Sharon and Saul Soltero, of Columbus, have always believed in serving others by giving back, raising their two daughters, Amanda and Savannah, with a firm understanding of how important it is to do what you can to help others. But their reason for getting involved with the Crohn’s and Colitis Foundation, Nebraska/Western Iowa Chapter (CCF), one of the 22 Community Health Charities of Nebraska (CHC-NE) member charities, was very much a personal one when Amanda became engaged to Jake Diekman. Jake is one of the 700,000 people in the United States affected by ulcerative colitis, and he is the first person to play major league baseball without a colon.
“Jake has had ulcerative colitis since he was 10 or 11 years old. He struggled with flares of the disease on and off for many years and most recently underwent the three-part series of surgeries to create his J-pouch,” Sharon said. “When Amanda and Jake began dating, she told us that he suffered from UC, and we didn’t really have much of an understanding of what it entailed. We knew he had periodic infusions of what he called ‘Hulk Juice’ (Remicade and Entivyo) to help him manage the disease, but didn’t know much more about it.”
As parents, we were anxious to spend time with Jake to get to know him better, but it took a little longer than we thought, Sharon said. “All of our visits seemed few and far between and also seemed rushed, especially since they had just driven an hour and a half to come see us.” But once she did more research on the disease by utilizing the CCF website and talking with Amanda, Sharon learned about some of the ways UC affected these visits. “I'm sure he was probably worried about having access to a more private bathroom and how he would manage to escape us when he needed to use the restroom,” she said. “Add to that the stress of being stuck in the car for that long, where there are not many pit stop areas in between our house and his. Once we understood the situation, we wanted to do anything we could to help.”
So earlier this year, Sharon reached out to the Crohn’s and Colitis Foundation and joined a team to raise money for CCF while participating in the Lincoln Half Marathon. “It was one small way that I could feel like I was doing something to help Jake fight this disease,” she said.
Sharon and her family have utilized support from CCF, support that is provided by donor dollars through CHC-NE workplace campaigns across the state. “It’s almost like a secret sorority or fraternity of people who live with these diseases, and once the local chapter finds a new member, they do whatever they can to help out.”
In return, Jake and Amanda have raised awareness as a patient and a caregiver, respectively, and Sharon said that she and Saul have been extremely proud of Jake and Amanda and their willingness to be so open about their struggles and triumphs living with UC. Because Jake plays for the Texas Rangers, he has a platform to share information about IBD and raise funds to help in the fight. “They took the public along for the ride through the three-step surgical process for the J-pouch and have held several public forums with CCF on social media to connect others with IBD. Jake has shared his story as a patient and Amanda as a caregiver. They have inspired so many others and have been inspired by those who share their stories of achieving their goals in life despite dealing with this disease,” Sharon said. “As a mom, it has been so heartwarming to see other moms reaching out to Amanda to express their appreciation for her efforts. They say that she gives them hope that their child will find a spouse who can love and support them through the ongoing fight of their disease.”
At the end of the day, those with IBD and their loved ones need two things, Sharon said. First, they need support. CCF provides information to help them understand the monster they are dealing with, as well as support and resources to help them learn to live and thrive with the disease. Secondly, they need a cure. And that means funding for research.
This year, Jake and Amanda launched the Gut It Out Foundation to help provide funding for research and to continue that work alongside CCF to make a difference for other patients. The foundation just contributed its first grant to CCF in Nebraska and plans to provide another grant in January to the Mayo Clinic Hospital in Minnesota, where Jake had his J-pouch surgeries this year. That grant will assist in current research studies from the doctors who performed Jake's surgeries.