Anyone look into possible immune issues after Dx? - General IBD Discussion - IBD Support Group Forums - IBDsupport.org

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Anyone look into possible immune issues after Dx?

immune-deficiency autoimmunity icl

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#1 MedicalMystery

MedicalMystery

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Posted 19 January 2021 - 02:45 PM

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Long story short, I've been diagnosed with an IBD for nearly 10 years. It started out as UC when the diagnoses recently changed to Crohn's. I've had an ileostomy as a result of an infection (likely from fistulas). None of the standard treatments for IBD have helped me get it under control, although the ostomy has provided a great deal of relief.

 

Since this disease has been so strange for me, I've been trying to find an answer for the root cause. I went to an immunologist who discovered several anomalies with my immune system, and officially diagnosed me with Idiopathic CD4 Lymphocytopenia (ICL). This is despite that fact that I haven't been on immunosuppresants for years. My immune system should've bounced back, yet it remains in this suppressed state. We didn't really know what to do about that diagnosis or how it might affect other parts of my system, so I'm now trying to find a doctor or researcher willing to dig into this further.

 

My question to everyone here is, have you looked into other immunity issues after having your IBD diagnoses, and what did you find? Have you been able to do anything about it?




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