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Crohn's disease
Emmy Rains

Emmy Rains had always been a healthy child, so when she complained of sharp stomach pain, her parents, Karen and Tyler, knew something was off. The symptoms worsened despite a visit to the local pediatrician and normal test results. The stomach pain was accompanied by constant diarrhea and eventually vomiting. Within a month, Emmy had lost 20 pounds, her energy gone.

“She basically quit eating altogether,” Karen said. “At that point, I told our pediatrician that we had to go see a specialist at Children’s of Alabama.”

That visit to Children’s came just in time. “The doctor told us that she had never seen a child that sick walk into her clinic,” Karen said. “She sent us straight to the hospital and put Emmy on fluids because she was so dehydrated.”

Doctors quickly diagnosed Emmy with Crohn’s disease, a chronic inflammatory condition of the gastrointestinal tract. Bloodwork and labs were performed, as well as a colonoscopy that revealed her intestines were extremely inflamed. After the scope, Emmy’s pain intensified. An X-ray showed her colon had perforated. Doctors rushed Emmy in for emergency surgery, which required putting in a colostomy bag.

“It was upsetting because she was just a freshman in high school and she was going to have to deal with a colostomy bag,” Karen said. “But after that surgery, her pain was gone and she was all smiles. She was just so happy that the pain was gone.”

Emmy experienced some setbacks. She developed three abscesses that had to be drained, pancreatitis and an acute kidney injury that affected her blood pressure. But after almost four weeks, though she still had to take antibiotics for a lingering abscess, Emmy was discharged home. Today, she makes frequent visits to Children’s for Crohn’s disease infusions.

“Her case of Crohn’s disease is so severe that we have to go to Children’s every four weeks for her infusion,” Karen said. “That’s more often than many Crohn’s patients have to go, but it’s what’s working best for her.”

The infusions work so well, in fact, that most of the inflammation in Emmy’s intestines is gone. Most of her Crohn’s disease symptoms have gone away, though she still has to be very careful about what she eats.

“She still fights fatigue sometimes because of Crohn’s, but overall she is doing excellent,” Karen said. “It’s such a night and day difference from where she was. She’s still living with the reality of having a disease that doesn’t go away, but she has the tools now to help her manage it.”

Emmy was also able to get her colostomy reversed and now she is back in school full-time, focusing on making good grades and being involved in various leadership opportunities. “She’s doing great,” Karen said. “The doctors and nurses really made all the difference in helping get her to where she is. They took such good care of her, whether it was making sure she had everything she needed and was comfortable, or just coming around to play with her when she was too tired and sick to venture out of her room. They really cared.”
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