[Update: Before trying this, ASK YOUR DOCTOR about it! It turned out that though one of my urologists said it was fine, my actual surgeon for my upcoming urethroplasty was upset about it. He said this is allowing my bladder to start putting pressure down the urethra again, which is NOT what he wanted. My urethral stricture was supposed to be free from any pressure prior to the surgery. Oops. So make sure you get cleared to do this before trying it!]
Here is what I originally wrote:
I wear a catheter valve instead of a leg bag now. I recently posted about being allowed to finally stop wearing a leg bag (attached to my suprapubic catheter) during the day. For more, see that post here – I Haven’t Really Need This Leg Bag! It was necessary for my bladder to “rest” for 3 months, the doctors tell me, to be able to accurately accomplish the combined antegrade and retrograde urethrogram (which my doctor calls an “up-down-ogram”) to pinpoint the size and location of my urethral stricture. They stick a scope through your suprapubic opening, through the bladder, and down into your urethra while simultaneously sticking a scope up your “willie.” Yeah, I had to be under anesthetic for that. I let them talk me into a spinal, which I will not be doing ever again, thank you very much. But I digress.
Anyway, now that the scoping is done, I wear no leg bag during the day. Instead I simply stick a plastic flip-handled valve (pulled off the bottom of a Hollister Leg Bag – see picture on left) into the end of the Foley catheter, which is secured to my thigh with a GRIP-LOK Large Foley Securement Device (see picture on the right). This is incredibly liberating in that you don’t have the cumbersome bag strapped to your leg that you have to cover up if you go out.
Advantages and disadvantages
I specified that I don’t wear a bag “during the day.” That’s because my bladder has completely forgotten how to do its job of filling and emptying over its 3-month vacation. So I have to go to bathroom to pee (by opening the valve) like every hour. For most normal people, it’s every 4 hours or so. So one downside is having to retrain my bladder, which requires me to “hold it” when I get that urge. I do the “wee-wee dance” for as long as I can tolerate it, then I go. I’m very thankful that I still can attach a bag right now, though. At night I attach the bedside bag, which prevents me having to get up every hour. And if I go to a movie, I can stick the leg bag on so I don’t have to leave the theater multiple times per film.
I really hope that by the time they fix my stricture and remove all my catheters (this should be mid-August of 2013), my bladder has gotten back to normal. Otherwise I’ll be getting up a lot at night and in movie theaters.
How often does the valve need to be changed?
So those are some of the ups and downs of this alternative way of dealing with a suprapubic catheter. Of course this is also an option with a catheter inserted the traditional way. But I started wondering about how often the valve should be changed to reduce the chances of a UTI. Apparently it is not possible to sterilize plastic after it has been used in a catheter for a certain amount of time, where it is exposed to the colonized bacteria present in all indwelling catheters. At least I have not found any evidence or been told of a way. It seems to me that sticking it in a microwave oven for 60 seconds should do the trick, but I have NOT asked my doctor about that yet. What I DID find was site after site advising that you change a catheter valve every 5-to-7 days. Doh! I’ve been using this one for like 3 weeks (and that was AFTER having it on my leg bag for several days). So today, I went into my stash to my last new (in the package) leg bag and pulled the valve out of it so I could replace the original one.
As with so many things involving living with a catheter, I’m finding good, evidence-based information hard to find. So I promise that as soon as I find some more decent info on valves, how often they should be replaced, and whether or not they can be sterilized and re-used, I’ll post it here! In the mean time, I advise that you play it safe and change your valve every week.
I found a couple of sources on line. You can try the tru-flo valve (www.truflovalve.com), which costs $16. Or you can order an entire leg bag and just remove the valve and use that. I use the valve on the Hollister Leg Bag. There is also the Bard Flip-Flo valve, also which you can only get along with the bag – their Dispoz-a-Bag. Both the Hollister and Bard bags cost only about $10. So I don’t know why you’d order a $16 valve when you can buy bag-and-valve for $10. But maybe the tru-flo provides something special. I ordered one, so I’ll let you know when it arrives.
Update: It might be a personal thing, but I did not like the tru-flo. It requires you to pull the cap AWAY from you to open it, which it the direction that pulls it out of the tube. Yes, you are supposed to be able to hold onto the base (the part plugged into the tube) to keep it in while you pull the thing open, but it was not easy to open and I ended up pulling it out more often than not. I cannot recommend this one. My best result was still with the cap pulled out of a Hollister bag.
So if you’re looking for an alternative to wearing a bag all the time, as well as allowing your bladder to keep working and practicing, you might consider asking your doctor about using a valve instead.
Good luck!
i had a foley with valve instead of a bag for one day and i hated it. this was given to me by a urologist to retrain my bladder…i instead was “peeing” and then still having urge to go thereafter. keep in mind i wasnt drink many fluids under his orders…so yes bag is what i d go with, even though it is more visible.
Wow, that’s interesting Jen. Do you mind if I ask if you are ambulatory? That could be a factor. In my case, it was a really liberating feeling for not to have to walk around with a bag attached. When I used the valve to “pee,” it did empty my bladder and relieve the urge to go. The only issue is that I had had the bag for so long (3 months+) that my bladder gave me the urge – and still does – every hour or so. I’m still wearing the bag at night, which won’t be an option after my surgery/recovery period. So I hope to have the old bladder trained up to last through the night by then. Fingers crossed.
Hopefully, you are still with us, Ken, at 68, I now have to wear a catheter for life, due to Dr. misdiagnosing m condition. He thought I had a Gastric Hernia….no, it was a large prostate, and so much time was wasted 9 months ,to be exact, my bladder is 5 times the normal size….2.5 litres, instead of half a litre. Had the TURP operation, to no avail, as the bladder is “flopping” about, blocking the urine outlet…hence, the catheter balloons keep the exit free to pee. However, my Consultant has suggested, and given me 2, Flip Flo’s to try out, and , boy, am I interested ! When I can, (and have the guts!) I will try one out, as he says it is good for re-training the bladder, and the fact that I have 5 times the normal size bladder, I will be able to live a more normal life….with your permission, I will keep you updated ?
I’m still here. Wow, so sorry you had that misdiagnosis! And that you have to deal with a cath for the rest of your life. Yes, please, would love updates. Also, if your doctor an/or urologist thinks it’s OK, I highly recommend the valve! It made a massive difference in lifestyle. And if I needed to connect a bag – like for sleeping or going to a 3-hour movie – I could. Best of luck with this!
Michael that is very similar to my condition. I have prostate cancer ( 9yrs now) and had to get a TURP op because the prostate got larger and was restricting my pee. Like you it did not work and been condemned to wearing a catheter and leg bags. I’ve just started reading posts because I want to get back to swimming and you can’t wear a bag. I’m going to ask my urologist about using this. I wasn’t sure if my bladder could be retrained after 3 months but reading your post I’m more optimistic. Thanks.
Hope everything is going well, I installed a catheter valve, bard, on the outlet of my foley catheter a week ago, the catheter has been in place for a month due to enlarged prostrate, works well and I void into the bag then empty the bag into the toilet as Im worried about getting air into the bladder, im currently researching ways and fittings to empty straight into the toilet, if I find more info I shall post it, Regards, Chris
Thanks Chris! I found that simply opening the valve and emptying into the toilet worked great. The flow is always one-way – out. So if you close the valve as soon as you’re done you can limit additional air/bacteria getting in. Though once you have an indwelling catheter, everyone has those bacteria (bacteriuria) in the bladder already. At that point it’s just a matter of keeping healthy and hydrated so the bugs don’t invade your tissues anc ause an infection. Thanks for the comment!
frank j ihave a suprapubic catheter.Ihad Turp 3 months ago ,still no natural void .I was told the flipflow value would ststrech out my bladder and i should wear a leg bag to have constant darinage. I love the flip flo bag it makes life much better. My problem is after I pee ,short time after i feel like I have to pee again. I have been using the flip flow around 5 hours ,then i switch to leg bag. Do you know if there is less of a chance of getting a UTI using a Flip flo instad of the leg bag?
Hi Frank. The doc is right that using just the valve (no bag) it will stretch out the bladder since urine builds up in there. That’s the natural way it is supposed to work. But if the doc doesn’t WANT you to have your bladder stretched out, then it is best to wear the bag instead. I don’t think there is any difference in UTI rates with one over the other though. Hope that helps.
Hi ken, Do you think there is less of a chance of getting a UTI using a flip flo value insteadof the leg bag?
I’m confused . they told me i could get a streched out bladder if i use the value flip flo instead of the leg bag ?
After my Turp surgery ,3 months i still cannot get a natural void.I had urine retention for 3 years ,and did CIC.What have i got to loose since i can’t get a natural void anyway. The only thing that bothers me is
i always feel like i have to emphty my bladder after i open the value and release my urine.
thanks for for comment
Hi Frank. I don’t know that there is any data showing you’re less likely to get a UTI using just a valve cap. I think the main advantage is that you are free of the bag. Yes, your bladder would do its normal job of filling up, which of course means stretching out, if you used the valve. With a bag, the bladder never fills up as it is constantly pushing out into the bag. Sounds like you’ll have to choose between the lesser of evils. With the bag, you have to deal with, well, the bag. But you SHOULD not have to feel like you have the urge to pee. With the valve, you’re free of the bag, which is really nice. But, as you say, you do have to pee much more often. I did have that as well. Hope that helps.
hi ken,what do you think is a better way to go? A Flip Flo ,or a hollister leg bag? I find when i use the flip flo value , i have the feeling that i’m not letting out all the urine out,and that i have to do this a short time after again. Is this a normal reaction to the Flip Flo Value? This is a so nice next to the leg bag.Why do i get this feeling that I’m not letting all my urine out?
Hi Frank. I had that urge to go shortly after going also, when I wore just the valve cap. I couldn’t go more than an hour. I don’t know why that happened because I got the catheter out just a few weeks later and after that I was back to the regular 4 hours or so in between instead of the 45 minute with the valve. So the “better” way to go is totally up to you. If you are going to be somewhere where you will be wearing shorts, say. And if you have access to a restroom. Then it is far more comfortable, in my opinion, to wear the valve. But make sure your doc approves it. When my surgeon found out he was upset that another doc said I could do this because he needed me to NOT stretch out the bladder by filling it up. that was because of the surgery. Anyway, the upside to wearing a bag (though you have to wear longer pants – I wore drawstring ones) is that you can go a few hours without having to go to the restroom to empty it. Hope that helps.
Hi Ken, Is there a support I can wear with a suprapubic catheter that you know of. I have aggressive prostate cancer and i’m taken Lupron hormone shots,and having my testicles just hang loose is cauing a discomfort.
frank,
Hi Frank. I had the SPC and just word regular briefs. You’ll want to make sure they are low enough cut – not the high rise kind. But that worked for me. I also wore a jock strap for awhile, but I think that was only after I had the SPC removed.
Can a flip flow valve cause urine to back up into the bladder if you wait to long to open the valve?Thanns for this info,i know your not a doctor ,perhaps you might know the answer?
Thanks
I love this web site.
frank
Thanks Frank! Remember that the bladder fills with urine pretty much constantly. Also, it pushes out constantly as well. If you’ve ever had the cap off the valve while replacing it, even you hold the end of the catch tube up, urine will still pump out and make a mess. When there is a catheter bag, it fills constantly as the bladder pushes the urine into it. Now normally, we have bladder control to counteract the natural pushing/pumping of the bladder. Then after 4 hour or so, we can’t hold it back anymore and have to pee, emptying the bladder. When you have the valve, the same thing is happening – urine builds up in the bladder, and yes, in the catheter tube as well. But it stops at the valve. While it is possible that the urine in the tube can back up into the bladder, it would probably only happen if you were laying down and the valve was above the bladder. But even then, the pressure from the bladder would probably keep it out. Also, once you have an indwelling catheter, all your urine has bactieria (actually, bacteriuria) colonized in there. So it isn’t “clean” anyway. Your immune system keeps you from getting UTIs from this. so even if some of the urine from the bladder backs up from the tube into the bladder again, it’s just the same pee that was in there earlier. So it isn’t infecting you or anything. I hope that answers your question.
I have a temporary indwelling catheter.
A fibroid pressing on my urethra. I would love to not wear the bag. I can’t call my doctor because it is the weekend? but why did they not mention the valve? I am tempted to just try it. Can you give step by step instructions with pictures? Or at least a little more detail? The bag makes me not want to do much.
