3AM. Laying here with another catheter in me the old fashioned way. The suprapubic is sediment-clogged. sigh guess I’ll call my doctor tomorrow and see what’s next. I still have a week until I can swap out the Spc, since the stoma has not formed yet.I’ll upload pics of the sediment filled tube tomorrow. I wonder how deep it piles up in there. and I gotta drive a neighbor to the doc in 4 hours…
So I got things squared away today. There's an upside to seeing a practice that has 40 doctors...one of them was able to fit me in today. >They changed out the clogged suprapubic catheter, even though it's only been 5 weeks since surgery rather than 6. >They took out the indwelling cath that the ER inserted. >They gave me a large syringe and a bottle of sterile water so I can irrigate the catheter myself if I need to. The SPC swap-out was way less eventful that I expected it to be. Certainly much less traumatic than having a regular urethral cath messed with...but it is "odd." Now that I have the first change-out behind me, I'm less anxious over what the future holds (sediment issues notwithstanding.) I have rants regarding dismissive doctor arrogance and not getting direct answers to basic questions, but for now I'm gonna bask in the glow of gratitude for timely relief. I could have had 2 tubes hanging out of me for over a week rather than just for a day...and I got my first SPC change behind me (verifying that the stoma has formed sufficiently.)
Now I reckon you need to figure out why you have a sediment issues as bad as it is. Apparently, stones were what caused your original issue and led you down this path, right? Has anyone given you advice on how to reduce the stone formation? I assume a stone analysis was done, so you knw what type of stones you develop. I am really glad the change went so well, though.
The story is: Kidney Stones -July 4, 1990: I first got kidney stones. They were generally uneventful except for one that blocked me and required a catheter for week (circa 1998.) I've passed a ton of them...over (10) the very first day. -circa 2000-2003: Passed my last kidney stone. -circa 2006: I started having retention issues...maybe earlier than this. -2010: I moved here and used non-softened well water for cooking and coffee. I used bottled for drinking. The hard water brought back my kidney stones in the sand-like form that cats get. I switched to all-bottled (and later installed a softener) and those amorphous stones went away. I do drink a lot of softened water, but it's an efficient softener...and I run my drinking water through a Brita. I don't think I'm getting that much salt from it (if salt could be a problem)...and subsequent lab tests show it has remediated the hardness issue. Bladder Stone -2018: A CT scan for digestive issues incidentally disclosed an asymptomatic bladder stone and calcium deposits in my prostate. -2020: I decided to get the asymptomatic bladder stone removed before it got bigger and I got older, and it was those urologist visits that brought my issue of retention/frequent urination to the front burner. -I would think if this were a long-term physiological issue, I would have formed more than one bladder stone I have no idea what the kidney stones were (or bladder stone was) made of. Recall my story of the urologist losing the 2 containers of 24 Hour Test Urine (circa 1998)...the subject just died there. My GP back in 1990 was in possession of the stones and did not have them analyzed. Calcium oxylate is what the Vegas odds would lean towards for the kidney stones...dunno know about the bladder one. There has been no discussion with the current doctors regarding investigating this high level of sediment in my system. When I was relaying the recent crisis to my doctor yesterday morning via online tools (I like documenting the trail), a nurse called me to discuss setting up today's appointment. She told me to squeeze citrus juice into my water to address the issue. Today's nurse just told me to drink more water. But no one said a thing about this being something that requires investigation, even though the clogged cath put me in the ER and the ER staff could not dislodge it. Besides, I thought that increased acidity could cause kidney stone formation. I'm glad you mentioned figuring out the sediment...I'm drafting my next communication to my doctor's practice and I'll add this to the list. In my most recent communication, I sent them this pic of one mound of sediment in the drainage tube. (Now I'm starting to get pissed again at their apparent total lack of engagement.) Spoiler: Picture of tube with urine and sediment This was just one of many blobs...there were lots more downstream in the tube. This all came though the indwelling catheter they shoved up me,making me worry that it, too, was gonna clog soon. I freaked out. I've never seen this stuff, either in the clear tube of the overnight bag (like the one in the pic) or in the collection bags (leg or overnight), and I had an indwelling cath in me for 5 weeks. I certainly would have noticed...this stuff is not dissolved and my urine (as you can see) is always pretty clear. The ER doctor did not seem shocked by it...kinda gave me the "once you start using a catheter, the normal function of things gets disrupted" chat. One aside on this is that I had a cyctoscopy done in the middle of August, 2 weeks or so after my bladder died and a week before the SPC procedure. One would think the procedure would have flushed out any sediment that was present. Perhaps the high neck the doctor observed held a bunch back. I read one article/blog stating that infections cause increased levels of sediment (I've had a few recent infections cause by the procedures.) The author claims to have remediated his extreme sediment by taking a maintenance regime of 50mg Nitrofurantoin. (I've looked online for "sources," but hesitate to take something like this that's not documented on my medical records.) That author states that the low dose keeps the bacteria (and the resultant sediment) away while not causing antibiotic resistance...and we know that bacteria colonizes around catheters, possibly causing the sediment. The ER started me on a regime of Cephalexin yesterday (500mg x 4 per day.) I think this was a precaution...they saw blood in my urine, but the sample was collected via a fresh catheter, so the process likely caused some bleeding. Maybe all this will help...having the cath changed as I start a new round of antibiotics.
