One tough girl

Dotzler suffers from ulcerative colitis, a disease that causes inflammation and ulcers in the lining of the colon. Ulcers form where inflammation has killed the cells that usually line the colon. The inflammation causes pain and abdominal cramping, along with diarrhea. She was diagnosed when she was 5.

“I don’t remember not having this disease,” Dotzler admitted.

After spending 50 days in the hospital recovering from surgery to finally remove her colon this summer, Dotzler, and her mother, Shelly Merkling, are ready to disclose Dotzler’s story as well as the long road, consisting of two more surgeries, that lies ahead.

Through a few tears, the mother-daughter duo — who frequently finish each other’s sentences — recount the physical and emotional battle they have been through and how their faith keeps them strong and gives them motivation to keep going.

An unexpected childhood

Dotzler’s journey began on Thanksgiving in 2000. Merkling joked that it started with a pint of beets.

“Jessie ate almost an entire pint of beets on Thanksgiving,” she remembered.

She continued that when her young daughter complained that her stools looked “funny” Merkling was confident the beets were the culprit.

“It didn’t get better, though,” she said as the smile faded from her face.

Four days later, Dotzler saw Lance Hardwig, a local doctor, who suggested she visit the pediatric unit in Virginia, Minn., for a 24-hour observation.

“Some of her lab work wasn’t right, so he suggested we check it out,” Merkling explained.

Merkling said at that point, she wasn’t too worried and figured Dotzler would spend a day in Virginia, figure out what was wrong, and come home.

But then Dotzler got worse.

After spending 10 days in the Virginia hospital, no diagnosis was made and Dotzler was transferred to the Children’s Hospitals and Clinics of Minnesota in Minneapolis.

Following more testing and a colonoscopy, the 5 year old was diagnosed with the incurable ulcerative colitis.

Treating colitis

The diagnosis hit the single mother hard. With no history of colitis or it’s cousin, Crohn’s disease, in the family, learning how to treat the condition was new and unfamiliar.

“Jessie’s disease was severe when she was diagnosed, but it wasn’t to the point she had to have her colon out immediately,” Merkling said.

Dotzler added, “They really use the surgery as the absolute last resort.”

Doctors wanted to see how Dotzler would react to medicine before turning to surgery.

Treatments Dotzler has gone through include steroid therapy that causes mood swings and swelling of her face, Remicade treatments that weaken her immune system, and another medication that warned pregnant women or women thinking of becoming pregnant not to even touch.

“And here they are giving it to a 5-year-old kid,” Merkling said of the medicine.

“When I would get some of the medicine, the people giving it to me would be wearing big, yellow, hazmat suits,” Dotzler said. “It was scary.”

Taking medications to keep the colitis under control wasn’t the only thing Dotzler had to live with by having the disease. Creating and maintaining friendships were also a challenge.

“We tried to keep her having as normal of a life as humanly possible,” Merkling said.

However, because steroids gave her mood swings and a suppressed immune system made her sick, Dotzler missed a lot of school.

“I wanted to keep it a secret,” Dotzler said of her disease. “I didn’t tell kids why I was gone from school so much because I didn’t want people to think I was gross. I felt very alone.”

Dotzler said while she was close with her older sister, Kassie, she didn’t feel a connection with any of her classmates, and when they would ask her why she was missing school, she made up excuses.

“It was excruciating,” Merkling said of watching her daughter deal with the social effects of the disease.

Dotzler did find light at the end of the friendship tunnel when she began attending Camp Oasis — a camp for kids with ulcerative colitis and Crohn’s disease eight years ago.

“My first year at camp I was like, ‘oh my goodness, I’m not alone in this,’” Dotzler said. “These kids at camp have gone through the exact same thing. That week was the best feeling ever. It was like a safe spot.”

Camp came as a relief for Dotzler, but she was also able to find someone in which to confide at home in the Falls.

“Zoey Blumhardt was the first person I told (about the disease) other than kids at camp,” Dotzler said. “She didn’t think it was weird and she was someone who knew what was going on. That felt nice.”

Dotzler continued that because Blumhardt made her feel comfortable, she slowly started to share her story more.

