What's Your Game Plan for Managing IBD?

Editor’s Note: MD Magazine spoke with world-renowned soccer star, Brandi Chastain, who recently partnered with AbbVie on a new advocacy campaign, My IBD Game Plan, in the wake of her son’s Crohn’s disease diagnosis. Millie Long, MD, MPH, associate professor of medicine in the Division of Gastroenterology and Hepatology at The University of North Carolina (UNC) Chapel Hill School of Medicine, shared the clinical landscape and management methods for the condition.

MDMagazine: Tell me about your son’s initial diagnosis with Crohn’s disease (CD). Were there any suspicious symptoms or did you learn about it from a routine checkup?

BC: He was diagnosed a year ago. Prior to that, he was in the 3^rd grade and leading up to his 9^th birthday there were some signs of him not feeling well, but we chalked them up to things kids get from school — low-grade fever, diarrhea, general fatigue, etc. The kinds of symptoms parents see in their kids or the kids complain about that don’t really make you jump to any conclusions; you just try to manage them in the best way you know how.

He got through his 3^rd grade year, but he’d had some accidents, was using the restroom quite frequently, and was having diarrhea that was more than normal. Then he presented with physical symptoms like fistula, and it was immediate and apparent that we needed to get to the pediatrician. She literally had us in to the gastroenterologist the next day. So, in terms of how long he was having symptoms, it’s hard to tell.

While Crohn’s is typically more common among adults, how have the doctors tailored their treatment for your son? What are some of the main management methods they are using?

BC: I think initially it was, “First let’s get all the information that’s necessary”. I think that was the biggest source of relief. When the doctor gave us the diagnosis‑‑I don’t think that’s what any parent wants to hear, that your child has a chronic illness‑‑it was some sort of relief that now we knew what it was and we could move forward.

One of the toughest things about hearing your loved one has IBD is that they’re unpredictable at times, and modifications will need to be made. I feel really lucky that I’ve had the experiences I’ve had from soccer. At the essence, the game is ever changing — elements change, teams change. Thinking on your feet and being aware of the variables around us that can inhibit or help a positive environment were in our wheelhouse, so to speak. I think the things we had to change were a few dietary things: we cut out lactose; we cut out really high-fiber foods like carrots, apples, and refried beans. His grandmother, who used to live with us, used to make homemade beans and they were delicious. We don’t know for sure if that was the main source, but potentially could have been. We’ve also learned about my son’s medication: how much, how little, etc. We’re in a really great place right now.

How is your son handling this? Has here been any big social or emotional impact?

BC: The greatest thing is we have a very solid community of people who are so interested in being proactive and helping us, and being sympathetic to what’s happening in our environment. When Jaden was diagnosed, we went directly to the school, explained the situation, and asked the teacher for some help: Can he sit near the door? Can you not make going to the restroom a big deal? Can we store extra clothes in the office? Can he come in to take his medication? And everything was, “Yes, yes, and yes!”

And really, I’ve got to give credit to Jaden. Part of the heavy lifting that comes along with the social component for those who live with IBD is what do people think? We’ve been so lucky, because we’ve never really had to deal with that, since we’ve been open with that.

How did you get involved with MY IBD Game Plan? What’s your role with this initiative? Will your son be involved as a spokesperson for other children affected by this condition?

BC: Once the diagnosis was made, obviously my husband and I immediately became advocates for anyone living with IBD, since now that’s our world. Prior to that, strictly we were in the world of soccer — he as a coach, me as a player, and me as an advocate for safe soccer and a nonprofit I founded called the Bay Area Women’s Sports Initiative. So those were kind of our spaces we were living in. As soon as Jaden got diagnosed, we all became advocates once presented with the ability to partner with AbbVie and share MY IBD Game Plan and share that there are resources out there on the web with ibdgameplan.com.

I really recognized the opportunity that soccer’s given me to use the platform and vehicle of soccer and that success and have my voice heard in a population that may not have been familiar with IBD or Crohn’s. Perhaps we can now help a population that has been looking for an advocate. For me, they’re very parallel, and both are obviously surrounded by teams, fans, and people, so it was not a big leap for me to be involved, and for me to say yes.

What exactly is your IBD Game Plan?

