Wednesday, April 10, 2013

Results

I just finished talking with the Dr. DiLorenzo about the results from the motility study. Short version, there is no large bowel motility disorder. In comparison to the results from Kadyn’s first motility test in (Dec. 2012) there were signs of improvement. This is most likely because the cecostomy tube is doing its job and letting the bowel rest, in turn, becoming less dilated. When they gave Kadyn a stimulant to challenge her bowel contractions it showed to really help. The doctor’s recommendations were for us to lower the volume of go-lytely, but add the stimulant to each cecostomy flush. She will also discontinue the Miralax (for now) but continue the Amatiza pills increasing the dosage if necessary. We now know what to do to keep the large bowel clear. However, Dr. DiLorenzo did say she could fill up again because she may still have problems in her small bowel. There is no good way to test small bowel motility and CFers are prone to small bowel disorders like DIOS (which Kadyn has). This is good news because there is a way to keep Kadyn’s bowel clear without surgery. But, I would be lying if I said I was not frustrated. I want a fix for Kadyn and we are not leaving here with a clear solution. Bottom line…CF is causing these problems and that reality is a very very hard thing for me to hear.

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