I do. It's subsiding and mostly hurts at certain angles and when stress is applied. As I said before, they do this procedure with nothing more than the local anesthetic...at least I got a mild sedative. I forced myself to sleep in this morning. I woke up at 6AM, popped a couple of acetaminophen, then went back to bed. I don't know how many years it's been since I was still in bed gone 11AM. Thanks for the well-wishes, dear. Things are already moving in a good direction.
Well, things took a few steps backwards. (Detailed health talk follows.) I just can't get off of this roller coaster and move forward. When they removed the Foley catheter on Wednesday, the rest of that evening I was spotting blood. Then the next day I had blood mixed with discharge, and it's been that way since. It constantly feels like I have to urinate, but I have a suprapubic catheter in me...I'm not urinating "that way" anymore. It seems that the discomfort is strong, and then discharge relieves it a bit. There has been no visible discoloration or blood or anything in the collection bag. I took a Depends with me to wear after Wednesday's procedure and I'm glad I did. Not only are they disposable, I'm still not certain what to expect of my body. I called the On Call guy at my doctor's (a physician) Saturday night who told me bleeding and discharge are common when catheters have been in for a period of time, and as long as I was not running a fever, it was not an infection. (I'm not sure I agree with that statement.) Well, yesterday afternoon into the evening the urge was horrible and unrelenting. I got up at midnight, dressed, and drove to the ER. The poor ER doctor had little to work with. The only urine sample I could give him was from the bag (interesting that my doctor's office has no problem with a "tainted" sample.) He wanted to know if I could try to give him a sample the regular way. I told him: -I have a suprapubic cath in me, so I guess I would have to plug it -My bladder is always empty due to the cath, so there's nothing for me to give you -I've not urinated that way for 5 weeks, so not only would it be an "event" I've avoided, I now got infection up in there to boot -My detrusor muscles are shot, so I can't pee in the best of circumstances So the guy took a shot in the dark regarding which antibiotic to prescribe (cephalexin.) I took my first course at 4AM and my second course an hour ago. It's taken the edge of, but I still have that "urge." I think this one is gonna be tough to knock out. I hope the drugs work. It's horribly uncomfortable, and I can't get a good night's sleep. I'm more than a little sick of all this. There seems to be no end point. I'm not focusing on adapting to the suprapubic catheter as I anticipated, I'm managing my way around an unrelenting urge to pee that should not be part of the equation. This makes me glad I got that Foley out of me. Goodness knows how long that infection has been there, or how long it would have stayed had I not decided to get the suprapubic installed and the Foley permanently removed. When you have a cath long-term and they swap them out every month, there is no sample taken that I've experienced to check for infection...they just yank the old one and shove in a new one. Symptoms can be masked (and they were) when you got a tube up inside of you. I am not impressed with this industry. At all. I've gone a long time without taking an antibiotic. Since seeing urologists, this is my 3rd course of them: -When the urodynamics gave me an infection -When a cystoscopy gave me an infection -This current Foley infection
Sorry to hear that things are not working out as you hoped, @John Brunner. I hope all works out and everything gets back to "normal".
John, I hate you have to go through this, especially the mistakes that cause mor pain. Hope things settle down for you soon.
Thanks for asking, Don. I've yet to have my first change. They wait 6 weeks for the stoma to form. My appointment is the 14th of next month. I wish I had better faith in the practice I'm going to. I went in a week or so ago for advice and kinda got blown off. I also found out that if you have an infection and you are catheterized, they won't give you antibiotic unless you are running a fever. It has something to do with the bacteria that frequently colonize around the catheter so a culture is not 100% confirmation of an infection the way that a fever is. I guess I'll go to the ER or the local clinic if I need to. I got a recommendation for another urologist, but that guy can't see me until mid-late November. The entry site is still tender. If I'm not careful and the catheter gets pulled or tugged on, it feels like a painful pinch and I have to rearrange the way it routes to the bag. Yesterday evening it seemed as though things were settling down, but then it got tugged on overnight and it's been sorer than normal today. I'm still refining the tube placement and the types of straps to hold things where they need to be to prevent this from happening. I also still have seepage of varying volume from my urethra. It's almost 4 weeks since the indwelling catheter was removed. I don't know if this is normal and will fully subside or if they did damage when they pulled the partially inflated balloon through me. It's not painful and it's not an infection, so I'll talk to them when I go in to have the new catheter changed. Understandably, I'm not happy at living the rest of my life like this. I'm always on the bubble if I get a new infection...how sick do I have to get in order to obtain relief? I got a monthly catheter change to look forward to. And I still don't really know what the heck happened to cause my bladder to 100% stop functioning. I'll just have to give it all time. Honestly, if the entry site heals properly and I can get some trust going regarding the monthly catheter change, I can live with it.
I mentioned your situation to my urologist, who seems like a "real guy" to me, and he seemed surprised by your decision. He said he uses the suprapubic route, but he has only done it with neurogenic bladders and MS patients and such. He said if you absolutely cannot pee, that is the way to go. I certainly wish you well.
Thanks, Don. Yeh, I could not go at all. Nada. Zip. I appreciate the validation on the decision. I just hope there was nothing easy to fix going on. And most of what I've read about the procedure has been on MS forums. I'm gonna make an appointment to see the other guy in November. I forgot to do that today.
Back in the frikin er again. Massive bladder infection. The place is jam packed. I don’t know how to make this stop. I thought the suprapubic was supposed to be cleaner. Things felt like they had settled down. I need off the roller coaster.
Hoping that they are able to get the infection under control, and you do not have to wait in the ER waiting area forever. Sending prayers for your recovery, and for the doctors to know the best way to treat this. Keep us posted as well as you are able, and hope they do not have to keep you in the hospital.
I’ve got this spc in me, I’ve been taking d-mannose, I’ve been taking cranberry supplements, and I’ve been drinking the damn juice. I wish I had a decent doctor to work with.