OK Rachel. But I do have to keep emphasizing that I am not a medical professional – for legal reasons. It’s amazingly simple. The end of your catheter is just a rubber tube, right? Usually you have to stuff the tapered end of a bag tube inside of it to connect the bag. Well it’s the same thing except that you stuff the tapered end of the valve into the end of your catheter, and then flip the valve handle flush like in the picture at the top left of the post.
It isn’t easy to see in the pic, but the valve has two ends/openings. The one you can see easily in the picture is the white plastic end, which is a standard plastic tube. That’s where the pee comes out. The other end, which is covered in the pic by the blue closed valve handle, is tapered. That’s the end you shove into the end of your catheter. Make sure the valve handle is flipped out (open) so it doesn’t get in the way when you insert the tapered end. Then once it’s in, immediately flip the valve closed.
When changing from the bag to the valve, stand over a sink and remove the bag, allowing any residual pee, if any, to come out of the catheter. Rub the tip of the catheter and valve with an alcohol swab and stick the valve in and close it. That’s all there is to it.
Then you’ll feel that urge to pee as your bladder fills up. When that happens, just go into the bathroom and open the valve so that the pee flows into the toilet. When it stops, flip the valve closed and wipe the tip off with toilet paper. Some folks will say to wipe it with an alcohol swab every time. Phooey to that. The bacteria are already inside you (as with anyone who has an indwelling catheter). Unless you get run down or sick, they won’t bother you. They just “colonize” in there until everything is fixed. You don’t get a UTI unless they decide to invade your tissues.
I hope that helps. If you need more of an actual visual, let me know.
Good luck!
Ken
Great info Ken – my question; do I removed his leg bag (Holiister) and allow to drain as I give him a shower on a shower stool in the shower?
Thank you for taking time!
Sincerely
Wife of Himself
Thanks Barbara.
this is one of those areas where I hedged my bets. It was likely superstitious learning on my part, but my one and only UTI happened just after I took a shower with the open tube just dangling. And I hated plugging it up because it really felt weird when I unplugged it afterward. So what I did was shower with the bag still attached. It does no harm and just made me feel more secure, keeping the system closed that much longer. However, I did not shower with the leg bags (though that shouldn’t be a problem). Instead, I used the bedside bag, which is much heavier duty and can harmlessly lay on the floor of the shower. The only issue, which is really not much of an issue, I would see in using the Hollister leg bad in the shower would be getting the stretchy straps wet. All the parts of the bedside bag are plastic, so it’s not an issue. But if you don’t mind that, and you can wash the skin under the bag OK, then I recommend leaving the bag on.
Now, having said all of that, I really should point out that there is no actual science – no clinical data – that supports the idea that showering with the bag off leads to UTIs any more than keeping it on. That’s why I said “hedging my bets” with this one. You are absolutely not supposed to take a bath with an exposed tube – risking the backwash of that water and urine into the bladder. But showering should be OK from a data-driven, scientific viewpoint. I hope that helps.
HI-Can you tell me if the surgery to have a subrapubic very painful? Did it require general anesthesia? My dad is 87 and currently has a Foley and they are telling him to get this type. Thank you.
In my case it was completely painless. The most painful part was when they put antiseptic on the skin after shaving down there. They didn’t use general anesthesia, but they did use fentanyl, which was great. When I whinced at the stinging betadyne, they pushed a bit of fentanyl and the pain was gone. Then they did the procedure and I felt NOTHING. It was terrific. Hope that helps.
I think I get how to do it.. But what would be the issue with this? Why on earth would they not mention just using the valve. My bladder works. The urethra is just blocked. I will feel when my bladder is full. I guess if it isn’t you living with a leg bag you don’t think it’s a big deal.
Rachel,
Actually it turned out – according to my surgeon – my bladder needed to “rest” for 3 months. Apparently this is either standard for strictures, or standard for this particular doctor. But either way, they told me that if my bladder had not rested for 3 months, they would not have been able to do the “upd/down-o-gram” (scoping down through the bladder into the urethra via the SP tube opening AND scoping up through the “regular route”). Or at least could not have done it as easily or accurately.
But as far as I know, unless your bladder needs to rest (or some other condition), there is no reason for the bag! As usual though (since I am not a medical professional), ask your doctor before doing this.
But given the choice, I don’t know why anyone would want the bag. It does come in handy for 3-hour movies and sleeping though;).
Ken
I had a Suprapubic cather placed in August of 2018. I also was told by my surgeon to wait 2 to 3 months before I tried the valve. I went the full 3 months and then went with the Bard “Flip-Flow” valve and it was an absolute “life changer” from day one !!! No more UTI’s and no bag bulging on my leg and dictating what kind of pants I could wear. I do set my alarm clock to go off 4:30 every morning and I usually get from 450 to 600 cc’s of urine ( measured ) but then I go right back to sleep and lead a “normal life” for the rest of the time !!! The Flip-Flow valve costs me $2.76 from “Save Rite” medical supply ( box of 20 is approx $55 )so for $2.80 a week, I have a normal life and no UTI’s !!! I had no trouble adjusting. It was like “normal” prior to the operation. When I felt the “urge”, I would just go to the bathroom and open the valve. I did measure all output for the first month to be sure all was working well but now, I don’t even think about it !!! The Flip-Flow valve was/is truly a life changer for those of us who are destined to have a catheter for the rest of our lives !!! Appreciate all of your comments, you were one of the reasons I decided to try the valve route and I am forever grateful !!!
Thanks !!!!
That’s awesome! And thanks for the tip (no pun intended) on the caps/valves from Save Rite in boxes of 20! I was not aware of that. Fabulous. So glad this has been so helpful for you!
I am glad I found this site. I had a SP catheter put in this past Jan 2020, With a long period of time with a enlarged Prostate, TURP surgery, scar tissue (bladder neck) surgery twice, caused my bladder to really stretch out. It will more than likely never recover. With that being said, I had a doctor in Southern Maine put in the SP catheter. everything went well. I am 73 and I have no problem that I have to have this for the rest of my life. I did request to use the Poiesis Duette catheter after the first change. I got the catheter from the company and brought it with me for the change out. My biggest complaint with these doctors is that they are so set in their darn ways that they don’t want to make any changes in their medical brain. They were not happy to put the Duette in but they did and did give me a prescription for the Duette for as long as I am kicking. I ask them about the flip valve and could I use it. They said that I could not use it until the 3rd chang over. No reason. After reading this web site, I assume that allowing the bladder to heal up is the reason. Why, Why, Why do these doctors find it so hard to inform patients on what you need to do, or why it has to be this way, and then they get ticked off when you say, Well, I looked it up on the web site and Bla, Bla, Bla.
That is one side of my story. The other side is that I have a urology doctor where I live in Northern maine. Now it’s been 7 weeks since I have the SP put in. I had an appointment with this doctor. We had a short conversation about the Duette catheter. He is also not a fan. He says that the tip of the Foley catheter does no harm to the bladder lining. I explained that I disagreed, and that just ticked him off. I told him that the way I see it I have watched videos on the damage of the bladder that is caused by the foley and the healing results after switching over to the duette catheter. I told him that, see that office chair that you are sitting in, a 125 years ago someone designed that chair with 4 legs on it. After several decades of people flipping over while sitting on it, someone decided that they can make that unsafe chair better. So they added an extra leg. Now they never flip over and people are much better off for it. And that’s what I said someone did with the foley catheter. They added a balloon to the tip of it and and that has prevented less damage. He still disagrees. So after that conversation, I asked him about the Flip valve. He just said, Not recommended! So, I walked out of there wondering why would that valve that would change my live not be recommended. Then they wonder why we all go to the web for information. I have noticed the urology info is very rare to find up to date information. This is a good site and I do appreciate your info.
Hi Stephen. I’m so glad you were able to get a Duette! I wish I had :-P. Sorry for the delay in the reply. the site has not been notifying me of comments. But you are right! So many doctors – with no reason at all – are just stuck in their ways. The Poiesis website has the clinical data here http://www.poiesismedical.com/research-education/clinical-studies/ if he wants to see it.
I wonder why he says he “doesn’t recommend” using the valve? What are his reasons? Yeah. I might consider looking for a new doctor maybe? either way, best of luck with everything – especially in this COVID age!
Well Ken, If this was a good answer for cath usersI think we’d see more urologists sending their patients to them. I, like you, have only seen one company; ‘Tru Flo producing the valve. I think most urologists worry about UTI’s from valve usage.
Thanks for the comment, Jim. You know, the only problem my surgeon had with the valve was that he WANTED my bladder to rest so the stricture could scar down without any pressure on it. He was kind of mad at the other urologist who said I could wear the valve (cap) only because of that. There is no evidence that using the valve over the bag causes more UTIs. More myths. Heck, it would seem that you should have fewer (though there isn’t evidence of that either, so far as I know), since you don’t have as much surface area – like inside hoses and bags – for bacteria to stay. But I say again – there is no evidence either way.
Cheers!
Ken
Ken, I believe your correct in thinking there will be less of a chance of UTI when using a catheter valve in place of the drainage bag. I’ve seen some articles that supports this thinking, mainly because there is much less area to support bacteria growth. The is a major design feature in the tru-flo valve, where the tip is the shut off point and there is no residual urine in outlet tube like the Flip flow valve. I’ve been using the tru-flo valve for a couple of years now and think it’s great. To prevent the cap from pulling off, I suggest you give the cap a slight twist before you slide it open. I’ve been doing this, and the cap never pulls off. I understand they are coming out with an improved design that has addressed this issue.
Gordon
Thanks Gordon! I’m glad it worked for you. Id be interested to know about the the new design when it happens.
Cheers!
Ken
Ive only recenly switched from bag to flip-flo and now can get back to work!
Be careful the different products are compatible as my tube end is slightly streched due incompatibility.
My (latest) question is how do you knoe when you definitely have the urge to empty the bladder as it it comes on and off some of the time. Ive been emptying every 2 to 3 hours though sometimes feel im peeing myself when im not. Perhaps im too worried?
As my first operation its been a right ordeal!
Si,
Yes, it really frees you up doesn’t it? And yes, it is really important to get a tight fit. I never had any trouble getting the Hollister caps to fit snugly into the end of a Foley. But I never tried it with the pig-tail I had for my very first catheter.
So “your mileage may vary” as they say – on the fit.
As to knowing when to “go” – that’s one of the best benefits of doing this. You only go when you get the urge to. I realize this may not work for those without sensation. But if you are otherwise neurologically healthy, your bladder will now fill up, which it couldn’t do when you had a bag. And when it gets to a certain level of fullness, it’ll tell you it’s time to go! IF you’ve had a bag on for a long time, it might be every 30 minutes, as the bladder is not used to doing it’s job anymore, which is filling and emptying. But once it is allowed to fill and empty enough times, you should be back to the normal 4-5 hour interval.
Here is a reminder for everyone reading this – check with your doctor before replacing the bag with a cap/valve. If you are awaiting surgery, your doc may have a reason for needing your bladder to “rest.” If the latter is true, and if you don’t consult with the doc, you may end up pushing your surgery date back.
Hope that helps!
Ken (who is not a medical professional)
Hi I saw this post was from 2013, but wanted to know, I have been using a supaubic catheter for about . Years due to urine not able to leave my body (spinal bifida)
I have been looking up for longer period since. I have been . Years with a cath. I want the freedom this sounds amazing, but my uro doctor didn’t want me to cap it due to risk of infection i am sick of the infections so am going to do some reading later on to see if anyone within my time frame can retrain my bladder thanks for a simple page to understand!
Hi Missy. First I have get the disclaimer out of the way that I am not a medical professional. There. Having said that, I have experience and am a believer in proper research. by “proper,” I mean clinical evidence and statistically valid data. It is a fact that women are more susceptible to UTIs just in general, largely (if not entirely) due to the shorter path from the outside of the body to the bladder (shorter urethra). So (I’m assuming by your name that you are a woman), even if you did not have a catheter, you’d be more likely than a man to get a UTI. However I am not aware of any evidence showing an increased likelihood of a UTI when using a valve rather than a bag. Some may argue that it isn’t a “closed system.” But having a bag isn’t either. You have to change your bag daily, and every time you do, you “open” the system. And once you have an SP tube, you are colonized with bacteria. So the getting of a UTI or not has little to do with “getting” new bacteria” and everything to do with being healthy and rested, allowing your body’s natural defenses to prevent these bacteria from causing infection; and also keeping things moving so that you don’t get crusty crystals and other particulates blocking up the tube (which can happen with stagnant urine and tubes that aren’t changed every month or so). Also, there are advantages to allowing your bladder (assuming there is no other medical condition to make it worse) to do its natural job of filling and emptying naturally, which is what happens when you use a valve instead of a bag. So without any other information to the contrary, I don’t understand the fear of increased risk of UTI. I would ask your doctor about “bacteriuria” (bacteria that is THERE, but NOT causing an infection) and the fact that SP patients are already colonized but usually NOT ill with UTIs? And as why he/she thinks a valve would be more likely to give you a UTI when you ALREADY have bacteria in your bladder.
