Connect
Artificial sphincter: Was it difficult to learn how to use? Tips?
How difficult was it to learn to use?
I had another visit to the surgeon yesterday & showed him a spreadsheet from the last week, showing uncontrollable leakage of around 500ml per day. He didn't think that was a big deal (3 months post-op) and said that I'll just have to put up with it.
After 5 or 6 training sessions with PT, I still can't move my pelvic floor at all. He said he's never had a patient who can't exercise his pelvic floor muscles. Well, I can't. I can't be the only one in the world.
He's referred me to a "sphincter specialist" who will "assess" me.
I dread to think what that involves.
But I may be able to get one installed 9 months after surgery, rather than wait for a year of uncontrollable incontinence (can't see me living through a year of this).
But then he said that he doesn't know if I'll be able to manage the artificial sphincter - implying that I'm so stupid & uncoordinated, I won't be able to push a button.
Like
Helpful
HugInterested in more discussions like this? Go to the Prostate Cancer Support Group.
Connect
Hi Grandpun,
I'm glad your AUS is working well.
I've had a severe setback with mine. I developed a "rectourethral fistula" where my urine flows into my rectum so I have frequent watery diarrhea. I'm still following up with the doctor that installed the AUS to see what can be done to fix the problem.
Regards,
bwjb
@ritanana
I am sorry to hear about your wife. It seems life has a way of getting in the way of what needs to be done. I hope all is well now for you and your wife.
@smc24 who did your AUS surgery? Also, any cyclists out there who had an AUS? Thanks.
Dr. Mathew Mellion. Indiana University Health, Methodist Hospital Indianapolis performed my AUS. He is very well known for the surgery.
Yes, I ride a bike frequently and have for years. But, I have changed to an unusual seat which puts all the pressure on the butt, like a chair, not on the crouch. I keep my bladder as empty as possible to available stress leakage. I wear a Depends, only for safety, not out of necessity.
After my AUS installation I asked my surgeon about bike riding. He said as long as it didn't put too much pressure on the perineum it would be fine. So I got this bike seatl
https://www.hugeoaks.com/products/hugeoaks-width-continuously-adjustable-bike-seat-comfortable-prostate-friendly-bicycle-saddle-for-mountain-bikes-road-bikes-city-bikes-exercise-bikes
All the pressure is on the site bones.
Be advised this seat is NOT comfortable. It took me about a month to get used to it but it does what's advertised
@tuckerp I switched to an incontinence clamp. The limitations imposed by the external catheter (including but not limited to, not wearing shorts or bathing suit) plus the thought of carrying around a bag of piss all day, lead me to switch to an incontinence clamp. No compromises to QOL. Couldn’t be more satisfied.
@lsk1000 great. I also think the clip teaches your brain to hold it and go to the bathroom. I have completely taken my brain out of the picture and it just runs free. What I found is I had to have the clip squished to the last notch to prevent leakage. I also use the more aggressive insert. That still allows some leakage when at the gym or working outdoors or about anything straining. Plus my penis would get sore from the squish. I wear the clip for short durations or swimming and wear shorts but generally I wear the bag. Years of experience now on where to place the bag, length of the drain tube, how to strap the tube to my leg, experimenting with condoms, where to place a dab of lubricant to prevent sticking, flushing everything morning and night with peroxide. Now takes me about 10 extra minutes to start my morning and off the to gym. Ideal- far from it. Just trying to make the best of the life we were dealt. I am glad the clip works. I just have trouble wearing a soggy pad.