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  1. #1
    ICN Member
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    Oct 2017
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    Newly diagnosed and feeling completely overwhelmed

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    I was diagnosed just 2 weeks ago. The urologist knew right away I had IC once he did the cystoscopy/ bladder expansion.I have been dealing with bladder infections for 15 years. Feeling completely overwhelmed. My job as a sales agent keeps me on the road most days. I am now starting to work 4 out of the 5 days. Can only handle 10mg of Amytriptylene, at night. It helps me sleep however still up at least 4 times at night. Pressure, pain, urgency and frequency are all very present.I am on the toilet all day long. I am a 53 year old, overall healthy and active female. This has completely halted my life. Following the IC diet. Started Elmiron 8 days ago. Wondering about exploring Aloe Vera while taking Elmiron. Again completely overwhelmed.
    I had never heard of IC before my diagnosis. Friends and family also unfamiliar with this disease. I am trying to stay positive as I can't imagine not going back to feeling better and wanting to get out of my house. I tried to find a support group in my area however the person conducting this no longer does it. I am hoping that connecting with others that share the same suffering will help me cope. Thank you.

  2. #2
    Support Leader Julie B's Avatar
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    Mar 2000
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    Clarkston, Michigan
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    Re: Newly diagnosed and feeling completely overwhelmed

    to the ICN! I found this place about 20 years ago and the people here were critical in helping me learn quickly about this disease and find coping strategies that helped me. You are already following the IC diet. Remember also that stress can play a big role in controlling flares. Ask as many questions as you need to. You are never alone....sending you understanding hugs...
    Julie Beyer, MA, RDN
    IC Dietitian, Patient Advocate, Speaker, & Author


    Did you know that up to 94% of interstitial cystitis patients find some symptom relief when they change their diet, and that dietary modification is recommended as a first line treatment for IC? Check out the IC Food List to get started!

    Do you need a little more help understanding the IC Diet? Schedule a phone or video coaching session through the ICN Store today.

    You can also learn more while supporting the ICN message boards by clicking on these book covers and buying the Confident Choices books from the ICN Store:

    ........ ........


    Other IC Diet Resources:

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    For Health Professionals: Continuing Education About Interstitial Cystitis and Diet
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    Confident Choices IC Diet Blog
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  3. #3
    ICN Member
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    Re: Newly diagnosed and feeling completely overwhelmed

    Thank you so much Julie for your kind words of encouragement and helpful tips. I need to remain positive even when faced with my many challenges right now. I appreciate you reaching out. Sincerely, JBT

  4. #4
    ICN Staff ICNDonna's Avatar
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    Mar 2000
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    Oregon
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    Re: Newly diagnosed and feeling completely overwhelmed

    Adding another to the ICN family. I'm glad you found us.

    Elmiron can take up to six months or longer to become effective so you may want to look at other treatment options along with it while you wait. There's a link in my signature below to the American Urology Association Guidelines for Treatment that I suggest you read.

    Since you were only diagnosed two weeks ago, and probably have only been on the IC diet for those two weeks, it may take longer for the diet to help. If it doesn't seem to be helping after another few weeks, I suggest you keep a diary, listing time of day, everything that goes in your mouth, urinary frequency and about how much, activities, pain levels. Then, when symptoms seem worse, you can go to the diary and look for things common to changes.

    My IC was diagnosed in 1975 (almost 43 years ago), and if I could only share one thing, it would be that most people with IC do have better times. It may take time to find what things are triggers and which treatment options work best for you, but most of us do, and most of us feel good most of the time.

    Sending warm healing thoughts,
    Donna
    Have you checked the ICN Shop?
    http://www.icnsales.com for US & Canada
    http://www.icnshop.com for all others

    Patient Help: http://www.ic-network.com/patientlinks.html

    Sub-types https://www.ic-network.com/five-pote...markably-well/

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/




    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
    [IMG]

    Anyone who says something is foolproof hasn't met a determined fool

  5. #5
    ICN Member
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    Re: Newly diagnosed and feeling completely overwhelmed

    Thank you Donna for your kind and reassuring words. You have no idea how this brings me great comfort knowing this is not a life sentence . I will continue to do research and try and find the remedies that will work for me.
    Greatly appreciated.

