Hi,
Have you seen Dr. Bo Shen? He is in NY and he is not only the best for pouches, he is kind and sincere.
I too am having a severe bout of cuffitis and pouchitis so I am sympathetic to your son. The plan of care for me is a biologic (Entyvio), hyperbaric oxygen therapy, biofeedback therapy and a supplement EGCg for inflammation. The supplement alone has helped quite a bit but still not where I need to be. Was told to drink (2) 32oz of Gatorade a day. Changing my diet to have more lean protein and trying to get movement in my day (walking) to help myself along as much as I can.
Everyone is so different but hoping you can connect with Dr. Shen if you haven’t already. Take good care, Julie