Hi All...
I am at the point where these are my options. I have tried pretty much everything under the sun and the only things not tried are cyclosporin for a variety of reasons but mostly b/c I work in healthcare and am exposed to LOTS of stuff and I have a diabetic spouse and 2 kids under 4 and botox which my insurance won't cover and they don't know it would help.
So. My Uro likes diversion to ostomy and then if pain better in a year make a neobladder and cath that. I don't like the idea of leaving a dead empty bladder in there. Plus I get TONS of urethral pain/spasms and though nothing would be going out of it a)I still think it would get irritated b/c I do have pelvic floor issues and b) how would I ever know if I got bladder cancer etc since it is just this dead organ in there and c)like it is ever gonna be hooked up again. Give me a break. SO I would love to hear others stories.
I have weirdly good capacity on my last hydro.....and glomerulations but nothing spectacular, no hunners but my last hydro was with capsacian over 2 mo ago and I swear now little men have replaced my ground glass pain with little razor spikes they like to slash into my all damm day.
I get solid relief usually if not to flared from an instillation but alas it only lasts until I pee it out and if I have held it to long then my am all achey and angry inside because pee sat inside to long.
Please give me your stories ladies. I am not married to my Uro. I love him, he is in the IC world but I dont' necessarily agree on keeping a bladder I am not using around. Thoughts?
Thanks ladies, this is hell on earth and somethings gotta give.
Serenity to all.
Melanie
I am at the point where these are my options. I have tried pretty much everything under the sun and the only things not tried are cyclosporin for a variety of reasons but mostly b/c I work in healthcare and am exposed to LOTS of stuff and I have a diabetic spouse and 2 kids under 4 and botox which my insurance won't cover and they don't know it would help.
So. My Uro likes diversion to ostomy and then if pain better in a year make a neobladder and cath that. I don't like the idea of leaving a dead empty bladder in there. Plus I get TONS of urethral pain/spasms and though nothing would be going out of it a)I still think it would get irritated b/c I do have pelvic floor issues and b) how would I ever know if I got bladder cancer etc since it is just this dead organ in there and c)like it is ever gonna be hooked up again. Give me a break. SO I would love to hear others stories.
I have weirdly good capacity on my last hydro.....and glomerulations but nothing spectacular, no hunners but my last hydro was with capsacian over 2 mo ago and I swear now little men have replaced my ground glass pain with little razor spikes they like to slash into my all damm day.
I get solid relief usually if not to flared from an instillation but alas it only lasts until I pee it out and if I have held it to long then my am all achey and angry inside because pee sat inside to long.
Please give me your stories ladies. I am not married to my Uro. I love him, he is in the IC world but I dont' necessarily agree on keeping a bladder I am not using around. Thoughts?
Thanks ladies, this is hell on earth and somethings gotta give.
Serenity to all.
Melanie

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