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  • I beat it!:)

    Hi!

    Hope everyone is doing good, i havent posted here for quite a while.
    I used to be on these boards alot for along time.

    IC ruined my life completely it took away my identity and all that i was, it made me very depressed and almost suicidal at points.
    So many doctors and tests and "treatments" and nothign would work, still no one took me serious.
    I got everything from that its just in my head, its stress, it goes away with time, the more doctors i saw the more i lost confidence in medical science and realized that this disease really is one that the doctors dont really know alot about, and instead ofbeing honest and admit that fact, most of them pretend to know cause of pride.

    For the past two years ive just been trying to get bladder removal surgery done, because i had no life i couldnt even leave my apartment.
    After along time a doctor finally showed up who took this seriously enough and agreed to surgery, i was only 25 at the time and well it was a chance to get better.
    He told me hed only give me a 20% chance of complete releif but that its the last that can be offered and i wanted to do this.

    I had my surgery in mid november last year.
    It went great, surgery wasnt painful or anything, I had to spend three weeks in the hospital afterwards and that recovery was tough, not painful just tiering, I lost alot of weight and it was pretty hard.
    I had my wife by my side though and that really helped.

    The procedure they did, was done so that they actually left the old bladder but disconnected the tubes from the kidneys and hooked them up to a new bladder that is made out of 2 feet of small intestine.

    Nothing gets into the old bladder and it doesnt have to stretch and empty all the time.
    Doing the procedure and leaving the old bladder was a much smaller operation with alot less sideeffects.

    Now I just have a tiny little opening on my stomache thats the size of a small coin, and covered with a little bandaid thing
    I empty that roughly every 6 or 7 hours and it can hold up to 700 cc.

    I noticed a massive improvement as soon as i woke up.
    Not having to go pee all the time was a godsend, being able to just drink a few cups of water and not worry about what itll do was great.

    Now its been a few months since the operation and I am stll recovering but getting better and stronger everyday.

    I hardly feel my old bladder at all.
    Once in a while ill get a tiny feeling of presure but it always passes quickly and isnt bad, usually stays away for weeks at a time and comes back for an hour or so, and even when i have it its not bad at all

    Ive been able to do things i couldnt before, go spend time with friends, take long walks, go out for supper, run errands its awesome.

    Sometimes when ive been out and about fixing everyday things, you know going to the bank, driving to pick up my brother from work, then going to see my dad, then to the post office, being out for hours, then when i come home and start unloading my car ill just stop and thing "This is so awesome ive been out and about running around for 4 hours and havent had to pee or feel anything at all, not once!"
    I try and appreciate this, but it is hard, human nature is quite gross, eventhough ive been sick for so long, when you get better you get used to it and it becomes your everyday life, and you dont think back on how it was.
    You dont appreciate it enough, unless you make yourself
    Now I take it for granted that i can go out for hours at a time, eventhough i couldnt for years.

    This surgery has saved my life and everyone around me too.
    Just seeing the look on my dads face when i stop by his office just to say hi is very nice since hes basically seen me bedridden and housebound for 2 years.

    I am still not completely recovered but i am getting there.
    I do sometimes have urethreal discomforts that can be annoying but they too pass and i am sure will get better with time.
    They too can be gone for weeks/months at a time, and even when i do have them they are not bad nor do they hamper my life.

    I just want people to know that surgery can really help once you have tried everything.
    I did try all there was before they did this, and it worked for me.

    I want to say too, that i was abit naive about the surgery i didnt realize that it would take alot longer to recover they i imagined I thought id be fine in a few weeks.
    True enough i was home in 3 weeks but there was some really hard times ahead of me.
    I was so weak and fragile, Id pass out several times aday, and if i tried to cook or just do something that requires movement I would get faint and have to lie down.
    I wasnt myself for almost two months but i got stronger and stronger and its nice.

    The recovery was tougher then i thought but well worth it.

    Besides that, my wife is pregnant and due anyday now, I am so happy I get to see my baby come into this world without having this disease anymore



    So anyone sitting there reading this, hurting as much as I have been countless nights, watching the days roll by, giving up hope and fading away more and more everyday with no light to reach for, look at my story and realize that i have been where you were and now I am doing good
    If someone would have told me Id stit and post in sucess stories 6 months ago I would have gotten angry and never believed them.
    Yet here I am.
    There is always hope, and this disease is terribly, its mean and its stubborn, but it doesnt mean that you cant beat it because you can.
    You just have to be even more stubborn

    See you around!

  • #2
    Congratulations, I am so happy u are well!!! Good luck with the new baby!!!

    Comment


    • #3
      I am so thrilled you doing better, we were all kinda worrying and wondering where you were and how things were going

      Comment


      • #4
        Glad we could help you along the way. It's nice to see you in better spirits and no pain. Congrats with your new baby!

