His joint pain was so bad that he had to pull himself up the stairs by the handrail because his ankles and knees were so sore. He just didn’t have the strength to get up the stairs.
Finally, he was diagnosed with Crohn’s disease in July 2009 at age 11, even though we felt like his symptoms started around age 7.
A fistula was the first sign
When Spencer was in first grade, he had a perianal fistula, a lesion on his bottom that was so painful he had to sit on a pillow at school. He had another at age 8. Even though the doctors said they were unusual, they didn’t attribute them to Crohn’s.
After he turned 10, Spencer started having bathroom issues. He would get constipated and then immediately have to go to the bathroom if we went out and ate a meal. Soon he started saying that every time he ate, he felt like he was going to throw up. He almost stopped eating and lost a lot of weight.
By January 2009, we were taking him to the doctor all the time and they kept conducting tests. I mentioned Crohn’s disease to the doctor, but she said Spencer was way too young and that he didn’t have it. Eventually they just told us he was impacted and to give him a laxative.
For a while he was fine, and then he would be sick again. Around that time, he googled the words “colon cancer” and came downstairs and said, “I think this is what I have.” I told him he didn’t have colon cancer but we were going to find out what was wrong.
We went to a pediatric gastroenterologist who did a colonoscopy, and she said Crohn’s was likely. She did some more tests and confirmed the diagnosis—he had the disease in several places in his large intestine.
I was worried because when he woke up from his colonoscopy, I would have to tell him that he had Crohn’s disease. But when I told him, he said, “I know what it is; I saw it on [Discovery Health’s] Mystery Diagnosis,” and he was fine.
Of course, he broke down when we got home, but he was relieved because he finally knew what was going on.
He began taking prednisone and ended up on four different medicines at one time.
Then they did another colonoscopy and said it was looking better, but he was not in remission yet. He was still going to the bathroom five to six times a day or more. When he still wasn’t in remission around Christmas, they said he needed more drugs, so he started taking Remicade. He’s almost weaned off prednisone now and is doing a lot better.
