So I've been reading a few forums discussing supra-pubic catheters (SPC). Things are about 90% positive/10% have issues. Cathing is most often a subtopic on forums centered around other maladies (MS, SMA, prostate cancer.) The most active forum is a UK MS forum. Nearly all of the UK MS folks have visiting nurses do the periodic catheter replacement (4-12 week intervals.) The most common complaint is that having this foreign object in one's bladder causes painful spasms...some are fleeting while others are continuous. Urology sites say such things are common post-op things, while most comments I've read say otherwise. Fixes for this range from narcotics to meds (myrbetriq, et al) to relocating the angle/orientation of the catheter. A few folks claimed that the closer to the bottom of the bladder the thing is installed, the greater the likelihood of spasms because there are more nerve endings here. I do not know the validity of those opinions. Some folks have daily clogging issues and their constantly back-flushing (which would occur with any catheter with those folks.) Those with the worse reactions almost always have other significant underlying issues. The vast majority of folks are really happy with having made the decision (but I don't always have the backstory), with a few having voluntarily made the transition from ISC to the SPC solely because of the convenience factor (and no other underlying condition.) I read a couple of posts where the spasm issue was overcome by changing to a specific model catheter...one that has 2 balloons in it rather than one (Duette catheter by Poiesis.) The design seems to negate the spasm-causing irritation. I don't know how much control I'll have over what's initially installed if I decide to do this. I have no idea where/how to order supplies, what the supplies would be, how to get insurance involved, how to make sure I don't get a questionable "let's bleed Medicare dry" supplier, etc. I've read a couple of stories where these things have gotten yanked out (you replace them monthly just like any other indwelling catheter), and if they are not reinserted within a couple of hours, the hole closes up and you gotta get the procedure done again (and be cathed otherwise while you wait.) And apparently not all ERs have these things on hand. So my emergency kit has got to have one or two of these in it. The problem is that the more I think of having a tube permanently sticking out of me, the more I think I need to self-cath. And the more I think about self-cathing, the more convinced I am that the SPC is the right thing to do. I have a bunch of questions and no one to ask them of. Yesterday I sent a Patient Portal note to the urology business requesting an appointment with whoever they have on staff who has the most direct experience with the most patients on this. I also asked for help connecting with another provider if the practice does not see much of this procedure. Every damned urologist aggressively pushes ISC as though a chunk of their income is dependent on it, and I cannot figure out why (maybe there's some ongoing contest sponsored by catheter manufacturers.) If I get more ISC pressure rather than the SPC info I seek, I am gonna be politely impolite...then we'll escalate. If I do this, the only time pressures I have are (1) I wanna get it done before the cath I have inme gets swapped out, and (2) my neighbor who's gonna give me a ride and he's getting a knee replaced the middle of September. I have no idea how far out SPC surgery might be once I pull the trigger.
...and it's not uncommon to encounter a description such as this when perusing the catheter supplies online: This bag is made of cotton material, practical and durable. It is great storage bag for old man or patient. This bag design is portable, convenient and easy to carry. It will help storage piss to keep old man clean. Way to know your customer base, dude.
A couple questions for you @John Brunner . You mentioned you were/are on Flomax (or generic equivalent Tamsulosin). Are you taking 0.8 or 1.6 mg doses? Some men do not respond to the lower dose, so the higher dose--0.8 taken morning and evening. Just a thought. Another issue with the urgency; I experienced the same thing at one point and the Urology Clinic gave me a new drug. They said insurance never covers it and it is very expensive, so they just gave me samples for 10 days and it cured the issue and it has never come back. I am truly sorry that the drug name is not remembered by this old man. Perhaps your urologist would know what I am referring to.
