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Crohn's with Iron Deficiency Anemia. How Often to Scope?

15 year old diagnosed two years ago with Crohn's basically everywhere and iron deficient anemia. She had an endoscope and colonoscopy and was immediately put in hospital. Going for Remicade every 5 weeks now down from 8 weeks. Also having iron transfusions and not changing the low Ferritin/hemoglobin levels. Had capsule endoscopy recently and GI said he did not see anything)need second opinion. GI thought she had a blood disease, went to hematologist and he said not a blood disease and also thinks she is bleeding somewhere. GI did not order blood occult I had pediatrician do it and it was positive. Should I ask for another endoscope and colonoscopy since it has been two years? Tried to get a second opinion or records review from the top hospitals and our insurance does not go out of state. Hoping Atlanta(CHOA) will have a charitable plan for a second opinion. Thank you
 
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Maya142

Moderator
Staff member
I would DEFINITELY get a second opinion and ask for scopes again. She's bleeding from somewhere clearly. The GI needs to figure out where it's coming from because if she keeps bleeding, no matter how much iron you give her, it's going to stay low.

Scopes are generally done routinely every couple of years, but if there is a problem, then they are done ASAP.

I really hope you are able to find a hospital that is willing to do a records review or second opinion. All the big hospitals will have financial counselors who can help you figure it out.
 

Lisa

Adminstrator
Staff member
Location
New York, USA
I agree with Maya - definitely time for scopes again to see if hte source of bleeding can be found. If the doctor isn't willing, second opinion time for sure!
 

crohnsinct

Well-known member
I would let GI know results of FOBT and see if he perks up. I would also ask for an fecal calprotectin. If high it will help your case. If he doesn't show any interest, ask him to help you get a second opinion. He may be able to call in a favor here or there. If he gets offended, you know it is time to move on.
 
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