Announcement

Collapse
No announcement yet.

just diagnosed

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • just diagnosed

    Hi out there!
    Just diagnosed, and like a lot of you, very nervous about what it will mean.
    I am trying elavil 10 mgs, and tagamet, and I am feeling better! My worry is that I am only better because of the hydrodistention my surgeon did to diagnose me! I had a prolapse surgery 5 wks ago, which led to the hydrodistention and tada! diagnosis of IC, which I had been suspecting for a while. So now, I will go in to see my uro in a week, and we will settle on a course of treatment which could involve Elmiron by installation. or maybe just a "wait and see" . Does anyone have opinions on the Elmiron instil? Does anyone have knowledge of the hydrodistention and how long you are in "remission" from it? And finally, what about colostrum as a natural way to rebuild the bladder?
    I'm a teacher who has just had five weeks out of my classroom, and ready to get back to work with a positive attitude. You are all very inspiring and I thank you!
    jlynn :

  • #2
    HANG IN THERE GIRL. YOUR ARE IN A GREAT PLACE FOR ADVICE, PRAYER AND ANYTHING ELSE YOU MAY NEED. THESE PEOPLE ARE SO SUPPORTIVE OF EVERYTHING YOU MAY NEED.

    Comment


    • #3
      Hydro

      I read in Dr. Moldwins book on IC that hydros usually last about 3 months, Donna says her last 6. You are either helped or made miserable by hydros.
      I think the Elavil and Elmiron helped me the most, I would murder anyone who tried to stretch my poor bladder with a hydro.
      Sammi

      Sammi

      Meds: Melatonin 3mg @ bedtime if needed. Estrogen 1.5 mg troche and 0.1 mg Estrace cream.
      Diagnosis: IC, PFD (both in remission)

      Comment


      • #4
        Thanks!
        my uro said he thinks the Elmiron gets "chewed up" in your system so if you take it orally not as much gets to the bladder where its needed. He prefers the instillation of Elmiron directly into the bladder. Any thoughts on this? It sounds like you are doing well Sammi, how long have you had ic, and how often do you flare up? How long on oral Elmiron? Any side effects?
        jlynn

        Comment


        • #5
          There is debate on how effective Elmiron is -- even the company that makes it admits only 30% or so of people taking it orally are helped. However, we have a lot of success stories here from people taking it orally, despite that. We also have stories from people who it did not help at all.

          And finally, there are people trying it in instillation form right now, and some say it is great and others, well, not so much.

          IC is weird in that everyone is different... you may respond to something, and someone else might have a bad reaction to it. It all depends on body chemistry
          ****
          Jen

          *Diagnosed with severe IC in 2004
          *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
          *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
          *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

          **I am not a medical authority nor do I offer definitive medical advice. 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.

          Comment

          Working...
          X