Josh’s surgery is done.
They were going to do it laparoscopically but they found that his abcesses were wrapped around his aorta, so they had to do an almost 12 inch incision and open him up. They removed quite a bit of small intestine, leaving him with about 300 cm and he has to have a temporary ostomy until he gets his Crohn’s under control. When he is well again they will do another surgery to reverse his ostomy and hook him back up.
What this means is this. We have to get this kid healthy again. He doesn’t seem to know when he’s getting sick and he can’t let it get this bad again. We have to find a medicine that works for him, and if that means Tysabri then we need to start it now so it has a chance to start working. That’s hard to think about waiting 3-6 months for him to be well, but there aren’t a lot of options left for him. Or me. And now with his surgical procedure and ostomy I believe he is in my boat of not qualifying for most medical trials for new medications.
Crohn’s disease is frustrating and exhausting and heartbreaking. I never want my little brother to feel like this. Please keep him in your prayers to help him heal and get well.