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  • My story

    Hello All and I hope this is a good day. For me its not so good. I am reintroducing myself.

    I joined this site a few years ago and have been reading the post but as a male didn't feel I had much to offer. Also an old guy that no one wants to talk to anyway.

    I had supra-pubic pain after a procedure done in 96 and it was diagnosed and treated as a prostate infection until 2005. Dx'd in 05 by hydro-distention and biopsy under general anesthesia with I.C. chronic cystitis, chronic prostititis and BPH. My treatment was I.C. diet and cysta-q and he immediately scheduled my for a T.U.M.T. We did try Elmiron but all it did was make me sick and throw me into a flare. When I told my GP who Dx'd it as a prostate infection he was skeptical but changed his Dx to prostatosis saying that the bladder and prostate were anatomically close to each other so one could affect the other. He kept me on Vicodin and doxycyline as needed Since their was no cause nor cure I that I am aware of and I have searched a lot of sites I followed my treatment.

    I was on retirement disability in 03 for other medical problems. Every Uro that I saw wanted to treat my prostate because they didn't think that men got I.C. ... at least the ones that I saw on referral. I went back to the Uro the Dx'd the I.C. in late 07 and told him I was using the restroom every two hours or more at night. He said I needed an uptick on my T.U.M.T. and scheduled for Jan 08. Into the procedure room I started on my back and when he put his instrument it felt like someone stabbed me with a sharp knife and the next thing I knew I was facing him. TUMT aborted and went down to the surgery center to see if there was any damage. He told me that my bladder was a problem. When I saw him 2 weeks later he told me to take a 3rd cysta-q. That was the last time I saw him. I told my GP about it and all he did was shake his head.

    We Moved to Washington State in 08 and found what I thought was a good Urology office. I worked with a nurse practitioner there for two years. She said my bladder had shrunk and she had me drinking as much water as I could drink ... which really wasn't that much. We tried prostaprotek, cystaprotek, aloa vera and P.T. but none of those worked. In Jan 2010 I saw the urologist and he said that his evaluation was that my prostate was the problem and causing my bladder inflammation. He wanted me to sign a consent form for a carte blanche. He said he would go in and do what he had to do. I declined because the nurse practitioner that I had worked with over the last 2 years said that what he had in mind was very invasive.

    Moved again to North Carolina in 2010 and now I am seeing a competent urologist...at least he is thought of highly on these boards and I did receive a recommendation from one of the ladies here. He told me that I wasn't on any I.C. meds. So we started with with the Elavil and a histimine which I couldn't take. The second thing we tried was Gabapentin for the pain ... the target being 900 mg a day. I tried a couple of 300 mg capsules and all it did was give me vertigo and make me sick. We cut back to 100 mg x 2 and that gave me the usual fatigue, but also I was confused and my behavior had changed to one of apathy. Also had watery stools. That was at 200 mg a day and over a 3 mo. period. I didn't see myself ever reaching 900 mg a day so I stopped those.

    He mentioned that we would be doing a hydro-distention because that had given me relief in 05. Well...just had that done last Monday and he said my bladder had shrunk and was ulcerated. I knew it had shrunk because I had told him that. I am peeing about 20 ml or a little less than a ounce. In 2005 I was at 120 ml. 2006 -80 ml; 2007 - 50 ml and so on. About 10 minutes into the procedure He came out and told my wife that my bladder needs to be replaced. I know this is major surgery and just from the hydro distention it is almost a week and I am starting to feel better. I do have I problem with my right eye. Seeing lines occasionally and sometimes spots....so I will report this when I see him tomorrow. I am afraid that I am not fit enough for major surgery. I have had some relatively minor surgeries and have not fared well. I am currently cathed and carrying a night bag around. I have read the post on cystectomy's on the boards here. I have looked at most of the videos on youtube.
    My wife is also on disability and is for the most part bed ridden. She has back problems and is also a chronic care patient. We don't know anyone here in N.C. and from what I have read and seen this is not something to be taken lightly. I will tell the good Dr. all this tomorrow but my question is when the Uro says it needs to be replaced Is there nothing else ? I don't feel with our current situation that we can do this. Any ideas would be certainly appreciated and I am sorry about this long winded post.
    Thank you for reading if you have gotten this far and I would appreciate any input at all.

    Charles Wood

  • #2
    Update

    I saw my urologist on Monday...a week after the procedure. He didn't mention bladder removal during the appointment instead he said the procedure went quite well. They cauterized all the hunner's ulcers and said that my capacity was 175 under anesthesia. Right now the pain level is very low and I am experiencing pain upon urinating. Its been a little over a week and the pain on urination is starting to ease up. The hydro-distension doubled my voiding...which is still low but better than it was. I am thinking that I will follow up with another hydro depending on what the urologist suggest. The reason my bladder shrunk was that I did not keep my water intake up. Got tired of peeing all the time but this was definitely not the right approach. Right now I am trying to get 8 glasses in a day and stay at this level.


    Elmiron - tried early on and it made me nauseous
    Amytripiline - caused my heart to race.
    Hydroxyzine - difficult peeing but I may try this again at a lower dose.
    Taken off Avodart as the Urologist said that there was nothing wrong with my prostate.
    Taken off Norco and replaced with Percoset as needed which is a little strong but the Norco wasn't really working very well.
    Cysta-q 2x since I was first Dx'd in 05
    Prelief as needed
    IC diet
    Atenelol 2x for Arrhythmias and tachachardia.

    cwood

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    • #3
      I wish you the best
      <center>
      <a href="http://s1086.photobucket.com/albums/j441/linda5552/?action=view&amp;current=Picture005.jpg" target="_blank"><img src="http://i1086.photobucket.com/albums/j441/linda5552/th_Picture005.jpg" border="0" alt="Photobucket" ></a>
      </center>

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      • #4
        I'm glad you're feeling better. I know it's wise to drink at least six cups of water every day, but (for me at least) it doesn't stop my bladder from shrinking --- I have had many hydrodistentions and they always help and I get my capacity back. I hope your hydro will help for many months.

        Warm healing thoughts,
        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

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        • #5
          I decided I would respond now. I am a male as well. I happen to be on retirement disability now, too.(and waiting to hear about SSD now) My lower back is screwed up with degenerative disc disease. Yep! Anyhow, I reckon I had never heard of T.U.M.T. before. (hmmm) It seems like you have been through the ringer, but I do know you are not the only one. OK. I was diagnosed back in 1997 and got told my prostate must be inflamed at first. Antibiotics did not do any good. I finally figured the prostate must not be the problem after all. (and correct) I guess I should be under the impression that you actually got IC and prostate trouble. (?) Geez! None of us enjoy having IC, or any chronic illness, but it is still good to be properly diagnosed. Yep! By the way, we are all tired of peeing as much. IC really does suck. Oh, yeah!

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          • #6
            Thank you

            Thank you all for your replies and well wishes !! I will certainly be keeping up with my water intake. ICNDonna thank you very much for your advice. I will definitely keep the hydro as part of my treatment. Statesboro ...The T.U.M.T. or TransUrethral Microwave Thermotherapy is supposedly a minimally invasive procedure that shrinks the entire prostate a certain percentage. I was told that it doesn't act just on the part of the prostate that is blocking the urethra but the entire Prostate; with the idea that the blockage will shrink proportionately. It is an alternative to the gold standard T.U.R.P., which is more invasive. If you are interested their is a lot of information on this procedure. My problem was that my current Urologist says their is nothing wrong with my prostate and the procedure wasn't necessary. Thank you once again for your replies and well wishes
            cwood

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