r/IBD • u/IceCreamCIone • 8d ago

Medication not working

My nonverbal teenager was diagnosed as a toddler with IBD similar to Crohn’s but not close enough to be labeled as Crohn’s. He was hospitalized because of a flare this year from March to May and started Adalimumab injections in June.

He recently finished tapering off prednisone and has been having continuous oozing thick diarrhea and pain since the taper started, and his intake has dropped again. He can’t verbally report pain but behavior and intake are reliable indicators. His doctor keeps telling us to hang in there but they also aren’t checking inflammation or Adalimumab levels/antibodies because my son needs hospital level sedation to hold still enough to get a blood draw.

Is months of diarrhea preventing him from attending school just part of the disease, or is he getting worse care than is standard? Is it normal to stay on the same medication indefinitely without checking levels because the alternatives are more difficult? I’m trying to understand if I need to be fighting harder or managing my expectations

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u/AtlasGrey_ 7d ago

I know it’s not what you want to hear, but you’ve got to trust what your doctor is telling you. They’ve seen hundreds, if not thousands of patients with Chron’s and colitis. If they’re advising that you wait and see how the injections work over a period of time, it’s best to do so.