Clorpactin out, start Uracyst

[Dianne]

This is a follow up post to the clorpactin treatments. I did a total of two .1% instills and four .2% instills, then began bleeding during the procedure. After much researching, talking to company, etc., decided not to continue it. I had a cysto Tues. and bladder was unchanged but urethra was very "shaggy looking". Really I've had so much more urethral problems during the 5 weeks I did clorpactin so I'm kind of relieved but disappointed. I've decided to resume Uracyst. I did only one before and bagged it because it about killed me but I know now that I have a problem with NaCl and that's what it comes in. The drug rep said I could dilute it with 40cc sterile water to get the sodium content down without altering the effect so did that and made it through instill # 1. I'm going to shoot for twice/week for 3 mos. and see what happens. I'll post updates. I know one lady that this worked for when nothing else did and then I know Louise had the same problems I did but that's the only people I know who have tried it. Here's the link on Uracyst: http://www.stellarint.com/uracyst.htm I hope what the rep said is correct and that it won't be so diluted it doesn't have a chance to work.

[Kathi]

Where there's a will there's a way! I'm so happy that you were able to find an alternative way of helping yourself. You go girl!!! Kathi

[liz2]

Dianne, I am sorry to hear about your continued problems. What all have you tried with your bladder and urethra? I have been preoccupied with other issues. Does anything help you? Does your bladder possibly need to rest? My bladder would be tired at this point.

It seems like you have explored many treatment protocols. Doesn't anything help? Are you still trying to work?

Have you considered pelvic floor therapy? Pelvic floor problems seem to inact with urethral problems.

[Dianne]

Yes, I've done it all. There isn't one thing on the patient handbook or treatment session I haven't tried except BCG and not interested in that one or interstim which isn't for pain. So far, the only thing that helps me is a Cipro every other day. I've tried rest for up to weeks at a time and just got worse yet my capacity continues to be fabulous. I "held it" several times the last few days til the point of major pain and voided 500, then 525, and today 625cc which is phenomenal. My problem is severe pain. I have pain with any amount of urine at all although I can tolerate more if I'm upright. I'm working two 12-hour shifts a week as day shift charge RN. It's good money to pay the bills and keep my insurance but it's a struggle. Since I do the scheduling I try not to work any two in a row but can't always manage that. There are nights I'm only in bed 2 hours and trying to get back up and work is horrendous. I do get to use my lunch 1/2 hour to nap per disability agreement and that gets me through the 2nd half of shift. A spinal with marcaine gives me a 3 day remission but that's not something that can be done either just for pain and it can't be put in an ongoing epidural I'm told due to something called "tachyphylaxis" sp?. But every time there's a procedure that qualifies for a spinal I jump at the chance just for the 3 wonderful days. I see the neurosurgeon for consult next week. I can only lie down for 4 mins. max and if I can get to sleep, I usually wake up in 30 mins. and then pain through the roof and I'm up walking the floors til 3am most nights. Once in awhile I'm so exhausted I can sleep through it a few hours but if I'm not asleep in 4 mins., I have to get up and see if I can squeeze out a few drops to relieve the pain and then I start over. I'm usually able to sleep somewhat 3-5am but that's the only hours I can pretty much count on sleeping. About two nights a week I move to the couch and prop myself totally upright on pillows and sometimes I can dose that way. But overall I've had a steady downhill course in terms of pain and pressure whether I treat it or do nothing. Since I know doing nothing isn't going to fix it, I'm just going to keep trying treatments, but thanks for asking. It's so rare anyone asks us in the "real world" how we are? Thank you.