Chandler was diagnosed with UC and Celiac in 2012.
He was started on Asacol and 6mp along with Prednisone. He became very ill and was hospitalized in a local hospital. The hospital could not fix meals for him that were not cross contaminated with Gluten which made him sicker, so his mother and I would cook his food and bring it to the hospital . My wife tried to tell the GI Doctor that the 6MP and Asacol were causing the Pancreatitis.
It was decided that Chandler was too complicated and we were sent to Cincinnati Children’s Hospital. We spent 2 weeks at Cincinnati Children’s hospital and all we came away with other than a bill is what we already knew and what my wife had explained to the Doctors from the beginning, that Chandler has Celiac Ulcerative Colitis and is dangerously allergic to 6mp and Asacol.
Remicade was tried and showed no promise so Humira was tried. Chandler reacted to the Humira so treatment with it was halted.
Chandler maintains his symptoms with low dosage of Prednisone {5mg or less per day} and 3-4 Imodium. He has good days and bad days. A good day for him is no accidents and under 10 trips to the bath room. I won’t describe the bad days. Chandler is tired most of the time. He takes a regiment of vitamins and his diet is controlled and healthy. Chandler is frustrated to say the least and has told us that he is ready to get his life back. We have met a few people who have successfully went through the J Pouch surgery and now We are scheduling a consult at Cleveland Clinic but today we found out the Doctor that we selected is no longer there. With Dr Remzi no longer there we are looking for recommendations for another surgeon at Cleveland Clinic.
Can anyone give us some insight based on previous experiences?
written by “Dad”
My 20 year old Chandler Diagnosed with UC and Celiac 2012. Reactions to 6 mp, Asacol, and Humira. Ready to head to Cleveland Clinic to consider J pouch surgery.