  6. #6
    Support Volunteer carole's Avatar
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    Oct 2009
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    Re: Newly diagnosed and feeling completely overwhelmed

    you have come to a great place where you can be free to share your struggles and learn from others. We have all been where you are so know this is a safe place to express all you are going through. I have had IC for 9 years now and I still remember vividly when I was first diagnosed. It is one of the most difficult times of my life. I never heard of IC before my diagnosis. I cried for months and then one day I say ok Carole you can let this bury you or you can do something about it. I chose to do something about it. I took control of my health and learned how to deal with this disease. Yes I know you are overwhelmed right now but I promise you it does get easier. For me diet was the most important thing. I also got a lot of relief from Uracyst bladder instills. I now eat a plant based diet and have found this to be very helpful for my health overall. We are all different so you will learn as you go on what works for you. Please feel free to PM me if I can help in any way.

    Carole
    Daughter your faith has made you well,go in peace, and be healed of your disease.(Mark 5:34)

    Tried:
    Detrol:only took one pill and it made me sick
    Elmiron:caused horrible pain(took 1 week)
    CystaQ:caused alot of burning and pain(only took one pill)
    Wellbutrin:only on it for three days as it caused alot of bladder pain
    Elavil:Took one pill and it caused a flare that lasted almost two weeks. It was the longest flare I've ever had. Never again..ouch
    Prelief:made my bladder burn and feel tingly.

    Take:
    Uracyst:Started May 19 2011
    Enablex:take one pill daily with no issues
    Naproxen:for pain as needed
    Baking Soda with water:as needed and it's a God send. It brings down my pain within 20 mins.
    Venofer: Started April 2012 by IV for low Iron. I do not tolerate oral Iron so this is the route I had to take.Does not bother my bladder but did have other side effects. I take Benedryl with each treatment to avoid side effects.
    Supplements:Whey Protein powder daily
    Dessert Harvest Aloe It has been helping alot but I can only take it every two days as my "die off" reaction has been severe.

  7. #7
    ICN Member
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    Oct 2017
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    4

    Re: Newly diagnosed and feeling completely overwhelmed

    Thank you Carole for your kind note. It has definitely been a struggle however with a change in my diet as well as the bladder instillations and naturopathic doctor , I have found some relief. I pray that one day I have fewer symptoms. It truly has changed my life. Sincerely, Joanne

  8. #8
    Support Volunteer carole's Avatar
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    Oct 2009
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    1,107

    Re: Newly diagnosed and feeling completely overwhelmed

    glad to hear you have had some relief. Yes IC does completely change your life. It is a difficult disease to deal with. Glad you are seeking some natural alternatives I truly believe in pursuing this route.
    Daughter your faith has made you well,go in peace, and be healed of your disease.(Mark 5:34)

    Tried:
    Detrol:only took one pill and it made me sick
    Elmiron:caused horrible pain(took 1 week)
    CystaQ:caused alot of burning and pain(only took one pill)
    Wellbutrin:only on it for three days as it caused alot of bladder pain
    Elavil:Took one pill and it caused a flare that lasted almost two weeks. It was the longest flare I've ever had. Never again..ouch
    Prelief:made my bladder burn and feel tingly.

    Take:
    Uracyst:Started May 19 2011
    Enablex:take one pill daily with no issues
    Naproxen:for pain as needed
    Baking Soda with water:as needed and it's a God send. It brings down my pain within 20 mins.
    Venofer: Started April 2012 by IV for low Iron. I do not tolerate oral Iron so this is the route I had to take.Does not bother my bladder but did have other side effects. I take Benedryl with each treatment to avoid side effects.
    Supplements:Whey Protein powder daily
    Dessert Harvest Aloe It has been helping alot but I can only take it every two days as my "die off" reaction has been severe.

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