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Ileal conduit pros/cons and quality of life
I am a 67 year old female living with Multiple Sclerosis for 33 years. I have required a Suprapubic catheter for 8 years. About 4 years ago, this has started pouring urine from around the catheter insertion site. This large amount of leakage is causing me to have to change dressings, underwear and clothes 4-5 times daily. My urologist has tried Botox, increasing catheter size and other treatment options to no avail. She is now recommending bladder removal and placement of an Ileal conduit for urine removal. I was wanting to hear from others who have undergone this surgery and find out what the positives are and what challenges you have had. I don’t want to swap the devil for the witch by going through this intervention if the outcomes are negative. I just want a better quality of life. Please enlighten me with your experience. Thanks!
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Hi, @oma1. I'm so sorry to hear that you're having problems with your catheter. Changing your dressings and clothes several times a day must be frustrating -- and tiring!
I wanted to point you toward a discussion happening in the Bladder Cancer support group that you might find helpful: Neobladder or Ileal Conduit, unsure -- https://connect.mayoclinic.org/discussion/neobladder-or-ileal-conduit-unsure/
There are a few members in the discussion who are offering their experiences with an ileal conduit.
Has your doctor recommended a timeline for moving forward with surgery?
@klp Oh thank you for pointing me to the group that may have helpful answers for me. I don’t have cancer, but a neurogenic bladder from the MS. It’s so bad that it is going to require a urinary diversion procedure. I just want to learn more about these options. Thanks so much. I am new on this support site, so do I need to tell my issue again to this new group?