Cleveland is kind of a trek but Bo Shen is possibly the worlds best pouch specialist, maybe he would look at your profile without you going?
How long do they think the increased stelara will take to help?
I am following Dr. Shen's diagram of treatments (his protocols), I'm in the biological side of the treatment pyramid and unfortunately I've already used most of the biologicals when I had UC so I can't use them now due to antibodies.
I'm ok with the pouchitis, it's really not that bad but it's just something that I have to deal with and treat. If I was in really bad shape then I'd definitely go to Dr. Shen and if he recommended it then I'd go back to an ostomy.
My goal is just to get off of the antibiotics. I'm hoping that Stelara can accomplish that, anyway since it is not approved yet for CD the dosing for Stelara is not exact and the insurance company has final say over this stuff since it is off-label. 90 mgs is 1/6th of the IV dose if I was in the clinical trials.
I should have probably chose to go with Entyvio but I wanted something that worked quicker so I could get off the antibiotics.
DX'd with Severe Pancolitis June 2005
Previous Meds: 5ASAs, Predisone, 6-MP. Remicade, Humira, Simponi, Cimzia & Cyclosporine
3-step J-Pouch surgery: 2013 & 2014
Current Condition: Chronic Pouchitis -- Not as bad as I thought it would be
Current Meds: Stelara, Sulfasalazine, and rotating antibiotics