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Has anyone had one.......
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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 had one a very long time ago. I hated it, I made them take it out before they wanted to. It was causing my bladder to constantly spasm. We are all different, some people do not have that problem. -
Hi
Judith,
Can you and I talk some more about your story, or is your story on the boards? I really need to talk to someone. I got an idea today from an MD to try nephrostomy tubes vs SP to totally divert the urine to see if it helps my pain. I know it will help my u/f/spasms but it is that phantom pain they talk about...and complications that scares me. I get lots of people with cancer and offer to talk but this is so different.
ThanksI 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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I have had my suprapubic catheter surgery on November 9, 2010 so almost a year now.
It has it's pros and cons about it. It looks like I may has this for a good majority of the rest of my life.
If I can halo you an any way if you need questions answered or just some moral support from someone who has been before and during, sorry can't help with the after....
Email me anytime at
[email protected]
KarenComment
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karens225, it might be helpful to someone if you were to post a brief summary of your experience.
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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I could do that if someone would like to hear my story. I have not had a very good experience with this, my story is more like a horror story. I have had a ton of pain etc.
If any would like to hear my story. I'll be more than happy to share...
KarenComment
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Re: superpubic catheter
Karen, how are you doing today? My wife just cannot go on any longer. She was diagnosed 8 years years ago. She has been treated by many great doctors including doctors at Hopkins - and nothing has helped the pain. We are wondering if the SP catheter could give her a break.Originally posted by karens225 View PostComment
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