July 28, 2023 – What's the very first thing that involves mind while you hear the term “game-changer?” For two-time Olympian, three-time Women's World Cup player and former skilled soccer player Rosie White, it's a disease called ulcerative colitis, and it will be a game-changer that neither she nor her teammates could have expected.
“I played college soccer at UCLA and also for the New Zealand national team, and during an international match the symptoms started,” White said. “And I just thought I was sick, had diarrhea or had eaten something weird.”
“I had blood in my stool and thought, 'This is not normal. I've never experienced anything like this before.'”
At that point, White was 19 years old, an age at which Ulcerative colitis is common. The disorder is a kind of inflammatory bowel disease (IBD) that causes irritation, inflammation and holes (ulcers) in the liner of the intestines. For many individuals, ulcerative colitis is a painful companion, affecting every a part of life. Symptoms, which might include severe diarrhea, urgency to defecate, cramping, pain and fatigue, can literally throw people astray or, as in White's case, interrupt an important a centesimal anniversary game that was presupposed to have fun her profession with the New Zealand Ferns.
“It should be a really big moment to celebrate,” White said.
Instead, “I've probably never felt so bad at a football game. I remember collapsing after 90 minutes and the team doctor having to carry me off the field. I just lay on the floor in the locker room for an hour, trying to ease the cramps in my stomach.”
Perform the Doctor Shuffle
Ulcerative colitis is a disease with no known cause. Although researchers are making progress of their understanding of the disease, diagnosis will be difficult.
“The general idea is that it's a genetic disease, but genetics alone doesn't explain it because it spans many generations,” said Victor Chedid, MD, a gastroenterologist specializing in IBD on the Mayo Clinic in Rochester, MN. “Environmental factors are also important components; I wouldn't discount diet and dietary changes, we know that a lot of processed foods and sugar can be pro-inflammatory. And I wouldn't discount stress, which can trigger or increase the inflammatory burden.”
Together with general symptoms reminiscent of diarrhea and cramps, this stuff make a delayed diagnosis more likely.
Chedid identified that it will possibly often take months, if not years, for patients to finally land in the proper doctor's office and receive the proper diagnosis, an experience White knows all too well.
“I ended up going to several doctors to talk about what was going on,” she explained. “I remember being really frustrated because I had seen, I think, two or three different GPs because I was travelling a lot with the New Zealand team. And they all said, 'Everything seems fine' and they weren't concerned at all.”
It was only when she saw one other doctor at her school in Los Angeles, who eventually really useful that she see a specialist, that she finally received a diagnosis and medicine to alleviate her symptoms.
A subject no one desires to discuss
Like many ulcerative colitis patients, White recalled being “super embarrassed” about her illness for a very long time.
“It's really difficult to talk about. Nobody wants to talk about their bowel movements and bowel movements,” she said, also noting that at first she spent a whole lot of time putting out fires each time her condition worsened.
A key missing piece of the puzzle was education. Not only did she search for information in all of the unsuitable places, but looking back, she wishes she had had more people round her who knew what was occurring and will have supported her.
“I didn't talk about it for five years. And what I learned the hard way is that the longer you wait, the worse the symptoms get and the harder they are to control. And I ended up in the hospital for a week and a half because I didn't seek help fast enough,” White said.
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The role of nutrition
“When I think about the tools I give patients to help them and empower them to put their disease into remission, medicine is just one of them; another is that we need to give them good nutrition, or better yet, a healthy eating program,” Chedid said.
Kelly Issokson, a registered dietitian at Cedars-Sinai Medical Center in Los Angeles who focuses on gastrointestinal problems, said one in all the primary questions patients ask is what they will eat.
“Diet is so important in the treatment of IBD,” she explained. “It helps improve the response to medications that control IBD, and … in disease management, there are certain diets or food components that we can recommend to reduce inflammation.”
Fortunately, White was on the proper track from the beginning when it got here to eating regimen and nutrition. Although she followed a doctor-recommended vegetarian eating regimen for a short while along the best way and tried “every diet in the world,” as an expert athlete she had long relied on whole, unprocessed foods and avoided things like sugar and alcohol.
Issokson said that basically, individuals with ulcerative colitis should eat a varied eating regimen that features many food groups and sources, reminiscent of different vegatables and fruits and different proteins. These are parts of the Mediterranean eating regimen, which Chedid said has been shown to contain fewer pro-inflammatory foods than the normal American eating regimen.
“We know certain things about food components and how they affect ulcerative colitis in particular,” Issokson added. “We know that consuming omega-3 fatty acids is really important – not just in supplement form, but also in food form, because they help control disease activity and have an anti-inflammatory effect.”
And people should concentrate on their feelings and recognize them.
“People with active disease have different nutritional needs than people whose disease is in remission,” Issokson said. For example, people can have less appetite or certain gastrointestinal symptoms and do higher with small, frequent meals to cut back bowel movements and diarrhea.
And for individuals with certain food triggers like lactose, a sugar present in dairy products, Issokson advises selecting natural yogurt, aged cheese and even dairy-free, plant-based milk.
Other triggers may include sugary foods and drinks (which might increase urination and diarrhea) or certain medications reminiscent of prednisone (which might increase blood sugar).
Stress and inflammation
There is a direct connection between mental health and inflammation within the gut, a key reason why considering mental health is a crucial a part of the toolkit for ulcerative colitis.
Laurie Keefer, PhD, a psychologist specializing in IBD on the Icahn School of Medicine at Mount Sinai in New York City, said a couple of quarter of patients with ulcerative colitis experience depression and a couple of third experience anxiety, often together and inside one to 2 years of diagnosis. Both symptoms either occur beforehand or develop consequently of things like isolating yourself from family and friends or avoiding traveling or leaving your property for fear of an accident.
“I always describe it as a background app that tracks your location even when you don't need it. And that leads to fatigue,” she said.
“I think that's a very, very big part of this disease,” White said of the mental health connection. “Physically, the body goes through a lot. But also emotionally, the symptoms themselves cause a lot of stress because you're constantly worrying about where the bathroom is, when you have to go, and things like that.”
Being open and honest together with her family, friends and others round her, in addition to having relationship together with her doctor, have helped White break down the stress barrier. These steps are a crucial a part of what Keefer called acceptance-based work.
“We do a lot with self-compassion and gratitude, telling our patients to be gentle with themselves and treat themselves as if they were treating a friend who was telling them the same symptoms,” Keefer said. “There is more of a cognitive behavioral component to symptom management that [helps] People are 'decatastrophising' the significance of the events; we are trying to focus on the positive and help people to be more optimistic.”
Speaking of optimism, White is the epitome of that, and her prospects are, well, shiny. Now 30, she has traded the soccer field for the TV microphone, is a spokesperson for Bristol Myers Squibb, and knows her ulcerative colitis toolkit perfectly: medication, support, and relationship together with her doctor.
On or off the sector, she has definitely develop into the version of herself she longed to be.
“The key is to learn to be the best advocate for yourself,” she said.