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. I had the AUS activated on 4/3. For the good news, I am now entirely dry. I don't even need to wear a pad inside of briefs and can go back to wearing boxer shorts, which clearly would not work with wearing a pad. The activation was kind of rough with the urologist having his female Physician Assistant do the activation. There was quite a bit of tugging and pinching of the scrotum. I had been concerned that pre-activation the device wasn't hanging low enough in my scrotum to allow me to feel with one hand where the two tubes were at the top of the device which directions say should be held to stabilize the device when operating it. But I can now feel them with my right hand while I operate the pump with the left hand. One apparent problem is that I am NOT experiencing the 60 to 90 second flow when I pump the device. Instead I get a squirt, generally a spray often missing the toilet bowl, followed by 5 or so seconds of a slow stream before it peters out. I have to pump the device several cycles in this manner to feel that I have emptied. I messaged the urologist on the portal about this difference in the way it functions but he didn't sound concerned in his response and it is several months before I am scheduled to see him again. I generally get an urge to urinate about every two hours, but I know I am not drinking enough water, which I need to do to cut down on UTIs, and wonder how frequently I will need to urinate when I increase the water intake. I am going to get a post void residual test at my local urologist to see how much remains after a cycle of squeezing the pump several times in a row to empty. All things being equal I am happy with the results. It is a luxury to not squirt a leak when I do any of the activities that used to trigger stress incontinence.
thanks tomorrow is my big install day. so many different things can happen I guess just do your best and pray it works correctly How do I keep from getting infections on the incision. Right now I have to use a clamp and 15 lg pads a day will this slow down after surgery 0r did it for you after installation. I have a case of heart failure also so I need to stay hydrated drinking a lot of water is necessary, JUst standing up is a issue, so I stand alot instead of sitting down. Remember those days glad it is over for you cant wait.
Good luck.
I'm still waiting for a surgery date.
In terms of infection in the incisions, I've read that we need to change our pads even more frequently than we do now, to avoid soaking the incisions in urine for an hour.
Makes sense.
You'll still be incontinent while the surgery heals for 6 weeks.
Then it's activated.
Good luck with your surgery. I guess I am lucky. I continued to go through 6 or so pads a day after the surgery until the AUS was activated and I never had an infection. My incision based on the operative notes sounded fairly short. Good luck with the operation and recovery.
I had the same concerns about having an operation that was going to insert a device in my body! Yikes. I was up to 3 pads a day and it was getting worse. The operation was successful yet my recovery time was longer than usual. I kept very clean so I had no infections. My recovery was more from the sharp pains I was having do to, the doctor figured, nerves that were repairing. A drug, gabapentin?, was given that calmed the nerves and I now have no pain whatsoever so ever. As far as using the device, it works as advertised and I now only have a pad ‘just in case’. I am able to relieve myself normally and can do it without concerns about others wondering what I’m doing. I caution getting off pain meds too early. Use them if you need them.
If you can please tell what to expect next. My implant was april 14th I am scheduled to be activated on may 19th and wondering the same as you I can tell its there but what am I suppose to hold or press. Also Lots of soreness still was it like this for you Good luck I sure hope this works well it has been a long trip to get this far, who knew such a small thing could cause such a mess of ones life.
Thanks
That's what May 19 is for.
The surgeon will show you how to use it.
From what I've seen, you use one hand to steady the device by holding the 2 tubes at the top of the box & use the other hand to push the button.
From what I've read, it can slip around quite a bit.
Yes, the surgeon will (SHOULD!) carefully instruct you in its use.
Including how to deactivate it. That's important should you ever need a catheter. Careless catheter insertion can damage your urethra and/or AUS cuff.
Yes, mine is slippery like a greasy bean. But as you perfect your technique (as I did) over a short time you'll find a way to steady it.
I never even feel the tubes or reservoir, just the activation bulb.
Don't worry too much. Life will bet MUCH better for you.
-
Like -
Helpful -
Hug
1 ReactionIll make sure I get a good lesson MUCH is very encouraging thank you for this I am worried for sure will try and let it go.
Hi "bwj",
I didn't see a reply to your one comment, " Instead I get a squirt, generally a spray often missing the toilet bowl, followed by 5 or so seconds of a slow stream before it peters out. I have to pump the device several cycles in this manner to feel that I have emptied."
That's pretty much how I started out. And now maybe you have your own technique.
Anyway, now I've learned to do one good squeeze with everything well aimed to hit the bowl; then repeated squeezes to continue peeing like a race horse; then do some more squeezes till flow is done. I give it a couple seconds or more to be sure I'm empty and that's it. Done.
Hope you're doing well and enjoying more freedom from the bathroom & pads.