skip to Main Content
BCC_Discussion-Forum-Page-Header-new

IMPORTANT: The Bladder Cancer Canada discussion forum is not a substitute for professional medical advice or treatment. The opinions & contents in this forum is for information only and is not reviewed by medical professionals. They are experiences & opinions of patient members like you, and is NOT intended to represent the best or only approach to a situation. Always consult your physician and do not rely solely on the information in this site when making decisions about your health.

Homepage – Forum Forums Bladder Replacement Options Ileal Conduit or Neobladder Decision

Viewing 7 posts - 1 through 7 (of 7 total)
  • Author
    Posts
  • #42219
    Abarro
    Participant

    Hi Everyone

    I am a 65 year old male that has been diagnosed with bladder cancer.  I am deciding between the Ileal conduit or neobladder surgery and I’d like to understand people’s experience with living with these two options.  Challenges?  Day-to-day routine?  After several years of living with your choice, what you have considered the other option?  Any information you can share to help me make a more informed decison would be helpful.  Thanks

    Andrea

    #42220
    Nightingale
    Keymaster

    Hi Andrea,

    Please review the replies posted to Abarro’s initial post.  See here https://forums.bladdercancercanada.org/forums/topic/new-ladder-and-using-a-catheter/

    The replies are directly related to the question about the Neo Bladder.  I am sure you will receive replies regarding the Ileal Conduit.

    My best,

    • This reply was modified 2 years, 5 months ago by Nightingale.
    #42223
    Stever
    Keymaster

    Andrea,

    I have had an illegal conduit since April 2019. Normally, I get 5 days wear time from my appliance, sometimes more and sometimes less, but I can usually tell when I need to change. I do not have a good stoma and I know several other estimates who simply change at a certain time and day of the week as they get 7 day wear time.

    Please contact Bladder Cancer Canada and ask to speak with some of the volunteers who have an illegal conduit.

    Stever

    #42227
    Chuck
    Participant

    Hi There,

    My wife will be facing her surgery in mid January, therefore we are facing the decision of a neo bladder or Ileal conduit.

    The surgeon has advised that 9 of 10 people choose the ileal conduit.

    She is 47 yrs, and very active at her gym attending fitness classes daily.

    Its a big part of her life, and so I’m worried that the ileal conduit won’t allow as much flexibility as she is used to with the urostomy bag.

    Any feedback, considerations, experience anyone has would be greatly appreciated.

    #42229
    Nightingale
    Keymaster

    Hi Chuck,

    I found your post to be very interesting.  I can tell you that the physical location of patients often impacts what recommendation they receive from the medical community in their area/region.  We have reason to believe that certain parts of our beautiful country are more comfortable and experienced with certain procedures and will have a tendency to recommend one procedure/solution over others.  If I were your wife, I would definitely want to talk with folks who have had the Neo Bladder and the Indiana Pouch as potential options.  Given her age and her love for fitness classes I would recommend talking with Zina a Peer Support Volunteer who I am very familiar with and who has the Indiana Pouch.  Zina is heavily into physical fitness and is also and instructor; if I am not mistaken.  Feel free to reply to this message and let me know if you and your wife are interested.  I would be happy to make the introduction.

    My best,

    #42230
    Stever
    Keymaster

    Chuck,

    As Nightingale said, have your wife contact Bladder Cancer Canada and talk to others that have had the neo bladder or ileal conduit. Not sure if there are many Indiana Pouches being done now that the neo bladder is being done.

    I have an ileal conduit and therefore a urostomy. I still do the same things as I did before but being mindful of the ostomy bag. There are protectors that are available and I have heard of a gentleman that still plays rugby with an ostomy.

    There is a video on the Bladder Cancer web site that was done by a physiotherapist, Christina, and talks about pelvic floor exercises that will help in both before and after surgery.

    #42246
    lefmike
    Participant

    Hi Chuck,

     

    I also have an  Ileal conduit,  my appliances  last on average 4 days,  actually right now I aim for that,  I’m relatively new at this,  June 28th surgery, and I’m still in the process of deciding which type of system works best with me and their comfort level.  In deciding on the diversion, like many here have suggested, I would talk to some who have had the different diversions before making a final decision.  Personally I only had the choice of a Ileal or the Neo bladder, an Indiana pouch was off the table as my doctor does not offer them.   I would have liked to have spoken to someone with the Neo bladder  before my surgery to fully understand how they work.  I do have a few regrets with the Ileal but they are more irritants than anything and I’m sure eventually I will work the kinks out.  I’m now using a flat wafer, its much MUCH more comfortable than the convex I was using previously,  I’m just starting with it,  on day 4  aiming for 5 and no issues whatsoever I hope that continues   but what to do with the 3 boxes of 5 of the convex LOL.

    Best wishes to your wife on her surgery, its life altering for sure but there is light at the end of that tunnel, remember that….

Viewing 7 posts - 1 through 7 (of 7 total)
  • You must be logged in to reply to this topic.
Back To Top