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  • New-intro, whatever

    I recently received a diagnosis of IC, after several years of problems and seeing 4 different Uros. My dx came after a cysto/hydrodilation. I guess it's a long story, but I'd had other tests before that by other docs, but it wasn't until this guy that he took detailed histories, IC questionairres and used that plus the cysto for the dx. One Uro in the past put me on Detrol which didn't work. Another more recently tried me on Flomax which also didn't work. I see my current Uro (who is great, BTW) to f/u my cysto and decide on treatment on the 31st. We'd hoped perhaps the hydrodilation alone may help-it's been 1.5 weeks-so far no change.

    I think part of the problem with my diagnosis is that I don't have the severe pain that most of you have. I have frequency terribly, and discomfort in the pelvic/bladder area when I "have to go" (which is often), but no discreet pain, no burning when I pee, etc. I also tend to retain urine, not always, but have retained anywhere from 200-350cc urine.......which is funny cuz during a 48hour voiding diary half the time I was lucky to even pee that much each time, haha.

    My big concern, and for my uro, is treatment-I have a few other problems for which I am on several other medications, and when I talked to him first, he seemed hesitant to mess with meds, since some of what I am on are related to meds sometimes used for IC (makes me wonder how bad off I'd be if not on all these meds). I have fibromyalgia, rheumatoid arthritis, IBS, but am also bipolar. I take several meds for my bipolar disorder which I think is half the problem, because no one wants to touch those. He mentioned a couple things, which I guess we'll talk more about next week, but I am trying to learn as much as I can before then, so I will be well informed at my visit.

    I'm sorry this is so long. I guess I just have a lot going through my head. Another thing-my IC does not seem to be a flare kind of thing. My fibro flares, my RA flares, but I pee a gazillion times a day no matter what. The only thing that makes a difference is caffeine which makes it worse, but even without it, I still practically live in the bathroom. I'm a nurse, and it's not always easy to find time to use the bathroom, although I don't work in a busy hospital which is a lucky thing I guess.

    Thanks for listening to me babble.
    My dx: RA, Fibro, Interstitial Cystitis, Bipolar Type 2, Pelvic Floor Dysfunction, IBS
    My meds: MTX, Leukovorin, Humira, Prednisone for RA flares, Celebrex, Orphenedrine, Tramadol as needed, Wellbutrin, Lamictal, Lyrica, Trazodone, Nexium, Singulair, Atarax, Elmiron, Provigil, and Macrobid/Trimethoprim (rotate monthly). I also take a multivitamin, Magnesium, Calcium supplements, fiber supplements, probiotics, and vitamin D.
    Current treatments: bladder instillations


    Come play with me on Facebook!

  • #2
    Hello and to the ICN...

    IC affects all of us in so many differant ways..Its a very strange disease..
    I just wanted to welcome you and dont ever think you are just babbling we are here to listen and try to help when we can...

    Ronda
    Hugs
    Ronda

    ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


    Link to Patient Handbook:
    http://www.ic-network.com/handbook/

    Diet Reference Sheet:
    http://www.ic-network.com/diet/icndi...tsheet0909.pdf

    Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

    Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

    Meds I have Tried:
    Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
    Lexapro< Bad reaction to this med!
    Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

    Dx With IC in Nov 2006 with Hydro/Cysto
    Hydro/Cysto Caused Bladder to Rupture.

    Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



    ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

    Comment


    • #3
      Thanks for your support. I guess I am just frustrated. In one way I am glad to finally have a diagnosis and have someone take me seriously after more than 4 years of problems! But now that I have a diagnosis, I want to hurry-hurry-hurry and do whatever I can to make things "better". I know there's no cure, but I also know that it can be managed......and that with my medications, there may be "issues". My Uro told me right off, that it would be a concern, so I am anxiously awaiting my appointment on Thursday.
      My dx: RA, Fibro, Interstitial Cystitis, Bipolar Type 2, Pelvic Floor Dysfunction, IBS
      My meds: MTX, Leukovorin, Humira, Prednisone for RA flares, Celebrex, Orphenedrine, Tramadol as needed, Wellbutrin, Lamictal, Lyrica, Trazodone, Nexium, Singulair, Atarax, Elmiron, Provigil, and Macrobid/Trimethoprim (rotate monthly). I also take a multivitamin, Magnesium, Calcium supplements, fiber supplements, probiotics, and vitamin D.
      Current treatments: bladder instillations


      Come play with me on Facebook!

      Comment


      • #4
        Greetings from another nurse. I know how hard it is to pee and take care of patients--the "hey, oops let me finish that BP in a minute. I'm about to wet my pants" feeling. I hope they can find a combo of meds that will help you out and that your uro will take that step. You are never babbling on here by the way, that is what we are here for.

        Hugs,
        Barb
        (Babs passed away in April 2009. We honor her memory and remember her fondly. - Jill O. ICN President & Founder)

        [SIZE="1"]Proud mama of a gift named Lindsey who taught me through her autism what is important in life:angel:
        :angel: IC Angel Volunteer Coordinator :angel:
        :) Contact me via PM or e-mail if you would like to help
        I have learned all about life in 3 words: It goes on! :D--Robert Frost
        PCOS 7/85
        RSD 7/94 :headbang:
        Endometriosis 9/98 :toilet:
        Antiphospholipid antibody syndrome 9/99
        Kidney stones--too many to count
        Factor V Leiden mutation 10/02
        IC 6/03 :evilsmile
        Deep Venous Thrombosis and Cellulitis 12/05 :loco: DVT and Greenfield Placed 3/14/08
        "Spirit is an invisible force made visible in all of life"--Maya Angelou
        "Ohana means family--no one gets left behind or forgotten." Stitch[/SIZE][/SIZE][/SIZE]

        Comment


        • #5
          Originally posted by Babs RN View Post
          Greetings from another nurse. I know how hard it is to pee and take care of patients--the "hey, oops let me finish that BP in a minute. I'm about to wet my pants" feeling. I hope they can find a combo of meds that will help you out and that your uro will take that step. You are never babbling on here by the way, that is what we are here for.

