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IBD Awareness Day - May 19th - Colton's Story

By Rachel Ives - Publisher, Macaroni Kid Bridgewater-Brockton May 16, 2017

This is the first time I have ever written anything about my son’s medical condition. It is still all very new to us and we are still working through it. This is the first of 2 articles I plan to write on this topic. This article being about the diagnosis itself and the difficult journey we went through to finally get a diagnosis; and the next about how we cope with the disease. 

My son is 5 years old, he will be 6 in July. Just about a year ago, he was diagnosed with Ulcerative Colitis. If you have never heard of Ulcerative Colitis, also referred to as just Colitis, or UC, it is a chronic Inflammatory Bowel Disease that causes inflammation in the digestive tract. The average ages for diagnosis is between the ages of 15-30 so being only 4 at the time he was diagnosed, he is an uncommon case.

We began our journey in August 2015. Colton, my son, had been suffering from severe leg pain. He could not explain where the pain was coming from, or what kind of pain it was, after all, he had only just turned 4. The pain was so bad that he couldn’t walk, he couldn’t even move. I sat down on the couch next to him and just the movement of the couch caused him to yell out in pain. It was heartbreaking. We went to the pediatrician and he couldn’t figure out what was going on. After 3 days, it went away. Colton was fine, walking, running, jumping. It seemed like maybe he just pulled a muscle or something, we had no idea. Then it happened again, days of agonizing pain. Back to the pediatrician, who ran a test for Lyme disease but it turned out negative.

The 3rd time it happened it was the middle of the night. We went to the emergency room this time. He couldn’t even sleep the pain was so bad, he just cried, for hours. We were at the ER for hours running tests. He was checked for every autoimmune disease you can think of but all of the tests were negative. We were referred to Children’s Hospital to see a rheumatologist.

We saw the rheumatologist a couple of times before she discovered Colton’s extreme iron deficiency. She asked a few questions about his diet and bowels and determined that we needed to see a gastroenterologist. When we began seeing the GI, his main concern was the iron deficiency, Colton’s leg pain didn’t seem to be a concern to him. Colton’s iron levels were so low we met with a hematologist next, who scheduled a couple of iron infusions to get the levels up. They didn’t really help much, the levels went up for a few weeks, then dipped back down.

Next, my poor 4 year old son underwent a colonoscopy and endoscopy to see if they could figure out what was causing the iron deficiency. It was an awful day. I was so worried. I was more afraid of the anesthesia than the actual procedure. Neither of my children had ever been put under. He came out of the procedure just fine but the doctor didn’t find what he was looking for. It wasn’t until a week later, after he had reviewed everything that he said he couldn’t find any inflamed spots because Colton’s entire colon was inflamed. Colton was diagnosed with Colitis. With this diagnosis, we were able to determine where the iron deficiency was coming from, and where the leg pain was coming from. Both are side effects of severe ulcerative colitis. Now that we know what is going on, we are trying to wrap our heads around it.