indiana pouch vs external bag

bu2flhrt
bu2flhrt Member Posts: 3
edited March 2014 in Bladder Cancer #1
My father has to have his bladder removed and I have been to alot of sites. I am getting info. on both procedures but none rate one above the other.I want him to have the right info to make the right choice. I figure personal experience would be the best. Anything shared would be greatly appreciated.

Comments

  • Blossom76
    Blossom76 Member Posts: 11
    #2
    Hello,
    I'm sorry to hear about your Father. I'm 7 months out of surgery and have the Indiana Pouch. So far, I've adjusted very well and have had no problems. I had to wear the external bag for 6 weeks (if I remember correctly) following the surgery, so I've had experiences with both. Please fill free to email me with your questions and concerns. I'm still learing things myself and would be very happy to discuss this with you. I know what your Dad is going through and the difficulty in making your decision. May God bless you.
  • russ2006
    russ2006 Member Posts: 1
    #3
    Blossom76 said:

    Hello,
    I'm sorry to hear about your Father. I'm 7 months out of surgery and have the Indiana Pouch. So far, I've adjusted very well and have had no problems. I had to wear the external bag for 6 weeks (if I remember correctly) following the surgery, so I've had experiences with both. Please fill free to email me with your questions and concerns. I'm still learing things myself and would be very happy to discuss this with you. I know what your Dad is going through and the difficulty in making your decision. May God bless you.

    My husband is having his bladder removalsurgery in early June and is not sure which method to go with -- inside pouch or outside pouch. Can you share any experiences that you've had that may steer us in a direction to make a good choice? Thank you for your input.
  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    #4
    First of all, you do not say where your father is going for his cancer. My first recommendation is that he goes to a major medical institute in your state.
    Has your father had the BCG? Has his doctors told him his options? Bladder cancer cafe, http://blcwebcafe.org/ has a lot fo great information.
    You did not mention the stage of the cancer.
  • Blossom76
    Blossom76 Member Posts: 11
    #5
    russ2006 said:

    My husband is having his bladder removalsurgery in early June and is not sure which method to go with -- inside pouch or outside pouch. Can you share any experiences that you've had that may steer us in a direction to make a good choice? Thank you for your input.

    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.

    Blossom
  • Military
    Military Member Posts: 31
    #6
    I had the Koch Pouch surgery in 2004 at the USC/Norris Cancer Hospital. I was 60 at the time of surgery. Everything went well for the first six months. I am however having difficulty in controlling my urine. In some respects I wish I had the Indiana Pouch in retrospect. Perhaps my problem stems from lack of exercise. I sure miss being able to sleep for more than a couple of hours before having to urinate. Other than that the process was the right choice. I am however a firm believer that they should leave the prostrate in tact if there is no cancer present. I believe this would enhance my ability to control urinating. The people at USC are very helpful and I suggest contacting them.
  • amyhannah
    amyhannah Member Posts: 2
    #7
    Blossom76 said:

    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.

    Blossom

    hi i would like to know more about this surgery and experiences i have had an indiana pouch now for 2 years has anyone had the same surgery
  • amyhannah
    amyhannah Member Posts: 2
    #8
    Blossom76 said:

    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.

    Blossom

    hi i would like to know more about this surgery and experiences i have had an indiana pouch now for 2 years has anyone had the same surgery

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