Inside the Pandemic, Day 23

 Monday, May 11, 2020

Whew, it was a long day today. Ethan and I left before 7:00am to get to Topeka for his appointment with Dr. Datti. They let me come in the building, but I was not able to go back with him when he had his procedure. I wish I had been able to--it’s pretty scary doing stuff like that by yourself whether you are 19 or 91! Moral support is so important--I believe it is a vital aspect of our physical and mental health. I waited in the waiting room until he was done, then the doctor talked to me. He said that, although he can’t confirm it until all the biopsies come back and the blood tests are run, he is certain Ethan has Crohns Disease. He said it is a textbook example. The endoscopy was clear, meaning there are no sores or lesions in his esophogus, stomach or upper GI. However, the colonoscopy turned up numerous lesions, sores and “granulated” patches throughout his lower intestines and colon. They showed me the pictures, which were honestly pretty painful to look at. No wonder this poor kiddo has been in so much pain! 

The doctor said that they’d put him on steroids until all of the tests come back, and then start him on a biologic (like Stelara or Humira) like you see advertised on TV. These suppress his immune response, but since it is already fighting the wrong thing, I don’t see that it is a negative. My poor baby! We got home about 1:00, then I went out again to get his steroid so he could start on it right away. By dinner time he said he felt better. He even came out and ate dinner with us--something he hasn’t been able to do in several days. I’m very excited to finally know what it is we’re fighting. Of course, my first reaction was to start doing research and order some books about it. The more you know, the more you can help. One thing that is going to be strange for me is the diet part of this thing. The doctor said he shouldn’t have raw fruits or vegetables--they should be “well cooked” is the terminology he used. I assume that translates to “mushy”. His body just can’t do the processing a healthy body can. I have my work cut out for me.