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IC Flare and a Trip to a (Clueless) ER

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  • IC Flare and a Trip to a (Clueless) ER

    I am in the midst of a terrible flare right now. I'm lucky my doctor has me on UTA, Ultram, and Flexeril to help manage the pain. I called his office this morning, and they called me in a rx for Lortab to help with the crazy pain until I start my instills tomorrow.

    I was at my breaking point last night and went to the local ER, thinking they'd be able to do a rescue instillation. Man, was I wrong! The doctor didn't even KNOW what IC was. She had no clue. She took a urine sample from me and asked what I had been doing to make my urine blue--I told her it was from the UTA. She didn't know what UTA was. I had to show her my rx bottle.

    She then treated me like a drug addict and told me that she assumed the only reason I was there was for pain management. She said that I should be able to manage it on my own. I asked her for a rescue instill and explained that's what I needed. She still insisted that I was there for drugs and gave me a rx for Ultram--which I am already taking.

    Dang. I've had rude doctors before, so her 'tude didn't get me. I just don't understand how a doctor has NO CLUE what IC is or how bad IC pain can be. How can you be completely uneducated on treatments like rescue instills? And if you don't know, can't you look it up? It infuriates me.

    Have any of y'all had a similar experience?
    Mommy to Dolores Anne, born 2 September 2012

    Current Meds: Zoloft, Premarin, Klonopin, Tramadol, UTA

  • #2
    ER Doctors aren't necessarily going to know about IC, many urologists don't know much about IC. I don't think that it would be possible to get a rescue instill at an ER. The only way to possibly get urological help there is for them to call a urologist in to see you. I have been to the ER twice with my IC. Once prior to diagnosis when I was in such agony I couldn't take it and had already been to urgent care and couldn't get in to see my Dr. My ER DR did know what IC was but thought that wasn't what I was experiencing. Second time was after a terrible flare and med change and I was in another state and really needed some pain management which they did give me. I think after I thoroughly explained all of my meds and conditions they surely thought no one would go to all those extremes to get pain meds!

    You might want to ask your Dr if they would be willing to give you something in case of emergency and you can't get to the Dr for help. I know of a few that have posted that they got help in the ER and were even admitted but I think that is a very rare occurrence. ER Dr's really have to assess where a patient is, treat the one's they can and call in specialist if they feel it is needed. Don't feel bad that they didn't understand, it isn't a very well known disease. Maybe one day with our work it will be more recognized.
    Link to the patient information, everything from What is IC? to Disability
    http://www.ic-network.com/patientlinks.html

    American Urological Association Clinical Guideline
    Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom
    http://www.auanet.org/content/guidel...ent_ic-bps.pdf

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    • #3
      I hope so. It's amazing to me how many people don't know about IC. I even have family members that haven't bothered to learn more about the condition that has such a profound impact on my life.

      I am seeing my doctor today for a rescue instill. They are going to teach me how to do them myself; I'll be prepared if another flare pops up.
      Mommy to Dolores Anne, born 2 September 2012

      Current Meds: Zoloft, Premarin, Klonopin, Tramadol, UTA

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      • #4
        I can relate. I went to the ER twice in January for a UTI here in vegas (have no choice but to live here with my air force boyfriend until next year). I was testing positive for bacteria so they were treating that but the symptoms wouldn't go away and they were totally clueless as to why. I even asked one of the nurses if he thought it could maybe be interstitial cystitis and he said "nope, absolutely not" and the others didn't even know what it was. I finally had enough and flew back to the midwest to my family and saw my regular drs up there. They said they strongly suspected IC. It's very frustrating.

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        • #5
          ER doctors can be frustrating. I avoid it if at all possible, but when I have gone in most doctors recognize that I am in actual pain and not seeking meds. Though it probably helps that I have had multiple RXs of pain meds with notes about which ones work and which ones don't. My Dr. is very nice about prescribing pain meds.

