Perianal Fistula

Digestive health
1

Perianal Fistula
My little nephew back in 2016 out of no where said his bottom was hurting and soon developed fever. With almost 2 months of multiple hospitalizations and doctors visits they concluded it is Crohn’s disease. But he had no symptoms none what so ever. His MRI has no inflammation, his Cal proteins were normal. He only had fistula that soon became infected and this kid had setons put in place for 4 yrs and just got healed and is free of setons for the last 8 months. He is on Remicade highest dose.
Today in the routine annual MRI they are suspecting a new perianal fistula in a different location.
What are we missing here?? Is it really Crohn’s or something else ?
Please can someone share any info if you know. Or ask anyone you know may have experienced this.
All GI both at John Hopkins and Boston children’s keep saying Crohn’s but this child has never ever displayed any symptoms as stated until now except that fistula that started back in 2016. Not even a single biomarker test inclined towards this being CD.

Kindly help. Are we missing something else unrelated to CD?
Thank you in advance.

2

Anal fistulas as you describe, and especially if they repeat in another part of the bowel are often the precursors of Crohns disease, even when there are no symptoms of Crohns.If your nephew is being treated at John Hopkins he is getting good care so the family need to work with them. I’m sure this is very distressing but the main thing is not to let your nephew see the stress as this will not help him.