Thank you, Susan. You know how it is when there is no option that you "want." I wish I trusted my doctor more, but this entire profession is "odd" in the way it treats patients. It's aggressive and dismissive. I don't get it. I beat myself up a little for all the whining that I do. While this is a nasty (and frightening) thing to go through, the remedies are commonly invoked and usually effective--albeit uncomfortable. I know there are folks who would trade places with me in a heartbeat. Reading the catheter stories on MS forums brings a few such folks I've known to mind...and they were a lot younger than I.
Clinic and office nursing is certainly easier and less stressful than hospital nursing. I was trying to recall how it went when I wore a leg bag, and I think it was strapped to my lower leg with a valve at the bottom that I could use to simply empty the bag without disconnecting anything. It didn't restrict my activity much at all.
My current restriction is driven by the catheter exiting a very sensitive part of my anatomy. I can find a comfortable angle to affix it for standing, an angle for sitting in each specific chair (or behind the wheel), etc, but wearing this and doing any kind of activity (yard work, bending over/standing back up to even put on socks/tie shoes) is not the most comfortable thing in the world. ps: You're up kinda early. Still on Harvest Time with nuthin' to pick?
JB, I read somewhere about soaking in a tub of hot water n then trying to relieve yourself. Conventional method, maybe it will work. This may sound absurd but no harm in trying it out.
PPS: yep, got up at 4:30 for some reason. Will be pickin' from the greenhouses a bit later and a busy day ahead.
I may try that if I get this indwelling catheter taken out. Regarding the supra-pubic catheter...the brochure and the user behaviour don't always match each other. You are not "supposed to" submerge the point where the cath exits: no bathing, no swimming, no hot tubs (which tend to be cauldrons of bacteria.) But I read accounts of folks doing all those things with no ill effects...at least, they were fine as of their most recent comment date One would think you could at least bathe if you put a schmere of Vaseline and perhaps a waterproof bandage around the thing and are careful to not wash it off. But keep in mind that this spot does not ever heal closed...it's a direct shot into your bladder through which you periodically remove/replace the catheter. So we'll see.
I feel fortunate. Having had kidney, bladder and prostate stones, I've been able to keep them and the calcium under control with hydrochlorothiazide tablets. I did have to have the lasor-powered roto-rooter up the wiener blast some stones to bits several times in the past. The bad part about the laser treatment is that afterwards it feels like you're pissing bits of glass for several days.
Nearly all of my kidney stones passed without incident. I never had one get lodged in my back. I had a few that took a few days through the final leg of the journey, and then one that required a catheter. My one bladder stone was asymptomatic. It was discovered on a CT scan that was done for other issues. I know that if bladder stones are too big to pull out they laser them into smaller bits, but I have no idea if that was done for mine. I'll have to ask my doctor about HCTZ. I was not told about doing anything for my prostate stones.
The HCTZ prescription came about as the result of my storing and sending a number of days worth of urine into a lab that sent the results to my urologist.
Yeh, you may have read that I tried that route, and had to go back for a second collection bottle (I drink a lot of water.) Somewhere between the urologist and the lab, the sample(s) got lost.
It was probably the urologist's office. They are supposed to mix, aliquot, etc.... Usually THAT is where the system breaks down.
I got an appointment tomorrow to have a PSA test done (my request) and to ask my doctor questions about the supra pubic catheter (SPC.) This appointment was originally my semi-annual test to make sure my urine is not backing up into my kidneys. Since I've had a catheter in me for almost 4 weeks (just finishing Week #2 on the most recent insertion), that's not gonna be possible. So I converted this appointment into (1) getting a PSA test (2) getting the scheduled x-ray of the one remaining kidney stone I've got to monitor its position (I really don't see the medical necessity but I let it go to save my righteous indignation for the important stuff...and the x-ray is not invasive) and (3) asking questions about the SPC. It should be interesting. I saw him 2 weeks ago when he did a cystoscopy and then wanted me to see his prostate guy to see if there was any relief to be had by messing with my high bladder neck. I decided to not bother with that other doctor because the prior urodynamic indicated that the problem was 95% bladder, and all indications are that my bladder's gotten worse. I can't see getting a procedure that may address the neck when the bladder muscles are still gonna be shot...and I really don't feel like having any more billable events shoved up inside of me. I don't know how my doctor's gonna feel that I passed on his advice. I also anticipate another aggressive sell on self-catheterizing from him. My going-off-the-deep-end personality is envisioning a bad conflict. My doctor also threw out the idea of another urodynamic, but again I cannot really see the need. It makes me angry that I'd really like things to be fully quantified before I take a major step, but I've neither read nor heard anything that says your bladder muscles regain function to any extent. And the "backing up into the kidney" test I had in February seemed to indicate that my bladder was getting worse (he even said "Your bladder doesn't work very well.") Dammit, these tests are not the same as drawing blood or peeing in a cup. It all sets my teeth on edge, and not having current data puts me at a disadvantage. I'm on the fence about getting another urodynamic done, but I really don't think it's gonna change the outcome. Another doctor's nurse from this practice called me Monday in response to an online message I sent regarding changing up tomorrow's itinerary, and we had a long conversation. She was very helpful, and pointed out a couple of SPC downsides that I had not encountered elsewhere. She said that overnight emptying with an SPC is not always as complete as you get with the traditional catheter due to where the SPC is located in the bladder. She also said that some folks have issues with the SPC catheter kinking in the middle of the night. (I gotta believe something like that is easily enough remediated with surgical tape or some other method.) And there's the sediment buildup/make-a-stone issue, which will be worse with the SPC than with the regular catheter or with self-catheterizing (because the last two methods will drain things from the bottom and not leave as much residual urine.) I'm at the point where I'll endure getting flushed out every year or two to prevent getting stones in order to move forward with a workable solution. The one thing we discussed that did take the wind out of my sails was when I asked about putting an on/off valve on the catheter so I could let my bladder fill and go normally as best I could, and then finish draining with the SPC. My thought is that doing so would stop those muscles from atrophying and would get rid of sediment (just as self-cathing would.) She said that when the bladder sees urine, it automatically contracts and creates pressure, and that the pressure is likely to force urine out and leak around the catheter. I'll ask the doctor if making the attempt to do this presents risk. I sure hope he answers my questions honestly without trying to drive me to the outcome he wants. A compounding frustration is that I don't think I'd get better care from anyone else...that this demeanor is de rigueur in the profession. Five doctors and three practices have driven me to this conclusion. And I got a catheter inside of me, so it's a little late to go shopping. <insert expletive> *sigh*
John, My thoughts & prayers will be with you tomorrow. Talk to your doctor asks your questions, and talk about the eurodynamic test tell him your rationale why you don't think it's necessary, and ask him why he does think it's necessary. Is there a chance to Bladder can improve? Tony
Thanks, Tony. I think the only thing that can be done for these muscles is when they are overactive. That's what those "overactive bladder" drugs do...they calm it down. Last time I spoke with my doctor he said the only current research involves planting electrodes to shock the muscles and cause them to contract...but it's not real promising. I've not read anything about these muscles getting better...either on their own or with any treatment, other than the link to a physical therapist that @Susan Paynter posted. It's on my list of things to pursue. I'm so sick of this right now that I trust no one. And the thing is, even if I could get back to my prior state, things were not all that livable. It's either live with discomfort, urgency and frequency, or relax with a tube hanging out of my side.