Emily Morgan is a go-getter in anyone's book. Currently a graduate student at the University of North Carolina at Chapel Hill, pursuing a Master of Public Health degree, she was diagnosed with ulcerative colitis (UC) in 2008 while in the eighth grade, and with severe anemia a year later.
Anemia is very common in patients with UC and Crohn’s disease, which are the most common forms of inflammatory bowel disease (IBD), confirms Jason Ken Hou, M.D., M.S., an assistant professor of medicine in gastroenterology at Baylor College of Medicine in Houston. It's estimated that between 20 and 30 percent of patients with either condition may develop anemia. Still, many physicians fail to recognize the sometimes persistent problem in their patients, he says.
Fatigue and blood loss take toll
In 2010, Emily underwent a total colectomy followed by an ileal pouch-anal anastomosis, a two-stage procedure. This type of surgery removes the entire colon and the rectum, leaving the anus and anal sphincter. A pouch of small intestine is created and is connected to the anus.
Emily’s UC diagnosis and the ultimate treatment came as a shock, as she was someone who was used to going full-steam ahead. At age 13, Emily was super active, swimming full time and competing on a team, when she began losing energy and then saw blood in her stool. She kept quiet, thinking it might all just go away.
"I didn't understand then why I wasn't motivated to do anything and why I was totally exhausted all the time," she says.
Then she started having unmanageable urgency with bowel movements, along with severe cramping. Soon, she had lost large amounts of blood due to ulcerations in her colon and intestines breaking and "bleeding out."
Making one big decision
After Emily’s UC diagnosis, doctors prescribed various medications "that would make me feel OK for four or five months, and then I'd have a bad flare,” she says. “I tried every approved medication for UC.”
Iron supplements weren't recommended due to their side effect of constipation, and the steroid prednisone seemed to be the only way to impede her blood loss.
Meanwhile, Emily couldn’t swim anymore, and she avoided any social activities, opting instead to stay in bed a lot because she felt so bad. Surgery seemed the most logical, although daunting, option, and so after much consideration and talks with her family, decided to take the leap and move forward.
After her surgery, her anemia abated — until this year.
"Mine is iron deficiency anemia, and we treat it with iron infusions, one infusion two weeks in a row," she says. "I sit for an hour with an IV, and after I'm finished, I feel like Super Woman, like I can go run a marathon." Emily also takes vitamin B12 injections to further boost her immunity and energy.
It all helps Emily stay on the fast track and be able to tick off all the items on her long to-do list.
"I'm a really social person who cares a lot about patient advocacy and helping other people," Emily, 24, tells HealthCentral. In fact, from 2012 through 2016, she was a member of the Crohn's & Colitis Foundation’s National Council of Collegiate Leaders. She partnered with the Foundation from September 2016 to March 2018 as a research assistant at the Dartmouth Institute for Health Policy and Clinical Practice on a project to improve quality of care for adults with inflammatory bowel disease, like her.
How patients become anemic
As with Emily, the most common reason UC patients develop anemia is because of bleeding, Dr. Hou says. This bleeding is ultimately caused by inflammation in the colon, when the body's immune system "overreacts" to a trigger, perhaps one in the environment or a food additive. Inflammation causes ulcers to form, and they, in turn, may bleed.
Another way patients may become anemic is because when they feel sick, they limit what they're eating, which can reduce iron intake, Dr. Hou says. Finally, in what he terms a "third strike," even though a UC patient is eating well, they may not absorb iron sufficiently because of inflammation in their colon and throughout their entire body.
A pathway to better health
Echoing an opinion shared by the Crohn's & Colitis Foundation, and as a member of its Houston Leadership Board, Dr. Hou agrees that more could be done to identify and manage anemia in the IBD patient population. The foundation even developed what's called the IBD Anemia Care Pathway, which includes current guidelines for clinical management. Dr. Hou calls this a "practical approach that's not too complicated."
He and others who treat IBD understand that a patient having a flare that already involves pain and nausea doesn't want to take iron pills that may cause more pain and nausea.
"If a patient is inflamed and anemic, we don't want to waste time with oral iron that they may be unlikely to absorb and may not tolerate well," he says. "We can make them more comfortable with IV iron in a couple of quick doses and without long, drawn-out side effects."
Getting relief from anemia faster
Before infusions and the Pathway, many patients became anemic and stayed that way, Dr. Hou says. "Patients had to wait for their disease to get under control before they could start anemia treatment, and for those whose disease was never under good control, their anemia wasn't well managed either."
Now, he says, the treatment trajectory goes more often like this: A doctor notices a patient might be anemic. Lab results confirm low levels of iron. If their disease is in remission, they try oral iron first, but if a patient is inflamed immediately, they may receive IV iron. Follow-up is important, and if blood count hasn't improved within four weeks of completing the iron infusion, they may need another round of iron. If this repeats, they should be referred to a hematologist, a specialist who treats blood disorders.
It's important to get control of this problem early, says Dr. Hou.
"Patients who are anemic are more likely to have other complications and be hospitalized and ultimately have more negative outcomes,” he says. “We want to manage anemia at the same time as their disease, so even if that isn't under excellent control, they can feel a whole lot better in general."