Bob … I am so sorry you are having such a terrible time with “urological issues.” You really shouldn’t be having leakage problems with your Foley. Surely your doctor can determine the cause and get some resolution for you. Also, having been plagued with serial UTIs, I asked my urologist for a daily low dose antibiotic. He prescribed Cephalexin 250 mg. … haven’t had a UTI since! Yay. I also have a stent in my left ureter. It has been “exchanged” once and is scheduled to be done again mid-May.
Although I have had a successful TURP, I am still not completely emptying my bladder although I seem to pee perfectly fine. So, my urologist has me self-catheterizing twice a day. It’s no big deal, but I do go through 60 catheters a month 😲
My stent is being exchanged on March 11. I get burning pain in penis . Awful! My penis has shrunk to the point that sitting down causes scrotum to push urine from penis past cath. So I have to sit down very carefully. I go through one pad per hour.
Don’t know if this would be a possibility or not for you, but I did Self-Catheterization (Clean Intermittent Catheterization) for about a year. Single use catheters which you insert into bladder when you need to pee. It worked without any major problems for me and I did it about 6 times per day for a long time.
It feels a bit weird, but it it’s not painful. There are pocket size packages available so easy to bring when going anywhere.
I, too, use singles, now for 5 months. Did you stop using them? Did your bladder recover? Is that why you stopped using them? Some respondents told me that their bladders did recover, so far, not the case!
I had part of my bladder removed before radiation, and the operation caused bladder issues where I couldn´t pee at all, I so had to do Self-Catheterization. After about a year I had trainer my bladder so I could pee like normal again, and no longer needed the catheters.
The catheters were pre-lubed in single use packages. I got boxes of them sent to me through the health care system (I’m in Sweden).
Just a little more info. Did you “train” your bladder? If yes, how did you do that? I had stricture surgery ( 3rd time) and after that my bladder stopped operating without a clue what happened, perhaps from radiation ? Some think my bladder was traumatized and would eventually recover.
After the bladder surgery I couldn't pee one drip without a catheter. After some times (months) I could pee a little by myself.
I ”trained” the bladder by not to trying to "push" urine out, but to simply relax when peeing and let the bladder do the actual work. My urologist told me it isn't that great to "help" the bladder by pushing, because that will make the bladder weaker after a while.
Each time I needed to pee I tried to pee as much as possible without a catheter, and then I used a catheter to empty the bladder afterwards.
After a few months further, I could almost empty my bladder by myself and started to use a catheter only a few times per day (to empty the bladder fully, not to catch a urinary tract infection). When I noticed I could empty my bladder completely, I stopped using the catheters.
Really good info. Did you drink much water( let’s say 8 8oz of water daily.) which I was doing before the surgery, but the UR advised to not “ stress” the bladder. Ironically, the UR gave me no advice on “ pushing,” more just “hoping” it would recover. The odd thing was that I could pee prior to the stricture surgery, then not when I came out. Maybe a coincidence? Who knows!
I’ve always been drinking fairly much water - a guesstimate is about 70-100 oz per day. I don’t remember if they said anything about that, but I was told you ideally shouldn’t keep more than 17 oz in your bladder, since that will strech the bladder making it weaker. I actually peed in a measuring cup and kept scores for months to see if I was making any progress…
I had no problems peeing before my bladder surgery either. I had an indwelling catheter for two weeks after the surgery and when they removed it I couldn’t pee one drip (I had about 150 oz in my bladder when I returned to the hospital). They put in another indwelling catheter and then we waited another two weeks, but the result were the same. I couldn’t pee at all.
My doctor then wanted to put in a suprapubic catheter through my stomach, but I asked for self-catheterization instead since I figured that would enable me to have a chance to train my bladder back to a normal state (which it did).
This was all before my radiation treatment was to start, and the radiologists were against me doing self-catheterization since they were afraid the radiation would make my prostate swell making it impossible to insert a catheter. I promised to rush to the ER if that would happen (never did, but was close a few times).
My problem peeing was because of trauma to the bladder due to the surgery. As my bladder was healing and I kept “training” to pee and also made sure I ideally didn’t hold more than 17 oz in the bladder - I slowly made progress. After maybe 6-7 months I could pee fairly good by myself, but used a catheter 2-3 times per day to empty the bladder fully. After about a year I could pee like normal and empty the bladder and I haven’t used a catheter since (about 1,5 years ago now).
Since your problems also seem to be from bladder trauma, perhaps yours will heal and get back to normal as well in time. I really hope so.
My bladder empties well with the foley . Unfortunately part of the pee ends up in the multiple pads I use daily! I’d be happy using foleys if I could stop the leaking!
Same ugly result my husband experiences. After 2 years of Foley, the "nurses" who change it out 1/month, indicate the urethra has been dilated so the leakage occurs but to go up another step in diameter (he's already at 20) will likely cause more problems. My husband is 80 and has been stuck with this insufferable situation. Glad to still be alive.
I’ve taken various ones including pills, home IV and home infusions depending on the types and severity of infections. I’ve also had the infections attack my right kidney and I’ve had osteomyelitis of pubic bone. I have a stent in my right ureter to keep it open. And I have stage III kidney disease.
