“I’ve Had UC for Half My Life. Now, I Feel Great.”
At 18, Megan Starshak learned she had ulcerative colitis. Here’s how she went from rock bottom to stronger than ever with an effective treatment plan.
Megan Starshak, now 36, was in Florida in 2002 for spring break when she had her first ulcerative colitis (UC) attack. The high school senior had gone out for a half-hour run with a cross-country teammate. “During that time, I had three very, very urgent bowel movements that came out of nowhere," says Starshak. "Luckily, I found a bathroom all of the times. I just thought it was weird—a travel bug, or something. But then we got home and it never went away.”
Home was the Chicago suburbs, and Starshak was looking forward to a summer working as a lifeguard and hanging out with her friends before college. But she still was having symptoms. “I would pretty much have to go every time I went for a run," she recalls. "It just slowly got worse—from a few random bouts of urgency and diarrhea to, all of a sudden, I’m having abdominal pain every day. I’m going to the bathroom six, eight, 10 times a day with loose, runny stools and abdominal pain.” She was also exhausted.
Although Starshak said nothing, her mom noticed how she was napping a lot and complaining of stomach aches. She got her to the doctor—first an internist, then a GI specialist. After bloodwork and a colonoscopy, Starshak was diagnosed with UC, an inflammatory autoimmune condition. “I was like, ‘Okay, this has a name. Now we can treat it. Now we know what it is. That’s a relief.’”
What UC Does to Your Colon
Ulcerative colitis is an immune-mediated disease, says Corey A. Siegel, M.D., section chief of gastroenterology and hepatology at Dartmouth-Hitchcock Medical Center and a professor at the Geisel School of Medicine, Dartmouth, in Lebanon, NH. “Meaning that the immune system is turning against something in the body that’s causing this inflammation. With uclerative colitis, it’s really the immune system going after a very specific part of the colon called the mucosa.” The rectum, the last part of the colon, can become inflamed, too.
Think of the mucosa as a cellophane wrapper—a thin lining that covers the first layer of the inside lining of the colon, Dr. Siegel explains. Because of inflammation, that top layer gets inflamed and irritated. It turns red and the tissues in the colon swell, which can make blood vessels tear more easily. Even stool moving through your bowels can scrape the colon so that it bleeds. “Many of people with ulcerative colitis have not just diarrhea, but blood with that diarrhea,” says Dr. Siegel.
UC affects about 1% of the population, or roughly 3.5 million people. No one knows exactly why your immune system turns on your colon. “With ulcerative colitis, there are probably multiple different chemical pathways at work that lead to inflammation. Some are more predominant in some people versus others. And it’s probably driven by a number of things—an individual’s immune system, their genetic makeup, and probably their microbiome, which are all of the bacteria that live in their gut,” Dr. Siegel explains.
Some people have mild symptoms and inflammation, while others, like Starshak, have more severe disease, or it waxes and wanes. “They might have symptoms for a few weeks that goes away. Then, it comes back and it goes away, and it has this relapsing and remitting course, sometimes with quite a long break in between,” explains Dr. Siegel.
One of the long-term effects of all that inflammation is that it your bowels will have a harder time doing its normal job, including absorbing water and expelling waste from the body, even when the ulcerative colitis is in remission. Plus, frequent and severe inflammation can put you at risk for colon cancer, says Dr. Siegel. “It’s like having repeated sunburns on your skin. We all know it leads to skin cancers, and it’s the same thing as the skin on the inside of your colon. When that mucosa gets inflamed over and over again, it also increases the risk of colon cancer. Which is something we would like to prevent.”
Life and Loneliness With UC
Before she went to college, Starshak thought of her UC as an inconvenience. The doctor put her on mesalamine a class of anti-inflammatory drugs known as 5-ASAs, standard treatment for mild-to-moderate cases.
But it didn’t really help. Once in college in Milwaukee, WI, Starshak quit the crew team she’d recently joined. She also gave up running—a big part of her identity and a stress reliever. “I would have to go so urgently—soft, runny stools," she says. "It didn’t make sense: If you go to the bathroom, you should be empty. And then I’d run maybe a tenth of a mile and I’d have to go again, just as bad, just as painful.”
