Katierose
Registered: Aug 19, 2012
Posts: 2
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Posted Aug 20, 2012
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#1
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Hi everyone,
I stumbled across this forum whilst looking for answers and treatments from my cystitis.
I am currently in hospital with UTI and stoma infection, I have a mitrofanoff diversion due to being in retention for 3 years.
I've suffered with cystitis for 18 years, it started when I was just 3 years old. I have the symptoms for both BC and IC, I've tried talking to the doctors but they never seem to listen.
This is my 20th course of antibiotics this year, sometimes they give me 2-3 lots at a time, my immune system is completely ruined from them all and as soon as one infection clears another one develops.
It's becoming unbearable now, the pain goes all the way down my urethra and I have constant cramps, as soon as my drink reaches my bladder it bleeds and burns. It's making my life miserable.
I start uni in 2 weeks and I'm hoping that something can be donebefore I'm sent home. I've looked into cystostat and really want to ask for it but I'm worried they'll just shoot it down and I'll beleft in agony.
Sorry I'm not usually a moaner, but I'm sure many of you know and understand how nasty it can be!
Look forward to hearing from you all,
Katierose x
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jeananne
Registered: May 9, 2009
Posts: 160
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Posted Aug 20, 2012
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#2
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Hello new member. Its good to know that people do find this web page. Sometimes it does help, simply by knowing your not the only one with these terrible bladder problems which doctors do not seem to have a handle on. I have had chronic cystitis for years and I think in the end the antibiotics have a lesser effect. If your in hsopital, a good chat with the consultant is called for. I was told 2 years ago "we must get to the bottom as to why you keep getting this" They never did. Good luck, hope you get the right help for you
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Ashdown
Registered: July 6, 2012
Posts: 17
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Posted Aug 20, 2012
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#3
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Dear Katie Rose
I am so sorry you are having such a difficult time with your bladder infections and bladder pain.
Have you thought of seeing an alternative practitioner to help you with your bladder infections or an acupuncturist.
Many people have used alternative practitiones on these boards and they have helped their bladder infections.
If you would like more information on the ones I have heard of etc please do email me privately.
I am so sorry you are in so much pain and hope you can find some relief soon.
Keeping going.
Take care.
Ashdown
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JillB
Registered: Dec 19, 2011
Posts: 115
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Posted Aug 20, 2012
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#4
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Hi Katie Rose
You poor thing – this is just awful for you and it sounds as though antibiotics are no longer effective. Are your lab reports showing lots of resistances? The amount you are being prescribed sounds way over the top. Ashdown’s advice to perhaps seek some gentler natural alternatives is spot on. Acupunture and Chinese herbs are very effective in dealing with infections, but you do need to find someone highly qualified in this field. Some people combat infections with Uva Ursi drops. D-Mannose is another natural product that might help . These you can buy online. Are you having any gut problems? If so you might consider restricting sugars and yeasts.
There is a lot of information on here and I hope that through the experiences of everyone here you can find a treatment that works. I am currently pursuing the holistic approach through Chinese medicine/acupuncture and have managed to steer clear of antibiotics for the past 7 months in spite of chronic infections.
Wishing you well
Jill
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Katierose
Registered: Aug 19, 2012
Posts: 2
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Posted Sept 3, 2012
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#5
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Wow, thank you all for your replies!
It's great to see that I'm not alone anymore and others understand how deliberating it all can be.
I'm going to enquire about acupuncture, is this done through a specialist or does any form of acupuncture help? Also going to cut down on sugar and yeasts to see if that does help (thank you Jill!).
I'm very resistant to antibiotics, the last time I was in hospital I was on three different courses, all at the same time because they didn't know which ones would work. I've had Cdiff where the antibiotics are sterilising me, and I keep getting thrush which seems to aggravate the bladder even more.
I start medicine in 3 days and still really struggling with sleep and pain from it, my stoma was bleeding all night for no reason, just keep thinking how will I manage but I know that I can't let it beat me.
Many thanks for all the replies, it's great to hear how some of you manage the condition so now I know there's hope for the future, hopefully the bad spell will pass soon.
Katie x
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