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Thread: Good news! Bladder botox, urethral trauma, foley experience

  1. #1

    Good news! Bladder botox, urethral trauma, foley experience

    I just thought I'd share an update to my ongoing bladder issues with a bit of good news. I think this may bring a tiny bit of hope to someone struggling with some of the issues I am/was. I was on a foley cath for 18 months while healing an Ischial wound and as a result have suffered permanent urethral erosion. I had my urodynamics testing done last Fall as well as all the other testing and the results showed I had poor compliance, a max capacity of 153ml and my urethra is now the size of the Grand Canyon. Dr was very surprised I had that much capacity still. Still we decided to try Botox and I had my first treatment in October 2018. I saw no difference in the first two to three weeks after treatment, supposedly the time frame you should know if it's working for you or not. In fact as the weeks went by, my leakage seemed to be worse. A LOT worse. I wasn't surprised because of my urethral issues and I felt I had lost this war. I was barely getting 100ml with each cath, profusely leaking the rest and overflowing any incontinence garments and clothing. Changing clothes 2-3 a day was becoming a nightmare and I was afraid for my skin, naturally.

    Then, in December, just before Christmas, I managed a 250ml cath. I was in disbelief. Then another and another and eventually 300ml and as much as 350ml ! My average caths range from just over 200-325 now. I have more days where I only have to change incontinence pads vs clothing. I was so elated that I photographed my urinal cup and showed my urologist lol. I must say, you know you have a good dr when he sees a bottle of urine and fist pumps! He was surprised to see all of this improvement after the trauma my body has gone through. Granted, I will forever leak but to know I can at least better maintain it now is a milestone that often makes me cry tears of joy.

    We are doing Botox again at the six month mark and I am continuing on my Trospium, which I've been taking all along.
    The cost of incontinence is remarkable. The diapers, the chux, the constant laundry, barrier creams, wipes. It is still causing some hardship for me but it is so nice to have that lessened a little already.
    So don't give up! I went through three urologists until I found this one... the one who said, "I'm going to help you and we are going to figure this out for you!". Baby steps, baby steps.

  2. #2
    Quote Originally Posted by oncetherwasagirl View Post
    I just thought I'd share an update to my ongoing bladder issues with a bit of good news. I think this may bring a tiny bit of hope to someone struggling with some of the issues I am/was. I was on a foley cath for 18 months while healing an Ischial wound and as a result have suffered permanent urethral erosion. I had my urodynamics testing done last Fall as well as all the other testing and the results showed I had poor compliance, a max capacity of 153ml and my urethra is now the size of the Grand Canyon. Dr was very surprised I had that much capacity still. Still we decided to try Botox and I had my first treatment in October 2018. I saw no difference in the first two to three weeks after treatment, supposedly the time frame you should know if it's working for you or not. In fact as the weeks went by, my leakage seemed to be worse. A LOT worse. I wasn't surprised because of my urethral issues and I felt I had lost this war. I was barely getting 100ml with each cath, profusely leaking the rest and overflowing any incontinence garments and clothing. Changing clothes 2-3 a day was becoming a nightmare and I was afraid for my skin, naturally.

    Then, in December, just before Christmas, I managed a 250ml cath. I was in disbelief. Then another and another and eventually 300ml and as much as 350ml ! My average caths range from just over 200-325 now. I have more days where I only have to change incontinence pads vs clothing. I was so elated that I photographed my urinal cup and showed my urologist lol. I must say, you know you have a good dr when he sees a bottle of urine and fist pumps! He was surprised to see all of this improvement after the trauma my body has gone through. Granted, I will forever leak but to know I can at least better maintain it now is a milestone that often makes me cry tears of joy.

    We are doing Botox again at the six month mark and I am continuing on my Trospium, which I've been taking all along.
    The cost of incontinence is remarkable. The diapers, the chux, the constant laundry, barrier creams, wipes. It is still causing some hardship for me but it is so nice to have that lessened a little already.
    So don't give up! I went through three urologists until I found this one... the one who said, "I'm going to help you and we are going to figure this out for you!". Baby steps, baby steps.
    I'm glad you have found some relief. That said long term results with Botox can be quite variable from person to person. I've read many experiences on these pages that mirror my experience. I had very good results through about 4 courses of Botox. Thereafter, the effects diminished and finally, repeated Botox injections did not work for me. But, there is another alternative in a supra pubic catheter. In your case where you know you will always leak, are concerned about your skin, and incontinence maintenance is so expensive, you and your doctor may want to consider this option. If I were faced with leaking indefinitely, I'd give it good consideration.
    Last edited by gjnl; 03-01-2019 at 01:23 PM.

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