There are no easy answers and of course each presentation of UC is unique. For the parents of UC kids, how did you come to the j-pouch decision?
Our 12-year old son was diagnosed 2-yrs ago with UC and we've confirmed the diagnosis through multiple colonoscopies, endoscopies, biopsies and Prometheus blood test.
- We've been unsuccessful with Asacol, Colozal, Mesalamine, 6-MP (liver toxicity), Remicade and Entyvio plus various diets, supplements, probiotics like VSL#3, etc.
- Prednisone alone is not controlling my son's current flare which landed him back in the hospital in January.
- Currently, a cocktail of 40mg Prednisone + Vancomycin + Mesalamine enema is holding symptoms at bay but it's not a sustainable solution.
- Our Pediatric GIs recommend we start preparing for colectomy. We've met w/ Dr. Kane (CNMC), Dr. Remzi (NYU) and tomorrow, Dr. Mattei (CHOP) to discuss 3-part j-pouch surgery. Dr. Remzi was very optimistic about our son's prognosis post-surgery.
- Dr. Baldassano, GI at CHOP recommends we try a 4th & 5th Entyvio infusion, and if it fails, then Stalera or Xeljanz, both biologics. I believe Xeljanz was just FDA-approved last month but only for adults w/ UC not kids.
We have lots of experts weighing in and are at a crossroads where we need to decide our next move to get him off of steroids: either (1) colectomy, (2) Enyvio / Xeljanz / Stelara trial or (3) something totally experimental like FMT.
My son, an emotionally mature 'old soul', has missed nearly three months of school and is fed up with his quality of life. He feels ready to have the colectomy even though he doesn't yet fully know what to expect with an ostomy, stoma care and recovery from surgery.
My husband and I are trying to understand the risk profiles of more drugs vs colectomy to give our 12-year old the best chance of having decades of healthy living ahead of him.