In order to make this easier, I ordered some supplies from Amazon, and a device from an independent guy. The largest challenge is finding a way to strap the damned bag to my leg. The bags come with cheap elastic straps that are fine until the bag starts filling up and getting some weight to it...then each step makes it slide down a little...then it tugs on the tube. There are a few products out there that look like they'll help. This is the Catheter Caddy, sold by the designer: The bag sits in a pouch that hangs from straps. Loops in the straps are run through a belt, so the weight of the bag is borne by the belt. Obviously, this is worn under your slacks. There's a competitor out there that is about twice the price, but I did not compare delivered costs. The Catheter Caddy guy charged $25 for "shipping," and you don't find out until you Check Out. bastard Here's the other option, which seemed to be heavier and more "utilitarian." The holder for the second bag is an extra-cost option. The bags are held by clips at the top, which seems to be less secure than sitting in a pouch. I got this from Amazon to try out. It addresses the same problem: It looks like it might be more comfortable than the belts & hangers, but it all depends on how it fits, how strong the elastic is, and what I'm wearing. I bought some leg sleeves that address the same issue. These go around your leg like an ACE bandage and have a pouch for the bag in the front: Reviews regarding the life of the elastic are mixed. If this works, and it's the least bulky solution, I'm sure I'll figure something out. I bought 2 sizes of these catheter retaining straps. One goes around your leg and the other goes around your waist. Then you secure the catheter with that clip so that it does not get snagged, tugged on or pulled out. I'm kinda concerned about that happening with the suprapubic catheter, because I've heard that they can pull out. Lastly, I bought some shut-off valves for the end of the catheter. Some folks use their bladders as the storage bag (as God intended) and then empty it through the catheter tube, regardless of which type catheter is installed. This make that job easier. If I self-catheterized, the process is to pee out what you can the regular way, and then cath the rest. This will be the functional equivalent...I can still go the regular way as best I can, and use the catheter to finish up. To my way of thinking, this will prevent the pelvic floor muscles from completely atrophying. As I'm typing this stuff & posting the pics, I'm half freaking out and half looking forward to the relief. When I bought this place and was making routine 2 hour drives, this problem became quite apparent. I would pee before leaving home, make 2 stops along the way, and then barely make it to the place to go again. I don't know why I did not have this looked at before, other than assuming "normal aging guy stuff" mixed in with some denial. I wish this had taken a different path--assuming one was even available--but perhaps it's gonna be fixed soon. And it isn't the worse health issue I could have. This is an inconvenience (albeit a pretty significant one) and a tube hanging out of me as a forever reminder, but it's not a chronic or debilitating condition. And I'll say what we're all probably thinking: I could be like that jilted female astronaut and make the longest non-stop road trip in the world. They sell some large overnight collection bags that hold more than I go in a 24 hour period. But seriously, this has the potential to free me up in ways that are hard to explain.
Next I gotta find a supplier of catheter bags. I don't understand why Amazon merchants only sell in singles or 5 paks. Some places say to wash them in between use and discard after a month while others say to use once & toss. Internet searches for "bulk catheter bags" finds nothing. I'll keep trying. eta: Well, I just found bulk bags. Amazon price is $4 each, there guys are under $1.25, but I can't tell if they're single-use bags. I'll call them tomorrow.
John, Don, No offense taken..... In normal circumstances i would not dialogue on this topic since its a gender issue and lack of knowledge on my part. But i can relate to what you are going through as i have been there for a small duration, post epidural. I know i have not been on the forum for a while and came out of the blue with my recommendations. My way of thinking is sometimes spontaneous and can get me in deep sh...at times.
