Clayton DeYoung

First post: Aug 10, 2022 Latest post: May 29, 2023
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In March 2022, Clayton began having GI bleeding.  This lead to Clayton's first week long hospital stay, which included high dosing of steroids to control his bleeding and anemia, and concluded with a diagnosis of Severe Ulcerative Colitis.  Two weeks later, we ended up back at the hospital for another long stay.  The steroid, and 5-ASA med were not controlling his bleeding, he was anemic and needed a blood transfusion.  With advice from the MNGI (Minnesota Gastroenterology) doctors, we made the decision to put him on Remicade (an immunomodulator).  This was a scary decision for us, we didn't like the idea of him being immunocompromised, but it was our only and last option.  The remicade made a difference.  We very quickly saw improvement in his energy levels and improvement of all of his GI symptoms.  We made it through the next five months on remicade infusions until the bleeding came back at the end of July.  We assumed this was a "flare up", but doctors took it as a sign that the disease was not controlled, even with the strongest meds.  Colonoscopy/endoscopy was repeated to look for any signs of healing, but there were none.  The gastro doc said his Colon is one of the worst pediatric cases he's ever seen.  Aparently pediatric UC is extremely aggresive, and has less success with medications.  We were informed that there were no other meds that could control his condition, and they recommended he have his colon removed.  This was not a decision we took lightly.  His rapid decline with nutrition and hemoglobin led us to meet with the pediatric surgeon.  Along with Clay, we made the decision to proceed with scheduling for Colonectomy surgery, and surgery is scheduled for Monday Aug 15.  This surgery is 1 of 3 potential surgeries he will have over the next 6 months, ultimately ending in a closed GI system if all the steps go as planned.  

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