Her UC also interrupted her sleep. “Every single morning, I’d have to wake up around 6 a.m. and run down the hall to the bathroom. Sometimes I didn’t make it, or I’d flush my underwear down the toilet. That was a thing for all of the years that I had symptoms. I might have to dispose of my underwear and buy new underwear,” Starshak recalls.
Soon she was taking 12 mesalamine pills, six in the morning, six at night. “Somehow, as a college kid, I still remembered to take [them] with very few missed doses,” she recalls. She also took steroids, but they didn’t help much. At one point, her new doctor in Milwaukee switched to her balsalazide, another anti-inflammatory. Still no relief.
At the peak of her illness, she was going to the bathroom at least a dozen times a day and going through a roll of toilet paper each day. She lost weight and became anemic, partly a result of so many BMs a day and the bleeding that accompanied them. “I also didn’t feel like eating, especially during the lowest points in college. The pain of going hungry was easier than the pain of having food go through me—it felt like I was eating and digesting knives,” she says.
“All four years of college got progressively worse and worse. It was so lonely. I knew people, but I was so sick. I didn’t want to go to a party or a bar—there might be a line at the bathroom. Because sometimes you can’t hold it, and that’s what people don’t understand as an adult,” she recalls.
The reason why people with UC have this urgent need to go—and sometimes don’t make it—is because their rectum is so inflamed that “it’s harder for people to control their bowels and hold it in,” says Dr. Siegel.
“It was really isolating,” Starshak recalls. “School came first, so going to class, coming home, watching movies, sort of watching life happen around me while I was in my apartment or my dorm room, just being sick. You feel like you’re forgotten when everyone’s out having fun.” At the time she felt the young people around her really didn’t care. “I didn’t know how to frame that conversation,” she admits now. “People would be like: ‘Oh, that’s gross. I don’t want to hear about it.’" Other times, she says, the response would be confusion or dismissal.
“By the end, I was just so consumed with managing the disease. I remember lying in bed and being so tired that I wished that I could melt into a puddle, because I felt like existing was too much energy,” Starshak remembers.
Finding the Right Doctor
The doctor she’d had in college hadn’t been progressive with treatments, even when Starshak brought up research. “He prescribed anti-inflammatories, which didn’t really work; prednisone, which was one, horrible, and two, not a long-term solution; and enemas, which nobody, especially when you’re in college with a roommate, wants,” she recalls.
She nabbed a last-minute appointment with a new doctor right before the Fourth of July weekend two years after graduating college. She went through her medical history and when she was through, her doctor told her, “You’re 24. You deserve to live your life.”
“I pretty much started crying right there because no one in the medical system had ever recognized that before—this isn’t just a list of symptoms and we have to keep the inflammation down,” says Starshak. “This is this thing that stands between me barely getting by every day and me living my life, and going after my dreams. And it was just a wave of relief and hope.”
The doctor’s goal: to do whatever it took to get her to remission. He tried several medications, including azathioprine, until putting her on infliximab, a biologic used to treat autoimmune disorders, which she got via an I.V. The doctor told her it could take eight weeks to show any effects, but Starshak started the biologic and a few days later felt differently. “I woke up and my mind felt more focused, sharper. I slept through the night without having to wake up and run to the bathroom,” she recalls. She’d been working at a bike shop, trying to figure out what to do. But soon after she started her new medication, in the fall of 2008, she decided to go for her MBA and was able to begin a program that January.
Biologics work by targeting key proteins that are causing the inflammation in your colon. Infliximab, for instance, is an anti-TNF medication, which means it blocks an inflammatory hormone known as tumor necrosis factor. Still, while they’re effective, they can also suppress your immune system, making you more vulnerable to infections.
The risks didn’t faze Starshak. “Back then, I was so sick that I would have cut my colon out with a spoon, if I thought that might work,” she says.