Shoot. You dialogue on anything you wish. And have you read my stuff????? I'm the last person here that anyone should apologize to for--uh--"spontaneity." Regarding the gender thing: a woman put a perfectly reasonable brand-new option on the table, and [maybe predictably] look at what the guys did with it. 'Nuff said. Your way of thinking on this is better than I've received from "professional" doctors who have an assembly-line mentality and who get upset with me for climbing off of it¹. Your "gender-outsider" viewpoint put something on my radar screen that I blindly accepted did not exist...as told by 3 different urology practices. Maybe it is possible that detrusor muscles cannot be regained once lost (lots of design/structural reasons for this in men and in women), but info on this specific condition is hard to find. Everything centers around either the loss of the pelvic floor muscles (Kegal exercises) or on overactive detrusor muscles (the spasms that cause the leakage you see on the annoying "overactive bladder" commercials.) Even searching now, the only two websites that come up either no longer exist or they seem to be "riskware" traps. But you have me thinking about PT as a potential remedy. If I had seen that resource you cited before I completely lost the ability to urinate and was wearing a catheter, I would have sought it out locally/regionally, and I would have contacted the JAX folks for advice, even if I had to pay for remote guidance (they offer such a TeleMed service.) At this stage, it's on my going-forward path. Recovery from the spura-pubic catheter surgery is short (a one day thing.) I'm going to line up something PT related for afterwards...there is absolutely nothing to lose. Any improvement is incremental relief. ¹I gotta chuck in a rant about urologists and the universal need to be your own advocate. When I completely lost the ability to urinate, my doctor said "It isn't prostate cancer because your PSA is low." So that got me thinking about cancer. But when I read about this subject, I find industry articles voicing frustration with the claim that urinary issues can be/usually are an indicator of prostate cancer. Such is not the case (according to what I read.) "Despite no evidence of a link between urinary symptoms and prostate cancer, national guidelines, health advice and public health campaigns continue to promote this link." Great, huh? The concern is that men will not seek out PSA testing because they have been told that prostate cancer presents with symptoms, when it most often does not in the early stages, and even later it rarely affects urination behaviour. That being said, my low PSA levels were as of last November, so I don't know how meaningful that is today, and at this point I cannot get them tested. I've long known that they take blood for the PSA test before they give the finger exam because agitating the prostate causes PSA levels to elevate. I was concerned that having a catheter might do the same thing, and several articles discuss skyrocketing PSA levels while men are catheterized...the cause is unknown, but the difference is dramatic. One last thing, along the "gender differences" line...all of this serves me right for blathering about being "the low maintenance model."
Depends on what is considered skyrocketing PSA, @John Brunner. The problem range is between 4.0 and 10.0. Would you consider a PSA of 4.0 to be skyrocketing? A PSA over 10.0 is considered by most to be an indicator of cancer. Between 4 and 10 is always debatable and can be considered normal in men 70 and older. A "free" PSA is done on patients whose total PSA is in the questionable range, and judgement is made based on the ration of the free to the total PSA. As you have said, no test is fool proof, so total reliance on the PSA is not a good practice. That is why the DRE is still performed. I guess a urethral catheter could cause an elevated PSA, but I have never heard of it being referenced. The DRE and even sexual activity can elevate it somewhat.
I've read of some prostate cancers that are accompanied by low PSAs. Those tend to be aggressive and deadly...or so I've read. Regarding caths & PSA... Article 1: Conclusions: Inserting a urethral catheter and maintaining it for several days does not result in any clinically or statistically significant change in PSA levels. PSA values obtained in patients with an indwelling catheter are reliable and independent of its presence. Article 2: Conclusion: Indwelling catheter in-patients with BPH who underwent urinary retention did cause a significant elevation of PSA serum levels in those patients having an elevated PSA at baseline and did not change significantly in those with normal baseline levels. Maybe I misinterpreted things relative to my situation. Regarding DREs: Mine is a little different to gauge because I have calcium deposits. And my prior long-term doctor has always said that my prostate "feels murky." Dunno what that means. But it was the calcium deposits that caused UVA Health to prescribe a biopsy (which was negative), even though they knew the deposits were there.
I don't know why they say things like that. During a stress test a few years ago, they told me they "thought" they "saw something" that indicated further testing and a prescription for Propranolol. I was a paramedic and a paramedic instructor for twenty years, and could read the ECG for myself if they'd shown it to me, and I'm quite certain that I would have understood what the potential problem was if they'd told me what it was or let me read it for myself. Yet, I couldn't get anything further from them. It's kind of hard to have confidence in that sort of thing.
