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Update on first bladder instill

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  • toby75
    replied
    Thanks Ziggy! I too will say that the first hydrodistention I had on my bladder to diagnose my bladder issue brought me 8 months of pure 100% relief! During that time I took no meds, ate what I wanted, I only had bladder problems for 3 months prior to my diagnosis, and had never heard of IC until the uro told me after they hydro. Since I felt so much better I never took the time to research IC because I thought it was gone,out of sight or pain, out of mind.

    8 months later I had major surgery and my IC came back 10 times worse. I have not had any relief since then,I take pain management 24/7. I had another hydro done but did not get relief from it but I also think too that since I had been on pain meds daily I couldn't tell.

    I pray I am in that group of people that will continue to get relief from hydros. I plan on another one soon and getting off constant pain meds before so I can see if I get the relief!

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  • Zygala87
    replied
    Hi Amy. I am a little unsure if it has helped my bladder. I am doing very well. It may be the diet or the Elmiron. A Hydrodistention, when I first discovered I had IC, helped me a lot. It brought me down from a 10 to a 2 in pain. This was before I stopped smoking. Maybe I would have returned to pain hell had I not stopped smoking. I just never liked my addiction controlling my whole life. Hurting my Husband and my kids and grandkid. The last straw is the cost. Cigs. cost from $30 - $40 a carton. Money I now spend on myself for nice cloths, trips, gifts. With my morning (one cup) of coffee I crave a cig for about two minutes. I chew on a mento and put my mind someplace like my computer. Than it is forgotten. I will never nag anyone to stop smoking as I know what it is like. It is all up to you to make that decision. All I will say is CHANTIX does WORK when nothing else ever did and without much cravings. I go to bed and think "gosh I haven't even thought of smoking all day" I would have bet my house that would never happen. Keep in touch please. I care, Hug, Ziggy

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  • toby75
    replied
    Ziggy-question about smoking....

    Ziggy

    I saw that you have quit smoking after smoking for years. My question is, have you noticed a difference in your bladder? Has it helped at all? I still smoke and my husband actually quit using chantix too, but I wonder if my smoking truely causes problems with IC. I know smoking is generally bad for your health but I want to know how bad it is directly on the bladder?

    thanks
    Amy

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  • jen74
    replied
    Thanks gals for replying.
    Hi Moonheart. Actually , no I dont have another doctor to go to at the moment. I am looking into finding a different one though just to get another opinion. I am not sure what luck I will have finding another doctor as there does not seem to be any knowledgable docs around here.
    Hi sweettabby. As far as the instill being severely painful, when they put the stuff in, I was numb the first two hours actually. I did not feel anything at all hardly, but it felt weird actually. Anyhow, then when I tried to pee the stuff out after two hours, I could not pee at all. It must have swelled me up insdie. When I was finally able to pee, my stream was sooooooo thin actually for the next day, so things were swollen I assume. It seems like I had some sort of reaction to the instill. I just Do not want to go through that again with not being able to pee. That was very scary. I did feel a little less pain yesterday, but I am getting some spasms this morning which I did not have before the instill. Not sure what to think.
    ANyhow, thanks for responding.
    Jen

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  • sweettabby
    replied
    I know my first instills were horrible. I cried they hurt so bad after. But after about the first four I did start to feel better. Eventually they did work for me and are the only thing that works when I get bad. Hopefully, that won't happen again. Could it be you just need to give it time? Hope you find what works for you.

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  • Moonheart
    replied
    Jen, do you have any other doctor you can go to? It's just sounding so much like this is not a good fit for you. I hate to know you are suffering like that.

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  • jen74
    replied
    Thanks for replying Ladies.
    I had the instill on Friday, and I still am not feeling right. I dont think it helped at all, infact,I think it made me worse. It may be that I am allergic to one of the meds they used, who knows. Maybe the marcaine they used in the instill caused my nerves to get all messed up and that is why I could not pee, or that it swelled me up to much. The thing is, I was in pain afterwards still, even worse than before I did the instill. I could understand if I did not feel any difference and that maybe it would take a couple times to work, but it should not have made me worse I dont think. I am not to keen on doing it again. I plan on telling the nurse that I am going to wait it out for a while before doing anymore instills. The pain after having that stuff in me and having to get that stuff cathed out because I could not pee even caused me more pain. It just was not worth it to me.
    I still feel like when I pee, I dont get it all out and that sometimes, I dont even get the normal signals that I should be getting telling me to pee, or maybe because I feel so much pain down there that maybe that is why I dont empty welland am getting all these werid feelings.My hubby said that I am probably having a hard time because everything is swollen and inflammed. He thinks I should be on steroids, and I have to agree with him on that. But again, these doctors dont want to help for some odd reason. I just dont get it.
    I Am a little worried though , as I dont think this doctor I see offers anything else. She definitely does not believe in giving anything for pain. I think it is absurd to stand by and watch your patient be in agony and offer nothing to help. THat is not being a good doctor in my opinion. She gave me lyrica, which I read is not usually used in helping IC pain,that it is more of a nerve pain med that diabetics use, and if it is going to help, it can take weeks to work.
    I really need to talk to her, but I can never get her to call me, all I get is the nurse. This is insane. Anyhow, thanks for replying ladies. I just am at a loss right now as of what to do.I am in so much pain and have no help at all.
    Jen

