The night Jolene Davis took her teenage daughter Mikenna to an emergency room in Pocatello, Idaho for abdominal pain she never imagined that her daughter might be experiencing a severe and potentially life-threatening disease.
After Mikenna had recently spent time with her grandparents, her grandma noticed that her skin color was pale and she had been sleeping a lot more than normal, so they took her the ER. As the results from the tests started coming in, Jolene learned that her daughter's health had been deteriorating for several months.
"Mikenna is just so easygoing," said Jolene. "She never complained about any health issues or pain so we had no idea she was experiencing this."
The tests revealed that Mikenna had ulcerative colitis and Crohn's disease, and the ulcers were bleeding inside her intestine. Without treatment, she was at risk of eventually bleeding to death through her intestine. The hospital gave her a blood transfusion, but since there is no children's team that specializes in gastrointestinal disease in their hometown they sent her in an ambulance to Primary Children's Hospital at the University of Utah for ongoing treatment.
Once there, doctors performed a scope and discovered ulcers throughout her colon. They put her on fluids, steroids, and bowel hardeners to try and heal the colon, and she spent about nine days in the hospital. At the time of discharge, Jolene wasn't sure that her daughter was ready, but providers thought she could go home while the medications started working. A week later, though, Mikenna was not showing any signs of improvement.
Jolene took her daughter in to their primary care doctor a few blocks from their home, who ordered comprehensive blood work. Five minutes later they were on their way back to the ER and Mikenna was immediately transported via helicopter to Salt Lake City.
With so little improvement, doctors at University of Utah Health, including surgeons Katie Russell, MD and Scott Short, MD didn't think that continuing on the current medications would be the best option. They also didn't like the other two medications available, and believed that the best option would be to remove her colon entirely. It would be a very significant surgery, but would give Mikenna the best chance of healing.
In June of 2018, she had the first of three surgeries, removal of the entire colon and a portion of the large intestine. The staged surgery approach meant that initially they would remove the colon and block the rectum, so part of her intestine would stick out of her body and she would have a colostomy bag that drained directly from her stomach. She was nervous about the surgery (up to this point the most significant medical care she had received was seven stitches for a minor injury) but her mom knew it was the right choice for her daughter's long-term health.
Jolene did worry about the emotional toll it would take on Mikenna, so during the initial surgery she searched online for women in a similar situation to her daughter; what she found was an array of women—even supermodels and bodybuilders—who proudly displayed their ostomy bags in photos.
"She was afraid people were going to make fun of her, that they would see the bag or that it would fall off while she was at school," said Jolene. She was also afraid that because she couldn't hold in gas like most people can, she would pass gas during class. They talked about how Mikenna could make a joke out of it and allow people to laugh with her instead of laughing at her.
"She just took on the role of, 'I can do this, it saved my life, and if you want to make fun of it you're just not a very good person'," said Jolene. "I can't even express how proud I am of her."
The next surgery several months later was the first reconstruction. Doctors reconfigured the intestine that was left to eventually take over digestive functions.
Mikenna recently had the final surgery—the second stage of reconstruction—where surgeons pushed the intestine back into her belly, creating a skin 'bridge' so it won't fall through the abdominal wall, and formed a place for it to drain. They sewed her abdominal muscles back together, similar to a hernia surgery, and removed the clamp they placed on the intestine to allow digestion through the area. While Mikenna won't have a "normal" digestive system, she's on her way to her new normal.
She's excited about the prospect of going to visit her dad in Lake Havasu, Arizona and being able to swim and do other things without her colostomy bag. She's also excited about the scars she will have and the stories she'll be able to tell.
For the first year after surgery Mikenna will get regular check-ups, and track and plan all of her food and drink to know if something adversely affects her. She will also have to be hyper-vigilant about any signs of a problem, such as sharp abdominal pain that wasn't there before.
Jolene is relieved that her daughter has gotten through the process so well. She has also learned the importance of being an advocate for your child, asking a lot of questions of the doctors, nurses, and care providers to make sure you fully understand your options and can make the best decisions.