Crohns or not?

[WindingRs]

Hello everyone,

We are going through the diagnosis process for Crohns for my son. It’s been a few rough months for us ...
My son has two perianal fistulas. I like to know if anyone in here is diagnosed with perianal Crohns if all the scopes and test are normal. We have done colonoscopy, endoscopy, MRI, MRE, exam under anesthesia, biopsies, pill cam, blood tests, and stool tests. Everything is normal. He also has no belly pain or diarrhea. His first GI had a hard time diagnosing him with Crohns given the normal scopes/tests. He referred us to one of the top IBD centers in Los Angeles area. The IBD colorectal surgeon examined him under anesthesia and placed two setons, but says the fistulas do not have appearance of the Crohn fistula plus the biopsies are normal. The new GI, however thinks the fistulas are indicative of Crohn, and wants to start him with biologic treatment to heal the fistulas. At the same time, he can not tell us for sure that this is Crohns. He does not think we should decide quickly, but in the next month or so. I am a bit reluctant to start biologists if we don’t have clear diagnosis. Any advice?

 

[my little penguin]

No fistulas here
But Ds was “diagnosed “ with crohns at age 7 as a “working dx” - later changed to a real dx and back and forth over the past 10 years .He has seen multiple Gi at multiple hospitals. As a parent is hard to hear a “working dx of crohns “ but after many years and seeing the biologics work well for ds for his crohns (he is back to official crohns again ) as well as other “stuff” that has popped up -juvenile arthritis and neutrophilic diseases (verdict still out in which one each doc has a different opinion) .
Ds now asks two questions

1.Will the drug significantly help the current situation?
in your sons case heal the fistulas
2. Can I still take xyz med for abc stuff or does this replace those ??

Ask your doc BRAND
Regardless of dx
B-what are benefits to taking it ?
R-what are your child’s actual risk ?
A-what alternatives are available?(benefits/risks )
N-what happens if you do nothing ?
D -decision

I have never regretted giving Ds biologics
He had allergic reactions to two of them
But the difference in him is nothing short of a amazing .

Good luck with a very hard decision

 

[WindingRs]

Thanks MLP for the advice. I didn’t know your son had back and forth change in diagnosis. Must have been very difficult for you over the years...
We’re just starting this road and it’s been very rough so far.