Good luck!
Ken
Hi,
This is a really informative post on a topic not often did used, thank you!
In your opinion (as a non-medical-professional), would you say it is necessary to wear a night bag with a flip flo valve if mobility isn’t too much of an issue and during the day I have fairly decent sensation to tell me when it’s time to pee (usually every 3 hours ish – sometimes less)? I’m recovering from transverse myelitis that caused paralysis from the chest down so I’m trying to retrain my bladder the best I can. I tried without a catheter for the first time in 2 months and had no success – I just couldn’t go! I’m hoping I get back to full use of my bladder.
Hi Helen. Yes, “as a non-medical-professional” (thanks for that;)), I ALWAYS wore a night/bedside bag (much larger capacity than a daytime leg bag). I COULD have gone to bed with just the valve, but it was VERY risky. It doesn’t take a lot of pressure to either pull the valve out completely, or for it to open. So the risk of wetting the bed was VERY high. My advice, unless you have a medical reason not to, is to always wear the bedside bag when sleeping. I don’t know about a flip flo valve though. Bed bags come with the standard anti-reflux type valve on the bottom of them. I don’t see how/where you would be able to use a flip flo valve with a bed bag.
I hope that helps!
Ken
Hi I have just had a catheter with leg bag fitted today.
My district nurse is however ordering some flip valves as she thinks this may be easier for me. At the moment I have a long tube as the wrong ones were ordered so the bag is down at my lower leg not ideal for a woman but with the flip flo hopefully this should be better.
Hi Sue. I always wore my leg bag with a long tube down around the outside of my leg just above the ankle. I actually really liked it that way. When I needed to empty it, I would simply lift up the bottom of my pants leg, unhook the lower leg-bag strap, aim the valve into the toilet, and with my other hand (holding the strap out of the way!), just empty it into the toilet.
The tubes for the leg bags (at least the kind I had – Hollister) were stretchy and flexible and had to be cut to size anyway. I would always bend my leg to about 45 degrees, and run the tube along my leg to make sure it would have some slack when I stood, but not pull tight when I sat.
But I think your nurse is correct. On the day I wanted to be active and go out into the world, I’d put on the leg bag and felt very free! Almost normal:). It was awesome.
Good luck!
Ken
BTW, the Hollister leg bag could be used without an extra tube, as I recall, if you just wanted to put it on the inside of your upper leg. The long tube had to be ordered as a separate thing. So it may be that they weren’t wrong, per se, but that you were given the tube as an option for if you wanted to wear the bag at the bottom. But since I don’t know what kind of bag you got, I can’t be sure.
Hi, a catheter valve is not available in my place. Can i use a (umbilical) cord clamp on the drainage port of the catheter so i can release it as and when needed? It would still obviate the need for a leg bag. That means the drainage port end distal to the clamp is not fully closed to the atmosphere and will that increse my chances of infection?
I don’t think it would be wise to use anything that is not made for the purpose of stopping up the tube. Can you not mail order one? That’s how I got most of mine. Try this link to order a bag from amazon, and then just remove the valve from the end of the bag and use that. My own urologist showed me how to do that. Remember that I’m not a medical professional. I will say, though, that at the end of the day, once you have an indwelling catheter, you’re already “colonized” with bacteria. So further efforts to keep bacteria out may not decrease your chances of getting an actual infection (being colonized and having an actual infection are two very different things!). Hopefully that information is useful. Good luck!
In my last post I forgot. The only bag available where I am is a simple affair with a tap and string to attach it to something like a belt around your middle. Not great but I have got quite used to it. I am still using the original bag and it seems fine. I was told I must have the catheter changed about once a month (is that your experience?) and when that happens I will get a new bag i.e. bag change once a month. How does that sit with you?
Kind regards,
Michael – Yes, you should have your catheter changed monthly (give or take a few days) to help prevent UTIs, according to a huge preponderance of the literature. Though you will have bacteria inside your bladder the entire time you have an in-dwelling catheter, you can avoid getting an actual infection. There is a big difference between having the bacteria in there and actually having those bacteria invade your system to cause a UTI. See my post “Catheters And Urinary Tract Infections” for more on this. But the usual advice is to have the catheter changed monthly. However, I should also say that I didn’t find any clinical studies (which doesn’t mean they aren’t out there, I just didn’t find them) that show a statistically significant change in UTI risk by having the cath changed monthly.
And regarding your question about the valve. I ended up never using a valve that was purchased by itself except to try one and have it be terrible. What I did (which is what my urologist did for me the first time) was simply to cut the valve off of my Hollister leg bag, and then just plug that valve into the end of my catheter. You can mail order these Hollister bags from Amazon HERE. I hope that helps. Good luck!
Firstly thank you very much for taking the trouble to reply. Greatly appreciated.
Will my bladder have become “very lazy” after six weeks with a bag and no valve i.e. constant draining, and will using the valve be a rude wake up call? Seems to me (but maybe I miss something) it would be better to start with a Hollister bag and valve combined to obviate accidents i.e. with the valve closed, if there was a leakage, then that leakage would go into the bag not down ones leg!
Just a bit of background to my problem. My inability to pee is, I am sure (and my doctors do not disagree) a mental thing. But it got so bad I was a nervous wreck. I travel a bit and it got to the point that I could not pee on aeroplanes. On one occasion I was in acute discomfort for almost five hours. At that point I said enough is enough and had the catheter put in. It has changed my life. Having lost six kilos (I was only 73 and I am 6ft tall, so down to 67kg) as I was so worried I could not eat, I am now happy and have put on three kg. If I could get this valve to work properly i.e. feel comfortable for 2/4 hours, then living with the catheter would not be a problem. Do you think I could get to that point.
Kind regards,
Michael,
You’re correct that your bladder may have to retrain. I have a post on that somewhere on the site here as well. When I did the valve thing, I only did it for a week or two. Then I was told to go back to the bag because my surgeon said they needed there to be no pressure (urge to pee) coming from the bladder, since that might inflame the stricture. But that isn’t our problem, so it wouldn’t apply. To answer your question about retraining your bladder, it’s a very individual thing. My mom had a catheter for just a few hours during a surgery and it took months for her to be able to go the normal 4 hours between visits to the toilet. When I first started with the valve-only option, it was every 30 minutes. I got it up to between 45 minutes and an hour after a couple of weeks, but then had to go back to the bag until my surgery. Interestingly, when the surgery was over and the removed the catheter for the last time, I was able to go immediately back to every 3-4 hours, and now am at the normal frequency. There is some literature out there that says most people will have to retrain their bladders by just holding it a little each time and waiting before actually going to the bathroom. But as with all suggestions I give, I must remind you that I am not a medical professional. I hope that helps!
Again thank you so much for sending me a reply. I guess I will simply have to see what happens when I get the valve. Of course I suppose the end game is not only to hold on for a sustained period (be it one hour or three hours) but to be comfortable for that time and then need to go as normal. To last for two or three hours but to be uncomfortable for most of that time would not be much fun. Are there any leakage issues with valves assuming, always, that one closes them fully and properly. With my simple bag (it is all I have at present) I have not had any leakage issues (except once when I overlooked to fully close the tap but that was solely my fault). Also can one sleep with a valve or does one have to change to a bag by night. Are there a lot of different valves/different manufacturers or are they pretty well standard. Sorry for so many questions, it must be very boring seeing that all this is behind you and you are healthy.
Kind regards
Michael,
I didn’t mean to imply that I “had the urge” to go at every moment with the valve. I would pee via the valve, close the valve (which never leaked, BTW. Just make sure it is inserted snugly), and go about my day not feeling like I needed to pee until about 45 minutes later. It’s just that you try to extend how long you “hold it” over time when the urge does come. Hope that helps!
Many thanks, maybe I will report back when I get more organized just to let you know how useful all your input has been.
Kind regards,
Sorry to be a bore but just wondered about sleeping with the valve. Would the urge to pee wake one up just as it does normally. At the moment I have my bag (all I have) in bed with me. It works OK, I keep it on the inside so as it does not fall on the floor. But to have only the valve (when I get one shortly) would be a blessing if it works. Many thanks.
No bother at all, Michael! Please feel free to ask whatever questions you have. I say do NOT sleep with just the valve. You need a bag. HOWEVER, you should be using a bedside bag (like this) that can lie on the floor, or (they have hooks) can hook to the bed railing. It SHOULD be below the level of your bladder at all times to avoid urine possibly flowing back into your bladder. And besides, you’re absolutely right about having to get up 10+ times a night (at least at first) if you wear just the valve at night. Hope that helps.
You’re a very tolerant man, thank you! Yes I guess right now some urine is flowing back into my bladder but I have no alternative for a few weeks. I will then get a bag to sit on the floor. The valve is clearly not a night time starter which I suppose, by definition, is going to lengthen the bladder training process i.e. continuous emptying of the bladder at night making it “lazy” countering, at least to an extent, the daytime training with the valve. The whole thing is a bit of a minefield, I hope not too many detonations!
Kindest regards,
I have just been reading (again) your posting of 8th June 2013 since I have been given a Bard leg bag with a flip flo valve. I also looked up the truflovalve and see exactly what you mean about pulling it out every time one tries to open it. It looks a nightmare. I am tempted to remove the valve from the Bard bag but just wondered if you ever tried this or did you only use the Hollister valve (the Hollister and Bard look a bit similar?). During this research I was reading Jen’s posting and your reply asking him if he was “ambulatory”. I must confess I had to look this up in the dictionary and it seems to mean bedridden (I am certainly not). However I note you never received a reply from Jen. Is cutting out the valve from the bag very tricky. I am so keen for the valve to work (as you said you felt so liberated not having the bag) that I am nervous about trying, but with your encouragement I will give it a go! Thanks again and kindest regards,
Michael – Yes, I just removed the valve from the bag. It’s pretty secure in there, so I had to use scissors to CAREFULLY cut the parts of the bag around the valve stuck into it without damaging the valve’s tube. So you do sacrifice the bag to get its valve. But yes, that is exactly what I did. And if the Bard leg bag comes with their “Flip-Flo” valve, then it’s VERY similar to the valve on the Hollister. So it should work fine for you.
So sorry another issue. Now that I am in possession of a valve I have been playing around seeing how I could attach this to my thigh. I see in the photograph (your post 8th June 2013) that the Foley tube and valve is attached to the top of your thigh. But my Foley tube from my penis to the end is only 6.5ins and there is no way it would reach the top of my thigh with enough slack that would allow me to sit down. I could fix it to the inside of my thigh with enough slack but that is not so satisfactory (by the way I am 73kg and 6ft tall so you can imagine my thigh is not very large). Am I missing something? Thanks vm.
Michael, I had a suprapubic catheter, so it came “out of me” much higher – just below the belly button. It didn’t have to go down and back up again, just across and a bit down my leg. But It should work fine if you put a sticker (catheter securement device) on the inside part of your thigh. I mean, you should already have a place where the bag attaches and secures to your leg, right? Well, wherever the bag would attach, that is where you put the valve. It should be less of a pull on your tube, because you don’t have the weight of the bag pulling on it, which gets heavier as it fills up with pee. Does that make sense?
Thanks again. Well since I only have the one leg bag which, if I can find straps (at the moment none), I could use on a forthcoming flight, I did not want to wreck it. So I have rather abandoned that plan. I note your situation was different i.e. the suprapubic cath. Presently the bag I have (and all I have) cannot be attached to my thigh (no straps or fixings at all) it can only be suspended by string from a waste belt I concocted from a bicycle bag or just carried around with me when home alone (a lot). Very Heath Robinson I am afraid. When I get a valve I will have a doctor around who, I daresay, will be able to help me work out how to fix it with, hopefully, a sticker. By the way I have been using my bags for a full month (changed when my cath was changed) is that your experience. As I have had no valves and no alternative bag (only the one leg back so far without straps) I have never needed to unplug the valve from the cath, it just stays connected all the time.
Kindest regards,
So are you not able to mail-order any bags, Michael? There are much better solutions out there for you that don’t cost much. And you can order from Amazon. You really should have a day bag (leg bag) that can attach with proper straps, and a bedside bag so that the drainage goes down and away from your bladder during the night. The latter are also much larger than the leg bags and can last the entire night.
