a walk light. It’s scary out there. At least I feel safe in the swimming pool.
Posted 6/26/2020 8:43 AM (GMT -5)
VinceMT, let me clarify. My recumbent bike is stationary. Only thing I have to dodge is my wife walking in front of the tv while I am trying to ride it.
✚ New Topic ✚ Reply