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Reply to "Primary sclerosing cholangitis"

Update

 

we went to Cornell today and met with Dr. Shulka(?) and Dr. Bosworth.  Both seemed very nice and knowledable.  It was so sad however watch them talk to Jeffrey with such sadness in their eyes.  Dr. Shukla is not sure if he can save the pouch.  It depends on if the fistulia is still there.  So Much is up in the air right now.  They are going to do their own testing hopefully sooner than later.  Jeffrey has so much going on with the PSC, fistulia, micro tear in the pouch.  It's overwhelming.  We have an apt with Dr. dietz in Cleveland in September, but I'm wondering if we should go.  At this point all he wants to do is open Jeff up and poke around.  That doesn't sit well with me.  And Dr. Brown wants everything done at Cornell.  Has anyone had a j-pouch repair done at Cornell?  While we are using Dr. Shukla, Dr. Milsome will be involved.  He doesn't take insurance anymore, but does get involved in complex cases.  Basically, he picks and chooses what he wants to do.  Also, Dr. Bosworth mentioned putting Jeff on Remacade. He is also concerned that because Jeff developed this fistulia problem after connection to the j-pouch, he just might actually have Crohn's, even though all the pathology done last year said no.  Both doctors would prefer Jeffrey stay on the ostomy, but are willing to give a repair a shot.  A redo is not possible because Jeffrey doesn't have the length to do it.  But, this is really Jeffrey's decision.  Ok, I'm totally overwhelmed.  This is so serious and been going to far too long.

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