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  • Moving to Seattle soon/my success story

    My husband and I are moving to Seattle in a couple of months and I would love to connect with Seattle IC'ers. I was diagnosed 3 months ago and was in terrible pain. I had to go down from working full time to only one or two days a week and even then sometimes I would have to call out sick. I had been diagnosed by 2 docs and a Urologist. They tested me for UTI, yeast infection, kidney stones and cancer. I had gotten a CT scan and a cystoscopy. I had IC and I was devastated. My uro doesn't believe in pain meds so I dropped her and went back to one of the other docs who had also diagnosed me. My doctor actually has a very good friend with IC and is very familiar with the disease. She put me on Oxybutynin to stop bladder spasms and any urgency issues and started me on Amatriptalin for pain. I asked her about Nuerontin and Lyrica but she said that the Amatriptalin works much better for IC. I didn't hold out much hope because I didn't see how an antideppresant could help with pain but I took it anyway. She also prescribed me prydiam or "AZO" for burning and Hydrocodone for pain. She told me I needed to start the IC diet as well. I immediately started only eating foods from the "bladder friendly" list, I would not even try foods from the "try it" list until my symptoms improved. The diet through trial and error made me figure out that I couldn't tolerate preservatives w/o flaring. I cut out all prepackaged food and stopped going out for dinner. After a couple of weeks on Amatrptalin 50mg and the IC diet my pain was cut in half and I stopped flaring. The Oxybutynin had completely cured me of my bladder spasms and urgency. My doctor told me to go up to 100mg which I did and a couple of weeks after my pain was 90% gone. She said that the higher the dose the better it works. Most people are not on as high of dose as I am though, I guess a lot of people can't tolerate the side effects. The only side effect I have is feeling very sleepy about an hour after I take it, but I actually like that because it helps me sleep like a baby. I feel like I have my life back again, but it took some trial and error to get there. I am hoping I can find an IC support group in Seattle and would love to connect with fellow IC'ers.
    First diagnosed June, 2014 by MD
    Confirmed diagnosis July, 2014 by specialist Uro.

    Current medications:
    Amitriptyline 150mg
    Omeprazole 40mg
    Hydrocodone 10/325 as needed (4x day)
    Pyridium 200mg as needed (4x day)
    Armour Thyroid 30mg
    Diagnosed with IC, Acid reflux and Hypothyroidism. I have mainly urethral burning and pain as well as vaginal pain. No history of bladder infections and did not experience any symptoms of IC until June, 2014 when I was diagnosed. On an elimination diet, found that I do not tolerate preservatives well. I do not eat any prepackaged food unless it is organic and made w/o preservatives.
    God Bless, Julie

  • #2
    Re: Moving to Seattle soon/my success story

    Thank you for sharing your success. It's very helpful for those who are having a tough time hear from those who are doing well.

    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
      Re: Moving to Seattle soon/my success story

      Hi there, I live in Olympia.
      Diagnosed with IC in 2005, since then have been diagnosed with an unspecified autoimmune disease, with inflammation in my bladder, colon, left knee, left ear, left eye, lungs and pericardium. Argh!

      Medical research addict.

      Likes: hot baths and naps with cats

      Comment


      • #4
        Re: Moving to Seattle soon/my success story

        Originally posted by eyeliner128 View Post
        Hi there, I live in Olympia.
        Hi! We aren't moving until later next year, my husband grew up in Everett and is in the process of buying a bar in Seattle. If you don't mind me asking, what medications have you tried? Do you do the IC diet?
        First diagnosed June, 2014 by MD
        Confirmed diagnosis July, 2014 by specialist Uro.

        Current medications:
        Amitriptyline 150mg
        Omeprazole 40mg
        Hydrocodone 10/325 as needed (4x day)
        Pyridium 200mg as needed (4x day)
        Armour Thyroid 30mg
        Diagnosed with IC, Acid reflux and Hypothyroidism. I have mainly urethral burning and pain as well as vaginal pain. No history of bladder infections and did not experience any symptoms of IC until June, 2014 when I was diagnosed. On an elimination diet, found that I do not tolerate preservatives well. I do not eat any prepackaged food unless it is organic and made w/o preservatives.
        God Bless, Julie

        Comment


        • #5
          Re: Moving to Seattle soon/my success story

          It is absolutely exceptional that you went from diagnosis to remission in three months. I have been on these boards for, oh, five and a half years and have never heard of such success so quickly.

          I was diagnosed when I was 12, started Elmiron, Valium, Vistaril and Cymbalta. Was in remission from age 14 to 18. Then, following a laparoscopy for endometriosis, symptoms came back. I have tried well over twenty medications (antidepressants, antiepileptics, muscle relaxers, antihistamines, etc.) and find that the only one that truly helps is Valium. With Valium I can pee like a normal person, instead of only small amounts at a time. I use Uribel with flares for the burning, and it is so-so. I use Prelief with flares. I am taking Quercetin supplements, I think that is a great thing for all people with bladder conditions to take.

          I have tried the IC diet, and really didn't notice a lot of improvement. My personal theory is that there are MANY different kinds of IC. Some do well with diet, others it doesn't make a difference. I believe my IC is related to a larger autoimmune disease, because when I am sick (fever), my symptoms disappear.

          I am definitely not in remission, but I feel that I manage my flares well.

          Anyways, I am excited at the possibility of meeting another IC patient! My boyfriend lives in Seattle, so I am up there quite a bit.
          Diagnosed with IC in 2005, since then have been diagnosed with an unspecified autoimmune disease, with inflammation in my bladder, colon, left knee, left ear, left eye, lungs and pericardium. Argh!

          Medical research addict.

          Likes: hot baths and naps with cats

          Comment


          • #6
            Re: Moving to Seattle soon/my success story

            I'm in Bothell and work in Seattle. Maryjane1, how are you doing these days? I'm going to the doctor today to ask about medication. Are you still feeling well?
            Diagnosed June 2015 by symptoms, this flare lasted only 3 days, returned to normal diet
            Second flare August 2015, lasted 4-5 days, returned to normal diet
            Third and current flare Feb 19, 2016 (it's still going, about 85% better at the moment) Changed my diet.

            History:
            Frequent UTIs (Oh how I wish this IC was just another UTI, I could take antibiotic and be done with it!)

            Treatments:
            IC diet started 3/01/2015 (about 85% improvement)
            Started 10mg amitryptiline 04/09/16, I am up to 20 mg now (really helps!)
            Quercetin/Bromelain 1 capsule twice per day (really helps with my sinus allergies as well)
            Calcium Citrate 500mg day Magnesium 500mg day, D-mannose before and after sex to prevent UTIs
            MSM/glucosamine capsules daily

            Want to pursue: possibly Elmiron after I give amitryptiline a try
            PT if necessary

            Comment

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