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Amozena

Updated 1y ago

Looking for support and advice on living with Interstitial Cystitis

hi, my name is Anna. I was diagnosed with Interstitial Cystitis in 2017. I am interested to find people who have this chronic disease to learn how other people cope and what treatments work for you. I am also wanting to learn any food recipes that are helpful for your diet.

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LisaD

2y

šŸ™ šŸ’• šŸ˜„
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Channell

2y

Hi I have this as well, D mannose had helped my IC alot, increasing my water intake has helped also
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Channell

2y

Also I eat an anti inflammatory ( AIP) low oxlate diet
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Inoki999

2y

ICN diet to start ! Then slowly Re introduce foods on the try it list
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mynewfriend

2y

I started with 1 year of elmiron (a controversial drug choice now, but it helped). The ICN list helped guide me but I was never able to commit to the elimination diet process. Instead, I made note of what foods were irritants and to what extent. I found that I can eat most things in small portions as long as I don't eat multiple irritating foods often or in close succession. When we plan meals, we make sure recipes with my irritants are at least a day or two apart. I'm weary about this around my period especially. We're trying some substitutes for irritants - ex: soy and fish sauce - in recipes but I don't have a lot of feedback from this yet. I also increased my water and try to avoid soda. Also, taking frequent restroom breaks instead of waiting until I urgently need to pee helps. Making sure I don't wear pants that are too tight and that I'm not sitting for long periods without a break. Finally, when I have a bad flare up, I know my safe foods and stick to them. Hope that helps!
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Micah

2y

Aloe Vera supplements are better and safer than Elmiron.
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Preschool_Teacher

2y

Heating pad, diet and meds. The heating pad helps the spasms but the other two did nothing for me.Iā€™ve had ic since I was 18 and now Iā€™m 54.
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Lexigirl

2y

I bought & used the cookbook for ic until I learned what works for me.
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ChelseaJean

2y

Nortriptyline made a HUGE difference for me and my IC pain. Now I canā€™t be without it. Also if youā€™re desperate the IC diet does help, but it is very restrictive so I found it hard to stick with.
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Inoki999

2y

Where do I find the IC cookbook?
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Lexigirl

2y

I'd say try on Amazon or Google it.
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Preschool_Teacher

2y

Also no treatments have helped me and Iā€™ve had ic for 30 yrs. Please let me know if I can help in anyway. I like helping icers since thatā€™s about all I can do. Not medical advice

The content in this post is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

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