To answer your question about changing bags when the catheter is changed, yes. It’s recommended that you change bags monthly along with your catheter. That’s pretty standard. Though I did sometimes go a bit longer with my leg bag, which I would rinse and hang up to dry overnight while I wore the bedside bag.
I hope you can get these things. I think you’ll find life much easier. good luck!
Ken
Sadly, as I mentioned, I am in the sticks and nobody will mail things here. But I will be in Bangkok in just over a week where, hopefully, I will be able to get all I need. Just one other point, when you were using the valve by day and changing to the bag by night, what did you do with the valve overnight i.e. leave it in a glass of water with a bit of something like Dettol? I note you washed out your leg bag at night so maybe treat the valve in the same way to keep it germ free.
You’re a star to be so helpful. Thanks and regards,
Wow. I can’t imagine living somewhere I can’t even get mail. I’m surprised you have internet access! To answer your question, I just rinsed it first, then wiped it off with an alcohol swab. But then I just left it sitting on the sink. And to be clear, I did not “wash” my bag out at night. I simply rinsed the pee out of it. You’ll read about people who do all this antibacterial cleansing or at least using detergent or soap. The fact is that with an indwelling catheter, you are ALREADY colonized with bacteria – bacteria that are not causing infection (called “asymptomatic bacteriuria”), and to date, there is no evidence that using antibacterials or other detergents actually has any effect on the occurrence of UTIs one you are colonized. Your best bet is to stay healthy, keep your immune system strong, and avoid things like a build-up of bacterial biofilms by changing your catheter and bag monthly. But using cleansers and such doesn’t help. It’s really mostly a waste of time. See my post here – Urinary Tract Infection and Catheter Care – for more about this. Bottom line, you can’t keep it germ-free. The germs are there already. Good luck in Bangkok!
Brilliant, so many thanks. I have just read your piece Urinary Tract and Catheter Care and I am sure it makes sense. I presume I could buy alcohol swabs in any pharmacy? You are right surprising I have internet but that is not too bad (relatively recent, though!). One thing, I just had my cath changed (after one month) but the hospital only had a Foley 18 while the one they removed was a 16. That had been extraordinarily comfortable, hardly knew I had it. But since the change I have have been having quite a lot of discomfort which I rather hope is the size change and not something else. Have you ever had this experience? If they do not have a 16 here before I leave I was thinking to have it changed in B’kok. What do you reckon. Very best wishes,
Most probably by complete coincidence, but ever since about the time I had the original cath put in (now about five weeks ago) I have had a very unsettled tummy on and off, and on and off discomfort in my bowel. I have not been constipated but what I guess I would describe as a very unsettled tummy. Some gripey pains, a lot of wind and feeling I want to have a bowel movement an hour or so after having had a perfectly satisfactory one. Its variable but I have more, or less, discomfort pretty well sometime every day and likely night as well. Not asking for solutions but just would like to know if it is probably a stand alone problem or could it be in anyway connected to having the cath. Thanks so much.
Michael – that’s not something I can speak to really. For all the legal reasons I must reiterate (mostly for those who are not you, since you have heard it already:)) that I am not a medical professional. But here is what I know. The indwelling catheter – especially the Foley (type with just one balloon and the inlet tube with all the holes coming out the other end and into your bladder) – causes some damage to the inner walls of your bladder, usually when the bladder walls get too close to the inlet holes and get “sucked” into it (called aspiration). This, plus other factors like stress and whatever actually caused the need for the catheter in the first place, can cause all manner of tummy trouble. But that’s about all the light I can shed on that, I’m afraid. Hope it helps.
Michael – The large majority of my time – including all the changes – were suprapubic catheters. The “transurethral” (through your penis) catheter I only had after my urethroplasty, so it only stayed in for 2 weeks and didn’t need swapping. But it toally makes sense that a larger tube would cause more discomfort, I suppose. I’m not surprised. If you are in Bangkok and have the opportunity to have them switch it for a smaller diameter, I don’t see the harm. To clarify, though, for others reading this – yes, in general it is a bad idea to insert a catheter if there is no need because overuse of catheters has been strongly linked to higher UTI incidence. HOWEVER, if someone ALREADY has a catheter, there is not evidence that changing it more often than monthly increases the incidence of UTIs. I would actually argue that if anything, it might decrease it. But there is no evidence either way, as far as I know. If anyone can find any clinical evidence on this, I love to hear it. Good luck with it, Michael!
Firstly I wholly recognize that you are not a medical professional but I am eternally grateful for your passing on, on a “best efforts” basis, your experiences. Dear oh dear this tummy thing sounds a worry. It just so happens today is one of the worst days I have had, gripes all day. Living with a cath, in general, I think is manageable, but these tummy pains would be very difficult. Do you think I might get over them in time? Again I realize that whatever you say is just based on non professional, shall I say, “gut feel” (excuse the pun), basis.
Just reflecting a little, I note you said “..especially the Foley (type with just a balloon and the inlet tube with all the holes coming out of the other end and into your bladder)..” Might that suggest that one could use a different type of cath or are they all much of a muchness. Thanks so much, Michael.
Michael, there are several types of catheters – the foley being the most common. My first one was actually a “pigtail” catheter, whic has no balloon. It just curls up into a spiral once it’s inside your bladder, which prevents it coming out. The one I really wanted to try, though, but never got the chance, is called the Duette. See my article here: The Duette – A Better Catheter Than The Foley. And watch the video. You can order one of these as well, but whether your doctor will be willing to use it is another question. Ironically, you might have better luck in Bangkok if you order one (or have a friend do it, or have it shipped to an address somewhere you can pick it up). But that article and the video on its page will show you why Foleys are not good for your bladder.
Good luck!
Ken
Hi Ken, that is most enlightening and thank you. But it does all sound pretty hard work. Just the various points you make:
1. Funnily enough I once tried to let the tube dangle in the shower (with no bag) but then thought better of it and now always leave the bag on the shower floor. Glad to have your advice and will stick with this routine.
2. Presumably one needs to somehow tape the gauze to your belly, or does it just sit on the wound but surely it will fall off.
3. Changing yikes! Well of this I am so glad you have warned me. I was wondering how the change worked. As you will obviously know better than me when changing the trans they use some kind of liquid anaesthetic and to my astonishment, so far, it has never hurt (it tickles a little but no pain as such). But from what you say with the SP they just push the cath through the hole with no anaesthetic. Does it hurt when they take it out.
4. Very helpful ideas. When I get a valve (when I get to London in three weeks) I am going to try it with my trans cath and see how I get on. I guess it would be the same with the SP as you describe. But with the SP, if you close off the cath, does the pee not automatically come out of your penis.
My problem is I am a hopeless squeamish wimp and blood, holes in the belly etc. make my hair stand on end. I have an infection at the moment for which I am taking Levofloxacin (Cravit) it is damn uncomfortable accompanied by some discharge. Are infections less prevalent with SP’s.
Oh dear, what to be healthy.
Best wishes and so many thanks again.
The whole thing seems a bit of a minefield
Michael
Michael,
Yeah, I forgot to mention that. Get some paper tape from a drug store, which is what I used. And I didn’t tape it all the way around, just at the top, actually, to keep the 2 cut halves from coming apart, and that’s where the tape also stuck to the skin.
About changing the SP, it does not hurt when they take it out. And it didn’t hurt going back in the 3rd time (just like you say a sort of quick “doh” of not really pain, just a sort of tickle.
About the valve with the SP – yes, the pee would normally come out of your penis…if you didn’t have a blockage or some other reason why it might not. That’s why you have a catheter. I thought yours was because you couldn’t pee the normal way. But if you CAN, then yeah, you would pee the normal way.
According to this article – https://www.annalsoflongtermcare.com/article/4643, SP caths may lead to fewer UTIs than trans-urethral caths. But I don’t know how significantly different it is. You might wan’t to do a little Google searching for that info.
Best of luck!
Ken
Dear Ken that is hugely helpful and informative. Thank you. Just to touch on the various issues:
1. Thank heavens you told me about the bag in the shower. I was just thinking to abandon it and let the tube dangle (as you described) but I certainly will not do that now.
2. On the SP do you need to secure the gauze with plaster, otherwise would it not fall off.
3. Yikes. What an experience with the wire. On the 3rd occasion when they just pushed it in do they give you the liquid anaesthetic that they use with the trans cath. I am always amazed how they insert the trans cath without it hurting. But I suppose the tummy wall is not as sensitive as the penis.
4. Idea for shorts and care of not yanking out the cath most helpful advice. I note you say “or if you can pee normally do that”. When you blank off the cath with a valve does the urge to pee not automatically transfer to your penis. The doctor here gave that impression but it did sound a little simplistic.
My problem is I am so squeamish and a total wimp when it comes to all things medical, blood, tummy holes etc. I find it all so scary. I have an infection right now for which I am taking Levofloxacin (Cravit) but the tube remains very uncomfortable (whether that is the infection or not I am not sure). It is really sore particularly when I walk I guess with an SP I would not have this problem. Also I think you said infection is much higher risk with a trans than an SP.
Ken you are a living miracle with all your input, I find the whole thing very daunting.
Best regards,
Michael
Hi Ken – I have to say I am in something of a decline having received your message as I was hoping you would say that a trans cath need not be uncomfortable. The SP changing fills me with foreboding and, in addition, I doubt I could have it done in my location leaving me with, really, no other option than the trans. The best way I can describe the discomfort I have is it stings/burns the whole time (the first one did not).
Groping around for solace I must get onto these Grip-Locks as perhaps they might help by limiting any pull on the penis from the tube. Are they showerproof and/or re-useable as otherwise it means a new one everyday. I looked up Zefon but do not know if they would mail outside the US alternatively if they have a UK distributor.
I was looking back at your post re valves as this is something I would like to try if only to get away from the bag by day (and, if it worked, it seems it would solve my query about wearing short clothes). I note you said that Bard did not market their Flip-Flo valve unless with a bag. But I dug out a site http://www.bardmedical.co.uk/FLIPFLOCatheterValve where they show a picture of the valve in the catheter tube. They say Product Description “Flip-Flo Catheter Valve with 180o lever tap Community Product Code BFF5 and Hospital Code BFF20” They then say “Advantages – Easy to open lever tap – Empty bladder at own convenience”. Could be an old or, there again, a new bit of marketing.
Is blood in the urine very alarming. I sometimes get flecks of blood (like red bits of cotton wool) in my urine and also sometimes similar white bits. The other day I found I had blood spots on my underpants but they never reoccurred.
Do you have a view on alcohol consumption apropos having a catheter. I only drink wine in the evening, but I do like it and would hate to give it up.
Thank you and best wishes,
Michael
Michael,
Don’t take what I say about the trans as universal. I only had one for 10 days! I have almost no actual data or experience to pass on for that. I do know that several folks on other urology forums live for years with trans caths with not problem. So take heart. The fact that this one is causing you pain and the 1st one did NOT, should tell you something – whatever it is seems to be specific to this cath. Get it changed and things may get better. In the mean time, maybe try putting some vaseline or bacitracin ointment on the part of the catheter that goes into and out of the tip of your penis all day and night. That might help ease the pain and heal whatever is irritated.
As for the valve, maybe they do sell them separately. I just happened to have some extra bags, so it was easy just to pull them off of those. Try to order one. If you can get mail, you can get a valve or bag-with-valve mailed to you. As for the GRIP-LOK stickers, I actually can sell those to you. Zefon sells them to me wholesale, and I keep a small supply. If you’d like to order a pack, go here.
Blood in your bag usually means blood in your bladder. You need to tell you doctor about this. Something is probably irritating the bladder wall – possibly the tip of the catheter. Either way, tell your doctor!
And there should be no reason why you cannot drink alcohol – but as I have to always say – I am not a medical professional, so don’t take this as advice to safely drink alcohol. I’m just saying that I don’t know of any reason why you wouldn’t be able to, other than the risk of getting very drunk and risking pulling the catheter in a fall or something.
I hope any or all of that helped.
Good luck!
Ken
Ken many thanks. These messages jumping about is weird, I only just found yours a few messages back in the post.
Thanks vm re the trans cath, I must persevere. The current one is made of silicon put in by the HK doc who was critical of the one I had in (but, as I said, I was not impressed by this doc). But I will review this in London in a few weeks with my urologist there. Meanwhile I am off to the pharmacy for bacitracin or Vaseline.
Valves/Grip-Lok’s I know Bard have a centre in London so I am heading there on my arrival 10/12. I will see what they have, and do not have, but may well be knocking on your door for the Grip-Lok’s . Meanwhile are they reusable and/or shower proof.
