Announcement

Collapse
No announcement yet.

health story

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

  • health story

    To me, only having an IC story leaves out a lot. Yet what is already on the net isn't really all of this stuff either, so I have chosen to have a post of my health history story. hi

    Back ground: I was diagnosed with Chronic Ulcerative Colitis at age 10. Later believed that had for two years prior to that. At age 12 colitis so bad needed colon removed. Day after surgery, first grandmal seizure, they couldn’t stop it, was in a comma for three days. Woke up, severe memory loss, not even remembering my parents. I spent 66 days at Mayo that time. I also had an emergency surgery on my stomach from drugs, and a lot more seizures.

    About a year after that, age 13 or so, I complained of feeling like I had to pee all of the time, no infection found, tons of test done on me with no luck. (This freaked out my mom, after all worry of my life she had just done she could handle it) I don’t know if I stopped complaining to help her and answer people prayers or what, but I did.

    I had my next surgery called a reversal, where they created my Pouch and no longer had a bag outside of my body around that time.

    Not to long after that surgery I had Pouchitis. I was a unique case; my home doctor could not get it to stay under control by himself, and sent back to Mayo.

    Then in college, I had UTI after UTI, a few random occasions of not having an infection, but unfortunately for me, always happened at the ER clinic, never at my own doctor.

    Pouchitis went into remission.

    Still having seizures at this point but they were all Peti Mal or Simple Peti Mal.

    Had a VNS in plant put in me in ’99. Vagus Nerve Stimulator, meant to treat my Epilepsy. Then right before my marriage, bad seizure, Pouchitis out of remission, and I thought I had a urinary infection but didn’t.

    Than after marriage, went to my family doctor about thinking I had a urinary infection but didn’t. He made an appointment for me to see an Urologist, (I said defiantly not the guy I saw before someone else) I could not get in until 2 months later (grr).

    Before I say that doctor I had the worst period of my life. Freaked I went back to see my family doc. He said well you have an appointment to see the urologist coming up. Completely taken back I asked ‘you think these things could be connected’. I had had to pee all the time for years; pain never seemed to associate with it. The pain never ended, I was in pain after the period, all the way until my appointment.

    My urologist suspected right away I had IC, but he delimited everything else and diagnosed me through a simple lab test of putting different things into my bladder and watching how I reacted. I screamed when they put the urine like substance in me. “Get it out, get it out, get it out, your hurting me, stop.” She said she got the stuff out but I still hurt.

    Finding out then that he would treat me with Elmiron and Elmiron doesn’t start working until at the earliest after 3 months. I was already in constant pain. I was very frustrated, so.. I sought out getting what I mistakenly thought was the place that could help me, Mayo. The Uro there did a cystoscopy, but not under hydro and saw no IC, didn’t help me at all, but told me stop taking Elmiron. Elmiron had just started helping me, I didn’t believe her, and sought out 2nd opinions. Thankfully, they told me I would start all over if I stopped taking Elmiron so I didn’t but wrote a complaint to the doctor at Mayo. She did a great job of ruining my disability suite at the time.

    Well as Elmiron helped me more and more, I realized I didn’t only have IC, (and Epilepsy, and Pouchitis) I also had other things causing me pain. I started to sleep 17 hours a day. That left me with about 7 hours wake time a day to try to get doctors to find out what else was wrong with me. That turned out to be a number of things. Every time I had a test done, they would find something, but not something that could explain all of symptoms. I turned out what we were looking for was Endometriosis.

    Later we found GERD, and I bouts of Shingles, which I found out only happens to people my age that have weak immune system. (I won my disability suite, but I can’t say I was helper to the fight for IC, since the doctor at Mayo had my judge unsure if I had it.

    I don’t think I have pain from IC now unless I flare. Luckily (or unluckily) treatment to Pouchitis is alternating between two antibiotics) so don’t flare too badly too much. With Lupron treating the Endo, I don’t have periods, which also eliminate some flares.

    Somewhere in this story there is a time when I had hernia removed. Out of all things that have caused me pain, IC beats them all by a lot. Even Endo that still causes me pain doesn’t compete to that level. I had gotten so close to dieing as a kid, I used to think that it would be unfair and too odd for any more health problems to be put on my plate, and so it wouldn’t happen. Now I keep waiting for what the next thing is going is going to be. This isn’t my IC story, but it is my health story. I want you to know that if someone who has experienced as much as I have thinks IC is the worst pain she has ever dealt with, then you aren’t over reacting when you say you are suffering. It isn’t something to ignore. Granted, other things got closer to killing me, (stomach, Colitis, Seizures) but nothing made me feel like physical pain alone was going make me pass out but IC.

    One other thing, with all that I have been diagnosed with; this message board is my favorite place for support. We can defiantly be proud, that we do so much for each other.