Getting to Remission
Starshak was lucky: With the help of her meds, for the past 12 years she’s been relatively symptom-free (though it’s always in the back of her mind that they might stop working one day).
But that’s not true for everyone. “Everybody’s a little bit different. They might respond very well to an anti-TNF drug, but then find that it stops working over time and their chemical pathway has somehow shifted. Then we shift drugs to treat that aspect of their disease,” explains Dr. Siegel. For instance, a doctor might switch you to a drug that blocks the inflammatory protein known as IL-12/23, such as ustekinumab.
“Different chemical pathways might be more effective for different patients. So, although we’re getting closer to being able to predict which drugs work in which patients, we’re not quite there yet to be able to personalize which biologic drug will work for an individual patient,” he adds.
It is possible that our gut microbiome—meaning, all of the bacteria that live in our bowels—might be one reason why these drugs work for some and not others. Another: “It might also be that our immune systems are pretty smart. And when we’re trying to outsmart our immune system by giving drugs to block certain chemical pathways, our system is probably trying to fight back and find other ways around it,” Dr. Siegel notes.
“Our job working with the patient to try to really stay in front of the disease and not always chase it,” says Dr. Siegel. The goal is a steroid-free remission. “Once there, then it’s easier to keep them there by really staying on top of their medications, making sure their medication doses are optimized, and making sure that their bowel heals and the colonoscopy looks as close to normal as possible. We’re much more proactive than we used to be,” he adds.
Starshak’s doctors have decreased the intervals between doses because they found some inflammation in her colon. “I don’t have a lot of bad days,” she says now. “And they’re usually not really true flares, just little spike on the radar. What I typically feel is an increase in abdominal/gut pain and that ‘gotta go’ feeling. My bowel movements get a little more liquidy, and maybe I’ll have three or four in a day,” Starshak says.
Anything can set off these changes. “Sometimes it’s stress, or it’s the end of my medication cycle, or it’s during my menstrual cycle—this is so common, and it’s not talked about much. Sometimes it’s out of the blue—there’s always unpredictability with UC,” she explains.
“In terms of severity, it’s barely even on the radar compared to how I was when I was sick,” she says. Her life now is the opposite of what it was back during her college days. She works for a marketing agency in Milwaukee and she’s running again—even completing two marathons—plus cycling and cross-country skiing, too. She volunteers at the Crohn’s & Colitis Foundation’s Camp Oasis, a sleep-away summer camp for kids with UC and Crohn’s disease.
She also has a partner. One thing that made him unlike the other guys she’d tried to date: “There was no sense of pity, no disgust. He has this very straightforward approach that made me feel like, for the first time since I had been diagnosed, it was okay just to be me,” she explains.
Which makes her feel grateful—for him, of course, but also for all she’s learned. Her advice to others with UC? “Find people who know what you’re going through. To me, it’s as necessary as good medical care is. The first time that you talk to somebody and see the understanding in their eyes without having to be embarrassed, it’s an emotional weight lifted. Every single patient should find another person and a community of people,” she says.
There’s also so much hope in 2021. Today “a sustained or durable remission is a more likely outcome,” says Dr. Siegel. “Things are changing so quickly in many exciting ways.” There are so many targeted therapies in clinical trials that, he adds that “it’s very unlikely medications we’re using now will be the same medications we use in 10 or 20 years.”
- UC Statistics: American College of Rheumatology. (2019). “The US Prevalence of Inflammatory Bowel Disease and Associated Axial Pain: Data from the National Health & Nutrition Examination Survey (NHANES).” acrabstracts.org/abstract/the-us-prevalence-of-inflammatory-bowel-disease-and-associated-axial-pain-data-from-the-national-health-nutrition-examination-survey-nhanes/
- UC and Biologics: Gut and Liver. (2015). “Current and Emerging Biologics for Ulcerative Colitis.” ncbi.nlm.nih.gov/pmc/articles/PMC4282853/
- Anti-TNF Agents and IBD: Massachusetts General Hospital. (2019). “Anti-TNF agents.” massgeneral.org/children/inflammatory-bowel-disease/antitnf-agents