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Anyone have this done? I have IC and have tried everything.....anyone
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I am blessed to have an Indiana Pouch now
IC since childhood, finally diagnosed at 31 yo
PFD/Pelvic Pain,SI joint and LBP
Low Back Pain s/p spinal fusion at 19 with more nastiness in back
Hydrodistension 2001, 2005, 2011 w capsacian, 2011 with botox/ super pubic tube
Interstim trial and removel 2002,C-Section 2007 and 2010, Post Partum Depression, post partum hypertension, Idopathic hypothalmic amenorrhea
Radical Cystectomy with Indiana Pouch 2/3/12--->multiple complications and revision of ureters in pouch due to a giant ball of scar tissue in 8/12, occasional pylo, L kidney small and scarred, low flow
Hysterectomy 2/3/12 w one ovary removed
Dry Eyes
L radical nephrectomy 1//3/14 after a long "what if " the conversation, kidney working 4 %, path said full of absesses
Still have issues, still take meds.
I have worked some, been doing pilates, just got a post masters in nursing, learning to pace myself.
Learning things I can't do, learning things that I need to take a LONG time to master and regain myself, but mostly just so happy to be bladder free.:
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I have had over 40 hydrodistentions in my 36 years with IC, with the last one in October of 2009 --- I'm 17 months out from that one and still doing well.
DonnaStay safe
Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf
Have you checked the ICN Shop?
Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.
Patient Help: http://www.ic-network.com/patientlinks.html
Sub-types https://www.ic-network.com/five-pote...markably-well/
Diet list: https://www.ic-network.com/interstitial-cystitis-diet/
AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/
I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you. [3MG]
Anyone who says something is foolproof hasn't met a determined fool -
Capsacian is actually used to treat stomach ulcers, so who knows? Some docs actually advise stomach ulcer patient to add it to their food in the way of cayenne pepper. How it affects the bladder??? Don't know and really don't want to be the guinea pig. Please let everyone know how this comes out, would be interesting.Comment
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Capsacian is sometimes used in bladder instillations. It's not widely used, but has been reported to be helpful for some ICers in relieving pain.
DonnaStay safe
Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf
Have you checked the ICN Shop?
Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.
Patient Help: http://www.ic-network.com/patientlinks.html
Sub-types https://www.ic-network.com/five-pote...markably-well/
Diet list: https://www.ic-network.com/interstitial-cystitis-diet/
AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/
I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you. [3MG]
Anyone who says something is foolproof hasn't met a determined foolComment
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capsascian
Kinda at the guinie pig stage. According to the new AUA algorythem I am living life in Stage 5 (expiramental) treatments. I am on a boatload of stuff with fair to poor control and so the hydrodistension with capsacian was discussed. I have had 2 hydros in the past with no improvement so no idea why I am putting myself through this other then I am sick of this disease and the profound affect it has on my life.
If anyone has had it done with capsasian, let me know.
Melanie
P.S.- the theory is the hot pepper helps to deaden the nerves that are icky and hyperactive in IC....they use it alot in general for chronic pain.I am blessed to have an Indiana Pouch now
IC since childhood, finally diagnosed at 31 yo
PFD/Pelvic Pain,SI joint and LBP
Low Back Pain s/p spinal fusion at 19 with more nastiness in back
Hydrodistension 2001, 2005, 2011 w capsacian, 2011 with botox/ super pubic tube
Interstim trial and removel 2002,C-Section 2007 and 2010, Post Partum Depression, post partum hypertension, Idopathic hypothalmic amenorrhea
Radical Cystectomy with Indiana Pouch 2/3/12--->multiple complications and revision of ureters in pouch due to a giant ball of scar tissue in 8/12, occasional pylo, L kidney small and scarred, low flow
Hysterectomy 2/3/12 w one ovary removed
Dry Eyes
L radical nephrectomy 1//3/14 after a long "what if " the conversation, kidney working 4 %, path said full of absesses
Still have issues, still take meds.
I have worked some, been doing pilates, just got a post masters in nursing, learning to pace myself.
Learning things I can't do, learning things that I need to take a LONG time to master and regain myself, but mostly just so happy to be bladder free.:Comment
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