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  • I really need some help please

    Hello,
    I have been trying to search for people to talk to or a group to join. I am so confussed and an emotional reck. I have so many questions and feel like no one else in this world has ic disease. Could someone please help me.

  • #2
    HI! You can write me here or PM me......what questions do you have? I know what it's like to be an emotional wreck.......so feel free to write.....Roxie

    Double Spinal Cord Stimulator surgery 8/09
    Unsuccessful MiniArc sling surgery 12/07
    Dx'd Hypothyroid
    Dx'd Chronic Axonal Neuropathy & Myopathy
    June 2007
    Dx'd IC May 2006 (after suffering for 25+ yrs!)
    First Cysto 1979
    First Hydro 1981 (Many treatments since then!)
    Collagin"Durasphere" injections for urethra
    Gall bladder surgery Aug. 2004
    Gastric Bypass Dec. 2004
    Dx'd: Barrett's Esphogus July 2004
    Dx'd: Vaginal Atrophy 2005
    Bladder surgery 2000
    Dx'd: IBS 2000
    Hysterectomy (fibroids) 1999
    Laminectomy 1989
    Dx'd: Degerative Disk Disorder 1989

    For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
    I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

    Comment


    • #3
      Originally posted by Roxie2007 View Post
      HI! You can write me here or PM me......what questions do you have? I know what it's like to be an emotional wreck.......so feel free to write.....Roxie
      how do i pm I am not very good with a computer

      Comment


      • #4
        hello thanks for answering me. I have ic disease I had a hyster 3 years ago and they destroyed my bladder. I just found out 6 months ago that I have ic disease. I went threw 11 urologist and now on my 12th and he wants to do another surgery. I also have pain in my right kidney all the time. My stomach blows up when i have an infection which i get every 5 weeks i swell so much i look like i am 9 months pregenate and have to wear maturnity clothes. Are some of these sympotms normal? I was told that i am very sick and i am scared and dont know what to do. now they want me to have pelic therapy and my head is swimming.

        Comment


        • #5
          Your not alone. There are sooo many of us out here. If you go to the main page at the bottom there is a listing for support groups by state maybe there is one near you. What is it that you want to know? I'm sure someone will have an answer or an idea that might help you. Take deep breaths ~ think calming thoughts ~ things will get better.

          Comment


          • #6
            HI Toucan, To PM go to the top of this page......on the right hand side you will see the words "private messages" in blue.......click on that and it'll take you to the private message section.......Roxie

            Double Spinal Cord Stimulator surgery 8/09
            Unsuccessful MiniArc sling surgery 12/07
            Dx'd Hypothyroid
            Dx'd Chronic Axonal Neuropathy & Myopathy
            June 2007
            Dx'd IC May 2006 (after suffering for 25+ yrs!)
            First Cysto 1979
            First Hydro 1981 (Many treatments since then!)
            Collagin"Durasphere" injections for urethra
            Gall bladder surgery Aug. 2004
            Gastric Bypass Dec. 2004
            Dx'd: Barrett's Esphogus July 2004
            Dx'd: Vaginal Atrophy 2005
            Bladder surgery 2000
            Dx'd: IBS 2000
            Hysterectomy (fibroids) 1999
            Laminectomy 1989
            Dx'd: Degerative Disk Disorder 1989

            For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
            I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

            Comment


            • #7
              You can also click on a persons name and a menu will appear. One of the options will say send a private message and that will take you to a new page to send a PM to that person.
              Christine



              I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
              1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
              2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
              I have tried every oral medication as well as rescue instills and DMSO.

              I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

              Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
              Also proud mom to the best Bullmastiff on earth, Claus

              Comment


              • #8
                I take one day at a time, right now I have no insurance and can't get my meds. because of this, so I have to deal with my symtoms more or less. I do hope you doctor's can get to the bottoms of this and help you get better, please feel free to write me anytime. I don't have all the answers, but I can sure try to help you in anyway I can. My e-mail address is [email protected]. Don't hesitate to write me anytime.

                Lori

                Comment


                • #9
                  Toucan---unfortunately all of us here completely understand what you're going through, and we're all willing to help any way we can. Take time to read through the boards; dont hesitate to post your questions and concerns--theres always someone logged on who will respond to you.

                  Hope you start feeling better soon!

                  Diana
                  (\__/)
                  (o.O )
                  (> < ) This is Bunny. He's on his way to world domination.