Blood I understand. About six weeks ago I woke up with my bag red (well shall I say pink) but with blood smeared on the wall of the bag and I was really alarmed. I high tailed it to the hospital (but this is my problem they are not up to speed at all) and they took a sample for analysis (takes weeks). Meanwhile they gave me nothing but to my astonishment within twenty four hours my urine was clear. That is all apart from the spots of blood a few days ago (also never reoccurred) and these little flecks. Again I will take this up with my doc in London.
Re alc without wanting to sound holier than thy I think I can say I have not been drunk for more than forty years. I just happen to love wine which I drink for the enjoyment of the product. I must say I find it quite extraordinary how people go out just to get slaughtered. Even when I was young I do not recall going out with the express intention of getting drunk. Yes, we often drank too much but more because we stayed up half the night and therefore, by definition, one was drinking for a long time. But doubtless I miss something!
I hope this message stays in chronological order and does not disappear way back in the post.
Your on going eternally grateful,
Michael.
Good to know you’re going to see your urologist and visiting Bard. Good luck with that. As to the GripLoks – I found that they would last me 3-4 days and did survive a couple of showers in that time. You’ll find that the edges come away from the skin a bit, but that’s normal if you bend and straighten your leg as most folks do. It will continue to hold fast for a few days with the middle section still stuck.
Cheers,
Ken
A mail I just sent you seems to have jumped back to 5th November, so you would have to scroll back to see it.
I have had an SP for 4 months and have just gone from s leg bag to a flip flo. I had an SP when my stricture was so bad I could not pee ( hugely painful). I had two further operations one to try to widen the stricture but the scar tissue was so bad from a previous prostate removal and osteomylitis it could not be done.
The second op was to removed large bladder stones. Big scars and a longer recovery. I have always used leg bags and night bags .
It is getting into a routine that is important. Accepting a permanent SPC takes time but no other option was on the cards. Night bags are disposable each time.
Leg bags did pull on the wound site and positioning of the SPC is important. The wound is cleaned twice a day.
The Bart Flip Flo takes time to get used to. Visits to the loo every hour !!
Patience and mental training is hard but it has to be done. My bladder has been lazy for 4 months and has to be retrained. At least a flip flo is not so weighty and is more comfortable. Its the spasms which have to be managed now!!
Thanks for telling us about your story, Graham! I agree completely. Bags will allow you not to have to go to the loo for longer periods of time, but the valve allows you so much more freedom and the ability to live pretty normally. And if you want to go to a movie, you can just change out the valve for a bag! I was interested in your comment about the night bag being thrown out every morning. Can I ask what kind of night bag you were using? Usually both kinds of bags are good for 3-4 weeks. Just rinse them thoroughly when taking them off. There’s a lot of debate on this, but the data about UTI incidence just do not support the idea of using antimicrobials on bags when you’re already wearing an indwelling catheter. Hard to swallow but true. Anyway, thanks again!
Ken
When you cut the valve off the bag, do you cut the tubing around it and insert the ridged part of the valve or do you cut the little bit of tubing on the valve and insert that into the catheter?
Thanks,
C
Hi C,
The first thing to clarify is that I didn’t “cut” the valve off. I pulled it out. You have to pull hard, but it should come right out. If yo try to cut it off you may end up with a bunch of plastic still wrapped around the plug.
That 1st part sort of answers the second question I think. The valve will have a “neck” (it is usually ridged, yes) that you insert into the end of the catheter. Does that help?
Ken
Not sure if you got my previous post about cutting the valve out of the bag. Do you cut the tubing around the “threaded part” or leave on tubing?
Thanks…great idea!
Yup. I posted the reply on the 7th. Here’s what I said:
“Hi C,
The first thing to clarify is that I didn’t “cut” the valve off. I pulled it out. You have to pull hard, but it should come right out. If yo try to cut it off you may end up with a bunch of plastic still wrapped around the plug.
That 1st part sort of answers the second question I think. The valve will have a “neck” (it is usually ridged, yes) that you insert into the end of the catheter. Does that help?”
Ken
Have you ever used catheter plugs when showering, and if so, are they reusable or do you need a new on each time.
Thanks in advance for your response.
Hi Steve. I tried it one time. It didn’t like it. It felt weird to me when I pulled the plug out because then the pee will stream out. Of course that’s also messy. What I started doing was just leaving my bedside bag on when I showered. It’s long with a very sturdy tube. So the bag sits on the floor of the shower. Everything stays connected, so in my book, it’s a win all around. Just dry off the bag when you get out of the shower. I always thought it best to reduce the number of times I opened my catheter tube to the elements, and to limit the time it was open. However, the evidence doesn’t really support that this makes much difference once you are colonized (which you are if you have an indwelling catheter). I just like to hedge my bets:-). Anyway, I hope that helps.
Cheers!
Ken
Hi, I have been reading the posts on this site with great interest and hope I can help contribute. Many of you seem to be in the USA but I have found the same “lack of information” problem in the UK, trying to get good advise from health professionals is like getting blood from a stone!
I found standard supra puubic catheters gave me an infection within seven days of being fitted. I’m talking, peeing blood, shivering and shaking with a fever etc etc. I had eight consecutive courses of Antibiotics and ended up with terible infection that was only sensitive to one extremely strong antibiotic normally reserved for hospitals. The catheters were reinfecting me each time, I have spasticity in the lower half of my body and had suffered kidney damage from the back pressure so had no choice but to have a Catheter fitted.
My Sister did some research for me which I followed up on silver coated supra pubic catheters, I thought I would try the Bardex I.C. Aquafil catheters. Ureca!! Absolutely fantastic, I have been two months now infection free! I use a size 16 of the type that easily first the Bard Flip Flo valve. The Catheter part number is: D236516S. I’m particularly sensitive to infections and contracted one every single time I tried using Urethral catheters, so they were not an option. There are many people out there like me and the Medical Profession pretends we don’t exist!
I refused to use a bag from the beginning, not only because they get in the way but also because I have been told the bladder walls can grow together if not inflated on a regular basis and you end up with no capacity. But recently I’ve found another big reason for not wearing a bag with the tap left open. I have a friend who uses a Supra Pubic with a bag and he was back flushing his Catheter every two days because if he didn’t the Catheter got blocked. I asked around and a very helpful Nurse told me if the bladder is always empty, the inner surface gets dry, skin starts to flake and catheters block! Now after years of flushing my friend simply leaves his tap off until he feels full and then empties into the bag by momentarily turning on the tap. Going bag free is not an option for him as he is wheelchair bound.
I feel really angry you have to find these things out for yourself.
Hope this helps someone!
Thanks Mark! Glad you found a way to make things better for yourself. Yes indeed, silver allow-coated catheters (which is the kind you mentioned) have, in fact, been found to decrease UTIs – https://www.ncbi.nlm.nih.gov/pubmed/9753027. However, silver oxide-coated catheters have not – https://www.ncbi.nlm.nih.gov/pubmed/7709947. Good to know! I don’t think the bladder “dries out” if you have an indwelling catheter with a bag, though. I lived for 6 months like that with only 1 UTI and never any blockages. And many live for decades like this. I am not a doctor though, so if you can point me in the direction of a clinical study or some other source, I am always happy to learn and pass on the latest information to the readers here. Sometimes the bladder does need “rest” also. It is also my understanding that urine is not what keeps the bladder lining hydrated. Your body naturally (assuming you’re drinking enough fluids) hydrates those tissues at a cellular level. If they are changed regularly and the proper care is taken to keep the bag below the level of the bladder (to prevent back-flow), etc. most people do not have a problem. But UTIs will always be fairly common in those with indwelling catheters, sadly. You are correct about the bladder being better off inflating and emptying. That’s its job and if it goes too long without doing it, folks typically need to retrain it. And as for the blockages, that can happen for any number of reasons. It’s usually encrustation from crystaline bacterial biofilms (see paper here: https://www.ncbi.nlm.nih.gov/pubmed/20368711) that cause this, which yes, usually means an infections has taken hold. Also, sometimes the tip of catheter can damage the tissues and suck some of it into the inlets, also causing blockage. This is why I was pushing to try the Duette catheter (which does not have a tip at the end) instead of the Foley (a brand name, BTW).
Anyway, thanks again for contributing to the discussion! And I’m so glad you found something that helps you, and I hope will help someone else! good luck!
Ken
Hi Ken,
Thank you very much for taking the time to provide such a comprehensive response to my post. I’m a retired Engineer and generally find a way to couple things together, but I feel sorry for those that are not mechanically minded and rely on health professionals to tell them what is available. I know especially you and others too are providing a great service.
I initially found problems with Flip Flo taps made by Bardex becoming detached from my SPC as they had a smooth tapered connection. This problem went away when I switched from a Silone Rubber Catheter to the Bardex I.C. latex Catheters. With the Silicone Catheters you need the typye of Flip Flow valve with a surated garden hose type of connection. My local hospital has these but my Doctors Surgery insists on supplying the those with a smooth fitting.
I like to escape to a place in the sun at Christmas so thought initially, supported by my Doctor, I would change my own Catheter as the downside of the Bardex I.C. is Monthly replacement. But I went off this idea when local District Nurse could not get the new Catheter inserted because the site closed up, resulting in another procedure under a General Anasthetic. It seams one problem is that you have to be laying absolutely flat if that is how you were when the hole was made. Otherwise the bladder moves when you sit up. So it seems self replacement would have to be done virtually blind, especially if the belly is on the large side like mine!
Anyway will not bore you with more rankings!
All the posts seem to be jumbled up on my tablet, having a job to follow replies!
Kind regards, Mark
P.S…please excuse grammatical and spelling errors, “rankings” shoul read “ramblings”. Must start cutting and pasting from Word!
Ken Theriot the self confessed total amateur just happens to have the most informative page I ever read on this matter! Thank you so much Ken … hope you’re still about on this page.
I’ve had a supra pube for about six weeks now and after twelve weeks the hospital will be removing what is in place just now and replacing it with the tap/vale thingymabob.
When I change over to this will I be able to pee from my penis as normal now and then?
Ken Theriot the self confessed total amateur just happens to have the most informative page I ever read on this matter! Thank you so much Ken … hope you’re still about on this page.
I’ve had a supra pube for about six weeks now and after twelve weeks the hospital will be removing what is in place just now and replacing it with the tap/vale thingymabob.
When I change over to this will I be able to pee from my penis as normal now and then?
joe
Thank You Joe. That means a lot to me! I’m definitely still about:). I try to answer every comment as soon as I see it.
Are they actually replacing something? With me, changing from using a leg bag to using a valve did not involve changing the catheter. I continued to use the SP tube. I simply decided (after counseling from my urologist) to stop using the leg bag during the day, and instead, put a valve in place. I still needed to attach the bedside bag for night time.
Assuming that’s what will be happening with you as well, you may well be able to pee through your penis sometimes. It depends on a couple of things. You didn’t say why you needed a catheter, so I don’t know what’s going on “down there.” For me, it was a urethral stricture, so with the valve in place, I could have peed a little the “normal way” if I had wanted to. But the docs didn’t want me to pass urine over the stricture before the surgery.
I hope that answers your question.
Cheers!
Ken
Thanks for your answers. The reason I had the supra job done was because I have tumors on my spinal cord … benign but they give me a lot of pain and worsening mobility problems. The nerves don’t tell me when my bladder needs emptying when it’s full and so on but fifty percent of the time do …. so fifty percent of the time I was peeing normally but having to m,any accidents not knowing when the nerves were failing me. Neuropathic bladder sometimes called neurogenic bladder. Going for a listen to your tunes.
Thanks for that info Joe. And I Hope you enjoy the music:).
Ken
Hey Joe, I notice that you are on Reverb Nation? So am I! Here’s my page: https://www.reverbnation.com/kentheriot
Cheers!
Ken
Ken, I am not a medical professional, I am a user of the SP tube
For 8 yrs now from an incomplete spinal cord injury. I wanted to give you and your followers a few places to find flip flo valves without wasting a leg bag. There are many places through Amazon.com if you just search for Bard flip flo valve. http://www.shoplet.com sells the valves $3.33 each with free shipping on orders over $25!
I’ve never had a problem changing to a bag at night or when at home all evening and pushing fluids to rehydrate after cutting back so I can go 3-4 hours on the valve.
I would encourage anyone to try it at home first and learn to use it when our. It is definitely freeing!
Thanks for the tips D.J!
