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Never have I felt worse!!!

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  • #16
    classicclem here

    Just thought I'd drop a quick line to tell you all about what has been going on with me. I've been fortunate enough to be introduced to Dr. C. Nickel in Kingston Ontario through Dr. Ken Peters at Beaumont Hospital in Royal Oak Michigan. I sent an email to Dr. Nickel when my family doctor was reluctant to send a referral to Dr. Nickel. (that is required in Canada) Dr. Peters couldn't do it because it is another country. Anyway, short and sweet I got an email back from him the next day and he said he would see me. That was May 10 and I've already been up to Kingston on the 24th and he has a game plan already in the works with bladder removal being the very LAST option. There is a trial going on in Canada now with lidocaine which is instilled in the bladder and I've crossed one obstacle to be excepted but have to get funding from the "powers that be" as I'd have to be there 12 days and then there is the transportation and meals as my hubby would accompany me. Dr. Nickel's thinks this will fly but his back-up plan in being set in motion for laser surgery of the Hunner's ulcers asap. I know that the Good Lord is watching over me as Dr. Nickel's waiting list is about 3 years. All the prayers are helping!!! Took the train to Kingston last weekend (about 500 miles) and back on Wednesday--was just horrible and am still suffering but hopeful. Should hear from the "powers that be" sometime this week as Dr. Nickel's wants me up there early June. Good things do happen!!!! Thank you all for your responses and prayers. You are all in mine also!


    • #17
      Glad that positive things are happening for you. I hope it continues.


      • #18
        I had my bladder removed in Dec 05...altho I had alot of complications, I would do it again in a second! I went back to college at 46....worked 2 part time jobs at Dr's offices, gave piano lessons, taught at the college I graduated from for 2 1/2 years and got the old band back together 4 months's a HARD road, but well worth it for me..
        After suffering with IC for 40 years, my bladder was removed in Dec 05...YAY!


        • #19
          Sorry to hear your in so much pain. You mentioned Michigan my doctor is leaving and moving to Michigan not sure where but his name is John Stoffel if you happen to hear his name he is very good and very nice. I had my bladder out in 2008. The constant pain of IC is all gone. but I have had many difficulty's with my loop and hurnias. I would not hesitate as what do you have to loose. You are misserable right now. Yes it is hard to make your mind up but when I did it my bladder was not working any more and I had to cath over 40 times a day. I figured I never want to have the urge to pee again. I told the doctor if I still have pain well at least I don't have to run to the bathroom anymore we can manage the pain. I wish you the best I will answer any questions you have Just ask nothing is too personal when it comes to this. good luck. Oh I had trouble with depression also once I had my bladder out and weened off long acting pain meds I was better. best wishes.
          IC/IBS Hopeful : I had my bladder removed on September 29, 2008 for me but I am also so happy I have no regrets