When My Child With a Chronic Illness Asks, 'Why Does My Body Have to Be So Sensitive?"

As I write this, the voices of my girls (somewhat getting along) float up from downstairs as they play together. Laundry is strewn about all over the bed; the work of a mother is never done.

It hasn’t always been this “normal.” In 2013, months before her fifth birthday, our eldest daughter, Morgan, underwent her first colonoscopy and was diagnosed with ulcerative colitis. Our world was shattered.

For those who don’t know, ulcerative colitis (UC) is an incurable form of inflammatory bowel disease, or IBD (not to be confused with irritable bowel syndrome, IBS, as they are quite different). There are two types of IBD, the other being Crohn’s disease. The difference between the two is that UC affects the lining of the colon, and Crohn’s affects the entire thickness of the bowel wall.

The first year of diagnosis was a lot of trial and error, starting from the bottom of the list of medications that would cause the least amount of side effects (yet they produced the most). Very few of the medications worked on putting her into remission, and one even caused pancreatitis. Back then, our lives involved many rounds of oral steroids and nightly enemas.

The symptoms of a flare-up are ones not often talked about if you don’t suffer from IBD, as they are quite embarrassing. They involve rectal bleeding, diarrhea and frequent bowel movements a day. In July of last year, before she turned 6, Morgan spent three nights in the hospital for severe bleeding and abdominal pain. She had 15 bloody bowel movements in one day, and we had to stop it. It was then we found a much stronger medication that is, for the most part, working for her. She gets a three-hour infusion of her medication every five weeks, as well as a weekly shot to keep her symptoms at bay. But even after all of that, she isn’t symptom-free.

Getting the diagnosis of an incurable disease that wreaks havoc on your child’s body can be a nightmare for any parent. It took many different treatments and countless doctors before we found what works for her. She will often ask us through her tears, “Why does my body have to be so sensitive?” The only thing I tell her is that’s how she was made. Some people are born very sensitive to things and others are not. And it isn’t anything she did wrong that makes her body respond a certain way. But it’s hard to explain to a 6-year-old when you don’t even understand it either.

For any parents who have children with ulcerative colitis, I want to tell you to trust your instincts. Even if it’s the smallest thing, but it just doesn’t seem right and you aren’t sure, don’t be afraid to call and check on it.

You also know your child better than anyone, and you have to rely on them to tell you their pain and how they’re feeling. Also, get second and third opinions if you have to. That second or third opinion might just end up being the best person to care for your child. And lastly, if you don’t get a good impression the first time you meet a doctor or just don’t like the direction they’re going in, don’t be afraid to get a different doctor. We went through three over two years before we found the perfect one for our daughter and our family.

It breaks our hearts to see our daughter have chronic pain, but at the end of the day, when her lights go out and her radio is on, she still remains our spirited, loving, smart girl who doesn’t let her illness stop her, and she knows she is not alone.