Ken
I’m delighted to have found this forum and apologize for the length of this 1st post. I’m a nube to all of this cathetering business, having started with a foley in May. I was to begin self-cathing in June but ran into problems I’ll associate with bad instruction and too much experimentation with different catheters and heavy handedness – creating a false passage. So I’m back in a foley, healing. I wondered about replacing the bag with a valve and was thrilled to find that Bard actually has one.
For the record no one in my urology practice has suggested I need to replace bags at all. I do clean mine each time I change over, with a fresh water flush, followed by a vinegar and water flush. It’s then hung to dry for reuse. I clean the connection again with an alcohol wipe before reconnection to the catheter.
I spent the first 2 weeks in the foley with a day bag. My iPhone alarm was set to go off every 2 hours overnight so I could get up to drain. No one told me about a night bag.
Fast forward to today. Since I’m supposed to be self-cathing 4 times a day, I would think the valve would be perfect. If self-cathing was every 4-6 hours, I could just do a valve dump on the same frequency. I’ve not discussed this with the doc yet and may not be able to – it’s a factory and hard to get to anyone some days.
As far as changing the valve goes, I don’t see a need. If it’s the same valve that’s on a bag then it would seem reasonable to assume that I could use it long term, if I clean it, not sterilize it, regularly. Your thoughts.
Hi Steven,
Wow, I can’t believe you were given so little information. I’m glad you eventually found out about the night bag though. Gah, can’t imagine having to set an alarm to empty my day bag at night.
Anyway, so why are you having to self-cath in the first place? If it’s a stricture, it would seem like a better idea to get that fixed than to self-cath 4 times a day.
If you are talking about putting in an in-dwelling catheter instead of self-catheterizing, I think that may be a mistake due to the higher risk of UTI compared to intermittent self-cath. Yeah, you could be more mobile and things would be more convenient. But it’s a trade-off. You have to change the indwelling catheter every month without fail, also.
If you do put in an in-dwelling catheter, make sure you change out your day bag about every 2 weeks and your night bag every month along with your catheter.
As for the cleaning of the supplies – I would recommend getting a new valve when you change your bag.
I hope all that helps.
Cheers,
Ken
Just wanted to let folks know that Zip-Lok catheter securement devices are now available singly. So you can get 1 or just a few! They are $5.69 apiece here.
i had a cather in for 2 mouth and got neve damageo my bladder is overactive so i can not yoes the value so got a leg bag on alll the time and its a pain and so down with it i was so active
Sorry to hear that, Mike. Are you getting treatment for the nerve damage?
Ken
Hello blogger i see you don’t monetize your blog.
You can earn extra money easily, search on youtube for: how to earn selling articles
Hi Ken,
I came across your blog as I’ve got an IUC at the moment following acute urinary retention problems. I’ve got a valve this week until they take the catheter out for the first trial without catheter on Friday. The valve has slipped off once and caused great embarassement despite having firmly jammed the thing into the catheter end! I also have an issue where when I drain the bladder, when the pee runs out, I get a sharp contraction/stabbing pain where I presume it’s picking up air as there’s nothing left to drain.
Is there a way to stop the stabbing pain, and any tips for *really* securing the valve?
Thanks
Thanks for your comment. When I was using the valve, I never did find a way to prevent the little jabbing pain after I was done emptying the bladder. It is caused by the bladder wall coming into contact with the inlet hole in the tip of the catheter. I believe that if you had a Duette catheter, this would not happen. Sadly, I never got to try one. It sounds like you will have your cutten one out before you could get one. But if you need to have it for longer, you might want to check it out. Here is my post on that: https://livingwithacatheter.com/the-duette-a-better-catheter-than-the-foley/
As for securing the valve, if it isn’t staying in the catheter tube securely, use some medical tape. Mine were always really tight. It might depend on what kind you’re using. As you saw in the article, I yanked mine out of the Hollister leg bags. Hope that helps!
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A dear friend of my had a flip flo fitted just over 4 weeks ago after experiencing some difficulties with self catheterising. I thought this was going to make her life so much easier but it would appear to have caused her more aggravation due to the valve keeping on leaking after emptying and then being closed off. She was having to change it every day.
Has anyone else experienced this issue?
Sorry to hear that. I never a problem with it leaking. I used the ones off of the leg bags (Hollister) like I mention in the article. the tapered end pushes securely (or should) into the end of the catheter tube for a tight. leak-free fit. She should make sure the valve is pushed far up into the catheter tube, if that is where it is leaking from. And these things should not be leaking from the valve itself unless it is faulty. They are designed to keep pee securely inside a leg bag. so they’d be pretty useless if they leaked. Maybe she should try getting a Hollister bag and just yanking the valve out of it. That is what I did. Hope that helps!
I am a 69 year old male; Army Veteran. I have a question about UTI’s and using a valve instead of a leg bag. I underwent Cyberknife treatment for prostate cancer in April and May of 2019. After the second Cyberknife treatment on a Friday, I went into urinary retention and could not pee more than a few drops until my bladder felt like it was about to burst on Saturday evening. I went to the emergency room and they drained 2 litres of urine from my bladder. I never had a problem, other that flow was a little slow before getting on this cancer treatment treadmill. Since completing Cyberknife, my PSA went from over 10 to 2.9, however, I have failed 3 voiding trials in the last three months in spite of taking a twice daily dose of Flowmax (tamsulosin). Facing an additional surgery to attain urination, I am wishing I had done nothing about my so-called needed cancer treatment.
I wore a leg bag for the first month with the subsequent discomfort, limitations, and accidents. I discovered using a valve in place of a leg bag through personal online research. No one in the E.R. or my urologists office told me about a valve option!
NOW FOR THE IMPORTANT QUESTION: Each time I get a new catheter with my voiding trials, I get a new urinary tract infection. I have had 3 rounds of antibiotics which clears the infection, get a catheter change and voiding trial at the Urologists office, then a new UTI the following week. When I complained last week, the Urologists nurse said I was getting recurrent UTI’s because of wearing a valve instead of a leg bag. She told me to ditch the valve and use a leg bag. THIS MAKES NO SENSE to me whatsoever. I use an overnight bag on the side of the bed overnight, so my bladder is completely drained during the night, but my bladder retains its expanding/contracting function during the day.
Is my urology nurse correct about the leg bag vs. catheter valve? Are you more likely to get a UTI using a valve instead of a bag? I do not believe her. -I am looking into getting a HoLEP procedure done to permanently get rid of this catheter and restore urination. I HAVE GROWN TO HATE THIS CATHETER, AND WISH I HAD NOT LISTENED TO MY UROLOGIST and done nothing. -We men would do well to remember that cancer treatment is a lucrative business when making treatment decisions which may have irreversible consequences. With a UTI, it feels like sitting on a 3″ thorn every time I sit down. My current urologist says I cannot have surgery since I have had Cyberknife radiation. Does anyone have any opinion or tips on my situation?
Hi Byron. — Surprised that no one seems to have replied to your quedtion. Perhaps look here:
Urinary Retention: Catheter Drainage Bag or Catheter Valve?
Search domain http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4789885/https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4789885/
Feb 10, 2016. This supports the growing opinion and our observations that a catheter valve is more successful than a catheter leg bag when patients present with retention of urine. The occurrence of an infection is much greater in the leg bag group with 43% of patients ending up with a UTI as opposed to only one (17%) patient in group of patients with a catheter valve.
Best,
Vince
My husband has had a Foley catheter for over a year and rather than self cath he has opted for Supra Pubic. He uses the valve as soon as he gets up and only uses the large drainage bag at night. Thanks to you Ken I found your blog and immediately found and ordered valves. He has never used a leg bag since. My question is, he wants to use valve with Supra pubic, Any ideas on how to secure the Supra catheter in place?
I only ever had a suprapubic catheter and used a valve just fine. But I did hold the tube in place using a Grip-Lok. find out more about that here: https://livingwithacatheter.com/grip-lok-large-foley-catheter-securement-device-sales-page/. I hope that helps!
Ken,
Awhile back, I ran across the following article during some of my research. Being a cost-conscience, inquisitive, non-medical engineer, I decided to experiment with the method listed under [3.] below with my 500 ml McKesson leg bags. I used 3 oz of the bleach by itself and agitated (sloshed) it back and forth for a minute or two, thoroughly rinsed that out with tap-water, and added 10 oz of boiled tap water which was allowed to cool then mixed with 5 oz of pure white vinegar and laid the bag in a small container. A day before I’m ready to change bags, which is weekly, I drain out the water/vinegar solution and hang the bag up to dry out. I find this also eliminates the urine smell which permeates through the bag in addition to what the authors claim. Before I put on the cleaned bag, I use a small syringe to put 1 teaspoon of peppermint essential oil into the bag followed by 3 oz of pure white vinegar. Good to go for another week! The only problem (not really a problem) is that I have to keep some peppermint candy on hand for the grand-kids my wife baby-sits, so it’s all good.
The following is the article from the experts:
“Cleaning the Urinary Drainage Bag
The questions frequently asked regarding urinary drainage bags are “How long can I use one urinary drainage bag safely,” and “How do I really clean the urinary drainage bag?” The goal of keeping the urinary drainage bag clean is to prevent urinary infections. In an ideal world, one would change the urinary drainage bag out to a new bag every day. The cost of a new bag daily would be quite expensive.
[1.] Household bleach has been used with success to clean urinary drainage bags. One study used 180 cc’s (180 cc’s = 6 ounces) of one percent solution of bleach (one part bleach to 99 parts water) as a urinary bag soak for 30 minutes. The same bag was used for two to eight days with the daily bleach-water soak without bacterial growth.
[2.] A second study compared five types of soaks to prevent bacterial growth for urinary drainage bags. Plain tap water had no affect on bacterial growth, therefore, was not recommended. Acetic acid (0.25%) and hydrogen peroxide (3%) had only a mild affect on lowering bacterial growth. Sporicidin (1:16 solution) and bleach (0.06%) were shown to be most effective in immediate and complete killing of bacteria. Bleach was less expensive as compared to Sporicidin. These urinary bags were only used once and then the soaks were tested for effectiveness against bacterial growth.
[3.] A third study, both 2000cc (large night urinary bag size) and 500 cc (leg urinary bag size) urinary bags were rinsed twice with tap water following by soaking with 1:10 solution of 5.25% bleach (1/2 ounce Bleach and 5 ounces tap water). The bleach solution was agitated in the urinary bag for a ½ minute and then drained. The urinary bag was then allowed to air dry for 12 hours. After the first, second, third, and fourth week, the bags were rinsed with soy broth as the researchers attempted to growth bacteria from the urinary bags. Also, the persons with the urinary bags were tested for bacteria in their urine. Results of this study using bleach showed that 95.6% of leg bag cultures were considered acceptable for stopping bacterial growth. The effects of bleach rinses were effective also for weeks three and four of urinary bag use. It was noted that none of the bags leaked, 2 of 54 bags had separation of vent within the bag, and no odor was noticed over four weeks.
[4.] The fourth study compared the use of 50 cc’s (50 cc’s =two ounces with removing two teaspoons of solution) distilled white vinegar or 50 cc’s 3% hydrogen peroxide for cleaning urinary drainage bags. The vinegar or hydrogen peroxide was placed in the urinary drainage bag and gently mixed within the bag, then drained. The study involved 20 persons who had long term, indwelling urinary catheter use. The urine cultures done at 48 hours intervals showed that there was a significant decrease of bacteria in the urinary drainage bags irrigated with vinegar. Researchers considered vinegar not highly irritating, not bad smelling, not corrosive, not staining, and just actively killing bacteria. The researchers plan to repeat this study using more people in a second study to confirm results.
Conclusions: The use of diluted bleach or distilled white vinegar has been shown to be effective as cleaning agents for urinary drainage bags. The one study did show that the urinary bag could be used for a month with consistent cleaning with bleach solution. Note: Use care when diluting bleach with water, as bleach can irritate the skin and remove the color in clothing. Bleach fumes can also be irritating if a person breathes them directly.”
References
Dille, C.M. & Kirchhoff, K.T. (1993). Decontamination of vinyl urinary drainage bags with bleach. Rehabilitation Nursing, 18, 292-295.
Dille, C.M., Kirchhoff, K.T., Sullivan, J.J., & Larson, E. (1993). Increasing the wearing time of vinyl urinary drainage bags by decontamination with bleach. Arch Phys Med Rehabilitation, 74, 431-437.
Washington, E.A. (2001). Instillation of 3% hydrogen peroxide or distilled vinegar in urethral catheter drainage bag to decrease catheter-associated bacteria. Biological Research for Nursing, 3, 78-87.
