Anyone develop Crohn's years after a J-pouch for ulcerative colitis?

Anyone develop Crohn's years after a J-pouch for ulcerative colitis?

I'm posting for my mom because we're hoping someone has had a similar experience.

She had ulcerative colitis and underwent a total colectomy with J-pouch creation about 18 years ago. Since then, she has done incredibly well and has never had any significant issues with her J-pouch.

Then, seemingly out of nowhere, she became very sick.

She has developed severe abdominal pain, deep ulcers, inflammation, fatigue, and has lost a significant amount of weight because she's having such a hard time eating. Right now she's on a very restricted diet (low fiber, no raw fruits or vegetables, etc.) because eating often makes things worse.

She has been hospitalized multiple times and has had numerous tests, scans, scopes, and lab work. During one of her hospitalizations, they performed a scope and took multiple biopsies because her doctors suspected Crohn's disease. However, the pathology report came back inconclusive, leaving us without a clear diagnosis.

She also went back to see the colorectal surgeon who performed her J-pouch surgery 18 years ago. He said her J-pouch itself still looks healthy and is functioning well. The concern is that the deep ulcers and inflammation are in her small intestine, not in the pouch itself, which has made the situation even more confusing.

Some tests have shown ulcers and inflammation, but nothing has definitively explained why this is happening after 18 years of doing so well with her J-pouch.

Has anyone experienced:

• Being diagnosed with Crohn's years after having a J-pouch for ulcerative colitis?
• Deep ulcers and inflammation in the small intestine while the J-pouch remained healthy?
• Inconclusive biopsy/pathology results despite symptoms strongly suggesting Crohn's?
• Months of symptoms with inconclusive or conflicting test results?
• Finally getting a diagnosis after a long workup?

If you've been through something similar, what ended up being the cause? Was there a specific test, specialist, or pathology review that finally provided answers?

We're continuing to work closely with her GI team and aren't looking to replace medical advice. We're just hoping to hear from others who've experienced something similar because this has been a very long and frustrating journey.

Thank you for reading.