Interstitial Cystitis

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Hattie123
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Joined: Tue Jul 15, 2014 6:38 pm
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by Hattie123 on Thu Jul 17, 2014 12:11 am

Interstitial Cystitis

My daughter has severe IC. She has had several distensions and 12 bladder infiltrations. The latest procedure injected botox into her bladder walls. None of these procedures seem to help and she is in fairly constant pain.
Food and stress are particular triggers and she now has a very bland diet.
She has been on a multitude of strong medications and the latest include Palexia SR, Montelukast and Nitrafurantoin, amytriptiline.
She is only 22 and trying to finish her university course but her industrial year out was very stressful and made her worse.
Is there anything significant that we haven't tried. It is very hard for her to know that things can only get worse and that such strong medications are not stopping her pain. Her recent distensions showed that the cracks in her bladder walls are not too bad and she has little scaring so far. Her flow rate is reasonable although the botox has affected this making it harder to completely empty her bladder, although this is not problematic in itself.

BladderProblems
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Joined: Thu Jul 17, 2014 8:15 am
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by BladderProblems on Thu Jul 17, 2014 8:31 am

Re: Interstitial Cystitis

Dear Hattie123,
Has your daughter tried a GAG-layer replenishment therapy yet? That kind of therapy mends the inner bladder wall and should significantly relieve the pain. She should talk to her specialist doctor about the possibility of this therapy, if she hasn't tried it yet.
I hope she gets better soon.

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Debbie Gordon
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Joined: Mon Nov 11, 2013 1:33 pm
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by Debbie Gordon on Thu Jul 17, 2014 11:42 am

Re: Interstitial Cystitis

If you haven't already heard of them she may find it helpful to look at the COB (Cystitis and Overactive Bladder Foundation) http://www.cobfoundation.org/
Debbie Gordon
Independent Specialist Physiotherapist in Bladder & Bowel Health

http://www.talkhealthpartnership.com/on ... gordon.php

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Ann Moore
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Joined: Mon Jul 08, 2013 2:26 pm
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by Ann Moore on Thu Jul 17, 2014 1:04 pm

Re: Interstitial Cystitis

What infiltrations has she had? She may need to try another kind? Some say a glueten free diet helps?
Ann Moore
Clinical Nurse Specialist in Urology

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