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09-09-2017, 12:51 PM   #1
emie416
 
Join Date: Jun 2017

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Update

Update - he has had scopes. All they could tell me for now is that he had nodules throughout digestive tract , from esophagus all the way through! Does anyone know what that means? All the surgeon said was 'sores' ?
Just waiting on biopsies now - frustrating part! He was never diagnosed with Crohn's, it was colitis in 2014. remission in March, off meds and then in a mess again by end of April/May. Continued to worsen with hours spent on the loo!
09-09-2017, 02:34 PM   #2
Maya142
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By sores, do they mean ulcers? So to be clear, he has an IBD diagnosis, right?

If it's all through his digestive tract, then it would be Crohn's, not Ulcerative Colitis (which is just in the colon).

Remind me, why did they take him off meds? It definitely sounds like he needs a maintenance medication.
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
09-15-2017, 04:58 AM   #3
emie416
 
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Well I always thought he was diagnosed with uc. (Thought!) I was told in hospital he actually had indeterminate colitis, they did apologize for no one fully making this clear.
He came off meds because of the chicken pox virus, they then decided to trial him off meds completely because he was symptom free.
He then spiralled out but no calptotectins showed anything at all! Other than rises but still well within normal limits.
He had scopes to see what was going on in there. We are still waiting for biopsies but can't find any research on nodules due to ibd, so a little stumped.

Thanks.
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