BC: Our treatment is very specific to Jaden. The number one thing is to have a good relationship and find a gastroenterologist that you trust, whom you can be open with and share information with. That really is the beginning of the plan. When you do that, your doctor can advocate for you and give you options. What are the best therapies and treatments for you to find a way to toward remission or continue remission and live your everyday live with Crohn’s or UC? Then the next thing is to use resources that are available. Before Jaden’s diagnosis, I didn’t understand what IBD or Crohn’s was, and had no idea how to advocate for people who had them. So now I’m using the tools I’m sharing on my own. It’s reminding people that having great teams is really important.

I’ve been on the national team for many, many years. I’ve had my ups for sure as people understand the World Cup, they understand the Olympics, but I’ve also had moments where I’ve been injured, and you need people around you who are going to put their arms around you and say, “It’s okay.” Having experienced those things, I feel that my advocacy, my gratitude for those around me and my general passion for helping my son, make me a perfect partner with AbbVie on this journey.

It’s great to see you taking a stand for something you’re so passionate about both on and off the field. How does it feel to be elected into the National Soccer Hall of Fame? How are you balancing your athletic accolades with your advocacy for this initiative?

BC: When I got the call from the US Soccer Federation president Sunil Gulati about the National Soccer Hall of Fame, I was obviously very humbled, very appreciative, and overwhelmed… those would be some of the words that come to mind immediately. The journey to the National Soccer Hall of Fame was never my objective. I was very fortunate that I played with the people I believe are some of the best and brightest our country’s ever had. And, to have been supported by parents and family and friends who really cared about me and wanted to see me successful. This award and this recognition really encompass all the people who were involved, because it was certainly not just me on my own. If it were, it could have gone wrong a long time ago.

I’d like to reiterate the fact that when people are going through different situations in their lives they feel they’re on their own, and that couldn’t be farther from the case. There’s 1.6 million Americans who live with IBD, specifically Crohn’s and ulcerative colitis, and together we can really make a difference. We can really find the support, treatment, and outlooks we need with the tools on ibdgameplan.com.

MDMagazine: What’s the current disease landscape/demographic of IBD?

ML: Crohn’s disease (CD) and ulcerative colitis (UC) are the two most common forms of inflammatory bowel disease (IBD), which affects as many as 1.6 million Americans. As many as 70,000 new cases of IBD are diagnosed in the US each year.

What are some of the common misconceptions associated with IBD?

ML: Symptoms of CD and UC are not one-time events. These are chronic, inflammatory diseases that can be serious and require effective, long-term treatment in order to achieve and maintain remission. Also, IBD is not irritable bowel syndrome (IBS). By comparison, IBS is a sensitivity of the gastrointestinal (GI) tract that is not caused by inflammation.

What are your go-to treatment methods? Do they differ drastically between pediatric and adult patients?

ML: There is no cure for CD or UC, but there are treatment options available for both pediatric and adult patients that directly address the inflammation that causes symptoms, and may help people with IBD achieve and maintain remission. Treatment options for IBD include prescription medications and surgery alongside adjustments to diet and nutrition. Prescription medication types include aminosalicylates, corticosteroids, immunomodulators, and biologic therapies. Some IBD medications, such as steroids, are intended for short-term use. Other IBD medications, such as aminosalicylates, immunomodulators and biologic therapies, are intended for longer-term use. There’s no one treatment that’s right for everyone, so it’s important for IBD patients to work with their doctors to find the best treatments for them.

Research shows IBD patients can be easily susceptible to other inflammatory conditions. How do you help prevent/ manage that?

ML: CD and UC can be serious diseases, with symptoms that may change in severity or change over the course of each patient’s life. That’s why it’s important for patients to be open and honest with their doctors about all of their symptoms, even those beyond the GI tract, including skin lesions, joint pain, and eye inflammation.

Can you talk about the emotional and social impact IBD conditions have on patients?

ML: IBD can create emotional and social challenges. Having a game plan to address these challenges is important. People living with IBD should learn as much as they can about IBD and check out the resources on www.IBDGamePlan.com including the IBD Playbook. The Playbook helps those living with IBD choose the biggest emotional or social challenge they want to overcome and add it as one goal within the overall IBD Game Plan.

What is your role with My IBD Game Plan? Do you have any immediate goals?

ML: I’m partnering with AbbVie and Brandi Chastain to empower people living with IBD to proactively work with their healthcare providers, loved ones, and friends to learn about the disease and set goals to manage the symptoms of IBD by creating an IBD Game Plan.