Hi Ron. Thanks for your post. That is interesting. There is no clinical data (from valid studies) – a least there wasn’t the last time I did the research. If you are aware of conflicting data, I’d love to check that out) that shows that cleaning your bag with antimicrobials/bleach/detergent, etc. has any effect on frequency of UTI’s, which is usually the primary stated reason for doing it. Once you have an indwelling catheter, you are already “colonized” with bacteria (actually bacteriuria, which is bacgteria that are there bu have not invaded/infected your system). I had a catheter for 6 months and only ever rinsed my bags at night and in the morning when I changed them. Never once used soap or bleach, etc. And I never got a UTI (after the one I got in the first 2 weeks after first getting my catheter. So my experience is consistent with that.
Now I’m not saying NOT to do it. I like hedging my bets sometimes and never showered without a bag attached because I didn’t want to expose my bladder to any more of the open air than I had to. I felt it was better to keep the closed system as much as possible. And you seem to be getting other benfits from the cleaning, including the smell. So that is a good reason to keep doing what you’re doing.
Thanks again for your post!
Hi Ken, Thanks for your reply. Originally I asked one of my urologists how to get rid of the urine smell. He is also a professor at one of our local major universities and is on several advisory boards. He performs a lot of surgeries (one significant one so far on me) and teaches residents surgical procedures (including oncology) in the operating room. Classroom teaching is left to his underling associate professors. Anyway, he didn’t think there was any way to eliminate the smell Not being one to be discouraged by this, I began my research as to how to eliminate that urine smell which permeates thru the bag unless you invest in those expensive double-walled bags. I’m sure your readers know that if they can smell it, every one can smell it, and they are just being polite by not mentioning it. The article I mentioned was but one of many I found on the subject and espoused the additional benefit of some sanitation.
I’m 75 years old, an active electronic and mechanical engineer, enjoy manual labor to stay fit, have a Foley catheter, and have been on the leg bag for awhile. I use the McKesson #4601 bag which has an internal anti-re-flux valve which seems to work very well. When cleaning the bag with the solution in it, you can literally shake it back & forth very vigorously and not a drop comes out from the intake port of the bag.
I never wear the bag in the shower, and before attaching a clean bag I always, always use a Q-tip to apply a THIN coating of triple antibiotic ointment (e.g. Neosporin) to the outside diameter of the male connector on the bag. Then I use the other end of the Q-tip to swab out the inside diameter of the catheter female connector with 91% Isopropyl Alcohol which drys much quicker than the 70% Rubbing Alcohol. I know this may go against everything else but, knock on wood if you’re superstitious, but in any case, by the Grace Of God, it works for me. This may not be for everyone, but I wanted to pass it on as maybe being useful information to some readers. Just because it works for me doesn’t mean it’s good for anyone else.
I’ve read a lot of your posts about problems with push-pull valves and am acutely aware of the problems with Flip-Flo types, lever-operated types, etc., etc. I have found a small and compact reusable valve that’s based on a totally different concept and am working on a very simple device to interface the valve to the catheter. Originally, I was going to turn the design over to one of the catheter or bag manufacturers, but seeing the outrageous prices they would charge to sell it back to us, I decided to post the design publicly of how to make the simple part (or have them made if your not “handy” with a drill-press) with where to buy the valve for less than a dollar and where to get the material for making the part. I’ll be more than glad to send the info. to you when the documents are complete. Just trying to help out other folks like me who don’t want the burden of a bag. I’ll phone you when its ready so you can provide an email address which will accept technical drawings and photographs in color as “.pdf” documents.
All that I ask in return is for you, or one of your readers, to see if they can find a Foley type catheter which protrudes only a couple of inches from the penis, and could be totally enclosed (with the penis and valve) with some sort of “leak-proof” condom to circumvent the entry of bacteria which may be in a swimming pool. My urologist told me in no uncertain terms not to get in my pool even though it is meticulously maintained and water professionally tested weekly. I get (now “got”) 99% of my exercise from swimming!! Sorry ladies, but I don’t know how to help you on this one other than wearing a full-body wet-suit. But, the catheter valve alluded to above may work for you also.
Thanks Ron. I’ll look forward to that design. I know of no catheter that only comes out a few inches. That is likely due to 2 factors:
1. It has to be long enough to enter in and our of the penis as it goes erect and goes down, especially while you sleep. there has to be enough play for that. And
2. It has to be long enough to affix to a securement device attached to your leg. This is vital for preventing pulls if the back tube gets wrapped around something – a char arm in one of my biggest scares. Thanks goodness for he Grip Lok! But long bag tubes (like those for bedside bags) have been known to get caught up in wheel chair parts, etc.
Thanks again for all your info!
Thanks Ken,
If I could get an erection, I would call the local TV stations and newspapers immediately to come by as witnesses and to memorialize the miracle. Perhaps I can get my wife to monitor the situation whilst I’m asleep. Like my grandfather used to tell me when we were on the subject of erections – “Son, there’s nothing left but the bag it came in”.
O.K. on the length of the catheter. There’s got to be a way to enclose the “whole ball of wax”. Sounds like you may be alluding to another design project. May have to stick to the wet-suit idea until winter when I’ll have more time to ponder it. Although, I can’t hardly bear the thought of a wet-suit in 90+ degree heat unless I get the air tank & weights to go with it to stay near the bottom.
Have a good one!
Hello Ken
Firstly what a fantastic site you run & such a talented musician (reverbnation)
my nurse fitted a new catheter yesterday with a flip valve. The question/concern I have is that when I sat on the loo for a bowel movement I was really worried when urine started to flow out of my penis tip. The valve was in the closed position. Any thoughts on this please?
As further background for anyone else new to the joys of wearing a catheter read on about my setup:
I’m in UK and ended up in Accident & Emergency in March 2020 as a result of severe reaction after just 2 days after my doctor changed my blood pressure med; during my day in hospital their doctor asked if anyone had ever examined by tummy because she could tell it was distended & a scan revealed the bladder wasn’t emptying. Kidney function blood test also revealed acute kidney injury. Immediately (ie the next day ) after ceasing blood pressure meds my blood pressure normalised which I can prove by recording all measurements in a spreadsheet. You’re probably wondering why I mention this … well in case it helps anyone else. my assertion being that my enlarged prostate caused urine retention and that also affected kidney function that affected blood pressure. I wrote to my doctor informing him of my assertion because I’d been on blood pressure meds for 7 yrs – maybe needlessly – who knows! My blood pressure after 2 months of zero meds is still very good – 3 measures per session – 2 sessions each day for 7 days to allow an average of 42 measures to be calculated.
On discharge from A&E they gave me a little present to go home with – catheter. Like others report there is an absence of any information / literature provided to me on discharge about catheter do’s and dont’s – thus your site is a godsend. For 8 weeks I had be using: Coloplast Simpla leg bag and Bard night bag that hangs on a little plastic stand – in hospital I was told to get a ‘G-strap’ to secure the catheter to my upper leg which I did. Both bags are changed each week. This velcro strap is not easy to get the tightness correct and so I’ve also taken to using micropore tape to secure the catheter and upper tube of the leg bag. It was a chance conversation with our district nurse who told me about the flip valve which I’d never heard of before and so when my catheter was changed yesterday she provided one of these Coloplast catheter valves. This should be changed weekly. This has a serrated taper that connects to my indwelling catheter. Because of the question posed above I’ve disconnected the flip valve today but I will use it though as I’m keen not lose any bladder function prior to an op on the prostate which A&E instigated for me – when the UK NHS recovers after this dreadful Covid emergency.
thanks for you time & keep safe
Hi Keith, Thanks for your post! to answer your first question – yes. I do have some insight on the pee coming out of your penis when you have the valve on. I’m assuming you have a suprapubic catheter? Think of it like this. A bladder is not just a static bag sitting in your gut. It is constantly pushing/pumping. We learn as toddlers how to control our bladder. So normally, we have enough control to go about 4 hours or so before we have to empty it by peeing. When we “let go” of our control in order to pee, the urine doesn’t just dribble out right? It basically “shoots” out. That’s because we are allowing the pumping action of the bladder to do its thing and out comes the pee. When we have catheters in there, we never (most of the time) have that urger to pee. Why? Because the bladder is constantly emptying, pushing the pee out into the bag. It isn’t just gravity doing this. You can see this for yourself if you are changing from a day leg bag to a nighttime bedside bag. I used to hold the open tube up above my penis and pinch the end closed while I switched bags. But even then, urine starts to push through! If you just hold the catheter tip facing up and open in your hand, you’ll see the pee literally pump out. It doesn’t come out in a steady stream like a water faucet. It is almost like a heartbeat, a little will come out and then subside for about a second, then more will come out, and it will subside for a second, etc. etc.
OK. So now that I have that out of the way 😛 – When you have a valve instead of a bag, the pee doesn’t have anywhere to go, so it builds up in the bladder. And you are also controlling your bladder again. Pressure builds up in there and when you go to pee, you’re letting loose again like normal and allowing your bladder to pump stuff out. So unless you have a blockage in your urethra (stricture), I would be surprised if some pee DIDN’T come out the normal way in addition to from the valve. Before I ever had heard of a valve I sat to go #2 and was surprised to see pee coming out of my penis. It turned out that my catheter tube, which was a really narrow one at the time, had gotten twisted, and therefore was blocking the flow out the catheter. It had nowhere else to go except through the penis, even though I did have a stricture. I quickly untwisted the tube and things started flowing into the bag again.
One reason my doctor was mad when he found out I had started using a valve (a different doctor told me about it and actually gave me one!) was that he needed my to have “bladder rest.” With a bag, the bladder doesn’t have to push very hard. And it never fills up, so there is no stretching and buildup of pressure. With the valve, the bladder is working much harder, stretching as it fills and then emptying quickly. It sucked that one of my doctors said to do something different from my surgeon. they should have been communicating better. But it all turned out OK, since I only used that valve in the last week or two before my surgery. I’d been on bladder rest for 5 months prior to that.
I hope that helps!
Thanks so much Ken, that really set my mind at rest.
However in answer to your question my catheter tube is a Foley and comes out of my penis so not sure if that makes your response any different
I hope that you will allow me to ask any subsequent questions as I’m so new to this
I’ll answer what I can, Keith. It might sometimes take a few days though. Hmm, I’ve not experienced the pee coming out when I had a standard urethral catheter. But I’ve heard of others having this. I can’t say with any authority, (and of course you know I’m not a medical professional), but it seems to me that the balloon might not be blocking the opening to the bladder neck completely. That is what usually keeps the pee from coming out around the tube. That is my best guess – that somehow the balloon is not covering the opening. But with a valve, there would be pressure in the bladder pushing out, so it might just have JUST enough space around the balloon to escape.
One other thing is the thickness of the catheter tube. I had quite thick one – the thickest I think (10 Fr). So if yours is thinner, that could cause it too. I found this description on a Google search – “The most common sizes are 10 F (3.3mm) to 28 F (9.3mm). The clinician selects a size large enough to allow free flow of urine, and large enough to control leakage of urine around the catheter. A larger size is necessary when the urine is thick, bloody, or contains large amounts of sediment.” So the say “control” leakage around it. Not “prevent.” So I don’t think it is something to really worry too much about, especially if your doctor says the same thing.
Thanks so much Ken for taking the trouble to respond, your knowledge is a godsend.
So glad I can be of some little help!
Since my last change of my catheter valve I experience discomfort with my penis. There is constant pressure when I walk or sit down. Also, when I want to sleep at night. What is the cause of this discomfort?
Sorry for the delay in replying. the discomfort could be many things. If it hurts at the tip, that could be that it is secured to your leg (hope you are doing that) too tightly and pulling to the side or up. If it hurts along the entire length, it could still be that, but also the thickness of the tube might be thicker than you are used to. That might be checking. You might want to ask your doctor though, to be sure of any of this. Hope it feels better soon!
Thank you for your response though it is a little late.
Well that is most interesting and I will certainly discuss it with my doctor. As a matter of interest, since that article was written in April 2013 do you know if the Duette ever took off and became recognized as a better alternative to the Foley.
Many thanks and kind regards,
I came across a suggested programme for transferring to a valve from a bag. In it they suggested that when starting, instead of abandoning the bag altogether, one should insert a valve between the catheter and the bag. The drift seemed to be that one would shut off the valve (they suggested for the first three days 30mins three times a day getting progressively longer and more frequent) and after each shut off open the valve and revert back to the bag until the next thirty minute shut off. Have you ever come across such a bag arrangement? It seems to me that it would have to be professionally put together as the bag tube which normally goes into the cath will not fit the end of a valve.
