RUSS 2006....Please read

Blossom76 Member Posts: 11
edited March 2014 in Bladder Cancer #1
Russ, as my Dr. told me..age and activity have alot to do w/ your decision. I'm 47 and still have a very active life style. I had to wear a bag for 4 weeks or so, until I healed enough to use my internal pouch (Indiana Pouch). I can tell you now that the internal pouch is so much easier. The only thing is you have to empty according to a clock. I empty about every 4-5 hours, depending on how much I've had to drink. The cath part takes some getting use too, but, in my opinion, there's so much more freedom. I only have to keep a patch, or bandage over the stoma. If I go to long, the stoma will leak, but that's not a problem so far. I just make sure to empty when I'm supposed to. As far as feeling the need to pee...I don't have that. I just have to go by time and also, I get a full or heavy sensation in my stomach, so that's how I know it's time to empty. Also, The UTI probability is lower with the internal pouch than with the external pouch. When I had the external pouch, I did experience some leaking from the bag, which caused irritation and odor. That's just me. The external bag is much easier to empty and you can use the big cath all night for a full night's sleep. With the internal bag, I have to get up about 2 times during the night to empty. I set my cell phone alarm and it wakes me. There are alot of pros and cons to each method, but for me...I'm very pleased with my internal pouch. Also, my procedure can be re-done to have an external pouch, where, I'm told, that an external pouch cannot be re-done. It's something you need to research and consider your life style. For me, I can do anything that I did before. Instead of feeling the "gotta pee" sensation, I can feel a "heavyness" and I know it's time. I carry a cath and can use any public restroom. If I go beyond my time frame, for whatever reason, there will be some very small leakage, but my bandage catches that. I never feel overwhelmed to pee. I hope this helps. Feel free to contact me if you want to discuss further. You and your husband are in my prayers. I'd love to help you if I can.



  • bu2flhrt
    bu2flhrt Member Posts: 3
    Thank you for your input Blossom. I think that Russ2006 is my stepmom. My dad did get the indiana pouch this past Weds. Unfortunately before he could have the surgery he had to have a quad. bypass along with pneumonia.(three weeks ago) I'm glad to hear there may be light at the end of the tunnel. This is a tough road so far, so I hope we have alot of good years ahead of us.
  • handybranch
    handybranch Member Posts: 6
    I have a NEOBLADDER ,it was installed about two years ago. I read your story, there is another way. Neobladder I go pee as normal,feal blotted go pee, I sleep most all the night if I have to go I will wake up .But I do use a cath everydoy to clean out my neobladder.It's great nothing external,All I have is a scar.And by the way I was told that I had bladder cancer in the fourth stage and it did'nt look good for me at all. But I'm still kicken .I'm here and very happy,for that.With gods help and me not giving up I hope I will be here for along time to come.
  • egas
    egas Member Posts: 3
    I know a lot of time has passed, but I am looking for some advice about bladder removal surgery for my mother (age 83). Although she is in good health and a world traveler, I'm not sure if surgery is a good idea - especially when taking into consideration the recovery. She hates to be a burden, hates to be "down" and I'm not sure if at her age, she shouldn't just look into more chemo and more pain meds down the line. What do you think? I understand she in in stage 3 - the cancer has not spread into other organs yet. She lives alone so we must consider the long-term prognosis.Thanks.