Surgery allowed Amy Akers to resume an active lifestyle after years of battling ulcerative colitis.
A respite from ulcerative colitis five years in the making
issue 21 | Spring-Summer 2014
Amy Akers, a star athlete on the Grand Valley State University varsity swim team, faced a five-year battle against a disease that no one could see and many didn't believe she had.
After working hard to make a name for herself in collegiate sports, she virtually stopped living. Diarrhea, fevers and headaches plagued her. She says everything she worked so hard for fell apart as she managed the symptoms of ulcerative colitis, an immune-mediated disease that causes the colon to become inflamed with ulcers.
"With ulcerative colitis, there's a spectrum of severity," says University of Michigan Health System gastroenterologist Ryan Stidham, M.D. "This is a condition that requires specialized medical attention, starting with diagnosis. Careful formulation of a treatment plan needs to be personalized to the patient's individual type of UC — no two patients are exactly alike. In addition, taking the time to explain to patients what is happening to them and how to partner in improving the condition is essential for the best outcome."
Stidham is one of nine gastroenterologists specializing in inflammatory bowel disease (IBD) at U-M. In addition to patient care, Stidham performs research focusing on improving the ways to monitor disease activity and predict the clinical course of Crohn's disease and ulcerative colitis. More than 25 IBD clinical studies are underway at U-M, offering cutting-edge treatment to patients who have failed standard therapies.
"There's been an explosion of knowledge over the past decade, and with that has come new ways to diagnose and treat this frequently very young population," Stidham says. "People who are functioning in work and school can become completely debilitated by these conditions."
Over the course of her illness, Akers, now 23, would see four different doctors, including one who told her she had an eating disorder. Frequent bathroom trips and stomach pains continued. "Colonoscopy after colonoscopy, multiple blood tests, X-rays, MRIs, barium swallows — and none of them gave the answer I needed," she says. "I shut out the world and denied what was happening."
Early diagnosis, lifetime management
Both Crohn's disease and ulcerative colitis are conditions that fall under the umbrella term of inflammatory bowel disease and both often require lifelong management. Crohn's disease and ulcerative colitis have similar symptoms and treatments, but also distinct differences in course and treatment. With a series of tests, doctors can usually tell ulcerative colitis from Crohn's disease; however, occasionally they are indistinguishable.
While the diseases can occur at any age, they often start between the ages of 15 and 25 and affect men and women about equally. Ulcerative colitis affects about 600,000 people in the U.S., while Crohn's disease affects about 700,000.
The type of treatment, including immunomodulating therapies, varies from patient to patient based on symptoms, severity and the individual's disease biology. Treatment includes several medical therapies and, in some cases, surgery. Treatment options continue to change rapidly, with new medications, more effective use of traditional treatments, and improved decision-making on when to pursue surgery.
Chance to live again
Two and a half years after her symptoms began, Akers met with Stidham, who diagnosed her with ulcerative pancolitis. By this time her disease had become severe, and while aggressive medical therapy significantly improved control, over time it proved to be insufficient. Akers' symptoms became severe enough that she needed to cancel a training trip to Florida and retire from competitive swimming.
She was hospitalized three times with symptoms of UC, and each time, her mother explains, "She was a little worse than the time before." She reached a point when conventional therapies, as well as novel therapies available through clinical trials, were not helping and she made a tough decision to have her colon removed. "I felt like the condition was controlling my every move," says Akers. "I tried countless medications and tests before I realized I was fighting a losing battle inside of myself."
Stidham explains that, understandably, most patients are willing to go to great lengths to avoid surgery. "We are charged with helping to predict if a change in medication will be sufficient or if surgery is the best option," he says. "In severe cases of ulcerative colitis, we begin discussing surgery as soon as it becomes evident that intensive therapy is needed. Having surgical discussions early provides an opportunity for patients to consider the benefits of medical versus surgical treatments before the situation becomes emergent, ending the cycle of pain, repeated hospitalizations and disability."
After several discussions with her medical team, Akers did her own research and found a blog by a young woman who also had a surgical removal of the colon and rectum and restorative proctocolectomy using a J-pouch. Akers realized the surgery would be a chance to live again. It would provide control over her symptoms, including pain, diarrhea and fatigue, and once the pouch was connected to the remaining muscles, elimination would remain relatively normal.
"I went in to surgery and my colon, with all its inflamed glory, came out," says Akers, who today is swimming again and is also training for a half marathon being held in July to raise money for the Crohn's and Colitis Foundation. "I had tubes and monitors in every direction, but even with the new scars and holes and wounds, I still felt remarkably better. There was no more pain or bloating. Just days after I could tell a difference."
She participated in a road race just three weeks after colon removal surgery. She was living true to the rallying phrase, "No colon, still rollin,'" used by other young adults who have had UC.
While not a first choice, the surgical procedure, which is frequently done in two operations, can be a best option for treating chronic UC when medical therapy has failed. Akers' surgeries began June 21, 2013, with University of Michigan Health System colorectal surgeon Karin Hardiman, M.D., Ph.D., completing the second step during a one-hour surgery on Sept. 13.
"Before the surgery, I was intimidated by how many things could go wrong, but the promise of what could go right was so strong and so sweet," says Akers, who counsels other IBD patients and raises money for the Crohn's and Colitis Foundation. "It's a disease that's hurt so many, but with support, I learned how to fight back."