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  • New/Lots of ???s

    Hi Everyone,
    I'm new to this site. I've had chronic urinary problems since my hyst in 2002. My story is very long and involves everything from fistulas to kidney stones. I haven't had surgery since 11/04! That in and of itself is a miracle! Since 04 I've been fighting with pain, frequency, burning, and the inability (at times) to empty at all. My urine constantly has WBCs, but rarely grows bacteria. My URO who has done most of my repair surgeries has sort of "checked out". My PCP is convinced that I have IC and has started me on Elmiron. I'm overwhelmed to say the least. Everything I've been doing for the past several years to fight what I thought were UTIs is the total opposite of what I should be doing for IC.

    I eat a lot of fruits and veggies. I love salads. I've been taking 2000mg of Vitamin C every day for the past 3 years (I was told to do this by my uro). I feel like my life is being turned upside down.

    I'm not at all sure I should go through with any more procedures to confirm the diagnosis of IC. My bladder doesn't respond well at all to trauma or anasthesia. It will just shut down and refuse to empty at all for at least a week. It will spasm and just have a general fit for several weeks after that. I'm not sure it's worth all that. My PCP wants me to commit to the Elmiron for 6 months along with a change of diet and see if it makes any difference. What do you all think?

    Any suggestions for the pain and frequency? Is there a specific muscle relaror that works well on the bladder. I can't take Detrol or Ditropan because I have retention problems and these make that worse.

    Speaking of retention, does anyone else have that problem? It causes me an issue if I feel pressured that I have to void quickly. For example, if we're traveling... I feel strong urge, but can't actually go. Then I begin to panic because I know it may be a while before we come across a place to stop again. So, then I am forced to cath which just adds to the burning and frequency. It's a vicious cycle. UGH!
    Melissa
    Legally Blind (since birth)
    Hysterectomy (uterine prolapse) 12/02
    TVT bladder sling- 12/02
    TVT Sling was too tight and I could not pass urine without a cath. When the sling was being cut, dr accidentally sliced my urethra. Formed UrethaVaginal Fistula.
    Urethravaginal Fistula Repair- 5/03
    Muliple bouts with kidney stones after surgeries.
    Surgery to repair defect in left kidney 6/04, 8/04
    RectoVaginal Fistula Repair- 11/04
    IC-suspected by Dr, but not confirmed
    Started Elmiron 2/16/07

  • #2
    For sure, for sure, for SURE try the IC diet. It is simple (but not necessarily easy) and can make a big difference in your symptoms if you try it long enough to really see if it helps. There is more info here: www.ic-network.com/handbook Look for the section on diet and it will tell you all you need to avoid - which is a lot of the fruits you probably love. Also, some vitamins can aggravate it - Vitamin C being a big one for many.

    Good luck! You'll find lots of great support and info. here.
    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


    • #3
      Wow, you've been through a lot! Makes me feel fortunate that all I have is IC!

      Suggestions for pain & frequency? My best self helps for these symptoms during a flare would be: First, to eliminate any food/drink that is potentially irritating. Next I increase my water consumption (untreated, spring water). I take Azo or Uristat when I can no longer tolerate the pain (OTC med for pain/burning/frequency). Baking soda in water helps with my burning as well, but may not be good for those whose diet is sodium restricted. Sitting in a warm bath with a crossword puzzle seems to help me. A good movie with a heating pad on my bladder. Hmmm, that's about the end of my list.

      If it is IC, you're likely to find most fruits are not our friends. Nor are many salad dressings! The handbook has really good info on diet as well as a list of problematic foods that I found extremely helpful.

      Sorry, no retention problems for me, but I know others here do deal with that and will hopefully post to your thread.

      Hang in there!

      Vicki
      "The happiest people don't necessarily have the best of everything; they just make the best of everything they have."

      Comment


      • #4
        I agree that you should try the diet... and that you should give the Elmiron a chance. While you're looking at the handbook, check out the section on "Treatments." There are many things you can do while you wait for the Elmiron to "kick in."

        I also cannot take Detrol or Ditropan due to retention issues. Have you asked your doctor to teach you how to self-catheterize? I learned how and it really helped when I had episodes of retention... at least, that way, I could empty my bladder and get some relief. It also helped to know how to cath when I started doing rescue instillations myself at home (there's a description of those in the Treatment section of the handbook as well).
        ****
        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


        • #5

          The diet is definitely the first thing you should do. It's not the most fun in the world, but in a few weeks, you should be able to slowly add foods back in to determine what specific foods are triggers for you, as they are different for everyone.

          I, too, have retention, and I understand what you mean about trying to go "in a hurry." There really aren't any good solutions for that. As for normal times, try and relax as best you can and try very hard not to push to get your flow started. You should prop your feet up on something, like a four pack of toilet paper. Then, start concentrating on your breathing, deep and slowly. Blow out like you are breathing through a straw. If your flow still hasn't started, then you can lean forward slightly and continue your deep breathing. Still nothing? It is probably time then to either self cath or walk away and try again later if you aren't having that maddening urgency!

          There are many meds out there that can help you, it's up to you and your doc to try and find the right combination, and that can definitely take time. It sounds like you have a good PCP who is trying to at least get you on elmiron to see if that will help.

          Good luck!!
          Claudia

          ~Claudia

          "A heart is not judged by how much you love; but by how much you are loved by others."
          ~ The Wizard of Oz

          "If I ever go looking for my heart's desire again, I won't look any further than my own
          back yard. Because if it isn't there, I never really lost it to begin with!" ~ Dorothy


          Comment


          • #6
            Thanks!

            Hi Everyone,
            Thanks for the replies and helpful info. I'm soory to be so long in replying, but I've had what I believe is a very bad reaction to the Elmiron. The worst stomach pains, throwing up and the other end (if you know what I mean) that I have had in a very long time. UGH. I got very dehydrated and didn't even produce any uring for over 24 hours. That was actually a blessing as my IC symptoms were very minimal. I've stopped the Elmiron and I am slowly working my way back to normal. Diet and nutrition are going to be my focus for now. I'm starting the elimination diet now. Perfect timing as I just went through a vigorous colon cleaning (smile). Thanks again!
            Melissa
            Melissa
            Legally Blind (since birth)
            Hysterectomy (uterine prolapse) 12/02
            TVT bladder sling- 12/02
            TVT Sling was too tight and I could not pass urine without a cath. When the sling was being cut, dr accidentally sliced my urethra. Formed UrethaVaginal Fistula.
            Urethravaginal Fistula Repair- 5/03
            Muliple bouts with kidney stones after surgeries.
            Surgery to repair defect in left kidney 6/04, 8/04
            RectoVaginal Fistula Repair- 11/04
            IC-suspected by Dr, but not confirmed
            Started Elmiron 2/16/07

            Comment


            • #7
              SOOO sorry that you have been so ill! Stomach troubles are just the worst...especially when they are happening at both ends simultaneously! I am glad that you are starting to feel better.

              ~Claudia

              "A heart is not judged by how much you love; but by how much you are loved by others."
              ~ The Wizard of Oz

              "If I ever go looking for my heart's desire again, I won't look any further than my own
              back yard. Because if it isn't there, I never really lost it to begin with!" ~ Dorothy


              Comment

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