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  • L. Thomas
    replied

    Glad you are here. This is a wonderful place. If you have quesitons, I'm sure someone can help you. Keep posting.

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  • topcop229
    replied

    I ditto what Carolyn said. Never hesitate to ask any questions you may have here. The great thing is that some of the IC'ers are also nurses, so sometimes they can bring a more clinical view to things and explain things a little better.
    Diet is key! It's really not fun, but you will probably feel much better once you get that going.
    Good luck and I look forward to seeing you around!!

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  • Berkshire Road
    replied
    First of all,

    You've come to the best place in the world to get information and support, and just to vent when you need to. This is a community filled with beautiful souls who all have two things in common: We care about each other, and we have IC.

    I know it's a scary diagnosis, but don't get too worried. There are a lot of excellent treatment options. Sometimes it takes time for doctor and patient to come up with the right combination and balance of treatments. Many, many patients go into remissions that can last for years. Most of those people stop posting on the boards, so the one downside of this forum is you get a somewhat skewed view; most of us here are still struggling, but that isn't a real-world snapshot of people with IC. Just keep that in mind, ok?

    The IC diet is not all that complicated: Just print out the list of foods from the IC Handbook on this site, and post it on your fridge. You'll probably want to avoid eating out for a little while, so you can be sure what you're consuming. I say it isn't complicated, but it is hard -- there's a lot you have to give up, at least at first. I, like everyone else, urge you to stick to it as strictly as you can. It can make a huge difference. And any time it's driving you nuts, just post and we'll try to help and encourage you. Also, drink a lot of water. You probably don't want to go to the bathroom any more than you already are, but drinking water does two good things: It dilutes your urine so it's less acidic and less irritating to the bladder; and it fills your bladder which actually makes it easier to void. For most people, anyway.

    It's a good idea to get yourself to a pain management clinic or practice. I can't get by, with my pain level, without narcotics, and a lot of urologists are reluctant to prescribe them. It's not necessarily that they are against them, but as my uro-gyn explained to me, it's not their area of expertise, and they don't feel comfortable figuring out dosage adjustments and suggesting combinations. As my dr. said, "I just don't know enough to feel that it's safe for me or my patients for me to do the pain management." There are also alternatives to narcotics; but pain management is a very important aspect of treatment. Pain is a stressor on the body, and IC symptoms tend to get worse when we're stressed. Plus, who really wants to be in more pain than they have to?

    I urge you to spend a lot of time on this site, esp. the Patient Handbook, because the more you know about your condition, the better you will be able to handle it.

    Never hesitate to poste a question, no matter how dumb you think it sounds! That's one of the things we're here for, to exchange information. And if there's anything you feel shy about posting publicly, you are very welcome to PM me. Nothing embaresses me anymore!

    I wish you all the best on this journey that you have just begun.

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  • bamafan
    replied
    Thank you all for replying to m questions. I am new at this and am trying to get started on the diet but I am confused and not sure what to do. The doctor put me on Elimron and I had a reaction to it so I have to wait one more week before starting it back. I have had one RIMSO treatment with many more to go.

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  • leelee88
    replied
    Welcome...
    There is a lot of good tips in the IC handbook..And meme is right the diet has helped me alot...Well I wanted to welcome you and if you need anything just ask

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  • meme
    replied
    Are you following the IC diet? It really does help w/ the pain and urgency/frequency. Also, heating pads on the abdomen are nice, and if I'm really bad I take a hot bath and just soak. Try not to push yourself too much, I find that makes my flares much worse. Take time to yourself, especially if you're feeling bad, don't feel bad about taking it easy, its the best relief. Hope you feel better!!!

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  • Roxie2007
    replied
    HI! Welcome! This is a great place to find answers to questions, advice or just to vent.
    Seems we all here have or have had lots of pain with IC. It's sure not a fun thing to have! What has your dr. recommended so far? Have you had the tests already? Azo is a great bladder pain medication that is over the counter.......have you tried that yet? Roxie

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  • trekker
    replied
    Welcome to the forum bamafan! Sorry to hear about the recent diagnosis, but just trust that all will be well.

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  • bamafan
    started a topic newly diagnosed

    newly diagnosed

    I am 35 and been suffering for quiet a while, thought it was prolase but found out at the first of Feb 2007 that it was IC. I am very scared and wondering if anyone could give me some advice on how to cope with the pain?
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