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  • I'm new here, but not to IC

    My name is Katheryn and I am the mother of 5 children and have had IC for at least 18 years; I was diagnosed about 11 yrs ago after seeing 6 Urologists. I finally found the one DR. who put me remission for awhile in Greensboro, NC. Now I feel as though the good is gone for my health for awhile and I am scared!. I am in constant flare since January. I have kept a good IC diet, but unknowingly started eating a cereal with soy for several weeks...I am hoping that was what started the bad, bad flare. I am under stress as all of you; My husband of 26 yrs has divorced me and since he is quite a bit older THAN ME and he is near retirement, I did not get a great settlement. I sold our home and am now in an apartment with my youngest child, a son. I am also suffering grief my brother's death a year ago, and i was with him through his cancer treatments until the end. We were so close. I am on atarax, valium, pyridium, norco, and I tried Elmiron which does not seem to help. I also started singulair and without much success. I am starting something called Sanctura, and Lyrica I also have suffered from Roseaca (which was virtually cured from a procedure called Photoderm)...a type of laser treatment. Now my fair skin is only pink and not red. I am very blond and fair. I also have fibromyalgia, and MANY drug allergies.
    I am a clinical social worker and work part time at this point. I need full time, but i have a job facilitating clients in the court system and I need frequent bathroom breaks....as you all know! I really do not feel well enough to work at this time, but i have to as i am sure so many of you can relate. So, I sit here with that hard pressure on my bladder and pain, but does anyone have a great drug for frequency that does not cause retention? I am so glad for this network. I am glad to meet ya'll, but so sorry we have to meet with a disease that makes us think about it all the time. I feel as though my family gets so tired of me being sick...but i try so hard to be the good mother, and I really did try to be a great wife.
    Sorry to ramble, but I have not had a sister in pain before. I have great anxiety and it seems strange that I also treat women with Postpartum anxiety and they have NO idea what a basket case I am.
    I hope we are all healed.
    Love, Katheryn
    Last edited by KathrynPInk; 02-25-2007, 07:45 AM.

  • #2
    Katheryn, welcome to the gang!! I am so glad you found us too, this is a great place for information (all the latest), support, friendship - I could go on and on But like you said, it's a shame we all have to meet this way - by being sick, ugh!!!

    For me personally, Ditropan worked wonders. I took 5mg 3x's a day. There are others that do well with Detrol too. I know there are a few new ones out there as well. For me, it helped with my frequency (in combo with my other meds, alone it only took care of the urethral spasms) and spasms.

    I know some others will chime in to say hello and give information on what's worked for them! I am sure you well know, it's trial and error with this crazy affliction, lol. What works for one, might not for another. Ugh.

    Hope to see you around the boards!!!!

    Hugs,
    Tracey - P.S. soy was a monster for me too!!!
    Hugs,
    Tracey
    How do you eat an elephant? One bite at a time...

    Harry arrived 2/23/09!



    *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.

    IC Diet Cheat Sheet:
    http://www.ic-network.com/diet/2009icdietlist.pdf



    Dx's:
    IC dx'd Nov 2004
    Lymphocytic Colitis dx'd July 2005
    Possible IBS
    Current IC Meds
    Vistaril 25mg in the evening
    Previous IC Meds taken:
    Cystoprotek - 2 caps 2x's a day
    Elmiron, 100mg 3x's a day
    Ditropan, 5 mg 3x's a day
    Others:
    Wellbutrin 150mg 2x's a day for Anxiety/IBS
    Pepcid 40mg a day for GERD
    Zytrec for Nasal Allergies
    Align Probiotic daily for IBS

    Comment


    • #3
      Hi

      I note you saw a doctor in Greensboro; I see Dr. Evans there (I live near Winston-Salem). Like you I have IC and fibromyalgia, as well as myofascial pain syndrome, asthma, chronic migraines.... the list goes on.

      As for your flare, it sure sounds like you are going through a lot with it! I am sure it is probably the stress of the divorce, your brother's illness and death, and work, plus possibly the diet boo-boo that may be contributing.

      It sounds like you're doing all the right things to help yourself, but maybe another visit to your urologist may help. Perhaps going in and discussing things may help you out -- and maybe the addition of a new treatment. Have you thought about rescue instillations? You can read about them in the Patient Handbook under "Treatments" (http://www.ic-network.com/handbook) and there is a section on these boards to discuss them.

      As for the drugs like Detrol, Ditropan, Sanctura, etc -- I personally cannot take them since they ALL cause me to retain, but as you see from traceann's response, they do work for some! How long have you been on the Sanctura? A lot of these things take a trial period of several weeks to determine if they are working...

      I'm glad you found us
      ****
      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


      • #4
        Welcome to the board, fellow Southerner...I figure you must be because you used the word y'all. My favorite word. I have been to see Dr. Evans in Greensboro as well, and I'm assuming that is who you saw since you said he'd put you in remission. He's a great doctor!

        I'm sorry to hear about your husband divorcing you. Did he leave because of the IC/illnesses? I know that must have been very hard for you to deal with, especially because you are sick.

        I've done the single mom thing myself and know that it's not easy. I became sick several years ago and have 3 kids. I can understand most everything you've gone through. I'm also very sorry to hear about the loss of your brother.

        I also have fibromyalgia, and lots and lots of pain. I'm sorry that you have all these health problems, but am very glad that you found us. This is a great place to meet people who can relate to the pain you are experiencing. Please don't ever hesitate to ask questions here....read, read and read some more because, at least for me, knowing that there are so many others out there with the same problems I have is comforting. I have learned so much here!

        Again, to the board and I look forward to getting to know you.

        Sandy
        *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.