        Kara
        Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

        "One hour at a time, this was NOT my American Dream but it has to work out somehow."

        I also have some journals of my journeys, past and some present at:
        http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

        Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

        Comment


        • #5
          :woohoo: Good For You:woohoo:
          TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
          My Helpful Hints for Home Instillation: http://www.ic-network.com/forum/show...985#post309985

          Institute of Female Pelvic Medicine (J. Dell, My MD) http://www.mypelvicmedicine.com/index.asp
          Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
          I post to encourage and offer total support for rescue instillations.
          Find me on facebook: L. Clark Thomas
          Louann

          Comment


          • #6
            Praise God! You give me hope! There are many days when I don't even have that. Stories like this are why I come to this board. -Vicki
            Blessings and Hope

            Current Meds.
            OFF MY MEDS
            Vivelle Dot: .10 changed every 72 hours
            Compoounded Progesterone 25mg/night

            Current Supplements
            Hydroeye: 2 pills AM

            Diagnosed
            1995: Endometriosis
            1998: Interstitial Cystitis
            2006: Bladder Endometriosis, Total Hysterectomy and Bowel Re-Section
            2008: Removal of Ovarian Remnant and Endometrial Cyst That was Obstructing Ureter
            2012: Laparoscopic Removal of Adhesions and Staples

            Comment


            • #7
              What wonderful news! I have been wondering how you were doing. I am so glad that you are doing so well and it is very nice of you to come back to the boards to update us.
              hugs,
              Janie

              Comment


              • #8
                Thanks guys

                Yes dont worry there is always hope, even for someone who was as down as one could be, really never give up and when you have tried everything definatley remember that surgery is an option, but not until you really have tried all there is.
                That period was hard but once you got through it it felt better to go through the surgery with no "what ifs"

                This board really helps to keep ones spirits up, and I believe alot of people do get better but just dont think about posting a success story, so if you feel that there arent that many of these posted, there are probably alot more just that they are not on this board

                Good luck to you all and thanks for all the kind words!
                Daniel

                Comment


                • #9
                  So AWESOME to read about the changes in your life, Daniel. I'm really happy for you - thanks for coming to share the update with us.
                  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


                  • #10
                    surgery

                    Hi and welcome back. I have been thinking of you so often and reading your post today made my day. I have been really down lately and desperately pushing for surgery. I totally agree with you that doctors know very little about ic and are very reluctant in doing surgery because not all outcomes have been positive. I have had enough and are going to have surgery for better or worse. I have endured 35 years of horrible pain.

                    You don't know how happy I am to read a positive post about ic. It is exactly what I needed to read and you have certainly given many of us hope. IC is not the end of one's life and doesn't have to be a life sentence for those who suffer from it if only doctors could be more educated about it and more willing to do surgery for those who have suffered from ic for many years. I think the worst thing that doctors can do is allow patients to suffer and deny them surgery. I totally agree with Lesa.

                    I wish you the best with the birth of your child and may you experience all the happiness you deserve with your wife and child. When you make a full recovery go out there and live life to the fullest. Enjoy every day without the ugliness of ic and keep us posted. You are brave and did what your insticts and heart guided you to do and beat the odds and proved many doctors wrong who keep telling patients that surgery is not the answer. I keep hearing that I will still have the pain only without a bladder and I hope I can go back and tell them that it isn't so one day too.

                    Your post has helped me more than you will ever know because I was so close to giving up. I want to thank you for giving me hope as I am barely hanging on. Lesa thank you for your positive input time and time again.

                    :woohoo: :woohoo: :woohoo:

                    Marsi4

                    Comment


                    • #11
                      wwwooohhhooo thought you just bailed o off.. it was so nice to hear from youn us, or we scared you.
                      Besides that, my wife is pregnant and due anyday now, I am so happy I get to see my baby come into this world without having this disease anymore
                      CONGRATS on your new bundale of joy
                      'The will of God will never take you where the Grace of God will not protect you.'

                      Comment


                      • #12
                        Thank you for posting. Your positive words give me lots of hope. I'm hoping to have the surgery very soon. I'm waiting for an appointment for a second opinion. I hope this one agrees. If not, I guess I need to look for a third. I'm not giving up, if they don't agree. this madness has got to stop.

                        Comment


                        • #13
                          So glad to hear that things are going well for you. Congrats on the new baby..post a picture when the little one gets here. I'm really happy for you!
                          *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


                          • #14
                            It is good to hear from you. I am so happy for you. Congratulations on the baby.
                            Sharon

                            Shopping??? Did someone mention shopping? I'll get my hat... ;-)

                            Where I can be found most days.



                            Link to the ICN Patient Handbook:
                            http://www.ic-network.com/handbook/

                            Link to the IC Diet:
                            http://www.ic-network.com/diet/


                            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.

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