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  • rachelm
    replied
    I agree that we all have to find our path in the treament journey of I.C. This disease is so individual. We all offer insights that might help someone else. But we certainly don't all respond in the same way to every treatment so we have to look for the right ones for ourselves. I think this board is great because it offers diversity in people and many perspectives of treatment options.

    I for one try something and decide if it helps or not and go from there. Some people cannot tollerate urine in their bladder for very long with out having extreme pain. I understand that feeling and I think we have probably all had it. Other times we feel the urge but it doesn't immediately turn to pain. If it's possible to wait out the urge a little it will help preserve our bladder capacity which will be better for our I.C. in the end. I know that this is not always possible for me and I'm sure for others. Some may never be able to wait. We're all individual in our responses. I think Pristine was just sharing her experience and success. We should all be happy for anyone who has found a succesfull treatment especially when it improves the quality of life as Pristine described.

    Just a few of my thoughts on the matter. I hope we all keep sharing our stories. Even if it's not something possible for me, I want to hear how a treatment has helped a fellow I.C. friend. Thanks to everyone for sharing. I appreciate hearing everyone's experience. grouphug

    Rachel hi

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  • Niteflyer
    replied
    No i do not have supernatural strength at all. I'm far from that by all means. Nor was i implying that anyone was not tough or stubborn enough to over power a hateful bladder. We all have pain tolerence levels and i guess after, having my ureters reimplanted, my gall bladder out, a hysterectomy and having 6 broken vertabrae fused with harrington rods and carrying around a closed head injury for over 20 years that i just will not lay down and die for this disease which none of us deserve to have. We all fight it the best way for us as individuals. Every account on this board can be a help to someone and thats the cool thing about sharing experiences. kissing

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  • rachelm
    replied
    Pristine, hi
    I'm happy that the bladder re-training has worked for you so well. I know that was a big concern of my dr. when I first got diagnosed. He said that many women's bladders shrink because they empty their bladder so frequently due to the constant urge. I still had good bladder capacity at the time of diagnosis so he encouraged me to try and wait 15 min. after the initial urge unless it was too painful. I am able to do this unless I'm flaring at which time I just have to get it out asap because it's burning too much. I hope this helps me to retain good bladder capacity. With my I.C. symptoms I deal a lot with pain and some frequency about 13-20 x a day which is a lot less than many fellow i.c.ers. I feel like I can manage o.k. as long as I don't shrink my bladder in the long run. So I know it's hard in the beginning but the end reward is a better capacity. Koodos to you for doing it! wink I know it wasn't easy especially since you were going so frequently.

    Rachel

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  • Zanni2
    replied
    How interesting? I guess most of us just aren't tough I guess! Most of us are just ordinary people who don't have a high tolerance to pain, discomfort or pressure. Oh well! I admire someone with supernatural strength!

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  • Niteflyer
    replied
    I'm very happy with the every four hour routine and it has helped me through some horrible times. The urge even passes as i hold it. This therapy has been the best thing that has happened to me and if i urinate before that time is up i start going more and more until i go 5 to 6 times per hour. Its phony bladder signals and if i give in to those i may as well have no life. I'm very happy with my routine and without bladder re-training i would have died. I never want to go back to the way i hurt before i started bladder retraining. No i dont burn at all when i pee. I just have the phony signals 24 hours a day, just like we all do. When i go pee now, i go nearly a cup full where as if i gave in to the phony signals i'd pee like 4th of a teaspoon 5 to 6 times per hour. Bladder re-training is wonderful and no its not torture, its just how tough a person is and how to not listen to our **** bladders. The longer i hold it, the quicker my flares subside. I had my only Hydro a year ago and thanks to this routine it has been an 80% improvement over what my life was like before it. I actually can go places now and stand in long lines without crying and running for a bathroom. As long as I'm not in a flare, the pain is very little.
    Hugz/Pristine

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  • Britgal
    replied
    Sorry you are going through a bad flare right now. You must be a very strong lady, four hours is so long, I could never wait that long, even with bladder retraining. Food flare for me, usually only lasts a couple of days. If it were me, I think I would get checked for an infection. Hope that you get some relief soon. Keep us posted, soft hugs Iris. grouphug

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  • hillio75
    replied
    Sorry you are hurting Pristine. For me food flares usually subside in a couple of days or less. I'm sorry to here you are still flaring. Like others have posted, you might want to get checked for a UTI.

    Big hugs,
    Nicole

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  • tigger_gal
    replied
    (((((hugs)))) sorry you are flaring hope it goes away quickly. sending hugs and prayers
    Brat

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  • JAF
    replied
    Pristine,
    If it is burning when you go, it might be worth seeing if you have an infection. I hope you are feeling better soon. grouphug

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  • Zanni2
    replied
    Four hours without urinating? Why are you torturing yourself? eek Based on observation thoughout much of my life, I have noticed that normal women generally urinate every 2 or 3 hours. Who said every four hours is the norm? It must have been a man! I have observed that going every four or five hours is typical for men, not for women! They usually have larger bladders than we do.

    Personally, if I hold it even just a little longer than usual, (I go about every 30 to 60 minutes) this just irritates my bladder more and causes more irritation, frequency, urgency, pain and pressure. Urine is acidic so holding that acid just burns the lining of the bladder more in the long run. To each his (her) own, but bladder retraining sounds more like a form of torture to me! banghead

    Zanni2 angel

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  • Vicki Brown
    replied
    Pristine, Just do whatever it takes to feel better. You know how...so relax, take your meds, use heat or ice, get some sleep. We;ve all been there and we can't change so stop beating yourself up.

    I had colitis for 4 weeks and didn't eat for 6 weeks. Trust me, I know what you're going through. Time heals.

    Take good care of yourself, love, julie grouphug angel kissing

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  • Pristine
    started a topic Long Flare

    Long Flare

    I'm in my 3rd week of a flare due to a steak i ate at the steakhouse. I usually have them specially make my steak but i had a case of dumbness lol and ate one off the bar. It had some sort of season salt on it banghead and i just kept eating. No one to blame but me lol. I'm still making my 4 hours without peeing, not that it doesn't burn like hell but if i give in and go pee before my 4 hours is up, i'll be right back to the old 80+ times per day that i had before i was diagnosed. Bladder re-training has been one of my Godsends. So I'm staying strong here. Just a warning, please be careful of seasonings on meats ladies....and gentlemen if there are any here.
    Hugz/Pristine
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