A summer in the hospital

In the decade since Dotzler was diagnosed, flare ups required stronger medications to keep it under control. Every eight weeks, Dotzler would undergo Remicade treatments in Duluth.

“It was hard to adjust work and school and Kassie’s life,” Merkling said.

Last winter, Dotzler started getting sick, but with the hope that it would go away because she hadn’t had a flare in 3 1/2 years, she kept it to her self.

By May, symptoms of her disease had come back and Dotzler continued to keep it a secret to avoid ruining Kassie’s high school graduation.

“I finally confided to one of my friends from camp and he encouraged me to tell my mom,” Dotzler said.

Unaware Dotzler’s problem had been lingering for several weeks, Merkling said she didn’t rush to the hospital right away.

“I did call the doctor and he told me we could treat it at home or come in,” she said. “Jessie said she thought she should go to the hospital and when I woke up at 5 a.m. and she had bags packed by the door, I knew it was serious — she hates packing.”

On June 26, Dotzler walked through the doors of the children’s hospital expecting a five to seven day stay for treatments.

When she was being evaluated in the emergency department, the doctors noticed Dotzler not only had an extreme flair of her colitis, she also had pancreatitis, which is inflammation of the pancreas.

Dotzler was admitted to the hospital and put on a full gut rest which means that she can have nothing by mouth — not even water.

“After several days, it looked like her body was recovering, so the doctors suggested she eat something,” Merkling said. “This lead to a severe attack of her pancreatitis and brought on a lot of pain.”

Dotzler’s team of doctors discovered her colon was beyond repair and needed to be removed.

“It became apparent that we were going to be in the hospital longer than first expected,” Merkling said.

Surgery to remove the diseased colon Dotzler had hung on to for 10 years was scheduled, only to be postponed after Dotzler started getting fevers.

“Things took a turn for the worse and she was transferred to the pediatrics intensive care unit because they (doctors) were having trouble regulating her oxygen levels, blood pressure, and high fevers,” Merkling said.

After four days in the PICU, Dotzler was strong enough to undergo surgery and she had a total colectomy on July 11.

Because she did so well, Dotzler was told she would be able to go home in a week. The night before she was discharged, Dotzler developed mouth sores, experienced severe abdominal pain, and had a high fever. As the week went on, she continued to get worse.

“She was transferred back to the PICU so they could administer a very strong pain medication,” Merkling explained. “This seemed to work so she was transferred back to the sixth floor to recover to go home.”

Again, both spirits were crushed and the mouth sores came back, keeping Dotzler in the hospital even longer.

“Throughout this whole thing, there were moments when I felt so helpless,” Merkling whispered through tears. “There were times when I just wanted to grab her and walk out and leave. I just wanted to turn back time, I wanted to erase it. The light at the end of the tunnel just wasn’t there.”

Finally, 50 days — almost to the hour — after they entered the hospital, Dotzler was discharged Aug. 15.

Long road ahead

Through her entire hospital stay, Dotzler’s spirits made her a hot commodity among nurses at the hospital.

“They fought over who would treat her,” Merkling said. “She would get down every now and then, but she was always trying to smile and be in the best mood possible.”

And while Dotzler may be home for now, her journey is far from over. Within six months, she will need two more surgeries and the next one Merkling referred to as the “big one.” It will require her to be in the hospital for a week to 10 days. The third surgery should be less invasive, but will still require several days in the hospital, Merkling added.

For now, the family is looking forward to a benefit to help them with expenses scheduled for 5-7 p.m. Sept. 8 at the Elk’s Lodge 1599 in the Falls.

“I am so excited for the benefit and to see everyone,” Dotzler said with an ear-to-ear grin.

There will be a freewill spaghetti dinner along with a silent auction.

Merkling said she was thankful for everyone who helped organize the event and for the rest of their family and friends.

“We have a different path than most people do, but we still have a good life,” she said.

IF YOU GO:

What: Freewill spaghetti dinner benefit for Jessica Dotzler

When: 5-7 p.m. Sept. 8

Where: Elk’s Lodge 1599

Why: To help family with medical and other expenses