        Comment


        • #5
          Hi!
          Welcome to our bladder neck of the woods! I am enduring a divorce right now as well. I know how stressful it can be at times and make that bladder stand up and whistle Dixie. Please know we are all here for you, and if you need to vent, please don't hesitate to lean on us. I did not have much luck with Sanctura, Enablex and such. I am an RN, and it is ironic you mentioned taking care of others and thinking, hey--I wonder if they have any idea what's going on in my body. I am so sorry for the loss of your brother. We are glad you are here.

          Hugs and ,
          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


          • #6
            Thanks to all of you wonderful ladies who have welcomed me. It means more than I can truly express. I am starting on Sanctura today and yes I go to Dr. Evans who gave me a life when I thought it was over years ago!!!!! I would travel anywhere to see him...and YES, I am a southerner ya'll, who lives in Raleigh. I feel "old" right now b/c of this condition...and it freaks me out. I am still young in many ways and I know I am taking to you who know the suffering all too well.
            Again, thank you and as I sit here crying, getting ready for work.. I am grateful for the goodness i have been sent by your welcomes!
            I already feel like I have friends who know what this devilish disorder is.... Excuse my French, but it sucks!

            Love, Katheryn

            Comment


            • #7
              I forgot a question

              What is the aloe vera stuff i keep hearing about? I apoligize if I am posting on wrong page. And...do any of you "experts" in pain and peeing, think the soy could have pushed me over with the stress? I hope it was that.
              Love, Katheryn

              Comment


              • #8
                You are so welcome Katheryn!! We're glad you're here! It's so tough to figure out what the culprits are, for me it was a trial and error of ruling things out (I kept a really detailed voidng/pain/food diary) by going over my notes. I do know that mine seemed to come on full force at the time of my divorce - I had had some troubles like 4-5 years before that - again at a super stressful time in my life, but it went away as mysteriously as it appeard. Well, when it reappeared, I did have it long enough, lol, to figure out what the diagnosis was. So, if I had to hazard a guess, for me it was huge emotional stress - and I am a sort who's really obviously physically affected by stress, always have been...*sigh* And stress and soy were two of my biggest triggers. Ugh.

                XOXO
                Hugs,
                Tracey
                How do you eat an elephant? One bite at a time...

                Harry arrived 2/23/09!



                *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.

                IC Diet Cheat Sheet:
                http://www.ic-network.com/diet/2009icdietlist.pdf



                Dx's:
                IC dx'd Nov 2004
                Lymphocytic Colitis dx'd July 2005
                Possible IBS
                Current IC Meds
                Vistaril 25mg in the evening
                Previous IC Meds taken:
                Cystoprotek - 2 caps 2x's a day
                Elmiron, 100mg 3x's a day
                Ditropan, 5 mg 3x's a day
                Others:
                Wellbutrin 150mg 2x's a day for Anxiety/IBS
                Pepcid 40mg a day for GERD
                Zytrec for Nasal Allergies
                Align Probiotic daily for IBS

                Comment


                • #9
                  I just read your story, Jen, and I too went through Grad school; how I did it, I do not know. I have not done self catherizations at this time b/c I am so inflamed at the moment. I saw Dr. Evans yesterday (I met Laura there--a brave beautiful girl) and his office had more ICers than I ever saw before. Some of us are worse than others and at least I know what a remission feels like. Heaven. Pure Heaven. I have a kinda sorta boyfriend who teaches at a local College, who is very understanding of my condition and does not expect me to be the romantic girl I always wanted to be....(if you know what I mean?) God bless him for standing with me. He just took me to get my vitamins at Whole Foods., but in reality, I do not think he can wait forever; he has a life and I pray I can be a good friend for him when needed.
                  Now I will post on appropriate threads* and thanks again for the understanding.
                  By the way, I love the personal pictures of kids and pets... Beautiful. What would I do without OUR dog at this very moment. He can "sense" that I am not doing well. He is a Dobie and hangs on to me the way my kids did when they were little...and YES, My ex left me b/c I could not be "lover of the year" during flares. I gave birth 5 times ((9-10 lb babies) and the last two, c sections (which I believe had something to do with my IC..Abdominal surgery, plus each of my brothers have autoimmune disorders. Both had fibro with it. I was a stay at home mom for many years due to so many kids and he was a professor and researcher who was able to care for us financially, but I was kept in stress from him saying he would leave me at times. WOW. I'm done and I have given my new friends a boatload of stuff. Sorry!!! I will quiet down now.
                  I am thankful ya'll are out here in the world. I need to pee again. AND YOU GUYS get what I mean!
                  Katheryn

                  Comment


                  • #10
                    Tracy, thank you! I feel welcomed and the whole bunch of everyone are so sweet. I feel supported for the first time by other women. Thank you ALL!!!
                    Katheryn

                    Comment


                    • #11
                      Yes, Katheryn, Dr Evans is great

                      I did go to grad school and got my Ph.D. in 2001. Normally I'd be at work right now, as I'm a research scientist, but I am home now recovering from Interstim surgery that our friend Dr. Evans performed last Friday. While we don't expect it to treat my pain much, it has already improved my voiding symptoms significantly. I'm very happy I made the decision to do it, but it took me a long time -- I tried everything else before I went ahead with it.

                      I'm sorry to hear you have had so many troubles regarding your romantic life -- unfortunately, many ICers do. We have a Romance & Sex board, actually, that is filled with all sorts of tips that may help make intercourse more pleasureable. I hope you find something that helps there -- and I'm glad that you have someone supportive in your life right now. I know it helps that I have a supportive husband.

                      Again, glad you came and found us
                      ****
                      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

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