Dmiya White

In summer of 2022, 15 y/o Dmiya White of Florissant, MO was living a typical teenage life. Having finished her school year on the honor roll, she was looking forward to her sophomore year and things like her classes, parties with friends, her 16^th birthday in October and her first part-time job, among other things. Throughout the month of June, however, Dmiya noticed that her “normal” mood and appetite was interrupted by a steady occurrence of nausea, abdominal pain and throwing up, which she couldn’t pin-point to any specific triggers. Over the past few years, she had developed an unexplainable craving for chewing ice. As the GI symptoms increased, she began losing weight, her food intake decreased and her craving for ice intensified. “I have always loved food, and I was happy with my body. I had some stress in relationships and school like most teenagers, but I didn’t feel like that was reason for why I felt bad,” says Dmmiya. “I had an urge to use the bathroom all the time. I had to be close to a bathroom wherever I went. I also had such a need to have ice all the time. I definitely noticed that the worse my stomach felt, the more I wanted ice.”

As fall of 2022 arrived, Dmiya’s GI symptoms continued. They weren’t severe enough; however, to limit her normal daily activities. She was able to go to school, do extra-curriculars and hang out with her friends. She also celebrated her 16^th birthday and was excited to start her first part-time job at McDonald’s.  In January of 2023, Dmiya noticed a shift. Symptoms that were milder in the summer became moderate, and she also developed new discomforts. Her eyes were watering and hurting, her energy was depleted, she felt cold all the time and the occasional blood in her stool became more regular. “Looking back, I just pushed through whenever any of these things were going on, because nothing was that severe to stop me, and I didn’t want to NOT do the things I was doing in life,” Dmiya says. In March, an escalation of these symptoms prompted Dmiya’s mom, Tiffanie, to take her to SSM Health Urgent Care- Florissant. “Dmiya’s pediatrician had retired during the height of COVID-19. We hadn’t had a consistent pediatrician since, but I noticed that between September and March, Dmiya had lost a significant amount of weight. Her appetite for food was less than her appetite for ice. She had reported two blackout episodes that she had when she was with her friends, and her energy level and vision weakened so bad to the point she couldn’t function at school or at work. I couldn’t put the puzzle pieces together, and we needed someone who could,” Tiffanie said.

Bloodwork done at the urgent care showed that Dmiya had low iron levels and was severely anemic. Doctors sent Dmiya and her mother to the Emergency Department at SSM Health Cardinal Glennon Children’s Hospital. Dmiya’s weight had sunken to 94 lbs. She was pale, tired and her history and pattern of symptoms pointed to a suspected diagnosis of Crohn’s disease. “The doctors wanted to bring her back the next morning for a scope to confirm,” Tiffanie said. “They sent us home with some laxatives to help clear her out and suggested we should plan to be admitted Monday after the procedure.”

Dmiya and her mom returned Monday morning, March 25. In combination with lab tests, stool studies and other imaging tests, the intestinal endoscopy would help to confirm their suspected diagnosis. The scope allows doctors to view the entire colon using a thin, flexible, lighted tube with a camera at the end. The traditional size scope for a patient Dmiya’s size couldn’t pass through all the inflammation and erosion throughout her GI tract, so they had to use a significantly smaller instrument to visualize things. In the recovery room post procedure, her blood pressure dropped and she was difficult to arouse, so she was transferred to the Pediatric Intensive Care Unit (PICU) for careful observation and monitoring. She remained there for the next 3-4 days, having additional testing and procedures that would pave the way for her course of treatment. She had a CT and MRI to further evaluate her colon for additional strictures, scar tissue and blockages. She had a semi-permanent intravenous line placed for IV nutrition. She had blood transfusions to address her anemia and she also started iron and Vitamin D supplementation.

Once Dmiya stabilized and was cleared to leave the PICU, she was transferred to 3 South, an inpatient medical-surgical unit. Goals and objectives for the remainder of her stay would include diagnosis and nutrition education, getting her weight up and psychological support.

