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New to this web site. Saying hello & my story looking for feedback

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  • New to this web site. Saying hello & my story looking for feedback

    Hi guys! My name is Heather and I just joined this site and am so thankful I have you all at my fingertips because no one around me knows what I go through. I was diagnosed with IC in Spring 2007 - just turned 19. I am 23 now and still fighting but staying strong. I can’t stress how much the diet is a huge factor with me and IC. I started a STRICT IC diet for about 3 years and then my doctor (who is amazing - Mount Kisco Medical Group - Poughkeepsie NY - Dr. Verhost) told me to start introducing foods back into my life. And so I did gradually of course – chocolate, SAUCE, olives you name it I ate it!

    I want to say about 6 months later i had that 'acid burning urine' and man did that hit me hard right to my heart. I couldn’t believe i went 10 steps forward then 10 steps back. So I started my diet again, strict but notttt that strict like I did in the past. This is the main reason why I need others input. I go through this cycle where I'm strict with the diet and then a few weeks later i realize - wow no flare ups - and i start eating 'bad’ again because I think I’m okay at the moment. But then BOOM! As some of you know flare ups begin, I cry at night and I just feel disgusted with myself yet again because I know it’s might fault. Just recently on June 27, 2011 I saw my doctor for my yearly check up and he said to go back on the diet (because we know it works) and I have been flare up free since. HOWEVER, for example just today I ate olives, cheeses and sausage. I know if I eat too much 'bad' stuff in a row I will get a flare up... (learned you are what you eat) so I have been keeping track of what I eat so I don’t overdo it... I just know when the next flare up comes how depressed I get because I know I do it to myself Not following the IC diet perfectly – any advice would be great!

    I take Hydroxyzine (Atarax) 25mg and a Macrobid 100mg once a night (Elmeron made my lips blue and my hair was falling out so I had to stop it). I always take 2 Proced if a flare up is so bad throughout work or class and without this pain reliever I wouldn’t know where I’d be. My thing with medication is - if and when I do miss a dosage at night, a flare up comes almost immediately in the morning and last for about 5 days I feel at times that I will be stuck on this medication forever and that all it is it masking the pain and I don’t know if that’s a good or bad thing.

    Also stress is a HUGE factor in my flares and I am able to realize it but only after the fact (if I cry about my grandpa who is dying slowly or graduate school stressors - I get hysterical at times and the next morning I’m in horrible pain)! I have learned through bio-feedback that I hold my stress down there but haven’t found a way to stop it. I need some advice on what 'stress management' truly means, examples, what works for others, what to do and how to maintain it because I am at a loss.

    OK I'm done so far… Again I am so excited I found this site (a little teary eyed with excitement actually) so I'm about to read what others have to say. I look forward in talking to you all soon and thanks for any feedback and of course for listening!

    -Heather

  • #2
    I'd just like to say to the IC Network family. I know you'll find a lot of information and support here.

    Sending warm healing thoughts,
    Donna
    Stay safe


    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

    Have you checked the ICN Shop?
    Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

    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.
    [3MG]

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

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    • #3


      Hello... I'm glad you found this site. For me it has been an incredible resource and the support is amazing. I've posted about all different questions and vents related to IC and have gotten wonderful advice and support.

      If the diet worked for you then that is so great! I think it's normal to fall down once in a while. Give yourself credit for doing so well!

      I hope you get a lot of answers here. I too very easily flare from stress and sometimes it is instant. If I take an Ativan or Klonopin it calms my flares a little. They usually last one to two hours. Sometimes though I have long flares lasting for days, but those are my 30 minute flares. (going every 30 minutes) My stress ones often cause 5 minute flares.

      My PT therapist told me to deep breath by laying down with my hands on my stomach and breathing slowly in and out. Actually I hate doing it but it is supposed to help with managing stress. For me, journaling is very helpful and so is mild exercise.
      Frances

      Diagnosed: 2011 - have had symptoms for over 20 years. Diagnoses so far: Overactive Bladder, then IC, and now Myofacial Pelvic Pain Syndrome.

      Medicines: For IC am doing PT, and will be taking Gabapentin, Ativan, Tramadol and Ambien. Ice packs and drinking vanilla shakes help. Foods that cause a flare, tomatoes, yogurt, coffee, soda, all sports drinks, and most teas. Take Verapamil, Naproxen (as needed), Omeprazole, Frova (as needed) and receive Botox shots(every three months) for migraines. For allergies I use Claritin and Flonase. (Feel free to ask me any questions about meds.)

      Other conditions: Migraines, allergies, mild IBS.


      "If you believe, you will receive whatever you ask for in prayer." (Matthew 21:22)

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      • #4
        Hi Heather!! Diet is part of my treatment plan too. I have also added many things back into my diet. I do not eat more than one iffy food at a time though. If you don't already use it, try Prelief with your iffy foods. I hope this site helps you as much as it did me. Feel better soon!

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