I am 24-y-old female from Germany with chronic intestinal pseudoobstruction/diffuse intestinal dysmotility with urinary tract involvement. I have no colon, a permanent ileostomy,a suprapubical catheter and a Hickman catheter.
Nobody dares to make a catherizable pouch (or even conduit) since the urologists here dont have any experiences with my condition and urinary diversion and with continent urinary diversions that are only made from small bowel.
Do you think that a catherizable pouch could be tried first and if it does not work one can switch to the ileal conduit? I know that a longer segment of the small intestine is needed with the pouch but since I already have a functional short bowel syndrome this would not do much extra harm according to my GI doc.
How common are bowel/motility problems after cystectomy with ileal conduit and particularly with catherizable pouch? Do these problems only relate to diarrhea because of the shortened ileum or is there also the possibility to develop recurrent obstructions which are caused by altered/impaired motility (paralytic ileus) and not be scar tissue, especially when you have already motility issues? Could the motility issue be aggravated?
Is it is possible to use other small bowel parts than the ileum or a combination from ileum and other parts? Since we know that my (distal) ileum is most affected in the small bowel while the proximal parts are relatively spared I wonder if one could use the jejunum or a combination from distal jejunum and proximal ileum?
I know that normally you don't use the jejunum due to its greater absorbtion function and the risk to develop electrolyt imbalances. However, how is it in my case since in the most affected ileum the mucosa is most permeable for other agents than normal and may even me more permeable than the jejunal wall? Thank you very much!
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