    NOTE: I have: 1Endometriosis, 2Rapid Heart Beat, 3Low blood pressure, 4Intersticial Cystitis, 5Pouchitis, 6Epilepsy, 7Yiest Infections, 8Reaccuring Shingles, 9Allergies, 10Rapid leg movement, 11Gerd, 12reacurring Gastritis, 13Gall Stones, 14Tendonitis,15 PFD, 16IBS, 17 migraines and the undiagnosed symptoms as well. I wonder how I still am alive with all that is wrong w/ my body or has been wrong in the past. I have had 11 surgeries and I am 28 years old. Docs call me multi diseased.
    Last edited by Katrina; 01-23-2005, 04:07 PM.
    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!

  • #2
    (((((((((((HUGS)))))))))))) Katrina,
    you sure have been thru a lot starting off at such a young age. I am glad that you are doing well now
    Brat
    'The will of God will never take you where the Grace of God will not protect you.'

    Comment


    • #3
      I care!
      [email protected]
      Sue C.~
      [email protected]

      Comment


      • #4
        grouphug
        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


        • #5
          grouphug Sending hugs your way!I hope they can figure out everything that is going on with you it sounds like you have been through alot already.Hang in there & keep a possitive out look,I know it's hard when you feel like you do.
          Sending possitive energy your way & lot's of prayers. grouphug
          Take care, Zookeeper Kim
          Animals are very comforting when
          pain & life gets you down...

          Keep your head held high and don't let any thing bring you down.

          Comment


          • #6
            tanks all for your replies. Been through a lot but I will stay stong. Thanks Sue for activating this again. I know you care. Love to you all. grouphug
            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


            • #7
              Hi Katrina, you sure have been through a lot already, and you are always ready to give support and compassion to us all. There is a saying in England, "I take my hat off to you", and I surely do to you with IC alone is enough, without anything else. One thing I feel, is that the pain of IC is really a pain that cannot be described to anyone unless they experience it themselves. Having to deal with so much in your life, you really are a remarkable young woman, take care and hugs Iris hi kissing grouphug
              Today and every day you are loved, so don't be anxious about tomorrow, God will take care of you tomorrow; Live one day at a time.

              Comment


              • #8
                Wow. I can't say that I understand, because I'd be lying. I'm so sorry you had to deal with all that and that you still are. Hugs,

                grouphug kissing

                Melis
                "Life is 10% what happens to you and 90% how you react to it"

                Read my story at: http://www.ic-network.com/patientstories/melissa.html

                Comment


                • #9
                  You must be one of Gods angels.May peace be with you. angel

                  Comment


                  • #10
                    thanks everyone.
                    jthiel -- that was such a very nice thing to say.
                    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


                    • #11
                      Katrina,

                      What is going on with the ChatRoom? I tried logging in and it would not let me and the only way I thought I would be able to get a hold of someone was through this post?

                      I read what the site said that AOL was in a law suite but its not fair that we have to suffer due to this? I was just getting confortable with the illness and all you wonderful poeple I have meat and no its all gone.

                      I hope this gets resolved.

                      I miss you guys and I am sending all my love and I will always think of you guys.

                      Love
                      Ruth
                      Blessings,
                      Ruth

                      Comment


                      • #12
                        Unfortunately, at this time having an unmoderated chat room could put the entire IC Network in legal jeopardy. The boards are always here for discussions, however, and I encourage you to post any questions/concerns here.

                        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


                        • #13
                          I cannot beleive what a load of crap AOL is trying to pull off, My opinion is anyone who is at all affiliated with AOL to drop all accounts, at get em where it counts!!
                          We as an IC family have come here sometimes every night and day to support and genuinly console those who need our support. How can we as ailing IC patients have any other way to vent and help eachother if not to be able to talk inside OUR chat room that is honest, regaurds each others feelings as valuable and openly engages in tring to help those who may need assistance because I can tell you the medical community is not out there doing this.
                          Our experiences here should have some validity, the mainstream medical community and nearly all that is affiliated with it does not care what happens to us as human beings, we are numbers attached to file names that owe them our hard earned money so they have the satisifaction of driving home in the H2's and turning on the 40 inch Plasma screen to escape from it all
                          This community has been my escape since I found it some 6 or so months ago, I detest any agrument that will bar us from sharing our feelings and stories because of some medical mumbo jumbo!!
                          So I tell my IC family I love them and go to bed crying because they have been there to save some of my biggest falls. I pray this will be short lived and we can all meet and talk again soon.
                          JessicainArkansas

                          Comment


                          • #14
                            breaks my heart since I live in that chat room. This one is available to us .... http://health.groups.yahoo.com/group...ronicpain/chat
                            Last edited by Katrina; 04-03-2004, 06:13 AM.
                            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


                            • #15
                              This is a personal invitation to come this room from me. You can be there when I am not there. http://health.groups.yahoo.com/group...ronicpain/chat
                              Last edited by Katrina; 04-03-2004, 06:16 AM.
                              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

                              Working...
                              X