Prior to this year, I really didn’t understand what Crohn’s disease or IBD was. For about a month, I had been telling friends and family that my daughter was having stomach issues, and they would usually reply: “oh it’s probably just a virus; I’m sure it’s nothing serious.” Then on January 16, everything changed. My daughter, who is 13 and in 8th grade, was diagnosed with Crohn’s disease.

I guess, looking back over the past 13 years, there were probably warning signs, but nothing was ever major enough that doctors felt it required additional testing. I remember vividly, the look on the doctor’s face when she came out of the OR after her colonoscopy. I knew it was not good news. My heart sank. While I was relieved to finally have answers about why her stomach was bothering her, I was also petrified.

Now, when I tell people about the stomach problems and Crohn’s, they say: “oh, I’m sorry, but it’s manageable…” To be honest, if I hear that again, I think I’m going to scream. From what I’ve learned over the past 2 months, to make this disease manageable, you need to learn to move mountains.

To be a parent and watch your child go through this is absolutely devastating. I’ve watched my honor student, who always had an A/B average, now struggle to keep her grades at a C. She’s missed a lot of school. We have a 504 plan in place, but I don’t feel confident the school, or the teachers, really get it. She doesn’t “look sick,” except for her face, which is swollen from steroids. I’m her constant advocate.

We have decided to put her into the homebound program to finish out her last few months of middle school. She’s worried that she has fallen so far behind that even she agrees staying home and catching up would be the best choice. Also, a lot of middle school kids aren't really the kindest when dealing with an "invisible" chronic illness involving a fellow classmate (just another reason this feels so devastating to watch her go through). Finishing middle school from the comfort of home feels like the best ways to ensure her education isn’t jeopardized and so she can just take a break from peer issues for a while. Now we must wait for all the paperwork to go through.

Speaking of struggles, it’s hard watching her not being able to enjoy what she's always loved the most, and that's horse riding. She's been riding since she was four years old, dedicated and eager to learn. Lately, it's hard to find days when she's feeling well enough to go to the barn because she is so exhausted or her stomach hurts. But she is working on it, one day at a time. Her trainer has been awesome in trying to build her strength back up. And I know that eventually she will get back to where she left off.

When I’m not working on school stuff or worrying about whether or not she’s going to be able to pursue her passions, I’m learning about new ways to treat and manage her disease. She started on 6-MP a few weeks ago, which is a type of chemotherapy drug used to treat leukemia patients. From what I’ve learned, there are so many bad side effects that can happen with this drug, but the doctor tells me it’s better than the side effects if you don’t treat Crohn’s. That medication gets adjusted, usually increased, depending on results of her monthly blood-work. Using this medication also increases her chance of melanomas, so sun exposure is more worrisome than ever. We are tapering down on the prednisone, so hopefully, the side effects from that will subside eventually. She's also been found to be Vitamin D deficient and her immunity to Hepatitis B is gone. The doctor warned us in the beginning that some immunity from childhood vaccines may no longer exist. So, she will have to be re-immunized (more needles!). There are just so many other things that go along with this diagnosis besides a "stomach ache."   

I’ve started learning all I can about food, specifically the Specific Carbohydrate Diet, from reading the book, “Breaking the Vicious Cycle” by Elaine Gottschall. I’m trying to lean more towards feeding her this way, but it’s hard with a family of five. Especially with her younger brothers who don’t want to eat this way. But we will get there! I’m spending a lot of time reading labels in the grocery store and have bought all kinds of new kitchen gadgets and ingredients, so I can try all these new recipes. With each day comes more knowledge.

The learning curve has been steep! But thankfully, CHKD in Virginia, has a great network for kids with IBD, social workers, nutritionists, etc... She’s even started attending a weekly support group for kids with chronic illness, which has been wonderful for both of us. She's the only one with Crohn's, so it's a great learning experience for everyone. The parents of the other kids in the group “get it,” regardless of what disease their child is struggling with.

Ultimately, we will move mountains and have no intention of letting this disease hold her back from being the smart, successful, beautiful young lady she is, with the kindest heart.


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