Printer and a number of us have had the good fortune of knowing the good Dr. S. D. Freedman. And yes, where are the good GI doctors who know more than the spelling of cystic fibrosis? Unlike Printer, I have the background to go toe to toe with most doctors and GI doctors frustrate the crap out of me.
Doctors are not all the brilliant collectives around Boston or Minneapolis or Prague. Not all CFers live anywhere near a CF specialist who does any more than manage by guess and by gosh. With the exception of medicines like Creon, there is very little GI medical specialists do that is specific to CF. I believe there is a huge under treated and ignored set of issues that could make enormous difference in the health of CFers. Patients of Dr. Freedman occasionally forget how lucky we are and how rare.
There isn’t a cohesive organization of CFGI specialists that I know of. The CF clinic near me can’t seem to enlist a GI doctor who takes on CF for any period of time. Granted I have had a GI doctor help me with DIOS from that center and he is doing research on bowel motility, a non trivial problem in some with CF. But, that don’t feed the bulldog.
Mild Crohn’s disease is an oxymoron. I can totally understand your daughter’s and your resistance to a bowel prep, let alone the procedure. It is a pain that you don’t easily forget and submitting to a bowel prep can feel like committing Hari Kari. And as if the doctor suspects, her bowels are inflamed, there’s plenty of reason to be assured this is an appropriate test at this time.
Almost anybody who is living without enough GI tract to defecate the way nature intended will defend the occasional unnecessary colonoscopy. For GI doctors, it is a little magic whereby they can actually look at your interior epithelial mucosa. The doctor doesn’t need to totally understand CF gating mutations in order to see unhealthy tissue and swollen organs. That is the worst extension of ignoring tests and this is not a test a sixteen year old “needs”. Maybe the colonoscopy after this one is too many too soon?
Considering your daughter’s GI doctor is interested enough to suggest performing a scope, you might want to keep that spark of enthusiasm going. Who knows, maybe he’s paying off his new articulating ultrasonic side band scope, it is a business and they have bills too. My better angels think he’s figuring out a problem and something possibly intangible has him caught up. Something has you bothered too that isn’t quite verbal. You’ve managed your daughter’s health for 16 years and I doubt you’re a rookie. Then again, both doctors and parents can have sixteen years of experience or six months experience thirty-two times.
As for getting a second opinion from another GI doctor, most likely the first thing a new GI doctor needs to do is take a look so consider having another discussion about the colonoscopy before going for another medical opinion.
LL
