Posted 8/3/2007 7:03 PM (GMT -6)
Thanks for the positive feedback. To answer your questions:
Yes, I have considered the fact that commencing running 6 weeks after surgery, and even my continued running 7 months after surgery, may have impeded my progress. I have discussed this with two urologists and both of them have said that running would have helped, not harmed, the recovery process through oxygenation of the muscles, strengthening the muscles and so on. I was careful not to do anything prior to the 6 weeks as I did not want to damage anything while the healing was underway. So while I don't totally eliminate my running as a possible factor in my incontinence, on the balance of probabilities, given the statements by my urologists and stories I've read of others who have resumed running at the 6 week point and have continued their recovery of continence, I have decided to stay with the running. Among other things, it makes me feel that I have recovered my health and that my incontinence is an inconvenience rather than an illness. Having that mindset is important to my quality of life.
Regarding kegals before surgery: I was diagnosed with cancer only 4 weeks before surgery. It took me a week to read Scardino's book, scour the web for information, work my way through the shock factor, and come to the conclusion that surgery was the best option for me. I immediately consulted a continence physiptherapist who started me on kegals. Within 5 days, my lower back had seized up. I am certain that the exercise regime was the cause of this, in that the sudden use of muscles which until now had been dormant strained my lower back. I was treated by an osteopath, but I had little opportunity to do more kegals prior to surgery.
Initially I felt the physio had given me an exercise program which was grossly excessive as a starting point. However, she is experienced in working with prostate patients. I've since concluded that what she gave me was probably OK for most people, and the difference may well have been with me; that despite my overall level of fitness, my pelvic floor muscles were very weak to start with (don't know why). I do know this much however; when I started doing the exercises I was flat out holding the squeeze for 5 seconds before it simply let go of it's own, which is pretty weak. Taking this logic a bit further, if it is correct to assume that I had weaker than normal pelvic floor muscles, does it add credence to my urologist's proposition that my external sphincter (which is part of the pelvic floor muscles) may also have been weaker than normal? So is he on to something by suggesting that perhaps in my case, most of the work of urinary retention had been done by the internal rather than the external sphincter?
I've read the books of both Dr Scardino and Dr Walsh, and recently purchased the newly released 2007 version of Dr Walsh's book to see what changes he may have made (not many changes from what I can see). I was particularly interested to see if he had modified his approach to exercising, but he hasn't. In this area, he differs from other advice in that he recommends clenching the butt cheeks while you are urinating to stop the urination (imagine holding a quarter between them). Other experts warn against this, except occasionally to check that you have identified the right muscles. When I noticed he was still advocating his approach, I switched to his method for a couple of weeks, but stopped after noticing that my flow was becoming weaker and somewhat intermittent. I got concerned that perhaps I was developing a neuro-association which was causing a mental block to the process.
This of course is conjecture on my part; however the urologist who performed the urodynamic study this week was dead against this approach. He felt you could teach your body bad habits by constantly interrupting the flow. Interestingly, he noticed that the internal diameter of my urethra was narrower than normal at the point of the anastimosis. He had some difficulty getting the catheter to go all the way into the bladder, and said there was probably some scar tissue there. This could cause reduced flow, but not enough to be a significant problem, and he ruled it out as a cause of my incontinence. He said surgery right now was not required, and indeed there was a chance I could end up worse than I am now if I had it. If I had an artificial sphincter inserted, it could be done then he said.
I am not morbid about all this. In reality, I am very fortunate. I could be having these problems with incontinence, AND still have life threatening cancer. What I now have is no cancer (at least the PSA says so), and some inconvenience that I find embarrassing at times but which doesn't really stop me doing too much if I am honest about it. The fact is that in 3 weeks I will be joining a group of other runners on a 30 hour non-stop ultra-marathon over the mountains in Papua New Guinea carrying all my food and safety gear in a back pack and getting my water from creeks and rivers en route - not exactly the image of a person with a major physical disability. One challenge is that I have to carry 30 pads with me, and remove the outer non-biodegradable skin and bury the cotton contents along the way. This will slow me down, but it won't stop me from participating. It will give me some added satisfaction to know that I am doing this event with added difficulty, and without anyone knowing I am incontinent.
Anyway, the search for solutions continues. I like to know the facts, even if they are not what I want to hear, and that's what I got from the urodynamic study this week. Only when you have the facts can you move forward. This website has been a significant source of vital information, and I'm appreciative of the time and effort that people put in to maintain it and contribute to it. I check it every day for updates from people like KW who is in a similar boat to me.
Thanks everyone for your feedback and support.
(Now I really have gone over the top with a long post).