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This is kind of a weird question, but…our surgeon told us that in rare cases, even after the neobladder is created and healed and seems fine, there are 5% of them that require urethral catheterization every time they need to void (because something goes wrong). That stat has us freaked out a little…not enough to change the procedure, but I was just curious if anyone on this site has had that outcome?
From a quality of life POV, I wonder if those diversions ever then get changed back to an ileal so the patient doesn’t have to do that for the rest of their life. I know my husband would find facing a lifetime of catheterizing [strong]in that area[/strong] to be the absolute manifestation of all evil. When he found out that he would be wearing a Foley for a long while, his facial expression suggested that he would rather be solely responsible for cleaning all the bus stop shelters in town with his tongue than wear that Foley.
I know it’s strange to be focusing on this, but my worst case scenario brain is bored with agonizing over the same anxieties repeatedly and has decided to change things up with this new worry, just for variety’s sake.
Hasn’t happened to me personally, but there are some on this site for whom that is a reality. It becomes like brushing your teeth, I’m told. Doesn’t say much about how they brush their teeth though. Sounds more like flossing to me – in a very weird sort of way!
Remember however that there will not be a prostate in place following Tim’s surgery and that is often where we men find the catheter experience somewhat uncomfortable. Haven’t had the pleasure of a cath since my neo, but I can relate to Tim’s displeasure at having a Foley. I had mine for 7 weeks. It was heavenly to be rid of it.
No doubt my good twin friend from the west coast will chip in on this subject. Perhaps he can give some insight.
Greg? Are you OK? You are definitely weird. I am pleased to have a friend like you. Well, since I have not (at least yet) had my bladder evaporated from my body I don;t have a handle (well it actually does have a handle) on an RC. But from my research I have learned that there is a small percentage of people who have had an RC who have continued problems that require catheterization. I think I could handle that since I would be absent a prostate. But I know some people who have had an ileal installed (I like that word) and I think it is a viable and appropriate alternative. Heck, it beats dying of BC!
I guess all we can do is make the best decision we can at the time we need to make it and then just do it.
Ki
It is absolutely weird what the mind thinks when under duress. I can empathize with Tim’s concern about catheters. Even though my situation was/is totally different I abhor those things as a result of trauma from being catheterized as a young child. I had a lot to overcome when being cathed every week to receive BCG treatments. It was a nurse in the BCG clinic that realized I was dealing with a form of PTSD. Yoga and a lot of learning to relax with breathing helped me overcome the fear. I can get through a cysto exam now without any “flashbacks” but I still wrestle with some fear. We will pray for a good outcome for Tim that this won’t be necessary for him.
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