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Re: IC is back after bladder removal
Hi neohioic,
Thank you so much for responding to my post. I’ve been dealing with “acute” IC since 2014 but really since the age of 12 but never diagnosed ( I’m now 57). I am going for a surgical consult with a urologist in July but really don’t know if this is an option to choose after reading so many stories of failure to heal the IC. Yes, I have hunners ulcers, they get fulgurated and come back and the fulgaration / hydrodistention only seem to aggravate things. I do daily instillations as necessary, a good week I can do 3 ( only because I am paying out of pocket for the instills and doing them everyday is too expensive for me) so I try to reserve those for the times I’m so sick, nauseous and in pain that I can’t function. I can’t believe there aren’t any better answers out there ! I can’t work but have been denied disability of course so really am running out of hope. I haven’t even met a “ live”person with this awful illness to talk to and I am really struggling to figure out how to post here and “threads”;because I am not very computer savvy��anyways, once again thanks for responding to me, I only know you did due to an email I received, I haven’t found the post yet! I pray you make the right decision for yourself and feel better ,
Love and prayers,
DonnerS
Hi neohioic,
Thank you so much for responding to my post. I’ve been dealing with “acute” IC since 2014 but really since the age of 12 but never diagnosed ( I’m now 57). I am going for a surgical consult with a urologist in July but really don’t know if this is an option to choose after reading so many stories of failure to heal the IC. Yes, I have hunners ulcers, they get fulgurated and come back and the fulgaration / hydrodistention only seem to aggravate things. I do daily instillations as necessary, a good week I can do 3 ( only because I am paying out of pocket for the instills and doing them everyday is too expensive for me) so I try to reserve those for the times I’m so sick, nauseous and in pain that I can’t function. I can’t believe there aren’t any better answers out there ! I can’t work but have been denied disability of course so really am running out of hope. I haven’t even met a “ live”person with this awful illness to talk to and I am really struggling to figure out how to post here and “threads”;because I am not very computer savvy��anyways, once again thanks for responding to me, I only know you did due to an email I received, I haven’t found the post yet! I pray you make the right decision for yourself and feel better ,
Love and prayers,
DonnerS
I live in Indiana and my urologist at this time is Dr Teresa Beam who has many patients with IC. I left my last urologist because she said there was nothing left to try and the one before that who I had been seeing for at least 10years said I couldn’t have IC because it’s”too rare”. I have run the gamut of meds also but have not heard of naltrexone and will def google it. Yes I have a compounding pharmacist who makes my Valium suppositories and mails the ingredients needed to make my instills. I mix them on my own now since insurance no longer covers anything and it’s cheaper to make the cocktail myself. However, marcaine is now unavailable, lidocaine 2% just became “reavailable”and sodium bicarbonate was unavailable for so long I now make my own at home! The Valium suppositories do help with bladder and urethral spasms but not with the hunners ulcer pain. Besides feeling all this pain it is very challenging to deal with all the medical and insurance related issues that goes along with disease, esp the financial part. Thank you so much for responding, it’s nice to not feel so alone with the illness. Good luck with the new integrative doctor, I hope you get some positive suggestions!
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