Hi KW,
I went back and re-read everything on your journey… and the last report on your updates was everything was going really well after your cystoscopy… on February 20th.
Now while on Chat Room March 3rd you mentioned you were back to quite a few pads a day. Please update with the specifics so this part of your journey is documented…
As we were talking with Swim ~ I asked if you were on BP medication and you said you hadn’t been on it since just before surgery…. I mentioned that high blood pressure medicine can relax the sphincter muscle and leaking would be more noticeable… I wanted to make it clear that in no way was I saying to stop meds…. I knew there was a statement in my book and was going to send it…. So ~ will attach it below with several other areas I thought you might be interested in.
Excerpt from book listed below:
** (Note: If you are being treated for high bloold pressure with an alpha-adrenergic antagonist such as Cardura, ask your doctor to put you on a different kind of drug. Cardura makes the sphincter relax, and can make incontinence worse.)
** Caffeine, especially, is a powerful pharmacological agent that increases the frequency and urgency with which you need to urinate.
Excerpt from previous post by kw:
The news! Overall the urethra looked good. The sphincter muscle looked and worked fine. He was somewhat concerned that the scar tissue might not let the bladder empty like it should
?????Does your doctor plan to do anything about
the scar tissue????
Also ~ we talked about
kegels and you getting back to the gym….. This really is important.
We stress in every posting that you can overdo the kegels and make the sphincter tired.
In your case….. Your doctor said to double up…. And we would surely do this and would be starting this immediately. Every situation is different. !!!!!
The questions we have….
1. Did you do your kegels on a regular basis during the past 5 months?
2. Do you exercise at all? And if yes ~ what type of exercises?
In our conversation I mentioned that Buddy started doing the stair machine at the Y… Here’s what he finds works well for him. Start out slow and over the weeks build up to a longer time period.
You must listen to your body. Buddy’s 5’9” and weighs 162 and is in good health!!!
Reminder: We are in our 11th month of healing/recovery
He started out with less time…. And built up to the current time…
2.5 hour workout at the Y! 2 days / week *Tuesday & Thursday
20 minutes walking the track
20 minutes upper body stretching and arm weights
12 minutes stair machine. He does the full step (not the little short ones)
20 minutes walking the track
20 minutes upper body stretching and arm weights
12 minutes stair machine. (full step)
06 minutes walking the track
15 minutes swimming
15 minute “nice hot shower”…. ahhhhhhhhhhhhhh
After re-reading the information on Collagen and Artificial sphincters in our book….
We personally would do everything in our power to get this little guy (sphincter muscle) to work on his own. If it means you have to start a regular exercise routine to get it done… Then it would be well worth it.
yeah You ~ described the cystoscopy where as we could actually visualize everything you said. Especially after having seen Dr. Walsh’s DVD on the RPP surgery… It’s amazing what takes place during the RPP surgery. I want to see the little sphincter muscle but won’t ask Buddy to have a cystoscopy ~ just so I can see him… ;) I know he’s the most important little guy that has to be taken care of!!!!
I have several sections of the book I’ve typed out and will attach to this posting.
Remember it is a 2001 book and there’s bound to be “updated technology in this area”… but well worth the read.
This book gave us so much knowledge… and Knowledge is Power. Power to help us understand what to expect which in turn helped us to reach for a very positive outcome.
We posted the info in blue in the bathroom… above the toilet.
**Excerpts taken from a wonderful book called “Dr. Patrick Walsh’s Guide to Surviving Prostate Cancer” by: Patrick C. Walsh, M.D. and Janet Farrar Worthington.
Copyright 2001…..
**Urinary continence: The return of urinary control:
**Phase One is when you can remain dry when lying down.
**Phase Two is when you’re dry when you’re walking around.
**If you can walk to the bathroom and not urinate until you get there, that’s a GREAT SIGN!!!… it means that the sphincter is intact.
**Phase Three, you are dry when you stand up (using muscles that put pressure on the sphincter) after sitting.
**Remember, the recovery of urinary control is a slow process.
The most important thing you can do during this time
is not to get discouraged.
