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!
-K
Nice site! 7 weeks ago I underwent a patch urethroplasy with a buccal mucosa graft ( cheek tissue) at Brigham and Women’s in Boston. Getting my Foley out in 3 hours after an antegrade UG a few minutes ago!!! I was able to avoid a supra thank goodness….nice seeing someone else go thru the learning curve – I came up with much the same conclusions and improvisational u did After similar incidents….
I had two failed urethotomies years ago and finally decided to go whole hog and get the 4 cm stricture repaired once and for all. I did a whole bunch of research (YouTube viewing of procedures too) and on my doctors advice went with the graft not the end to end – risk of foreshortening. Great decision.. Even with the graft from the inner cheek, was able to ravenously consume bacon and ends 12 hours after. AND no risk of foreshortening. Not as gruesome as u might think – highly recommended. Good luck!
Mat,
Thanks sooo much for sharing your experience! I find out tomorrow how long and/or severe my stricture is. They’re doing an antegrade-retrograde urethrogram (contrast dye down through the supra hole and up through the normal way. That should show them how long the sucker is. The doctor says a majority of these can be fixed with the end-to-end minus the graft. He’s not even going to try a urethrotomy on me. He says I’m too young;). I love hearing that at 48.
So wince you had a graft, does that mean you did NOT get the end-to-end anastomosis? I read that 4 cm is a bit too long a stretch for it. And the end-to-end doesn’t usually require a graft, I didn’t think.
But hearing your experience about a quick recovery from the cheek graft cutting may be the best thing you could have said! Being a singer and voice-over actor, THAT scared me more than the urethroplasty.
Thanks again for your comment!!
Ken
I am a beginner, have had a catheter for three weeks. Am out in the sticks with only a bag (no valves available), I will hit civilization on 11th November i.e. about six weeks with a catheter and bag. If I get a valve I presume I will need the loo every forty five minutes? How long will it take me so that I can wait, say, two hours. For me two hours of comfort and the convenience of no bag would be pretty good. Your warnings about flicking the valve open by mistake are salutary, I have taken on board. Greatly appreciate your input.
Kind regards,
After being diagnosed with urinary retention due to an enlarged prostate I now have an indwelling catheter. I’ve had the catheter for more than a month and have to say I’m happy with it after hearing all the horror stories. Two days ago I saw my urologist again and a cystoscopy was performed which revealed a very enlarged prostate. The urologist said that it was so large that I would probably need a HoLed laser surgery so he scheduled another consultation at the end of the month. They tried to see if I could urinate to see if I could go home without the catheter. I was happy to see that I couldn’t since it was a nice month not having urge incontinence or any other horrible symptoms of urinary retention so in went a new catheter and out the door I went stocked with some more collection bags and catheter restraints. I have been able to do most of my usual activities though the leg bags need to be emptied frequently and I drink a lot of fluids so I don’t get a UTI. Since its summer I have been using only the medium sized leg bags since they can hide under my shorts. I guess I’ll have to put on long pants to hide the large 24 oz bags if I Iwant to go see a movie. All in all I’ve had a happy experience with my indwelling catheter which is great since it looks like I will have one for the next two months and the surgery can be done.
Hi Edward. Good luck on your prostate situation. Thanks for the comment. Yes, I remember the first day home after they put my SP tube in. I came out of the bedroom cheerful with my bag full o’ pee, and my wife said the retention must’ve been pretty bad for me to be so happy to have a catheter:). It’s true. After I got used to it, it just sort of became my new normal and yeah, I could do most things. And movies in the theater were wonderful, yes:).
Thanks again and good luck!
Ken
hi ken,
” He said all I really needed was the little stop-cock type valve………”
where can i obtain these small valves from….?
thx
d
Hi David. My clinic just pulled them out of the Hollister leg bags. It’s easy and cheap to do this and probably easier than trying to find them as separate products. Here is the link to get them.
Hope that helps.
Ken
Hey everyone. Could you help me out? I put together a VERY short survey tor subscribers on this site to help me understand how I can help folks with their catheter problems better. It would really be a help to me if you could take just a couple of minutes (seriously 🙂 ) to do this survey. If you can do this, just click here to go to the survey. Thanks so much!!
Ken