It could be my personality, but I have no confidence in any doctor these days, and at this stage of my life it's beginning to worry me. I mostly view them as gatekeepers to tests and procedures, and to give me a starting point on analysis and advice...but I will not just blindly do what they say. I don't trust them....not a damned one. This could easily fall under "A man who acts as his own attorney has a fool for a client," but with more disastrous results. It stinks with what I'm going through, as I'm sure it does for others. I still don't know how I went from "You don't retain that much, if you can live with the symptoms" to "You have to cath for the rest of your life." I'm gonna be angry if I go through this procedure and then find out that the antibiotics I'm currently taking have cleared up a misdiagnosed infection that caused all of this and I can pee semi-normally again. But the only way to test the theory is to get the procedure, or to yank the cath/reinsert the cath/lather-rinse-repeat.
Truly sorry for your issues, but there are still a few good docs around, but that doesn't mean they are easy to find. Part of the issue is that doctors live in constant fear of lawyers and they always try to take the legally sfe way, even though they know it may not be best for the patient. Again, I point to the downgrading of primary care, as the family doctors got to know their patients, knew their feelings and fears, and knew which they could trust not to due them out of the profession.
Oh, yeah. There are always the other seats at the table: professional associations, regulatory agencies, lawyers, liability insurance carriers, health insurance codes & reimbursement rates. It's a wonder any functional care gets delivered in all that mess. I get frustrated, but empathy is certainly warranted. We all behave in those ways that get rewarded (or not punished)...well, most of us do. There's a few Don Quixote types still kicking around. I ain't naming names...
Thanks. I've been turning this over in my head for a while, but I don't know where to look. I've often turned to nurses for that kind of advice, but the only nurses I know here are working for UVA Health (and they seem to have drunk the Kool Aid) and there's one I really like at my current urologist, but I would not put her in the position to recommend a different practice. As I said, I've been through 3 practices and 5 doctors, and I do trust this guy as a technician. Besides, even with all my mistrust, the duration of this problem has me at the point that I really believe the SPC to be the right solution. I don't think the bladder can be resuscitated to the point of me having "normal," and I want the freedom those "won't turn back" friends of yours have found. I will be talking to my favorite nurse about ways to regain some of the function, mainly to keep the pelvic floor in a reasonable non-constipating shape.
I worked with nurses for over 50 years, so I have known a few. Hospital nurses are different form those in the clinic or office, as they see many doctors in the work life. It sounds like you have found a good one. Ask her what her history is and where she has worked. There are lots of good male nurses as well, but the good ones seem to be attracted to ER, ICU, or psychiatric units...or OR in some capacity. I can only tell you my experience which is different form yours, but I have recovered much of my bladder function despite being distended and in renal failure. I now live pretty much a normal life with no caths (although I have them at the ready should the need arise). I certainly wish you well, friend.
JB we do have to listen to our bodies and be our own advocate at times as you mentioned in your post. I have been there done that. I hope you find answers and head in the right direction to resolve your issues.
Thank you, Don. This nurse worked for 5-6 years in the urology department of a local hospital. She left after realizing that she was just another cog in the machine...I did not press to see if this were a long-term thing that ran its course or if there were a specific event. I can see where she has some autonomy in the clinic. People have appointments with her, she works in her own room, and she does her thing with the patient. She and I talked for a while, so either there was no one behind me or there's minimal pressure. I know I can rely on her for decent advice, but as you & I know, there are ways to have these conversations. I need to find out how I can get my appointments made with her and not just Next Available Nurse. Again, this is a 6 facility/40 physician enterprise. I've not given up on the idea of regaining function, but right now my bladder does not work at all. Another attractive thing about the SPC is that if I'm done with it, reversal merely involves having the cath taken out as though it's a routine change, and not putting one back in. Things heal up on their own pretty quickly...in fact, too quickly if removal is accidental.