“I did a lot of homework on Crohn’s disease, joined several groups and began learning as much as I could,” Tiffanie said. “Dmiya started connecting with other teenagers that live with Crohn’s disease, also – watching their Tik Tok videos, looking at You Tube vlogs and videos, etc.  It’s a big change in lifestyle and nutrition habits, but we both feel like it can all be done if we arm ourselves with the education and resources to be successful,” Tiffanie said. A lot of what Dmiya was experiencing for several months started making sense once we had her diagnosis. The craving and chewing ice likely came from her iron deficiency. Her cramping and pain, her weight loss, her eye pain and fatigue…..all of that are associated with Crohn’s disease. We just couldn’t put all the puzzle pieces together. I’m so grateful we got answers when we did. We know that managing this is going to take some effort, but now that we know what we’re dealing with, we can face it head on and set ourselves up for success,” Tiffanie said.  Over the course of several days, Dmiya progressed from a liquid to a soft to a regular diet. “I was hungry and excited to have regular food. I didn’t have the cravings for ice that I did before, but I knew my eyes were bigger than my stomach,” Dmiya said.

A gradual re-introduction of food was essential for healing. Crohn’s disease had caused intestinal obstruction, fissures, tears and inflammation. She would need ongoing imaging throughout the re-feeding process to determine how her body was healing and adapting. Unfortunately, a regular diet didn’t agree with Dimya’s gut. A new CT revealed a large blockage necessitating a nasogastric (NG) tube placement and bowel rest for a few days. Once that blockage resolved, the feeding process started over from the beginning. She also started Remicade infusions. With Chron’s disease, the body’s defense / immune system attacks healthy tissues. Remicade works by neutralizing an immune system protein known as tumor necrosis factor (TNF).in the body. This helps to decrease inflammation, and weaken the immune system, which can help slow or stop the damage from the disease.

“It was hard not to go to a dark place,” Dmiya said. “I went from being in school, being on honor roll, having a job and hanging out with friends to being in the hospital for weeks on end. My health really needed a reset so I was told I wouldn’t be going back to school for the remainder of the year. I needed to limit stress and to make changes to my diet that my family and I had been used to my whole life. It was a lot to take in and this was my first time in the hospital. The psychology staff came to talk with me regularly and Child Life was a live-saver for me. Jen coached me through procedures, and she helped me keep my mind off things with art projects, activities and taking me to Warner’s Corner. I also loved THOR, the Facility Dog and taking trips to the Tranquility Garden,” said Dmiya.

There isn’t a cure for Crohn’s disease or a single treatment that works for everyone. Managing Crohn’s disease is a lifelong process aimed at limiting complications and reducing the inflammation that triggers the signs and symptoms. Dmiya gained a few pounds throughout her hospitalization; however, she still a way to go. For the purposes of getting her home and maximizing her healing, she was discharged home with a nasogastic (NG tube). The nutrients and volume of the tube feedings plus a low residue diet would improve her overall nutrition and put her in the best place possible for continued success. at home.  “Of course, we hoped we would avoid things like steroids and big surgeries down the road,” Tiffanie said. “As it turns out, we were re-admitted to the hospital within a week of our discharge. The inflammation and strictures in Dimya’s system are extensive. Her team readjusted their approach and put her on a regimen of steroids, IV nutrition and a liquid only diet. That’s where we’re at right now,” Tiffanie said. “For now, it’s one day at a time and she is adjusting GREAT to her new normal.

Regular follow ups and follow-up tests to make sure Dimya’s treatment plan is working include blood tests, endoscopy, eye exams and other imaging. “It’s too early to know what she’ll need months or years from now,” Tiffanie said. “We’ll manage whatever we need to do going forward. It’s been so incredibly helpful to hear stories from other people living with this condition. We are grateful for the opportunity to share OURS in hopes that it can help someone else.”