So this issue...along with other stuff...ended up being a "call your doctor immediately if" side effect. I've stopped the meds, and they're gonna wait for the urine culture to come back before providing a substitute med.
Thanks, Don. I just want an end to it all, and it's not gonna happen. The rest of my life is gonna be spent with having stuff shoved up inside of me to one degree of frequency or another. You know, when I had the infection caused by the urodynamics, the ER gave me a script and kicked me out the door...there was no catheter or subsequent culture/meds modification, and I had completely lost the ability to urinate. The same about a year or so later when another urologist found a symptom-less infection incidental to a routine visit...they gave me a script and kicked me out the door. The problems cleared up immediately both times. Right now I'm on Day 4 of wearing a catheter (which is killing my sleep and my ability to do anything) and the doctor last night said the cultures to get me STARTED on an antibiotic could take a week to get back from their labs. I swear 90% of what so many places do is to log more billable events. That might be OK when someone has a rash, but not this stuff. You don't torture people for money. Next time I have a bladder infection I'm going to my GP or the ER.
Really sorry to read that you’re going through so many problems with it John. Without looking I have probably written about it before but one of my x’ s had quite a few bladder infections and I have been known to have one every so often but they always cleared up quickly by drinking straight cranberry juice. I do realize that your problem is probably far more extreme than the normal every day bladder infection but still, the juice might help a little while you’re waiting for lab results. If you do try it just beware that cranberry juice will definitely change the color of urine. Not as bad as a load of green crème de menthe does but still, it’s a good addition if you’re into gay pride.
So the lab came back negative for bacteria. How could I go from retaining 400ml for the longest time to retaining 900ml without there being an infection??? This is not good. edit to add: Sorry for posting drivel.
If it bothers you, it isn't drivel. None of these are close to you, but Baltimore isn't too far. It might be worthwhile trying to get a consult there and be followed up by your primary care provider. link As far as the retention with no infection, there are many issues that could cause that, including an anaerobic infection that would not be picked up on a routine urine culture, prostate issues and other blockages (which you know about), and neurologic issues with the bladder. You apparently need to be seen by someone who knows or cares more about what is going on with you. There are some surgical things that can be done, but I don't think you want those.
So a suprapubic catheter is not an easy fix for someone with an aversion to self-cathing?? Regarding my care: I bounced around providers a bit. I've pushed back on self-cathing, so a large part of this is my fault. I got an emergency appointment Friday and did not see my regular doc. I have a message in now to accelerate Friday's appointment...if there are other issues going on, I don't want the cath removed heading into the weekend. That being said, I've bounced around providers because I'm not happy with the care. But what can they do if I won't take the self-cath advice?
Like I said, try Johns-Hopkins for an opinion. I didn't find self-cathing that terrible. It was certainly better than the alternative issues. Perhaps you had the wrong size catheter...or the wrong type. I found the idea repulsive at the start, but the relief was worth it. I used the non-lubed ones and lubed them myself with K-Y Jelly. I was taught by a very experienced urology nurse.
I am sorry about your bladder issues, John. I am sure it is miserable as hell. I know how I feel when I get bad UTI's. D-mannose, cranberry capsules, and a good probiotic can be helpful, as well as marshmallow root, or even slippery elm.
I'm a little concerned about this because they do a Voiding Trial after removing the catheter...this is being done tomorrow AM. I have no idea if my bladder will recover instantly like that. And there's still no diagnosis as to what was preventing me from urinating in the first place. The lab test checked for both aerobic and anaerobic bacteria.
John, I hope everything goes well tomorrow. Let us know when you get home. I'll be thinking about you.
Thanks, Beth. They'll use the catheter I already got to pump in fluids and then remove it. If I can pee sufficiently I go home. I guess they put a fresh one in if I can't. I don't know what I do regarding diagnosis. I talked to my doctor's nurse a little the other day and she says that such things to happen sometimes, but now I feel like a walking time bomb who may be out somewhere and suddenly not be able to pee. This is stupid.
I am so sorry that you've got to go through this, John, and pray that it will not be nearly as bad as you expect it to be.
Thanks, Ken. I appreciate it. I've been reviewing a minor surgical procedure (often done under a local) they have for implanting a catheter below the abdomen directly into the bladder. link Articles are mostly positive about it, and are one of the few places where they talk about folks having issues self-cathing (other sites over-sell the ease) and this procedure being a solution for the aversion and for reducing the risk of introducing infections compared to other caths. I'll see my doctor the end of this month for my semi-annual test to make sure urine is not backing up into my kidneys, which is the main risk to retention. I'll discuss it with him. So far we've been in the "I can live with it" mode, but it's getting to the point that I don't want to anymore. You know how it is...at some point you just want a resolution. Right now this is impacting my mental state (just add it to the list) but not my physical health.