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bunnymum22

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Posts: 1
Reply with quote  #1 
Hi everyone 

I am a new member to this site, but have had Interstitial Cystitis for many years - I experienced bladder symptoms and problems as a young child but they were never investigated until I left university when things were becoming a major problem.  I have had various surgeries and am having the Interstim (sacral nerve modulator) fitted in August after a very successful trial of it. 

Anyway, the reason I am writing is because I am having some real problems with my bladder at the moment that I cannot figure out.  I am due to be married at the end of July, and am quite concerned I won't be able to make it out of the house, let alone walk down the aisle!  Hence why I would be grateful for some advice - I have tried to contact my local hospitals (I am split between 2 specialists just because one hospital does not provide the more intense/severe treatments, whereas the other one does) but have had no luck getting through to anyone.  I have emailed my consultants secretary and am awaiting a reply. 

My problem is this -

Whenever I have eaten or drunk (the majority of the time it is when I have eaten), I develop within minutes acute "UTI" symptoms (burning pain when passing urine, an extrem urgency that feels like I will wet myself if I don't go, severe frequency which mostly is dribbles, urethral pain and bladder pain).  The only way I seem to be able to "manage" this is by drinking lots and lots of water, and withing a few hours my symptoms ease, but do not disappear completely (it does eventually disappear).  

These symptoms started on the odd occasion, as I am quite good at avoiding the "bad IC foods" and only ever drink water anyway.  However, it is now progressing to the point where it is everytime I eat or drink, even today I experienced it after drinking a load of water.  During these times I do not have an actual UTI.  

I am at a loss as to what to do.  I am currently on no medication specific for my bladder (because nothing is working, I have very recently had a hydrodistension and my next Interstim surgery is not too far away) and am following a very simple diet.  I have previously had indwelling catheters and did self catheterise for a period of time (but had to stop due to the increased rate of infections and actually it was so painful to do).  I have become quite nervous of eating out anywhere because it is so embarrassing to have such a bad flare and continually run to the toilet. 

Any advice and tips are appreciated!

Thank you in advance. 

Lauren 

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Emily27uk

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Posts: 4
Reply with quote  #2 
Hello
I have been coping for the last 9 months on a total caffeine free diet and it has made things better. My doctor advised avoiding anything that can cause dehydration including all tea and coffee (even decaf), chocolate, alcohol and salty foods. I am mostly eating chicken and chips and sticking to white food with little flavour. I also drink lemon water by the bucket load, at least 4 litres a day.
I do have the odd flare up which I control with over the counter cystitis packets, which I cannon ball in 1 day, it works 75% of the time. Maybe try that the day before your wedding, even if you are symptom free.
The way my doctor explained it was that my bladder was allergic to my urine so keeping it as clear as possible is a must.
I hope that helps and best of luck.
Emily
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