Kindest regards,
Michael, I agree with you about that last part. The outlet of these valves (the ones I’ve been talking about anyway) are not intended to to have tubes attached to the outlets, and the openings are quite large. It would take some doing to figure out how to put a valve in-line with your bag. It’s not a bad idea. But as much trouble as you are having getting even the most basic supplies where you are, I would think it wouldn’t be worth it to try. If I were you, I’d just remove the bag and stick the valve in at, say, late morning after breakfast. Then wear it for a couple of hours. Then change back to then bag after 4-6 visits to the toilet (probably having the urge every 30 minutes or so at first). Then maybe try again in the later afternoon before dinner. You could try to extend the time between visits to the toilet over time, as well as how long your actually wear the valve. Good luck!
Indeed I would have no chance of getting such a thing locally but it does seem quite a good idea although, if Bard or Hollister have not thought of it, there must be a reason. They are not stupid. Is there any trick when wearing shorts. Of course if one can manage with a valve then OK, but if one needs a bag is there any cunning way around.
Did the Duette ever fly. If not seems a pity as the Foley does seem to cause damage.
Best wishes,
Michael
Your silence indicates that, with very good reason, you are rather bored with my ramblings. I certainly do not blame you and will entirely understand if you tell me to now go and paddle my own canoe. But I have just had a meeting with a urologist in Hong Kong who was talking about the merits of a suprapubic (it sounded rather too easy to me). He said that with a supra one can, if one wishes, block it and then just pee as normal via the penis. In other words have the supra as a safety device if normal peeing was not working. He said that a catheter in the penis for a long time will degrade the tip of the penis. Does any of that resonate with you.
Apologies again for bothering you.
Kind regards,
Michael
Hi Michael,
Of course I’m not bored with your ramblings. I thought I’d seen all your questions. My apologies. Anyway, that doctor is totally correct. I had the SP and though it was more invasive to place it, once it was in, it was WAY better than having the transurethral (the kind you have). And I forgot about the intentional blocking of it so you can pee normally, because I was under orders not to pee normally in order to keep my stricture isolated (no pee being forced across it). So the answer is yes! If you have the opportunity to get one, do it.
Hope that helps!
Ken
Thank you very much, as I said before, you are most tolerant. That is very interesting and huge food for thought. The doctor said that with the SP swimming was no longer on the agenda but this is not a big deal. He said that showers were no issue although a new dressing needed to go on the wound after each shower. Does the wound stay raw or does it heal up completely. One often reads reference to SP’s coming out and the need for a replacement within hours otherwise the hole closes. Do SP’s have a prevalence for coming out. If this happened and it was not possible to get the SP organized in time, could a transurethral be put in as a temporary measure pending getting the SP redone. I like to take daily cardio exercise (quite vigorous for twenty minutes) would the SP be in anyway limiting. The whole thing is so new to me and, I suppose, extreme, I find it quite difficult getting my head around it.
So many thanks and kindest regards, Michael
PS One thing I was asking if there is a cunning way for a bag with short trousers, where the leg bag is not possible. I currently have a mickey mouse arrangement on my hip, but I imagine there is something more regular but of which I am not aware.
Michael – took showers all the time but I used a bit of caution there. This isn’t supported by clinical evidience that I know of, bu the 2nd week I had the SP cath and took showers with it just dangling open (which is what my doctor said I could do), I got a UTI. And one of the bacteria involved was Pseudomonas, which is often found in water. So even though I couldn’t find the science behind it, I decided not to risk it anymore and I just showered with my bedside bag attached. That way, no splashed water from the shower could get up into my bladder. Yes, we are already colonized, so it shouldn’t matter. But I figured I’d hedge my bets on that one, especially since it was no big deal to do it. Just let the bag rest on the floor of the shower and dry it off when I was done. And yes, you change the dressing after every shower. I used a Q-tip with alcohol to rub away the dried yuck that gets around the hole. After that, what I did was get little cotton square bandages (about 2 inches in diameter), fold one in half and cut a slit half way through on the 2 open sides. See this pic: https://screencast.com/t/tCcp5P1I. The pic shows a 4×4 gauze square. I used a 2×2. Then you will want to tape the tube to your belly and secure the end to the top of your leg with something like the GripLok stickers. The wound does stay open (sort of). You get to the point where it’s almost like a body piercing, but since it leads through muscle and into your bladder, it won’t heal up like a piercing. And you have to have it changed every month. The first two times they did mine, it was quite painful because they “dropped a guidewire” through the hole after removing the tube to prevent it healing up, which they say can happen very quickly. But the freakin’ wire caused my bladder to spasm. Not fun. The 3rd time it was changed, a nurse did it and pulled the tube out and just left it. I asked, isn’t that in danger of healing up. He said, oh it’s fine for several minutes at this point (3 months of having the tube in). So no wire was needed. He just grabbed the new one and pushed it in gently. And it did not hurt!! Lovely. I wonder if they could have done that for the first 2 changes. I don’t know. About the exercise – you should be very careful not to catch or pull the tube. It could be pretty awful to yank that thing through your gut. Jogging of biking should be fine, especially if you cap it off and don’t use a bag. That is also the answer to your 2nd question. if you have an SP tube and want to wear shorts, just cap it off with a valve and use that to “pee” when you have to. Of if you can pee normally, do that. IT would be hard to conceal a leg bag with shorts on, but not impossible. You’d just have to wear long shorts, I guess:).
Good luck!
Ken
My replies seem to have jumped backwards. I sent a reply yesterday and thought it was lost. So I sent another reply today. But they seem to have become sandwiched between 3rd and 5th of November. I hope you see them.
I have just discovered your reply of yesterday. It had also jumped backwards like mine. So mine of today is really just a repeat.
You refer to my peeing problem and I am not surprised you are confused. I think it is a mental blockage. How it has arisen I am not sure but (in case this might explain a little) I have always had a problem peeing, for example, in a public loo with people all around me. This somehow developed (it crept up on me early this year without me noticing) and suddenly I could not pee at night. This led to panic and so it rolled on. I was on an aeroplane for five hours and could not pee. Immediately I got off the plane I peed immediately. This was leading me to being almost unable to eat as I thought all day about the horror of the night ahead and being unable to pee. I have had every examination under the sun and they say there is nothing wrong. In September I finally gave up and had the cath inserted. But, it strikes me, that if I had the SP and therefore new I could always use the cath if necessary (like an escape route), then I might just pee normally as I would be completely relaxed about it. Does that make any sense.
Best wishes,
Michael
Hi Michael. Yes, I do understand what you’re saying. And you are correct about the fact that if you had an SP and you capped it off, your bladder would fill with urine and you’d get the urge to go. And if all is well, you optimally should be able to go the normal way. But if that’s still a problem, then yes. You’d be able to open the valve and release the urine that way.
Ken
Hi Ken, that is so helpful. I have to say, listening to all your input, I am scared stiff at the idea of having an SP changed. It seems it is not for the faint hearted and faint hearted I certainly am. I do not like having the trans changed – like I had this morning – but the SP sounds like a real challenge.
I am actually now in Hong Kong where I had the cath changed. The doctor (new to me) was waxing lyrical about never using any bag twice. He said that if you change from a night bag to, say, a leg bag when you get up, the leg bag must be new and the next night bag must be new again and so it goes on. This sounds like 700 bags a year which I find hard to get my head around. I am much more inclined to be guided by your message 1st November which is workable.
I am so hoping that the valve idea works as that would help enormously.
Kindest regards,
Michael
Michael, far be it from me to claim to know better than a doctor, and keeping in mind I am NOT one – what he told you about the bags is NONSENSE! It is recommended to change out bags every 2 weeks or so – though I usually used the same bed bag for closer to 4 weeks. I did change out the leg bag every 2 weeks or so. And like I said, I only ever got the one UTI, and that was 2 weeks after I had the SP tube installed the first time.
Also you should know that the doctors were surprised that my bladder spasmed like it did when they dropped the guide wire in. So it probably isn’t typical. Also, by the 3rd change, they didn’t need the guide wire any longer because enough healing/scarring had happened around the opening that there was less danger of it closing up in less than 10-20 minutes after the cath was removed. That 3rd change was not painful at all.
I hope that helps.
Ken
Ken I am so glad to hear you say this as, while doctors can be great, there is a cynical side of me which questions some things they say. I only went to this particular doctor (I never met him before) to have my cath changed and he launched into this subject. I don’t know what motivated him other than to make me scared (he was not very user friendly).
I am really interested in the SP because my trans is frankly hell. It is so uncomfortable/sore that walking is torture. Does a trans have to be such a nightmare or should it be possible for it to be perfectly comfortable. I am now on my third and this one is worse than the previous two. The previous two were at least comfortable if I was not moving but this one hurts all the time.
As far as changing the SP is concerned my problem is that in my remote location this could be a bridge too far for the medics there. That said they were brilliant at putting in the trans (better than this fancy doc in Hong Kong yesterday). I will have to ask when I get back next week.
From what you say it seems the critical part, or not, is having everything ready to put the new cath in within milliseconds of taking the old one out. But if I read you correctly, on the first and second occasions a guide wire is a must, yikes!
If my trans cath was comfortable the wimp side of me would likely plump to stay with it, but it is most certainly not. Was the second SP change as bad as the first. Were you able to shower right away after having had the cath put in the first time, it would be hugely complicated if not.
So many stupid questions, but the whole subject occupies my mind 24/7.
Best wishes and continued appreciation of your immense understanding.
Michael
I don’t think an SP change needs to be in milliseconds. But they are really super cautious to be absolutely certain it doesn’t close up because that means another invasive insertion. And like I said, I don’t think it is common for the bladder to spasm like that when putting in the guide wire. And though it wasn’t pleasant, the 2nd change was not as bad as the first. Even so, if you have to live your life with a catheter, then I think the SP is the way to go. The trans is very uncomfortable, yes. One thing to make sure of to maybe help with the discomfort of the trans is to allow enough slack in the tube so that when you move, sit, stand, etc. it doesn’t pull on the penis. Having the secure sticker on the leg helps with this. The ones that only use stretchy fabric with a velcro fastener are NOT good, in my experience, it you have a bag (which will pull down more and more as it gets heavy), and you are ambulatory. It slides down your leg too easily. That’s why I was so insistent on getting a supply of the GRIP-LOK stickers.
Good luck.
Ken
A message I just sent you seems to have jumped back to 5th November so you would need to scroll back to see it.
To clarify my message I just sent comes after my message of 20/11 followed by another of mine of 24/11 (which themselves had jumped back) followed by mine of 5/11 and 6/11 and your message of 6/11. I do not know why this happens.
My reply has jumped back again to 5th November to join your reply which had also jumped back. Sorry for the hassle.
Ken I just tried to order a pack of Grip-Loks from the site to which you referred me, but I do not have a Pay Pal account. I want to use a MasterCard but not sure how to proceed.
Michael, you don’t need a PayPal account if you have a MasterCard. PayPal will accept your card without an account. Did you try that?
Ken
OK I will try that, I do have a different billing address to the delivery address this sometimes causes complications. As for re-use I presume they cannot be taken off and reaffixed, say before/after a shower. You just leave them on and see how long they last i.e. three/four days with luck.
Best wishes,
Michael
Well it seems to have worked. I have arranged delivery in London where I will be in two weeks time. They did not ask for a billing address which does often happen.
Best wishes,
Michael
Hi Ken – I was in the local hospital a few days ago and I asked the urologist if they had any patients with SP caths. He was almost surprised by my question and said many. He was very enthusiastic and wanted to fit one in me almost there and then (unlike the HK doctor this is a government hospital with no financial reward for any individual). I touched on the changing issue saying I understood it was tricky. All he said was it is easier than a trans (and I have to say they have been brilliant at changing the trans for me, better than my experience in London). I was not wholly convinced but what is very clear is that, contrary to what I thought, they are definitely familiar with SP’s and, most probably could manage the changes.
As I explained the main problem I have with the trans is the discomfort caused when I walk by the movement of the cath in my penis. I am looking forward to trying the griplock as this may well improve things. However, if not, my question is with an SP does movement i.e walking/gentle jogging cause the cath to move in your tummy wall and cause the same type of discomfort as the trans moving in the penis. I guess the penis is the most sensitive part of ones body but I just wondered if nerve ends in the tummy wall might also be ultra sensitive.
I leave here tomorrow for London so will be able to try the griplocks at the end of the week.
Beast wishes,
Michael
Hi Michael,
Sorry for the delay. I would definitely say the nerve endings in the penis are much more sensitive than in those in the the bladder. How do you like the GripLoks?
Merry Christmas!
Ken