          I have had a few positive ER experiences though, every once in a while I manage to get a nurse who has worked with the disease, and let me tell you that makes a hell of a difference. I even once had an ER doc who knew someone with the disease, so he was much more sympathetic.
          Clark College Junior, wanting to go to UW for Fine Art Degree
          Major: Fine Art
          Taking a course in medical transcription, must work from home
          IC diagnosed 07/07
          PFD developed sometime during late 07
          Uterine Cyst removed 12/09
          Chronic Pelvic pain developed in 09
          Chronic Back Pain developed in 09
          Possible vulvodynia

          Medications: Elmiron, Detrol LA, BC, Prosed DS, Celexa for anxiety, depression, and pain,
          No longer taking: Atarax (No help),Amytriptalene (no effect, became suicidal), Ditropan (no effect), Probiotics (sick to stomach), Bactrim (hopefully cleared up my UTI!), avoiding Pyridium unless absolutely needed (sick to stomach), Prozac (helped anxiety, no pain relief), Pamelor (gained nearly 20 lbs in a short time, no anxiety relief), Valium, Vicodin, percocet (none of these meds even touch my pain >_<)

          Current Therapies: acupuncture, heat, Vicodin if needed, lots of laying down, gaming as a distraction, Pain Management classes started 9/22, Wanting to try TENS therapy

          Comment


          • #6
            some ERs are clueless and some are learning our condition really does exist. i was fortunate to receive compassionate care in an ER when i had to go because they could see i was in terrible pain and not a drug seeker. some are not so fortunate. we need more awareness about IC.
            Newly IC diagnosed as of February 2011.

            Medications I'm on that seem to work:
            Zoloft- one once a day
            Butrans pain patch 5 mcg (THANK GOD FOR WHOEVER INVENTED THIS!SO MUCH PAIN RELIEF ITS UNREAL,I AM IN NO PAIN AT ALL UNLESS I STRESS OR SCREW UP ON THE DIET)

            Failed Meds:
            Elmiron-after 4 months,digestive side effects got to be too much
            tramadol-allergic
            DMSO treatments(5-6)
            probiotics

            THERAPIES:gardening,cooking,IC Diet,Counseling,Lots of warm baths,stress reduction,heating pad or ice packs,meditation/deep breathing,listening to relaxing music,having fun on pain free days,drinking chamomile or peppermint tea,pelvic floor physical therapy
            AROMATHERAPY-candles,incense
            Village Naturals Aches and Pains Peppermint Bath Salts
            Johnson and Johnsons Lavender Melt Away Stress Body Wash/Lotion

            ACUPUNCTURE/HERBS
            Significant pain relief so far.

            MAY TRY:yoga,swimming/hydrotherapy and anti-candida diet if i can kick my sugar addiction
            ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
            ***TO MY IC SISTERS AND BROTHERS:WE ARE OUR OWN ADVOCATES!,PLEASE DO AS MUCH RESEARCH ON YOUR OWN AS POSSIBLE AND TRY DIFFERENT TREATMENTS TO GET WELL.NOT ONE TREATMENT WORKS FOR EVERYONE.MOST IMPORTANTLY,TRY TO KEEP A POSITIVE ATTITUDE,DISTANCE YOURSELF FROM NEGATIVITY/NEGATIVE PEOPLE AND NEVER,EVER GIVE UP!***

            Add me on facebook Angela Hasic

            ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
            Lord, make me an instrument of your peace;
            where there is hatred, let me sow love;
            when there is injury, pardon;
            where there is doubt, faith;
            where there is despair, hope;
            where there is darkness, light;
            and where there is sadness, joy.
            Grant that I may not so much seek
            to be consoled as to console;
            to be understood, as to understand,
            to be loved as to love;
            for it is in giving that we receive,
            it is in pardoning that we are pardoned,
            and it is in dying [to ourselves] that we are born to eternal life.

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