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Viewing 6 posts - 1 through 6 (of 6 total)
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  • #7543

    Hi Everyone!
    Sorry for the long absence. I think I’ve officially turned the corner! Not only did I celebrate my 50th birthday but I am also stabilizing post RC/Neo and post-op UTIs/hospitalizations in May/June/July.

    The sepsis/kidney infections were brutal and came on like a tidal wave. Luckily first line antibiotics were effective. The latest theory is that I have a chronic growth or propensity to grow bacteria in my urethelial lining. This makes sense to me as it was the same scenario with my old bladder and the urethelial lining is still present in my urethra, ureters and into the renal pelvis of the kidneys. I’m now back on Septra DS once per day (which I took for over 30 years with old bladder anyway) and do caths/irrigations twice per day. I’m just starting a trial of Guaifenesin as suggested by a fellow Neo in the US to deal with mucus (which contributes to harboring of bacteria in my case)with hopes that I can ditch the irrigations by Christmas. My next goal is to start D-Mannose with CranActin with hopes of discontinuing the Septra. Some fellow RC’ers have had great success with these while others have not but I’m willing to try and my urosurgeon is very supportive.

    Other than that the learning continues. I’m getting fluids in (over 2L per day) and trying to manage some of my biochemical inbalances e.g. low Hgb and Mg (not sure if others have these problems?) and hormone upset (surgically induced menopause — UGH!). I’ve acheived daytime continence and am working on the night time stuff (don’t drink much fluid after 6 p.m.; still using a timer but up to 3 hrs now).

    I’m also learning to take my Neo out on the road. We’ve done a few camping trips and I’m feeling more comfortable peeing at other locations (away from the security of my own bathroom!).

    Despite the most challenging time in my life, I find I’m finally coming to a good place – physically, mentally, and spiritually. Life is good and all of you have contributed greatly to making it so!

    I’m hoping to stay more closely connected now that I’m feeling up to par.

    Cheers to all of you! Look forward to the Walk on the 23rd!


    Hey Michelle! Good to know that you are finally gaining ground. It was certainly a long haul for you. Good for you in all that you have accomplished. You can be real proud. As for menopause, I share your sentiments. Even though I didn’t have surgically induced menopause my ovaries were shocked when I had an emergency hysterctomy (uterus and cervix only) in 2002 and that wasn’t fun. Symptoms subsided for 3-4 years and then acted up again after my first TURBT and then the full onset of menopause hit just as I was in full swing with BCG! Lots of fun, I tell you. HOwever the worst is over. That being said I know your situation would be worse coping with severe symptoms on top of the bladder surgery and recovery. I think that you deserve a medal!! LOL!

    Jack Moon

    Hi Michele

    We sure did miss you, so glad you have given us an update on your progress. It is great that you have turned the corner and are able to enjoy life away from the home.


    Welcome back! So gad you are feeling better.
    Looking forward to hearing from you often.


    glad you are back. sepsis is horrible. Glad you are feeling better. Thanks for the updates.


    Welcome back.

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