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Cystectomy-Most Common After Effects

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  • #16
    Hey Debbie

    We just go through things day by day. The marriage is solid, the family support is wonderful and my friends a the best. Can't ask for much. I've never had one infection and that is such a blessing. I can't go to church, church comes to me. I have home health care, physical therapy at home and the best Dr. (Therapist I'm still debating)! I'm happy. I knew going into the surgery to be hopeful but I was also well aware of all possibilities, so we just move forward. Baby steps

    My husband freaks most about the stoma bleeding. I just wipe it and put my bag on. The only time I notice is when I change the bag anyway. Whew though, the smell sometimes is just horrible! Nasty! HA HA HA HA Mucus doesn't bother me, accept it's gross but my father died of bladder cancer, I've seen much worse.

    I appreciate your response and hope you're doing alright! Peace to you!
    "I know what I got" For Mike


    • #17
      Dear Prinny,

      Great to hear from you!

      You have a wonderful attitude about your situation. Some times that can make the difference between night and day with these things. You have been through a lot and are not alone. It sounds like you have a wonderful support team around you.

      I have the urgent feeling as well due to a Skene's Gland and a Trapped Pudendal Nerve so I know how you feel. My bad days are bad and my good days are good. Sometimes it's a matter of living every hour and taking each pain as it comes.

      I hope you continue to post your outcome. It was very refreshing to read your posts.

      Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

      "One hour at a time, this was NOT my American Dream but it has to work out somehow."

      I also have some journals of my journeys, past and some present at: and

      Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.


      • #18
        Prinny, how long ago did you have your surgery? AS Debbie said stoma do bleed very easily. This because the blood vessels are close to the surface so even just brushing against something will cause it to bleed. THIS IS NORMAL. It also takes lots of time to heal from the surgery, for some it can take a year or more, so do not give up home that one day you will feel better. Sometimes urina can have very strong smeel due to certain medications, not drinking enough fluids especially water, or even some foods can make urine smell really bad. Asparagus can make it smell like died in your body. I hope with time things will get better for you. Judith


        • #19
          Bladder removal

          Oh, bummer, I just keep trying to get my favorite pink and it never comes up so I'll just do generic here, but just think pink when you read my posts. Kara nice to see you. Or chat w/ you. We absolutely must keep up a good attitude and keep on being happy in the spirit and heart. Our faith is what my husband and I live by. We have a Christian marriage and the way I figure if I have a bad attitude or ever feel bad about myself it wont do me any good. We started a marriage book long before my bladder was removed. I haven't worked for nearly 4 years now. I submitted my first short story for publication and wont know till Aug if it gets published and completed my first novel and we have started a marriage book as well as a team. We're about setting examples. May sound crazy to most but we give thanks and praise for all my pain and suffering. It gives us a chance to change and make a difference to others. My elderly mother said had I not been so sick she'd never had seen her family pull so close together. My family all lives in Hawaii, they have flown to Phoenix 5 times in the past year to keep me comapny and help me w/ all my surgeries. I'm a blessed woman. This illness has been a blessing and changed me for the better. I'd rather suffer and be the person I am today and suffer than be the snob I once was. I'm honest here and I apologize if for saying this for my past thinking, at one time I'd have snubbed my nose at the person working behind the counter at McDonalds. Today what I wouldn't give to be the person working behind the counter. I've learned a lot about who I was and who I am today. If we learn nothing and don't grow and in turn become bitter and why me why me then we are never going to get better. I may not have gotten better physically but my spirit, my mind and my heart have gotten healed and that by far was well worth my surgery not being a success. I thank you so much for the support.

          Judith, I had my surgery 6 months ago. I am healed from the surgery. The IC symptoms didn't go away and I knew in advance what the risks were. I did all the homework and was educated in IC and this surgery for years before this surgery. Most of the Uro's said it won't work. Yes, I don't worry and do all I was advised to do which is why I'm fortunate about no infections and I don't panic or anything when I see blood. I do thank you for what you have to say but I've was going to have this done about 8 years ago but decided not to so not to disrupt my career because I was able to still work at the time. I only had it done now because at this point I got to the point where I had no choice and had to give up my work and the goal for me now is to get to where Kara is, to have good days. I'd like to have some good days and functional in the home. When I achieve that. It will be step two, no one come to the home to help me but me be able to at least clean my home. Go figure, I always wanted a nice big house and now that I have it I'm actually saying it's too big. I count my blessings so I'm not complaing God, I'm thankful. I truly believe if people educate themselves on everything ahead of time then there will be no pain after. I had therapy done before and after this surgery. I don't know of Urologists that will do this surgery unless it is necessary. In my case it was and of course there is also the very big chance it may not work.

          It's all in how your coping skills are and what you choose to do with what you are given. If it works that is wonderful. If it doesn't make it become a blessing. It can become the greates blessing. It has for me. It has for my husband and it has for my husband. We don't ever give up hope and we try and pray for a miracle but we also are realistic and give thanks for here and now and just don't complain. Too many people have it so much worse off. Worse case is I basically still have IC symptoms magnified, and????????? I have still am alive, I'm still loved. I'm still rambling, ha ha ha ha ha ha, anyway, nice chat ladies.

          Kara, would love to chat privately, love your atittute too! Glad you have great days and I hope enjoy them and maximize them! Life really is great despite what comes our way we can still have a good life, it's how we select to make it! God Bless ladies!
          Last edited by Judith56; 06-14-2007, 04:56 PM.
          "I know what I got" For Mike