I am on the 0.4mg dose of Flomax, and doubled it for a month to see if it made a difference. It didn't. In fact, all urologists are unbelieving that it made any difference at all, since the urodynamics said the issue is low bladder pressure. When my bladder broke a couple of weeks ago, there was no urgency to go. There was no need to go at all, even though I was retaining over 800ml. I went in (July 29) because of the complete lack of urgency coupled with the suddenly weak low stream. There was no burning. I'm uncertain as to what to do, since this is my 3rd urology practice (although #2 may as well not have existed.) The current guy offered another urodynamics, but I can't see enduring that again. I'm not certain what good it would do. The cystoscopy found nothing that would cause this other than observing a "worked hard bladder." At this point I can't believe there's an infection because I have no symptoms. My urologist offered to set up an appointment with his prostate guy to see if any relief could be had there, but since the cystoscopy found nothing, and eventually I could not pee at all, I cannot see any such procedure getting me to an acceptable flow rate. The only thing he noted was that I have a high bladder neck. But that's a permanent part of my physiology, not a new manifestation.
The high bladder neck could be part of the distended bladder. I think I have some of the same problem but not as severe as you. Mine seems to have healed somewhat from the damage that I suffered but it will always be a problem.
That's interesting. My doctor did not say. But you could fill volumes with what they don't tell you. I am hoping that I would have minimal issues with the SPC (should I choose to go that way) mainly because my bladder has been stretched so large there's lots of room for stuff in there. When I had the urodynamics, they had to get a second container of fluid to pump into me before I felt the urge. I was surprised when they yanked the last cath and did a retention test, and I felt the urge at 300ml...who knows what's going on with it. I may not have mentioned that I was on a semi-annual test to make certain that my retention was not backing up onto my kidneys. You drink water an hour beforehand and hold it, they do an ultrasound to make sure your urine is not backing up, then you pee and they measure how much you retain. I normally retain 400ml or so. I retained 650ml. But when I get that full, I go in stages...I don't empty in a single session. I told the guy if he did another scan I would be back to 400ml because I went to the bathroom again just a few minutes after the test. He said "Your bladder does not work very good." I just need to do something. I'm sitting here now feeling like I've really gotta go, but the bag is filling up OK so things are not blocked. I can't tell if there's an infection or just irritation or what...things are clear so if it's an infection it's a mild one. My mind wanders back to self-cathing as a solution, but my objections rapidly come to mind. I cannot be tied to my house, and I cannot imagine carrying a kit and setting up shop in random bathrooms...on top of the reality of "the act".
Changing my gender is off the table, so I've already got myself sold on the supra-pubic catheter. Neither the traditional catheter nor the self-cathing are gonna work for me. The problem is I want none of it. I posted in the Pit & Peak thread that I got antibiotics today and they are clearing up the urgency issue.
John, looks like your problem has not gone away. Have you tried physical therapy? https://www.smartbodypt.com/physical-therapy-for-urinary-retention/
Yeah, but the "manual therapy--internal and external sounds a bit like some therapy you might get in a cat house in Nevada
As I said: "Interesting." That business is located in Jacksonville. Here are similar businesses that are legit enough to be found in a web search:
I apologize for suggesting the link. We do have PT here or massage parlors and not all of them are cat houses. Sometimes conventional methods do help. The following is from a website but i will just leave it as it says below. The physical therapist will work to stretch tight pelvic floor muscles and help you keep them relaxed. Pelvic floor muscle exercises, also called Kegel exercises, help the nerves and muscles that you use to empty your bladder work better. Physical therapy can help you gain control over your urinary retention symptoms. Train your bladder. Hope you get better.
Susan, I'm sorry we joked about it. I wish there were something like that near me, and that I had seen it sooner. I absolutely would have given it a shot, but it does not look like they have branches near me. My issue is the detrusor muscles, which squeeze the bladder to empty it...but that P.T. website specifically mentioned those as something they work on, in addition to the work they do with the pelvic floor muscle, so this malady is on their radar screen. There's part of me that cannot believe that weak detrusor muscles cannot be exercised, but I've seen 5 urologists at 3 practices and no one raised such a possibility. One urologist said that self-cathing might bring the muscles back (all others disagreed), but if that were the case, then people who had been 7x24 cathed for a period of time should be regaining their muscle strength...and I have yet to read of that happening to anyone. This whole thing stinks. I sincerely apologize for being dismissive. Your suggestion is entirely appropriate and appreciated.