**Excerpts from Dr. Walsh’s book:
It’s hard to believe, but urinary control does continue to improve over two years and, in an occasional patient, even longer than that.
Can you do anything to speed things along, and improve your urinary control? First, whatever you do, do not wear an incontinence device with an attached bag, a condom catheter, or clamp! If you use any artificial device, you will hurt yourself in the long run. You won’t be able to recover your urinary control, because you won’t develop the muscle control you need.
Collagen:
The sphincter can be “bulked up” by the injection of collagen—a procedure similar to that used by plastic surgeons to take away wrinkles in a patient’s face. Before you consider collagen, you should have cystometry to rule out the possibility of involuntary bladder contractions. You should also be checked with the cystoscope (a lighted tube, inserted in the anesthetized penis and threaded through the urethra into the bladder) to make sure you don’t have a bladder neck contracture, and to evaluate the anatomy, to see whether it’s amenable to injection. Collagen injection is performed as an outpatient procedure. It may take three or four injections for you to receive maximal benefit. Some men feel an immediate improvement, which may ebb over the next few days, then return. It usually takes about
a month before the collagen settles.
Before you consider it, you should know that collagen is not for everybody: For one thing, some people are allergic to it, so you should have a skin test, to see whether you react to this substance. For another, it is not helpful for men who have hand treatment for a bladder neck contracture, or for men who have undergone radiation therapy. And it simply is not helpful for men who have severe incontinence—a few bits of collagen are like sealing wax. There effectiveness is limited. At best, only about
60 percent of men who receive collagen injections have what they consider to be a good result. Also, because collagen is eventually reabsorbed by the body, even if the treatment is successful, it probably won’t last forever; you may need repeat treatments every six to eighteen months. (Note: Collagen injections are not generally helpful in men after radiation therapy.)
Before you decide on collagen, you need to ask yourself some serious questions:
Do I really need it? Am I that uncomfortable? The reason we’re saying this is that some men have almost perfect control—almost. They wear a small liner in the pants, and they only have to change it once a day. But in an attempt to become perfect, they undergo collagen injections—and wind up wearing adult diapers that thy must change two or three times a day. There’s an old saying in medicine that “perfection may be the enemy of good.”
Artificial sphincter:
Men who have severe, prolonged incontinence should undergo placement of an artificial sphincter. In this procedure, a soft, sylastic (a material that’s flexible and stretchy, like elastic) cuff is positioned around the urethra and connected by tubing to a reservoir for fluid that’s installed in the abdomen. The placement of this reservoir is important. It’s designed so that when a man coughs or sneezes, or does anything else to increase the pressure within the abdomen—activities that would otherwise result in stress incontinence-that pressure is instantly transferred to the cuff. This temporarily increases the pressure around the urethra, and blocks urine from leaking out. The artificial sphincter features a valve, placed in the scrotum, which is used to deflate the cuff and allow urine to pass. The device is somewhat elaborate, but it works very well for men with severe incontinence. The idea is that ‘the buck stops here’—urine comes out only when you decide it’s time. In the past, artificial sphincters had two main complications—the risks of infection and of malfunction. Infection can cause erosion of the tissue that holds the device in place (in the urethra and bladder neck), may make incontinence worse, and may even mean that the device must be removed. If the infection is severe, this tissue damage may limit the success of any replacement sphincter. The device may need to be replaced if, for some reason, the original one is a dud. The good news here is that, as technology evolved, these devices keep getting better, ad the odds of malfunction are going down all the time. In the future, it may be possible for surgeons to make a “natural” artificial sphincter, by reconfiguring a muscle form the thigh, and using magnetic energy to make it
open and close.
Well ~ I just needed to share some thoughts and information that we’ve come across in hopes that something will work for you!!!!
Please know that we are all thankful you posted your journey and continue to keep us up-to-date…
Our thoughts and prayers are with you each and every~day. And hopefully as time moves forward…. Things will get better.
In Friendship ~ Lee & Buddy