The Diagnosis

It all started back when we were living in Korea (that's a story for another time) when my son, "D", had some blood work done and the docs discovered he was severely anemic. A few weeks later we moved to Germany and once we got settled in we checked in with a new doctor about the anemia and she discovered something else in his blood that set off some red flags. So we gave them a stool sample and there were more red flags. She referred us to a German pediatric gastroenterologist and that's where he got his first colonoscopy (up the booty) and EGD (down the throat) earlier this year. They knew he had some kind of IBD, or Inflammatory Bowel Disease, not to be confused with IBS, which is Irritable Bowel Syndrome, but they didn't know what type for sure. The German doc gave us a medication that was so bitter and horrible that no amount of yogurt or honey could mask the awfulness and he wouldn't take it. Even if he had managed to swallow it I'm sure he would have vomited it right back up. We (meaning me) also had to give him a horse-sized suppository every night which was later shown not to reach the location of the inflammation because it was higher up. So these were not working solutions. A few months later we heard about a new American specialist moving here with the Air Force so we made an appointment with him because 1) second opinion, 2) his office is closer, 3) obviously easier to communicate with, and 4) maybe he had access to other medications that a 2-year old can tolerate. They took more blood and more stool samples and it was enough for this new doctor to want to do his own EGD/colonoscopy to see for himself what was going on inside D's intestines. The day before the procedure, and the same day my parents and grandma flew in to visit, D was on a clear liquid diet and the next morning I took him to the hospital early in the morning. Of course nothing ever happens on schedule in hospitals so the poor boy had to wait two more hours than scheduled. He was crying and miserable and asking for food and water but I couldn't give him any. It was so heartbreaking and honestly made me think of all the refugees traveling for miles with nothing to feed their children. But unlike those poor children at least I had the comfort of knowing his suffering would be over after a few more hours, so it really wasn't so bad.

Anyway...long story long! They did the procedure and determined that D does, in fact, have an IBD. He has Ulcerative Colitis (UC) which is Latin for 'boy makes copious mud". It's a disease that causes inflammation in the rectum and colon and, according to my understanding, is caused by something "off" in the immune system. The only symptom he shows is diarrhea but not like the kind you get when have food poisoning and you're on the toilet thirty times in one day with nothing but poo-water shooting out. Thankfully, D (only) poops anywhere from two to five times a day and it's either runny split-pea soup or like canned dog food. That's as solid as it ever gets. There you have it. Every day for many months earlier this year I had to take his pants outside, sometimes more than once a day, to be hosed off because his diapers could not contain the volume. There were many impromptu baths. There were many pants.

At the follow-up appointment the doctor explained more about what to expect, prescribed a medication that is, hallelujah, flavorless and suggested we order this book to understand more about what's going on.

Your Child with Inflammatory Bowel Disease by North American Society for Pediatric Gastroenterology, Hepatology and Nutrition

I mean, what a fun Fall read, right? It's probably a good book to get if your child is diagnosed with UC or Crohn Disease.

At our follow-up appointment the doctor said, "Isn't it a great book?!" I was like, "Yeah, if you're a gastroenterologist or something." He also told us that D needs to be on a Paleo diet. Oh.

To be continued...