caret icon Back to all discussions

Digestion and elimination problems after neobladder

My partner has to sit on the toilet for extended periods of time every morning since her neobladder was made (from a good sized chunk of her intestine).
Her bowels are always very loose and she suffers a lot of "tummy aches", this 24 plus years after surgery.
Her digestion never had recovered since the surgery.
Does anyone know how to remedy this? She eats a lot of quality yogurt and lactobacillius but to no avail in big picture.
Now she has also developed enough scar tissue in her colon they can't do a colonoscopy anymore.
I'm interested if there is a dietary solution, or any solution to this, as we can't do anything out in the mornings due to this need to be near a bathroom for several hours every morning.
Thank you!

  1. @Partnerofneobladder - I am not a medical professional and cannot provide medical advice. A suggestion might be to record everything that she eats and see if anything changes with different food. I know that for me, caffeine, spicy foods etc cause havoc with my digestive system so I stay away from the as much as possible. Maybe start with a bland diet and slowly add things to see if she can determine if a food item is causing this. Has she discussed this with her doctors to find out if it is in fact related to her neobladder or something else entirely? I use the 3 year Cologuard test that comes in the mail. It may be something to discuss with the medical provider if a colonoscopy is not something she can have any more. I wish you both the best in finding answers and a solution. Keep us posted on how things are going. My best Linda Urbanski (moderator, team member)

    1. hi. Welcome. Sorry to here this is impacting her live so much. Like Linda, I am not medically trained. However I think sometimes it is the removal of the bladder itself and use of the bowel for different urinary diversions which cause the issues as opposed to specifically the neobladder, from what I have read. This is an experience which may provide some insight and be of use. wishing her well and please let us know how you go. Take care, Laura, Moderator,

      1. @Partnerofneobladder - What have doctors suggested to do regarding treatment of her digestive tract issues. 24 years is a long time to deal with this and I assume that constant loose bowels may also cause dehydration at times. After my RC/IC 8 years ago I was told to use Mirolax until things cleared up - which was in a couple weeks. I know that this surgery can cause digestive issues but this seems like an extraordinarily long time to suffer with this. Has she seen a gastroenterologist for suggestions or considered that her diet may need to be looked at? I wish I had better suggestions but hope that some help or resolution is found, Please keep us updated. Linda Urbanski (moderator, team member)

    2. Thank you Laura, for your timely response! I will look at that site!

      1. no problem at all. Hope you have a peaceful weekend. Laura, Moderator,

    3. - Has your partner found any options that are helpful? I doubt she is the only person dealing with this issue. Hope to hear that things are improving. My best Linda Urbanski ( moderator, team member)

      Please read our rules before posting.