You could be suffering from Diversion Pouchitis.  Colons or Pouches that get diverted from the fecal stream sometimes got sick because they lack the nutrients that they would normally get from the fecal stream. You can get fatty acid enemas which bathe the area compatible with the nutrients lost upstream in the appliance. For me they cured my diversion Pouchitis in a week.  I use a formulary in LA for fatty acid enemas. Good luck

Doug K’s suggestion of fatty acid enemas could be perfect for you. Adhesions can cause trouble whether the pouch is connected or not. Is reconnecting the pouch an option? There is also the option of removing the pouch, though that’s best done by a surgeon who’s very experienced in pouch removal.

Thanks for your replies

The specialist didn’t seem to think I had diversion pouchitis, I was contacted today by the Infusion team to arrange for my first treatment- feeling anxious and just hope it’s ok, they said it’s lifetime treatment 😬

This disease never ends

Im certainly going ask about your suggestions regarding diversionary pouchitis at my next appointment

Thanks again all

Heather