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Reply to "How many out there got a J-Pouch only to find out later you have Crohn's?"

Similar to GinLyn here. 

 

I felt "off" all of 2012, and kept saying to the hubby that I wondered if I had developed Crohn's. Odd, I know, to say "gut feelings," but there they were. I felt like I had physically when in a UC flare: constant low-grade fevers, malaise, bloating.  It wasn't so much that my pouch was bad or off, it was a full general sense thing. 

 

Then December 2012, I developed a perianal abscess that became a fistula.  Also get strictures and narrowing at the lower anastomosis these days, something I never had in 20+ years. 

 

Then, my daughter developed indeterminate (likely Crohn's) colitis, and light bulbs went off over everyone's heads.  

 

My GI doesn't always believe we develop "Crohn's" but has a theory that our past IBD hx can never be "genetically" rid of, and eventually, especially *older* pouches, etc tend to start being targeted by our own genes. There are definite gene conversions in pouches, and eventually their mucosa reads as "colon."  

 

He thinks of IBD more as an "umbrella" of diseases, and our lack of colons but pouches turning "into" colonic type mucosas might be triggering something. 

 

I've be taken some steroid tapers, and I'm on Humira, and I feel waaaay better these days. My kid was put in symptom remission by Humira in 3 days after her first shots. 

 

just keep swimming. 

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