                  Comment


                  • #10
                    I'm so glad you found the IC Network. One important suggestion I have is to read the information in the Patient Handbook at http://www.ic-network.com/handbook --- the handbook will answer many of your questions.

                    And sometimes it's best to post questions, rather than asking individuals. When you post a question, many people will read it and you're more apt to have the question answered.

                    Sending warm healing thoughts,
                    Donna
                    Stay safe


                    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
                    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

                    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.

                    Patient Help: http://www.ic-network.com/patientlinks.html

                    Sub-types https://www.ic-network.com/five-pote...markably-well/

                    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

                    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

                    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

                    Comment


                    • #11
                      HI, well if you will like someone to talk with ill be glad to my name is stacy, I have been diagnosed with ic in feb 2006, Been threw a lot.. learned a lot.. Be glad to give you any advice and help you need. you can e-maile me at [email protected] just say your from the ic net work, and then i will know who u are..
                      take care,
                      stacy


                      Current Conditions:
                      Endometriosis,1995
                      IC,Feb 06
                      IBS-C

                      Prenecious Anemia
                      Stomach Ulcers
                      Duodenitis
                      Acid Reflux
                      Low Blood Sugar
                      Hypothyroid
                      Migrains

                      Surgeries
                      Laporoscopy-1995
                      Gaul Bladder-1996
                      Laporoscopy-2005
                      colonoscopy2005
                      cysto/hydro-2006
                      cysto/hydro-2007

                      endoscope-2007

                      Meds:
                      Elmiron,100mg 2am 2pm
                      Seasonique,1 night(helps control pain for Endo)Provera, 10mg 1 night
                      Elavil, 150 1pm
                      Flexeril, 10mg 1 night(was to be 1 am also but makes me to sleepy)
                      Prilosec,20mg 1am 1pm
                      Zoloft,100mg 1 pm
                      Topamax 25mg 1am 2pmCyannobalamin(b12), 1 injection every 2 weeks
                      Reglan, 10mg, 1 3xday with meals-for duonditis
                      Ultram 50mg 1 every 4hrs as needed for pain
                      Pyridim,100mg as needed
                      Vicodin 5/500 as needed for pain
                      Heating pad
                      Ice Pack
                      Arthritis Pain Equate brand 650mg usualy 2 at a time
                      Stool softeners w/stimuli, 2am 2pm[/COLOR]

                      Hopefuly no more gets added to the list!!!

                      I wish the best for all of you and hope the days with pain are few. I wish you peace and calmness... for we all need it, with out it... the pain is worse.
                      Try to take the best care of you that you can. When you are not happy with the care you get dont hesitate to get the help you need. Sometimes a 2nd opinion can give the calm and peace which you are seeking.
                      My prays go to all of you. For I know there are many who are have many bad days and need a shoulder.. Always remember this site, for its made a huge differance to me and many people. Here you can find the the ear your looking for when you just need to vent.
                      When your not looking for Im so sorry and I have no idea what can help you. Here we understand the pains the suffereing and most of all the Constant frustration. For anyone who needs it.. I will do my best to be the ear who can listen and help how ever I can. All my best to all of you.
                      Dont forget to take care of you!
                      Take care

                      Comment


                      • #12
                        We are here for you

                        Please keep your head up. Maybe you should try to find a uro that specializes in IC, or at least was taught about it in school. Because IC is such a newly recognized disease, some of the older uro docs don't really recognize it. At least that is the feeling I get here from the posts. Try to find a uro who deals with it frequently.
                        It sounds like your IC is totally out of control. Do check out the ICN Handbook like ICN Donna recommended. I have read it many times, and keep reading it over and over. Each time I read it, I get something new from it to try.
                        The diet is the thing that helps me the very most. I work very closely with my uro when I'm having problems. Good luck, and all of my hopes and prayers are with you. I really hope you get feeling better soon. Post here with questions, concerns, or just to vent any time. This site is so active that you usually have an answer fairly quickly.
                        Redmowii

                        Comment


                        • #13
                          I'm sure you can find a local support group (assuming you live in or near a large city). There is a link on the main page for support groups and I found one in my new city. I hope to talk with them next week. That way, I can also find the best doctors (from other IC patients) in my town.

                          Sorry to hear you are struggling so much!
                          [SIZE="1"][B]Be well, Alyssa :hi:[/B]

                          [

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