4 People share what life is like in ulcerative colitis remission
For some, recovery is possible.
By Korin Miller
Most people use medications to stop inflammation in the large intestine. (Sometimes, people have surgery to remove their colon and rectum when medications don’t work.) Reducing your symptoms and achieving ulcerative colitis remission isn’t always easy, and some people need to go through several prescriptions before they find what works for them.
Below, we asked people who have achieved remission from ulcerative colitis how they did it—and how their lives have changed.
1. “I’m so grateful I can pretty much do anything or go anywhere now.”
For Laura Scaviola, 33, ulcerative colitis symptoms came on suddenly in 2013 at age 25. “I experienced a sudden onset of severe symptoms that included bloody diarrhea 10 to 20 times per day with weight loss and fatigue,” she tells SELF. Scaviola could barely eat or drink for days following these episodes because her pain was so bad. After going to the emergency room for severe dehydration, Scaviola was referred to a gastroenterologist and began treatment.
Scaviola went through six medication attempts before she found one that helped her achieve remission in 2018—and maintain it. Scaviola says that her social life and personal relationships have improved since remission. “The biggest difference in my life with remission is being able to schedule activities with friends and know that I’ll be able to follow through on those plans,” she says. “I’m so grateful I can pretty much do anything or go anywhere now,” she says. Still, Scaviola says it’s hard not to let her past experiences factor into the decisions she makes today.
“Despite the freedom of remission, I still live cautiously with ulcerative colitis on my mind.” One example, she says, is how she picked out her wedding dress. “I chose a simple dress to put on or pull up quickly in case I needed to use the bathroom a lot on my wedding day,” she says. “I still let my disease dictate some of my decisions. It’s hard not to.” —Lauren Scaviola
2. “I remember experiencing pure joy that I wasn’t living with pain and fatigue.”
Megan Starshak, 37, went into remission in 2008 “after six years of just about constant, debilitating symptoms,” she tells SELF. Starshak achieved remission after changing doctors to see a physician experimenting with new treatments at a major medical center in her city.
Starshak says her life “changed incredibly—a true 180 degrees” after achieving remission. “It was beyond what I can describe, but I remember experiencing pure joy that I wasn’t living with pain and fatigue,” she says. She’s been in remission for more than a decade and has been able to work toward some very big life goals. “I earned my MBA and have been growing my career in brand strategy—things that take a true dedication of time, mental energy, and networking,” she says. Before her remission, Starshak says fatigue severely impacted what she was able to do. “Now I can spend extra time learning and working on personal and professional growth. It’s really just that redirection of energy because I’m not zapped most of the time,” she says.
For the first few years following her remission, Starshak says she tried to make up for missed experiences by saying yes to every opportunity. Even seemingly ordinary things felt really significant to her, like “being able to crash on a friend’s couch and not worrying about taking up their bathroom,” she says.
Starshak has frequent follow-ups to maintain her ulcerative colitis remission. “My last two scopes have shown some increasing inflammation, even though I’m not experiencing symptoms,” she says. “My medical team has been great in staying ahead of things, upping my treatment before I had a flare. Even in remission, we can never stop treating the disease.” —Megan Starshak
3. “Now, I can go about my day normally without many preparations.”
Rosanne Mottola, 36, dealt with excruciating pain when she was diagnosed with ulcerative colitis while in college in 2006. “I was living with debilitating gut pain and having urgent and severe bowel movements 20 times a day,” she tells SELF. “Most of the time there was blood present.”
Mottola was officially diagnosed with ulcerative colitis a few months before she graduated from college. “I had to arrange for several of my finals to be given virtually since I couldn’t sit in a classroom for an hour to take my exams,” she says. “In addition to the gut symptoms, I was exhausted and anxious.”
Mottola learned to manage her condition by taking extreme measures to try to avoid symptoms when she needed to be away from a bathroom. “Anytime I had to go anywhere, I would wake up hours before I had to leave just to ‘settle my stomach,’” she says. “Often, prior to an event—such as my wedding—I would load up on Imodium A-D to prevent having to go to the bathroom.”
In 2010, Mottola’s doctors discussed the possibility of a total colectomy, a surgical procedure to remove her colon. “As a last-ditch effort, my doctor tried a new mix of medications,” she says. “That mix did the trick in greatly reducing my symptoms prior to my wedding in 2011.” In 2014, she achieved full remission and it ended up lasting. “Remission is life changing. Now, I can go about my day normally without many preparations. If I have to hop in the car unexpectedly or if I get stuck in traffic, there isn’t the panic that I felt in the past,” she says.
When I was first diagnosed and was sharing my symptoms with my doctor, he told me that I had a mild case and I just had to learn how to live with it. Shortly thereafter, I had one of the worst flares of my life,” she says. “That doctor wasn’t cutting it, and I found a new doctor who told me we’d try everything to give me a quality of life that was worth living.” Because of her experience, Mottola says, “I always tell IBD newbies to never, ever settle. If there’s something that doesn’t feel right, you need to speak up.”
4. “I remembered what it was to have a life again.”
Mary Elizabeth Ulliman, 33, was diagnosed with ulcerative colitis in 2011 and says she was fatigued and made constant trips to the bathroom. But in 2015, Ulliman started taking two new medications that greatly improved her symptoms.
“After a few months, I started noticing differences,” she tells SELF. “By 2016 my quality of life had done a complete 180 from where I’d been since 2011,” she says. “In the thick of my ulcerative colitis journey, I genuinely forgot how much fun life could be. I was slogging through, day after day, thinking that feeling miserable was how it was going to be forever, willing myself to make it through work days so I wouldn’t lose my job and insurance.”
Remission, she says, allowed her to live fully again. “Suddenly, life wasn’t made up of sleeping, bathroom trips, forcing myself to eat, and willing myself to not fall asleep at my desk at work,” she says. “I had some extra energy. I started—hesitant, at first—to exercise. I could eat food without immediately regretting it afterward. I could have a glass of wine now and again. I had the wherewithal to do activities after work—coaching, going to a happy hour, taking my dog to play. I remembered what it was to have a life again.”
Ulliman wants other ulcerative colitis patients to have hope. “When you’re in the black hole that is trying to find something—anything that will work to control your [ulcerative colitis]—it can be easy to forget how much fun and joy life can bring you,” she says.” —Mary Elizabeth Ulliman
Original article here.