I have had my catheter in for 3 months and all that time, have had a bag of one type or another attached to it.
At night when I sleep, or when I’m sure nobody is coming over and I’m not leaving the house, I wear the bedside drainage bag (the Curity Covidien-Kendall). That’s the large one with the long thick tube.
When I needed to feel more “put together,” usually when going out or having people over, I switched to a leg bag (the Hollister Leg Bag) – the kind with a short tube that you can hide under your pants.
Then yesterday, while at a pre-op appointment at the hospital, the doctor (a specialist in stricture repair and one whom I have not seen since this ordeal began) asked me if I really liked having the bag. He said all I really needed was the little stop-cock type valve, the one that lives at the bottom of the leg bag, to be inserted into the end of the catheter, and presto! He even took my bag and placed the valve right there in the office.
I was stunned. Most of it was a happy thrill of not having to wear the bag anymore. But part of my dismay was wonder at why nobody had told me I could do this before now.
I was sent home from the hospital with both types of bag and instructions on how to wear each of them and how to change them. The web is replete with instructions on how to clean your bags, how often to change to a new one, etc. But at no point was there information from either my urology doctors, or from a reliable source on the web, that said anything like “if you are ambulatory, able to feel when your bladder is full, and able to go to the bathroom to urinate when needed, you don’t need a bag. A valve stuck into the end of the catheter is sufficient.”
Well OK. Now that statement is on the web since I just put it there:). And while I am not a health professional, I would like to consider the information on this site to be reliable. I will not post anything that is not supported by existing science, my doctors, or my own experience.
So now that I am bag-free, what am I going to do? You thought I was going to say something like “go to Disneyland” right? Actually, I am LESS likely to go to D-land, or anywhere that requires me to be somewhere for hours and hours at a time, without my leg bag attached. Why would I do that?
Well, the main reason is that I can’t seem to go more than 30-45 minutes without needing a toilet. Over the last year, my bladder has been abused. Not in the fun way, sadly (not that I would THINK of advocating drinking lots of alcohol – plus that’s more likely to do in your liver). I had half a year of restricted urine flow, during which time my bladder never fully emptied. The bladder does not like this. Then once I got the the catheter inserted, the bladder never filled up. Ironically, the bladder does not like this either. Nor does it like having the pokey of a Foley catheter sitting in there, occasionally sucking the sides of the bladder wall into its little drainage holes (this is called aspiration). All that abuse, intermingled with a few months of rest (since it didn’t have to do its main job of filling and emptying) caused the bladder to become lazy. Some people may say it feels like it has shrunken in size, which is not really true. But it feels that way because it doesn’t seem to have the ability to stretch out to full capacity before alerting your brain that “you need to go.”
But with the leg bag, I can go for 3-4 hours without needing to go to the bathroom. This came in handy when seeing Iron Man 3 last weekend:).
Likewise, I will continue to use my bedside bag while sleeping – at least until my bladder gets back into “fighting shape,” and can last through the night without waking me every hour to get up and pee.
So in a way, I have the best of both worlds (if you consider having a tube sticking out of your gut to represent a “best world”). I can walk around like a normal person, without having to constantly check my tube position beneath my pants, making sure I don’t squat down without shifting the tube, etc., all in an effort to avoid something coming unplugged and spilling pee everywhere. I actually found myself reaching for my pants to feel for my tube position several times after my new and fabulous doctor changed my life:). I had gotten in such a habit of checking every few minutes of the day, that I kept being surprised there was no tube under my pant leg. But yeah, I like flexibility. So while being able to go “sans-bag” is an incredible feeling of freedom, the ability to go back to a bag when I want to is great.
I’m not actually in the least upset that I didn’t know this sooner. I learned a LOT about coping with the bags – changing them, avoiding spillage accidents, making the best of having to have one by developing little tricks to make things safer and more convenient. That allows me to pass those tips on to you.
But I am very happy that I can go out in public without long baggy pants, which was starting to become strange in the hot, south Texas pre-summer. I can actually wear shorts! Like I said, I have more freedom now.
By the way, the pre-op appointments I mentioned were not for surgery to fix to my stricture of the urethra. They were for a procedure next Friday to diagnose the length and position of the stricture. Only when they have that information can they know with any certainty what type of surgery I’ll need to fix this problem.
The diagnostic procedure is an antegrade-retrograde urethrogram, which means they put scopes and contrast dye both up the urethra via the normal route, and down through the bladder (they can go in by my suprapubic catheter opening) to pinpoint the stricture.
My doctor assures me that by far the most likely surgery I’ll be getting ultimately is the type or urethroplasty called “end-to-end anastomosis” also called “excision and primary anastomosis,” which is the least gruesome (in my opinion) and difficult of the several types of urethroplasty. I’m told that because I am so young (I LOVE hearing that in my 40s:)) I am not a candidate for urethrotomy, which is when they just put a scope with a knife up the uerethra and cut the stricture out. That one only has about a 50% long-term success rate. Urethroplasty has a 90%+ rate of long-term success.
So all in all, I walked away from my pre-op appointments yesterday with more knowledge about my surgery and with awesome knowledge about my leg bag! I was given both by my new doctor/surgeon, who also filled me with a sense of relief and comfort knowing I was in good hands for the rest of this ordeal.
It was a good day.
[Addendum to this post] BE CAREFUL. In an ironic twist (well, a “pull” actually:)), when I finished writing this article, I pushed away from the table, the bottom edge of which caught hold of the valve toggle through my pants, and pulled the valve out of the catheter, causing…well, you get the idea. I had to change my pants. The valve toggle is just a flat piece of plastic that lays flush against the end of the catheter or tube. You flip it 90 degrees “out” to open it. As you sit, it is horizontal with the tab facing you. Also, the valve does not fit very snug into the end of the catheter. So if you push away from, say, a table, or if you are pulling down your pants, it’s pretty easy to catch the tip of the toggle piece, and it does not take much force to dislodge the valve plug. You have been warned!