When my son, Spencer, was 8 and 9 years old, we used to go to the doctor all the time. He just didnt walk or act like other boys his age. He was hunched over like an old man, and when lying on the ground, he couldnt get up unless he rolled over onto his stomach, got on all fours, and pushed himself up with his hands. He always complained about feeling sore and stiff.
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 didnt have the strength to get up the stairs.
Finally, he was diagnosed with Crohns 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 didnt attribute them to Crohns.
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 Crohns disease to the doctor, but she said Spencer was way too young and that he didnt 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 didnt 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 Crohns was likely. She did some more tests and confirmed the diagnosishe 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 Crohns disease. But when I told him, he said, “I know what it is; I saw it on [Discovery Healths] 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 wasnt in remission around Christmas, they said he needed more drugs, so he started taking Remicade. Hes almost weaned off prednisone now and is doing a lot better.
Its been difficult for Spencer
Spencer is doing better, but prednisone is a horrible drug. He weighed 56 pounds at his smallest and then weighed 80 pounds within two months of starting prednisone. He looks like a different boy; his face is so full.
Spencer asks why hes so chunky and his clothes dont fit. Hes frustrated and it is hard to reassure him it will be better tomorrow.
During the summer he didnt want to go swimming because he didnt want to go that far from the house. When I asked him why he wasnt outside playing, he would just apologize and say he didnt feel like it. Home is his comfort zone; hes almost 12 and just had his first sleepover.
What Ive learned from all of this is that if your child is having problems, you just really have to be his or her advocate. I knew something was wrong with Spencer. He was extremely fatigued and had dark circles under his eyes; it just didnt seem normal for an 11-year-old boy.
But if the doctors didnt know what was wrong, what was I supposed to do? I look back in hindsight and feel like I should have pushed harder. I knew something was wrong and wanted it to get fixed, but I had no idea what to do. What I learned was that if you really suspect a problem, dont take what the doctor says the first time.
There are not a lot of doctors in Arkansas who deal with pediatric Crohns. Its rare that kids have it, so not a lot specialize in it.
There is no chapter of the Crohns and Colitis Foundation of America in Arkansas and they are trying to start one up, so we are walking on May 15 to help raise money. We went to a local meeting a while back and there were a lot of kids around Spencers age there, which was great for him.
Spencer is really amazing. When you are young, you just take things one day at a time. He thinks, “If Im OK today, Im good,” or, “If there is something going on this weekend, I just have to be OK this weekend.” He is optimistic even though he knows this is something he will have to deal with for the rest of his life.
As told to: Tammy Worth