Today was a long day at chop but we love dr Boyle. He took over an hour and a half reviewing everything from Boston and Hopkins. He listened, discussed, offered options and changes to her protocol. He really discussed everything with us and he truly cares about her and how she feels. Her issues are definitely more large bowel related vs small bowel. He said she has slow transit, an outlet disorder or dysergenic defecation, functional abdominal pain disorder and some out pouching along the one part of her colon along with some pelvic floor issues.
He is backing off of some of her Daily protocol and adding a new medication (amitiza) that is supposed to increase fluid secretion and transit in the colon.
He said for her to keep her January biofeedback and he will see her again then to see if we made progress or got into trouble.
He said we need to follow up on her chest. He thinks she might have Pectus excavatum.