Bladder instill

[melanie626]

My URo has talked about bladder instill under anesthesia of clorpactin, silver nitrate, the nasty stuff- anyone have any thoughts, experience that is positive from this? I do heparin, lido, bicarb and have had regular hydrodistension x 2 without help.

Many thanks

[kadi]

Have you tried the oral medications (top three are Elavil, Elmiron, Hydroxyzine) & the diet? Pelvic floor physical therapy? How serious is your IC? Chlorpactin & silver nitrate instillations are known to be very painful and most urologists don't do them anymore. I'd get a second or third opinion before having Chlorpactin or Silver Nitrate...

[melanie626]

Thanks Kadi-
I am on elmiron, hydroxyzine, low dose prozac, birth control, as needed valium, B & O supp, vicoden daily, bladders instills. Won't do Elavil as gaining all the weight would push me right over the edge.

I will ask more questions.

[Lynn15]

Have you tried RIMSO?? I know a lot of people have a hard time with it, but it also helps a lot of others. I stuck with it and it seemed to help. I agree about getting another opinion though. I thought that silver nitrate and chlorpactin weren't used much at all due to the severe pain.
elavil has the potential for weight gain, but there are other antidepressants where that side effect is less likely. i don't know what your main symptoms are, but if it is urgency and frequency, have you dried anything like detrol or ditropan? I dont' know what I would do if I didn't have my detrol and my urised. i probably wouldn't be working if i didn't have those two medications. I don't know, I would just make sure you have weighed all of your options before trying those meds. maybe there is someone on here that has used them before than can give you some advice.

[melanie626]

What exactly is RISMO? He is talking cyclosporin too, but I want to get prego. I guess my IC is bad or just exhausting for me. I can hardly have sex and am so sick of being tired. My volumes for peeing are like 25-100 cc a void, sometimes a few hundred at night (due to be knocked out from my meds, ambien). In the last 2 yrs I have had more problems with pain, urethra spasms, burning etc. My volume under anethesia is like 700cc and I don't have hunners, so I am lucky that way, but as we know, 90% of IC's don't fall into that classic picture of years ago.

I am really working on the diet again, quit smoking, never have wine or ETOH, I have trialed ditropan and detrol in the past and detrol was OK, but no silver bullet. I take the uristat ( blue pills) as needed as pyridium makes me puke. It just sucks, for us as IC'ers....I mean I had at UTI and it took me like 2 weeks to fully feel better ( I was off work 3 days).

Thanks

[melanie626]

Duh, DMSO is Rismo, did it in my teens, never worked, tasted garlic in my mouth and hated them, ouchie. I will keep asking.

[Lynn15]

wow, you have tried a lot. the dmso is painful, and not my favorite. i hear you on the pyridium, that made me throw up too. maybe giving the diet more time will help. i have heard that elavil works wonders for some, but the weight gain is a problem for many. I take it and am fortunate not to have that problem, but i am not sure how much the elavil is actually helping me. i hope that you are able to find something that helps you. you deserve some relief.

[melanie626]

Thanks Lynn-
I am hopefull- I just want to feel more normal again, the last few years have been tough, and I am newly married and my poor hubby!

Many thanks

[mtn123]

My new doctor didn't procede since I had such a bad experience with urethra pain. 5 years ago they ran a scope to take a look. I can't try any of these treatments due to the urethra irritation. I would use precaution, for male people with IC. I didn't have the urethra issues until they used the scope. Now it could be the urethra problems would have come anyway, but I have not been the same since they used the scope. I regret doing that and believe it did cause more problems, and it certainly didn't help. Not much male specific info out there on IC, but these types of procedures can make things much worse even if the medicine hits the bladder and has a positive effect.