          Hugs,
          Barb
          LOL, nurses are supposed to be "notorious" over how long we can go without peeing, well I prove that wrong! What was bad was when I was a CHN, I knew where every bathroom was in town...not supposed to go in a patient's home, but if stuck there for a while, sometimes I just had to! Then being in the ICU, stuck in a room with someone on isolation, trying to get everything done at once....eesh. Now I am in in a clinic, more casual, but only one bathroom for many, many employees. Frustrating!
          My dx: RA, Fibro, Interstitial Cystitis, Bipolar Type 2, Pelvic Floor Dysfunction, IBS
          My meds: MTX, Leukovorin, Humira, Prednisone for RA flares, Celebrex, Orphenedrine, Tramadol as needed, Wellbutrin, Lamictal, Lyrica, Trazodone, Nexium, Singulair, Atarax, Elmiron, Provigil, and Macrobid/Trimethoprim (rotate monthly). I also take a multivitamin, Magnesium, Calcium supplements, fiber supplements, probiotics, and vitamin D.
          Current treatments: bladder instillations


          Come play with me on Facebook!

          Comment


          • #6
            I think we have walked in the same paths, or bathrooms for that matter. I worked as a clinic nurse, and have done ER, and ICU(and about a million other things too but those are some of the biggies). I now work in Home Health, but luckily I am the DON so I am in the office most of the time. The days I make home visits though, I know every potty between here and there on every highway. That isolation rooom thing is true too. I don't know how many times I have been drenched with sweat trying to get everything done, holding my pee in isolation gear knowing suiting back up would stink if I left to go potty! I used to have a nurse's bladder and could hold it for a whole shift. Now, NOT!

            Again welcome and let me know if I can answer anything. There a few of us nurse types around here too that can give ya some tips about working with this lovely illness in an environment that is not too IC friendly.

            Hugs,
            Barb
            (Babs passed away in April 2009. We honor her memory and remember her fondly. - Jill O. ICN President & Founder)

            [SIZE="1"]Proud mama of a gift named Lindsey who taught me through her autism what is important in life:angel:
            :angel: IC Angel Volunteer Coordinator :angel:
            :) Contact me via PM or e-mail if you would like to help
            I have learned all about life in 3 words: It goes on! :D--Robert Frost
            PCOS 7/85
            RSD 7/94 :headbang:
            Endometriosis 9/98 :toilet:
            Antiphospholipid antibody syndrome 9/99
            Kidney stones--too many to count
            Factor V Leiden mutation 10/02
            IC 6/03 :evilsmile
            Deep Venous Thrombosis and Cellulitis 12/05 :loco: DVT and Greenfield Placed 3/14/08
            "Spirit is an invisible force made visible in all of life"--Maya Angelou
            "Ohana means family--no one gets left behind or forgotten." Stitch[/SIZE][/SIZE][/SIZE]

            Comment


            • #7
              Originally posted by Babs RN View Post
              I think we have walked in the same paths, or bathrooms for that matter. I worked as a clinic nurse, and have done ER, and ICU(and about a million other things too but those are some of the biggies). I now work in Home Health, but luckily I am the DON so I am in the office most of the time. The days I make home visits though, I know every potty between here and there on every highway. That isolation rooom thing is true too. I don't know how many times I have been drenched with sweat trying to get everything done, holding my pee in isolation gear knowing suiting back up would stink if I left to go potty! I used to have a nurse's bladder and could hold it for a whole shift. Now, NOT!

              Again welcome and let me know if I can answer anything. There a few of us nurse types around here too that can give ya some tips about working with this lovely illness in an environment that is not too IC friendly.

              Hugs,
              Barb
              Thank you! It's nice to have a "kindred spirit"!
              My dx: RA, Fibro, Interstitial Cystitis, Bipolar Type 2, Pelvic Floor Dysfunction, IBS
              My meds: MTX, Leukovorin, Humira, Prednisone for RA flares, Celebrex, Orphenedrine, Tramadol as needed, Wellbutrin, Lamictal, Lyrica, Trazodone, Nexium, Singulair, Atarax, Elmiron, Provigil, and Macrobid/Trimethoprim (rotate monthly). I also take a multivitamin, Magnesium, Calcium supplements, fiber supplements, probiotics, and vitamin D.
              Current treatments: bladder instillations


              Come play with me on Facebook!

              Comment


              • #8
                Make sure to let us know how that appointment goes on the 31st, OK?
                Kim

                Diagnosed August 2001

                Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)


                Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

                I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.

                *****************************

                “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

                “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy

                Comment


                • #9
                  Originally posted by vm View Post
                  Make sure to let us know how that appointment goes on the 31st, OK?
                  Thanks-I definitely will!!!
                  My dx: RA, Fibro, Interstitial Cystitis, Bipolar Type 2, Pelvic Floor Dysfunction, IBS
                  My meds: MTX, Leukovorin, Humira, Prednisone for RA flares, Celebrex, Orphenedrine, Tramadol as needed, Wellbutrin, Lamictal, Lyrica, Trazodone, Nexium, Singulair, Atarax, Elmiron, Provigil, and Macrobid/Trimethoprim (rotate monthly). I also take a multivitamin, Magnesium, Calcium supplements, fiber supplements, probiotics, and vitamin D.
                  Current treatments: bladder instillations


                  Come play with me on Facebook!

                  Comment

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