Well I finally got my assessment from the Dr at Cincinnati Children's Hospital. It was dated May 31, 2012 and I just got it. I can't blame anyone because he was moving to Florida. So he had to wait for his license blah blah blah.
So Bruce went from chronic proctitis to severe chronic pan colitis. His colon has improved to only mild, microscopic colitis. His recent endoscopy showed mild focal ulceration in the duodenum and focal duodenitis which is most consistent with a steroid or NSAID/Cox-2 related ulcer....so far no upper tract GI disease however, Bruce has been found to be ASCA positive on 2 occasions that is more often associated with Crohns Disease.....but a positive ASCA serology can also be found in about 12% of patients with ULcerative Colitis. Oooh there's always a but or a may or a might! Nothing definitive.
The director of Pediatric General Surgery and IBD surgeon discussed that Bruce does not need surgery at this time but would need to be reevaluated should his body decide to become refractory to medications and steroids like his last trip to hospital. It would be a 2 stage procedure for a ileoanal anastomosis. They also explained that 5 to 10% of patients who undergo colectomy for UC may in fact have Crohns Disease.
Bruces clinical course is a bit confusing from onset of proctitis to pan colitis while on Remicade and then becoming better after weaning off of steroids..there are some other factors involved...needing more time for steroids to work, an NSAID/Cox-2 reaction, a 5-ASA reaction among the possibilities.
So...basically we have to wait for him to flare and see if it's due to lack of response to remicade, stop 5-ASA...then to look at the possibility of pancreatitis with the next severe flare. If all those are checked out and he still has bleeding that is not responding to any medication...including Humira and 6MP a colostomy is inevitable. There is a chance 7 to 10 years later of having cancer if colon continues to flare...the younger you are the more susceptible you are.
So...I think i pretty much understand this assessment...once again nothing set in stone and that's the hard part. He was put on Celebrex in December and in February he
started bleeding. Well he's been back on Celebrex so we shall see what the next couple
of months hold. He still is on the 5-ASA (asacol)as a maintenance drug to prevent flaring....so he really needs the meds he's taking...if we take the Celebrex out he started hurting and am a bit concerned that if he goos off maintenance of Asacol he will start bleeding. So we are doing exactly as we have done before except for the shot Bruce gets of MTX. It would be very odd for him to flare being on so much Remicade every three weeks. Its a wait and see.