Emmie's four-year fight to find normal
Written by Mary Wallace
No one was taking Emmie seriously. Maybe the doctors weren’t listening to her because she was technically still a kid, but Emmie knew she was dealing with a severe and very grown-up illness. When she found blood in her stool, things got even more serious. Eventually, due to the continuous bleeding, she became severely anemic – a grave and scary situation. Emmie often looked gray and ashen due to loss of blood, she would almost pass out walking up the stairs at school, she had little energy and she was always fatigued. She later found out that she was losing blood faster than her body could replace it. She needed the doctors to listen to her and help her, but she wasn’t getting the support she needed until she came to Kalispell Regional Medical Center.
About 38,000 people are diagnosed with ulcerative colitis in the United States every year, roughly 12.2 in every 100,000 people. Ulcerative colitis (UC) is an inflammatory bowel disease that mainly affects the lining of the large intestine (colon). It is an autoimmune disease that follows a relapsing-remitting pattern, which means that periods of flare-ups are followed by periods of remission. A UC flare-up may cause frequent or urgent bowel movements, diarrhea, bloody stool and/or abdominal pain. Patients may also experience fatigue, lack of appetite and weight loss. Ulcerative colitis is experienced differently by each person and can be progressive, so over time, symptoms could get worse or change altogether.
Emmie Belleisle was 14 years old – a Belgrade High School freshman – when things started to go horribly wrong. She was diagnosed with ulcerative colitis in November 2015 and began a four-year journey of trying nearly every available medication to treat the disease, including biologics and a fecal microbiome transplant, all with no appreciable results. Emmie asked her local doctors about surgery to remove her colon, but was told this could only be considered as a last resort.
“UC affected my whole body, my whole life,” says Emmie describing her sore back, tight joints, extreme nausea, fatigue and the embarrassing necessity to make frequent, urgent bathroom visits. She missed so many classes due to her ailment and had to play catch-up a lot. In high school student’s terms, she had no social life, couldn’t go out with friends and always had a mental inventory where the closest bathroom was located wherever she was. When she tried to participate in track, she had to quit due to her frequent flare-ups and the resulting physical limitations. She was being held prisoner by her colon.
Her physical struggles were dogpiled with the mental and emotional toils, too. The medication for UC increased Emmie’s weight significantly which really impacted her self-esteem, and the ups and downs of her treatment often left her feeling discouraged and dejected. Her emotional roller coaster ride incited bouts of depression as well.
“It seems like high school is a social competition in so many ways already, I didn’t need to add anything to my list,” says Emmie.
Katie Knopf, Emmie’s mom, was also enduring this dreadful experience with her. While Katie didn’t have the physical illness, she was with Emmie every step of the way, watching her child burdened with pain. Katie worked extra hours to pay medical bills, took time away from work to juggle Emmie’s doctor appointments and hospital stays, and lost sleep as she worried about her little girl’s condition and wishing she could provide some relief. Emmie and her mother have always been very close. Emmie recalls thinking to herself “don’t let go” each time she went into surgery — because she knew it would crush her mother.
Emmie admitted there were times that she felt tired enough to give up — tired of the doctor visits, the meds and not finding a solution — yet, it was because of her mother that she keep pushing through. Tearfully, Emmie shared, “Sometimes it felt like my mom and I took turns saving one another throughout this whole ordeal!”
Things eventually reached the point where Emmie was interested in getting rid of all the medications and removing her colon to improve her overall health. She visited with doctors in Seattle to inquire about surgery and was told she was too overweight to consider this option. Additionally, she was informed that if she became a candidate for surgery, she would likely not be able to have children later in life as a result.
“I did not get a good vibe in Seattle,” says Emmie. “I felt I was being forced to choose between a healthy life now at the expense of my future life and dreams. I couldn’t believe this was the trade off or the only option.”
Emmie was eventually referred to Federico Seifarth, MD, a pediatric surgeon at Kalispell Regional Medical Center. Emmie braced herself for yet another doctor who would likely not listen to her concerns. To her surprise, Dr. Seifarth listened to her. He also gave her a way to fix this nightmare.
They discussed long-term options of this type of surgery, and Emmie, for once, felt heard. She said the medical staff at KRMC talked to her directly and addressed her concerns. They communicated with Emmie instead of looking past her and talking to her parents. Dr. Seifarth also said he felt that having the surgery didn’t rule out the option of having kids; the odds were in her favor.
In a combo of surgeries in 2016 and 2017, Dr. Seifarth removed Emmie’s problematic lower bowel and reconnected her small intestine. After recovery, Emmie not only felt better, but she thrived. She returned to her work-out routine, joined the golf team, got back on track with her studies and took to her drama and Spanish classes with fervor. Emmie was finally feeling like a regular high school student and, best of all, she was happy!
At her postoperative visit of December 2017, Dr. Seifarth reported that Emmie was doing quite well. Her digestive system was functioning normally and she was able to tolerate a regular diet after four grueling years of medication and a life ruled by unpredictable intestines.
“I had not seen Emmie doing so well in years. It was a great relief to see her healthy once again,” remarked Katie, Emmie’s mother. “Emmie is so strong. I’m so glad she can start chasing her dreams now.”
Emmie turned 18 in August 2018 and is now happily attending MSU in Bozeman. After discovering her sickness when she was just 14, she is ready to put the last four years behind her. In honor of the beautiful and strong women in her life, including her mother and grandmother, she now sports a celebratory tattoo of a hummingbird on her shoulder. Emmie is also pursuing her dream of becoming a Spanish teacher and studying abroad in Spain soon.
“Life is so much better without my colon and all the meds I was taking,” says Emmie. “I’m so grateful to Dr. Seifarth for helping me find a better way to live. When no one else listened, he did. And now I have my life back.”
Learn more about pediatric services at Kalispell Regional Healthcare at krh.org/children.