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  • Zygala87
    replied
    Hello Ngazerro. I just wanted to tell my experience with Chantix. Over 50 years I never went without a cigarette. I am now on my 52nd day without smoking. I am an A type person and would have bet $1000 that nothing could help me stop smoking. This stuff REALLY works. I have had a few times I wanted to smoke but found if I just put my mind some place else i.e. TV, computer, it went away. I have spent the evenings watching TV or something and when I was ready for bed I thought "Wow I have not even thought of smoking!" I didn't find the support that arrives on our computer much help but it is nice to see how much money I have saved and how many days I've gone without a cig. My Granddaughter is so happy that she cried. (20) years old. I can't remember how many weeks we need to stay on Chantix but I'm going all the way. If I can help please feel free to email me [email protected]. All my best. Ziggy

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  • MamaLoca5
    replied
    So much of medicine is trial and error. What works for one person doesn't necessarily work for another. My first bladder instillation was difficult too. My doctor catheterized me (always painful for me), put the medication in, then sat with me while I got past the pain. Then I was in heaven, no pain at all. He too told me to hold it as long as I could. After 6 hours, I tried to urinate, with no luck. I ended up having to catheterize myself, but the next day I was fine. I am fortunate to have a very empathetic doctor. Definitely talk to your doctor about your reaction to the medications and take an active role in deciding what to do next. Nobody knows your body like you do.

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  • ngazerro
    replied
    Thanks waterflow.. Hopefully they will get better. I had to take a percet everynight since Tuesday. Today I am feeling a little better, but I did not have to work. I think sitting at my desk makes my worse. I also start elmiron
    as soon as it comes in the mail. I sent it off to express scripts and so far it has taken them about two weeks to get it to me. I also start taking chantix to quit smoking starting Sunday. Hopefully that will work...

    Leave a comment:


  • kadi
    replied
    Hi Jen,
    Here's a post I wrote awhile back on adjusting instillations to work for you as an individual. Maybe there's something in there you can talk about with your doctor... Sending a hug & wishing you better days soon!
    http://www.ic-network.com/handbook/selfhelp0206.html

    Leave a comment:


  • waterflow
    replied
    ngazerro, my instill did not help me with the first installation. It took a lot longer. I don't understand why some doctors tell the patient it should be an instant relief. My Uro didn't.
    Last edited by waterflow; 03-24-2007, 09:32 AM. Reason: typo again

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  • waterflow
    replied
    It does take time for your bladder to get used to it. I had a lot more pain from them in the begiining but with time that stopped to just discomfort. I would say to try just one ingredient at a time. That way you will know which one is not the one to use. I didn't start out on just the heparin/lidocaine. Had other ingredients also but they just made it worse. I too would not pee much after having one done but with time I pee up a storm afterwards. Don't give up on it yet. Just explain to them you want to try just one at a time. It takes all different combinations. You are just starting out to find yours. Did they at least use lidocaine in the erurethra first? If not I would tell them you want that. If they tell you that it does not help any tell them they are wrong and you insist on it. Or maybe find another doctor?

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  • ngazerro
    replied
    I had my first instill on Tuesday. I called the doctor on Thursday because I keep hurting worse. She said it was should have made me fell better, and did not understand why I was worse. I go again on this Tuesday and I am not looking forward to it. My pain seems to be more in my kidneys and they don't understand that either.

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  • littlemyrn
    replied
    I too have had reactions to instills. My home instills are lidocaine/elimiron and were cytotec, but the cytotec caused an extreme reaction, fever, violent shaking, etc. so we took that part out. The way my uro described it to me is that they are now believing that the elimiron when taken orally is so weak by the time it hits the bladder that it is not effective, so that is why we are doing instills, it does help some. You may want to talk to yours about just those two ingrediants. I also use lidocaine jell afterwards or a frozen water bottle between my legs for awhile and that helps with the discomfort. Good luck.

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