Man o man, I am very surprised no one analyzed any stones or that nobody suggest any therapy to reduce stone and gravel formation. You may have seen this website before, and it deals with kidney stones, but that would generally include sediment in any part of the urinary tract. This is a citation from the Drug.com website: "You should not take nitrofurantoin if you have severe kidney disease, urination problems, or a history of jaundice or liver problems caused by nitrofurantoin", so I would be cautious using this old antibiotic unless you are monitored closely.
The only thing that was done by my nephrologist GP was to prescribe HCTZ, because it prevents calcium from being excreted. Neither my original family GP (pre-1990) nor the nephrologist said anything about getting the kidney stones analyzed (I handed 5 of them to my original family GP.) None of the recent 3 urology practices said anything about getting an analysis for the bladder stone. Heck, they guy who removed it (my current urologist) could have sent it out for analysis. On the flip side, I've known folks who've had kidney stones analyzed and all they were told was to avoid broccoli (because of its oxylate content.) My kidney stone formation stopped a long time ago (there's one left in there), and as I said, I temporarily got the sand-like ones when I was drinking hard water with lots of minerals suspended in it...if those were even "stones." They came on quickly, and went away just as fast. It's always infuriated me that I got stones because I have been such a huge water drinker my entire life. I never liked sodas. Even when I was a beer drinker I drank a lot of water. And I've always had lots of fruits & veggies in my diet. Anyway... The Kidney Foundation website echoed what I made reference to before: "When the urine is less acidic, then stones may be less able to form." Yet my urologist tells me to put orange & lemon juice in my water to prevent sediment, as have other websites. Reading how salt contributes to stones has me rethinking the gallons of softened water that I drink. I drink nothing but it, either straight or as coffee. But again, my kidney stone problems have gone away. The nitrofurantoin issue is interesting...as you know, it's used to treat urinary tract infections. What I found to be most interesting is that in this day & age the author was able to get on a routine maintenance dose of an antibiotic...but I believe he's in the British health care system. As an aside, when reading any of this stuff, I've always assumed that kidney stone formation is not a "severe kidney disease." Not that I'm gonna run out and start taking drugs, but I've seen this admonishment before and figured that "propensity to form stones" was not what they meant by disease...I figured that "disease" means that the kidneys are malfunctioning in one way or another. I'm not certain I've ever taken any action based upon that thought process. Since I'm typing...the rant I avoided in my last post was that I was hoping the different doctor (same practice) would be someone I could ask questions of. Nope. The nurse I saw had no idea what I was there for, so she went to ask the doctor if my SPC could be changed at Week 5 rather than at Week 6. The doctor walks into the room, gets no closer to me than 4 feet (my pants still on so the SPC wound was still covered), and pronounces Moses-like: "It's ready." That was all he said. Hell, they didn't even know what I was in there for. So I reply "My regular doctor said to wait 6 weeks, but now I've had this crisis at Week 5 and here I am. So how do we know that it's OK to change this now?" He points to his head and says "You see all these gray hairs?" Then he shuts up. That was his complete answer. I had to bite my tongue to not spit back "Yeh, lawsuits are stressful." (At least the bastard could have told me that 5 weeks was well inside the margin of safety and that 6 was cautious overkill, if that's the case.) What I really said was: "I don't want to take steps backward if doing the right thing means living with 2 caths in me for another week to be certain." He replied: "Well, I work for you. If you don't want this done, that's OK with me." I probably should have waited. My current state of satisfaction is having mitigated today's crisis. Long-term I don't know what's gonna happen with the sediment interfering with the cath. As many times as I asked (I believe 3 times), today's nurse would not tell me to flush the cath as routine maintenance...she kept saying to only do it if the flow slows. But urine production is so erratic throughout the day there's no way to gauge that. I told her that. It ranges from 500ml in an hour to 100ml or so. There was no early warning when the flow nearly stopped Tuesday evening. I'm sure I'm not alone in that experience. I may just flush it every other week for my own piece of mind and keep my mouth shut. We flushed it in her office and it's not an uncomfortable experience. edit to add: I've only formed one bladder stone my entire life. I still wonder if this sediment isn't caused by the 2 recent bladder infections I've had.
