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I beat it!:)

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  • SharonA
    replied
    It is good to hear from you. I am so happy for you. Congratulations on the baby.

    Leave a comment:


  • SandyRN
    replied
    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!

    Leave a comment:


  • SrMaggie
    replied
    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.

    Leave a comment:


  • tigger_gal
    replied
    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

    Leave a comment:


  • marsi4
    replied
    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

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  • vm
    replied
    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.

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  • dwdwdw
    replied
    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

    Leave a comment:


  • Janie Miranda
    replied
    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.

    Leave a comment:


  • Vicki
    replied
    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

    Leave a comment:


  • L. Thomas
    replied
    :woohoo: Good For You:woohoo:

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  • Kara29
    replied
    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

    Leave a comment:


  • dancemomof2
    replied
    I am so thrilled you doing better, we were all kinda worrying and wondering where you were and how things were going

    Leave a comment:


  • glassd18
    replied
    Congratulations, I am so happy u are well!!! Good luck with the new baby!!!

    Leave a comment:


  • dwdwdw
    started a topic I beat it!:)

    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!
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