Bob, my continence was completely shot despite Kegals and intensive Pilates. so before my AUS I relied on condom catheters and a leg bag. These totally worked. Even for long haul international flights of 16 hrs (yes I'm in Oz) and also skiing. never had a fail. Only downside was the condom adhesive could be too sticky - you can source cleaning wipes to fix this.
As to the AUS, my Uro was paranoid about sepsis and had an entire 7 day protocol to follow pre-op. Find a paranoid Uro and try again as my AUS is going on 8 years and still reliable despite being a cyclist, hiker and skier.
You shouldn't be getting UTIs from the catheter. Something else is wrong. I had frequent UTIs under control with methenamine but that stopped working and I have a recurring one that hopefully the urologist can figure out.
The main reason for writing is about the external catheter. I have frequency and urgency which I can generally deal with when at home but when I go to town I can rarely make it to the bathroom after getting up from the car seat. I carry a seal able bottle that I use as a urinal but have found a condom or external catheter to be helpful. I have fitted the cath with a tube and shut off valve instead of using a bag. If it is raining or likely to or if I can get to an area with vegetation, I pee there. Otherwise I drain into the urinal. If you set it up this way you have options but it is best to insert a wye so there is a vent for the urine to flow easily and quickly when you need it to. Once I forgot to open the valve and the pee went out the vent which was not fun. I have the vent so that it is significantly above the arm of the tee which leads to the drain but if the valve is closed it will still go out the vent.
A few more things. The coban that might come with the caths is not very reliable and can allow the cath to slip off. Tape is better but be sure to shave your penis and around it. Real fun peeling off the tape if stuck to hair. An re size: My dick has shrunk so much from ADT that I thought I needed a small size. I think it was actually called medium. There may be sizing suggestions. Do not get one too small as it is a real bitch to put on. They do stretch a lot but using two hands to stretch the condom and get your dick in can be a real challenge. A third hand is helpful if one is available
not a bad idea but if i peed hard enough it would blow the condom off and make a mess anyway i could put in a pressure relief valve in case i left the valve closed but it would have to be carefully adjusted to open at less than the condom blow off pressure.
sorry for the rambling letter that follows. just kept thinking of things to add in no particular order but my final suggestion is asking about a supra pubic catheter. it is my absolute last resort after trying everything else but your case is quite different.
my urologist has been trying to get me to get a supra pubic catheter which is similar to a foley going through your stomach wall instead of through your dick. he said they are easy to maintain but do need a visit for cleaning and reinsertion which would be a bitch since he is a 4 hour drive away. he said they are not know for causing UTIs which was my concern since i kept getting them. he also said that with reasonable precaution self cathing also does not cause UTIs. I never asked specifically about a foley . It sounds like you have other issues, they should not leak. Maybe that or something that is causing the leakage (or maybe it is a symptom of the UTI) is causing the UTIs.
It sounds like you are beyond methanamine. It worked for me for a couple of years free of UTIs but they are back now and recurring. However for me it might just be the wrong choice of antibiotic. The last treatment with ceflex seems to be holding?
Supposedly it is important to completely void you bladder but the foley certainly should do that and better than intermittent caths and certainly better than an external. But if the Foley is causing irritation and inflammation with your weakened system maybe trying intermittent might make sense or the external but I doubt that external is the answer since there is no assurance of completely voiding your bladder. They are really just for convenience.
I have had a foley a few times and absolutely hated it. Could not wait to get it out. Urologist said over and over that it was time for a supra pubic. Might be for you, Ask your urologist.
I did and he emphatically said no way since my bladder is such a mess he couldn’t guarantee that the catheter path would stay in one place which would screw up my bladder even more. Plus my bladder has shrunk . I’m a hot mess.
And i thought my bladder was a mess. Can you pee without a catheter? You were interested in an external catheter so I would think you can? Have you asked about self cath? I absolutely hated the Foley I had bladder spasms all the time. If you have bladder spasms it might be good to know that they are "voluntary" You can control them although I never got really good at it. Some sort of professional help might work but mine were not permanent so I just lived with the spasms that I could not control. Spasms are your reaction to thinking your bladder is full because the bulb is pressing on the walls. So you can relax and inhibit spasms to a degree. I would think that professional help with relaxation exercises might help? Hope this is all useless information and that you do not have spasms.
My father used a condom catheter for 30 years following a vehicular accident leaving him a paraplegic. Except the occasional UTI, he tolerated the cc well. To control the UTI’s, he took daily nitrofurantoin which kept them at bay.
Sadly I have been 100% incontinent sine a F'up by the head of the adult GUI clinic at Moffitt cancer in Tampa. What I have learned to rely on and has given me back some form of freedom.. Is the external device called the Men's Liberty device manufactured here in Largo Florida. Google it and you can see if it will work for you. Good Luck
I used condom catheter recently while recovering from pneumonia. I found it very comfortable both to install and use. It is literally a condom, so no insertion is necessary. Otherwise it worked as well as as the foley.
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