The larger stones may no longer be an issue, but the sediment that is forming could just be akin to the stones just smaller. Medications to reduce stone formation are determined by the type of stone formed. If you followed that link, you will have seen that Ca oxalate stones, which were thought to be related to excess calcium are now believed to be due to insufficient calcium. Go figure.
Yeh, I recall reading about the change of heart regarding calcium, and saw that low-calcium diets can put you at risk. That's when I added calcium supplements to my regime. I have never liked milk, and have often wondered about my Ca levels. I'm surprised to read that kidneys play a role in calcium regulation...I always figured the skeletal system to be the regulator. I was surprised to see salt as a bad actor in all of this. I don't ever recall reading anything about salt causing stones, but I've never been a junk food fan. I didn't see anything regarding meds for stones. I figured HCTZ was a weird one because it's a blood pressure med that happens to block calcium from getting to your kidneys. But I didn't notice any mention of meds on the website. My next note to my doctor is gonna include a question on their advice to make my urine more acidic. Those people are gonna hate me. But I have to say that the nurses who have called me have been very nice, very patient and very helpful.
Another 8 hours in the ER last night because of a clogged catheter. They woUld not replace the spc. It was wasted time. I’m in my dr’s office now…I have no idea how I snagged an immediate appointment other than persistence. details later. This sucks. Where’s my exit?
Sorry to hear that John, and I'm still praying that it finally gets better for you. You're a strong man to keep hanging in there like you do. It's always hard to word things, especially when things are going bad for someone else, I just hope and pray it gets better for you real soon.
**Chock-full of Negativity warning** I'm gonna stop posting in this thread, it's all too negative and fatalistic and the nightmare's never going to end. I just need to get this latest episode off of my chest. I went from a nurse who did a good job swapping out the initial Suprapubic Catheter (SPC) to a nightmare of an experience that does not merit detailed recounting...let's just say I hurt and I spotted blood in places I should not hurt or spot blood from just having an SPC swap done. (And another incompletely deflated catheter violently yanked through, this time through a different passageway.) My bladder was full from the blockage and she said "It makes things easier." (I bet I've just been given another infection.) And this was was their "triage nurse"!!! This is ridiculous. Patients are not permitted to select which nurse does any procedure on us (a large multi-facility practice), so we cannot avoid the marginal ones. When I went in this morning I bet there were over 50 people in the large waiting area queuing for their turn on the assembly line. The doctor who stuck his head in today told me that there is nothing I can do about my bladder sediment...there is nothing I can take, there are no diet modifications, there is nothing about my physiology or anyone's physiology that causes this...this is just how these things are once you got a cath. So to reduce my exposure, I have to increase the frequency of cath changes to every 3 weeks thereby increasing the odds of more pain & suffering. Avoiding this very situation was a big reason I got the SPC done in the first place. I guess I'm not too smart, huh? I had previously asked a nurse about me doing a "maintenance flush" on this thing to reduce the sediment risk. She told me to not mess with it unless the flow started to diminish...but as I've stated, there is no such warning. When I asked the doctor about it today, he told me to maintenance flush it every 2-3 days! I have so many examples of such contradictions that cannot be chalked up to "Differences of opinion." Too many people in this industry (not just this practice) shoot from the hip. The worse part of the recent events is the availability of my ER safety valve just diminished. I sat there last night for over 7 hours before the doctor met with me and told me that they do not do SPC catheter swaps...in essence, inferring that they were not there to take the place of what my urologist should be doing. He told me that I need to get my urologist to "do the job they promised to do when they took me on as a patient." He called me back to the pre-screening room to deliver this specific message...I never made it to an exam room. Because of how this stuff manifested itself, I walked out of the ER with an undiagnosed full bladder that was not emptying. The weird thing is that when I went in there in early September (a week or so after initially having the SPC done) and there was an infection from the just-removed indwelling cath, this same ER doctor prescribed antibiotics and said that if the SPC had been established, he would have replaced it (which is standard procedure, because caths can harbor the infection.) When I went in 4 weeks later with the sediment-plugged cath, a different ER doctor told me that if the SPC had been established (the first swap-out had yet to occur), he would have just replaced it...then he reassured me that that they would always be there when I need help. I don't want to type out what's going through my mind right now. There is no end point.