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  • IC confirmed biopsy

    Hello All,
    My daughter 22 does have IC with a confirmed biopsy. Her dr wants to do a Steroid injection into her bladder. I do not seem to find this treatment, is this listed under a different name?
    She has fibro, ic, and enlarged lymph nodes neck and brain. On major pain pills.
    Thanks for the input.
    cici

  • #2
    Maybe they mean a steroid instillation? There are several types of instills. I've only had heparin/lidocaine/sodium bicarb, but lots of ladies out there have had steroid instills and will hopefully help you out.

    I'm confused about the swollen lymph nodes in the brain? I understand about the ones in the neck....did the doctor say what this was, or what was causing it?
    *IC-- Summer 2004; PFD--October 2005
    *Fibro--Fall 2000; CFS-- Fall 2000
    *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

    Total Abdominal Hysterectomy--adenomyosis--9\08

    04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.

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    • #3
      Although a steroid is not uncommon as part of a coctail of meds in a instillation I don't know of many people who have had it alone. If you know the name of steroid and look up instillation you should be able to find some info.

      I am curious though...how was the diagnosis confirmed by biopsy? Long term inflammation or ilimmination of other things?? There is no one definative test for IC so I am curious did your daughter participate in a study for that??

      Fibro is common amoung IC patients.
      Faith, Hope, and Love,
      Katrina


      I believe God is using me. He uses me for God. Things I gain from all my suffering are meant to help others. I hope I can help you too. Email me or start a chat if you like my help or anything. I CARE!Illnesses: IC,IBS, IBD, GERD, PFD, Epilepsy, Endo, Allergies, RLM,Rapid heart beat, low blood pressure,Gastritis,Gall stones,Tendonitis,migraines, Shingles, Prolapsed pouch,ext. fatigue (current problem) I have seen periods of remission and I have seen them end and return. At this time remission is over and working on getting it back!

      IC 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.
      or find me on facebook http://www.facebook.com/kat671?ref=profile
      Be the Miracle! & Pay it Forward!

      [email protected] please contact me...I am here to help!

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      • #4
        I had the steriod Kenalog (sp) installed with DMSO. (I think it was DMSO--it was a long time ago) I don't remember it helping all that much--not as much as the Uro thought it would. Sorry.

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        • #5
          I had Solu Cortef instilled on a regular schedule for several years and it did help to keep my symptoms under control.

          Donna
          Stay safe


          Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
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          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.

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          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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          • #6
            She had a bladder biopsy which showed: Final Pathologic Diagnosis, features appeaar consistent with IC. the lamina propria is edematous and contains areas of red cell extravasate associated with lymphocytic infiltrate. Rare eosinophils are seen.

            The top urgo/gyn Dr. @ SF kaiser last Nov. said it was all in her head after she saw him because she passed a flow test sitting in a special chair when he filled up her bladder. So she has had to deal with seeing psychartists the past 7 months until her original urologist dr. finally did the biopsy last week. She believes she his first ic patient and he's very supportive, but new. She continues to bleed from this procedure a week later and I'm concerned about this.....she took in a urine sample last night which they said upon receiving that it did not look like internal bleeding. We will see what shows.

            She has failed to relieve her systoms with the latest ic meds, Elmiorn etc which they put her on last year, no help. The next drug maybe relating to anti histimines maybe because of the Eosinophils seen.
            I'm not so sure they will be doing the steroid thearpy now either.
            as far as the swollen lymph nodes in the neck and brain, related to the parotid gland, we have to wait 3 months a wait and see if they giet bigger, she saw a head and neck surgeon.

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            • #7
              It can take some real time to heal from the hydro and a biopsy. Rescue instillaations are one of the most promissing treatments accourding to many experts. Diet, calcium, pain treatment,
              http://www.ichelp.com/TreatmentAndSe...medsguide.html ICA treatments and Meds
              http://www.remedyfind.com/hc-Interstitial-Cystitis.asp This is a link to a site with IC treatments rated by patients.
              http://icandme.9.forumer.com/index.p...=ST&f=19&t=217 newbie kit

              http://icandme.9.forumer.com/index.php?showtopic=4 herbal start with IC

              Although having a new doc is hard, sometimes the best doctors with IC are ones willing to learn and listen to the ideas of treatment that there patient brings to them.

              Antihistamines are a common treatment with IC....my first meds given me...Elmrion and an antihistamine hydroxyzine.
              Good luck!
              Faith, Hope, and Love,
              Katrina


              I believe God is using me. He uses me for God. Things I gain from all my suffering are meant to help others. I hope I can help you too. Email me or start a chat if you like my help or anything. I CARE!Illnesses: IC,IBS, IBD, GERD, PFD, Epilepsy, Endo, Allergies, RLM,Rapid heart beat, low blood pressure,Gastritis,Gall stones,Tendonitis,migraines, Shingles, Prolapsed pouch,ext. fatigue (current problem) I have seen periods of remission and I have seen them end and return. At this time remission is over and working on getting it back!

              IC 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.
              or find me on facebook http://www.facebook.com/kat671?ref=profile
              Be the Miracle! & Pay it Forward!

              [email protected] please contact me...I am here to help!

              Comment

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