I’ve been choked up all day. Fighting back tears since Brody’s doctors appointment this afternoon. A routine, step by step check up that he goes through since being diagnosed last March. Checking in on weight, blood pressure, appearance, symptoms and medicine maintenance. Last March our world turned upside down when a little scare turned into a bigger one once an endoscopy + colonoscopy was performed on Brody. JUST turning 5 years old, we learned he had Ulcerative Colitis.
This disease was extremely foreign to me, even for a girl was has IBS. For months I pronounced it UlcerVAtive. Dum Dum Mommy was overwhelmed, under educated and uninformed. After a week in the hospital and spending the next 3+ months pumping his body full of steroids to repair the damage to his colon, we were feeling optimistic. He had multiple Iron treatments done, check ups galore, stool samples and the steroids did their job! Wahoo!
Since then, we have maintained his medicine – recently getting the pass to take him off, to see if he was totally “healed” and could go a longer amount of time without medicine. We made it nearly 3 weeks until his symptoms started to creep back up. Now we are on a different medicine, stronger dosage and it seems to be going well.
I find many moments where I feel up to my ears in emotions. I want to fix him. Make him feel healthy and okay all day everyday. When in fact, it is not the reality. We mistaken his meltdowns and tears for being emotional, when in fact he may be having a tough belly day and not know how to mention it. We think he is super sensitive, and forget that that characteristic is one (of many) directly linked to kids with U.C. We have come to learn unlike our thoughts last year – that not one direct food affects his stomach. We would think diary or fried foods — come to find we were just digging too deep. He is doing great on a well balanced diet. He is super active, plays sports all day long, we cannot keep him inside!
Last Easter he was puffed to the max full of steroids – I still find it so hard to look back at pictures from this time last year. He doesn’t even look like himself.
One year later, this string bean has lost every ounce of steroid pudge and looks like a little man. 6 years old this kid! Holy head spin.
We found out today that indeed he needs more testing done. We were told at first that without any symptoms, we would just maintain his medicine. Now, his doctors are chosing to do further testing because preventing/catching something early is key. I totally agree. Just made me sad that we are going to have to make him go through those icky iv’s and procedures again. (Insert super frowny face). I asked his doctor how common this is, to be 5 with this disease, and she replied that there are up to 3 new diagnosis each week now with IBD (irratiable bowel disease) in Pediatrics at Rainbows.
I have spent this past year learning as much as I can. Trying to walk this path with Brody, Dan and I both have. Trying to keep in mind all that he needs without babying him or making him feel “different”. It’s hard to make friends/family/people in public understand it all – because they see a lot of the emotional side that can come out of him lately…. We just ask for patience and understanding. Dan and I both are learning day by day how to deal with the ins and outs that come with this disease, and often enough we feel completely clueless.
We know a few things for sure. He needs love. He needs confidence. He needs community. I know this journey is just beginning, but I hope to raise more awareness of this disease in our community. You can learn more here –
Bmac – you are one tough cookie. Not many 5 year olds have to go through the tests and procedures you do. Swallow horse size pills 2x a day and worry when your belly hurts. Know that Mom, Dad + Owen love every last drop of you and will be by your side through it all! I promise you will get better my buddy – One day at a time!