The Ins and Outs of Catheterization
(Some headlines just write themselves.)
First - as you may have already deduced from my profile - I’m a male bladder cancer survivor who chose the neobladder diversion. And that diversion comes with, how shall we say it, maintenance issues? The neobladder is not a simple plug and play solution.
Different types of urinary diversions
There three basic types of diversion after a cystectomy (removal of the bladder) as a result of bladder cancer. One, the ileal conduit which involves an external bag to collect the urine. Two, the Indiana pouch where a pouch is made from intestines and the urine is stored in that pouch, inside your abdomen, and emptied with a catheter through a small hole, or stoma, usually in the belly button. And three, the neobladder. Like the Indiana pouch, there is an internal pouch, but instead of being routed to the outside via a stoma, they reconnect your urethra and you void almost normally through your existing “equipment.” For most of us with a neobladder is it very similar to pre-surgery with only a little bit of new muscle training to push out the urine. (And some new muscle training to keep the urine from rushing out… more on that some other day.)
A sticky side effect
For both the Indiana Pouch and the neobladder, there is a side effect that can be somewhat uncomfortable. Since the surgeon uses a portion of your ileum, a small part of your small intestines, to create your new internal bladder, that ileum tissue continues to try to do what it did before. And one of the things it used to do is secrete mucus.
And mucus can clog up the pipes.
And by pipes, I mean your urethra.
Enter the “catheter” (pun intended)
Now I know for a fact 100% of the men reading this just closed their legs so fast it hurt their knees. As I did when I first heard that catheterization was something us survivors may have to deal with. When you’re being diagnosed and checked for bladder cancer, you do suffer through the doctors pushing pipes up inside to see what’s what. But for many if not all of those “experiences” you’re lucky enough to get a little local anesthetic. You don’t with catheters. Not sure how women feel when they hear about catheters, but for most men it’s a very visceral reaction.
If you want the real truth, hearing I might have to catheterize regularly was worse than hearing the initial cancer diagnosis.
But… it’s not.
It is actually easy and at first, reassuring.
After the cystectomy
But for us in the neobladder tribe, after your cystectomy you’ll have to drag around a urine bag hooked up via a catheter. Protip: The after-surgery catheter is about five times bigger than the one you might need to use somewhat regularly later on - so don’t think that is what I’m referring to when I say catheter. That’s not what you’re going to use on an ongoing basis. Trust me.
Training your neobladder
After 4 or 5 weeks (remember - everyone is different) the doctor will remove the after-surgery catheter. Then the fun starts. To keep everything working and to “train” your neobladder you will have to go through a routine where every four hours or so you will drain your neobladder with a catheter and then “rinse” it out with saline solution by taking a syringe (relax - just the plunger and shell - no needle) and like a turkey baster, shoot a few hundred MLs of solution up the catheter into the neobladder - and then let it drain out.
Every. 4. Hours. I know. Cringe worthy. But it does get better.
Catheterizing less frequently over time
Then you go to maybe catheterizing twice a day. Then once a day. Then once a week. And if you’re like me, you may never have to again. I’m 5 years out from my cystectomy and I haven’t had to cath in 4 years. Some still have to every time in order to empty their neobladder. Some - have to every once in awhile - just to keep things happy.
Remember with all of this - it is my experience. Your doctor may have a completely different schedule and process.
Catheterizing sounds worse than it is
After your first do-it-yourself catheter and the rinsing out process, it is a piece of cake.
It really is nothing at all.
There is rarely any feeling as the catheter goes in, and even less as it comes out. I found the actual flushing out of the neobladder somewhat refreshing and reassuring that things were working. (I know - catheter and refreshing aren’t words you normally think to see in a sentence - but there it is. Cancer will bring a lot of things together you didn’t think about before.)
So.. when (and if) you have to worry about catheterization. Don’t.
It is easy and uneventful.
It just sounds really bad.
Have your views towards bladder removal changed since you were diagnosed?