Things no one tells you about life with ulcerative colitis
It’s not just a bad stomachache.
1. The intensity of your symptoms might vary over time.
The most common ulcerative colitis symptoms are diarrhea containing blood or pus and abdominal pain, the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) says. “There’s a lot of cramping,” Cristal Steuer, 38, who was diagnosed with ulcerative colitis while she was in college, tells SELF. You might also experience things like fatigue, fevers, nausea, unintended weight loss, joint pain, and rashes. Whichever symptoms you do have, they may wax and wane, the NIDDK explains. You may have periods when you’re in remission interspersed with periods when your symptoms are worse. But some people experience constant symptoms from ulcerative colitis.
“I’ve had to increase my tolerance for what is a background level of pain,” Sam, 22, who was diagnosed with ulcerative colitis in the summer of 2019, tells SELF. (Sam has asked to use only her first name in this story.) “I’ll have sharper moments where I can’t function…but for the most part, it’s more like a constant level of chronic pain.”
If pain or other ulcerative colitis symptoms are really interfering with your life, make sure your health care provider knows so that you might be able to tweak your treatment plan if necessary.
2. Fatigue from ulcerative colitis can be brutal.
Exhaustion from ulcerative colitis can be so severe it’s hard to get through day-to-day life. For Sam, fatigue was one of the first signs that something was wrong. “I’m usually a pretty energetic person,” she says. “I like running every day, things like that. And I just couldn’t do it anymore.”
After developing ulcerative colitis, you might have to be more careful than you’re used to about how you use your energy. “Some days I’m just hit with a truck of fatigue,” Skomski says. “So I always give myself an out. If I have plans with friends or we’re going out of town, I’ll tell the other people, ‘I might not feel good and we might have to reschedule.’”
Sam has had to have similarly frank conversations about the fact that her energy can take a major dip sometimes. “I’ve had to teach everyone around me that it doesn’t mean I’m mad at them, it doesn’t mean I’m not happy,” she says. “It’s just that I have a very concrete amount of energy that day.”
She points to Spoon Theory, an analogy devised by Christine Miserandino to explain how chronic illnesses or disabilities can affect people’s energy levels. Imagine that people without chronic illnesses or disabilities start the day with an infinite amount of spoons, representing energy, but people with conditions like ulcerative colitis wake up with a limited number every morning depending on factors like whether they’re having a flare-up. Every task you do that day costs a spoon, which is hard when you’re working with a limited number from the moment you wake up. It’s a tangible explanation of how people with conditions like ulcerative colitis have to carefully prioritize what they put their energy into.
3. Ulcerative colitis can take a toll on your mental health too.
Being told you have a chronic illness can feel like someone has just rerouted the course of your whole life. “I went through my own acceptance process,” Skomski says. “I definitely went through a period of questioning if my life would ever be normal.” With time, processing the reality of having ulcerative colitis became easier. “I had to learn there’s nothing wrong with me; it’s just part of who I am,” Skomski says. “You have to do a lot of mental work to flip the way you perceive it because otherwise it can really eat away at you.”
Dealing with the symptoms can also be mentally and emotionally taxing. “The psychological side of the pain is a lot worse than the actual physical sensation,” Sam says. “It’s when you feel like it’s never going to end, or you’re going to be stuck in that high level of pain for a long period of time, or that no one gets how hard it is to deal with it.” This has led to constant vigilance about her health. “It’s very hard for me to not be closely monitoring my body 24/7,” Sam says. “The catch-22 is that stress is definitely a trigger for me.”
Sam has started doing Krav Maga, a self-defense fighting system, as a way of connecting with the strength her body holds. “In Krav Maga, you will get hit in the face if you aren’t perfectly coordinated and defending correctly, so it forces you to reconnect with your body,” she says. “It’s helped me appreciate what my body’s doing for me, rather than just seeing it as an enemy.” She also frequently meditates and does yoga.
Finally getting a diagnosis after years of pain and uncertainty also forced Skomski to put her mental health first. “I’ve had really dark days,” she says. “I’ve really had to deal with the way that I talk to myself and the way that I prioritize my mental health. For so long I was so focused on my physical health that I almost didn’t even recognize that I was not addressing my mental health. It took a physical disease to make me really treasure and take care of my mental health just as much as my physical health.” For Skomski, that means going to therapy every other week, along with journaling, meditating, and doing yoga.
Ultimately, everyone with ulcerative colitis will have to learn their own ways of coming to terms with the mental load it can cause. “There is no cure for this disease,” Skomski says. “The medication that I’m on could work forever, or one day it could stop working and I could have a flare-up and that could lead to surgery. There are a lot of bridges ahead of me and I don’t know when or if I’m going to cross them. I’ve learned to be at peace with that.”
4. Figuring out which foods trigger flare-ups will involve some trial and error.
As the NIDDK explains, although ulcerative colitis isn’t caused by diet or nutrition, certain foods can trigger the symptoms or make them worse in some people. The tricky part is figuring out which ones.
Common ulcerative colitis triggers include dairy, high-fiber foods like fruit, vegetables, and whole grains, spicy foods, alcohol, and caffeine, according to the Mayo Clinic. That said, it’s really individual. Sam has always loved food and says that when it comes to what she can eat now, “I have not figured that aspect out.” And it’s not for lack of trying. “I feel like I’ve done everything!” she tells SELF, explaining that she tries to avoid various food groups like dairy that can trigger symptoms. “It doesn’t mean I don’t ever eat them, but I try to avoid them,” she says. “I’m definitely still experimenting.”
Stacey Bader Curry, 48, was diagnosed with ulcerative colitis in March 2020 and is concerned about giving up foods she loves, as well as alcohol and coffee. “I’m trying to focus on what I can eat and not what I can’t eat,” she says.
To figure out whether certain foods might be triggering your symptoms, the NIDDK recommends keeping a food diary where you record everything you eat and any flare-ups to help you work out what your dietary triggers could be.
5. Not everyone will understand the intensity of your disease.
Although ulcerative colitis can affect many aspects of your physical health, it’s often considered an invisible illness. Depending on the severity of symptoms on a given day, people with the condition can often still move around without any obvious signs that they’re in pain or discomfort. “It puts a lot of pressure on your shoulders when you are chronically ill and it’s not visible, because you have to explain yourself time and time again,” Skomski says. And since people between the ages of 15 and 30 are one of the more at-risk age groups for developing ulcerative colitis, people with the condition are sometimes perceived as “too young” to be sick.
People may also have a hard time wrapping their head around the pretty major lifestyle adjustments you might have to make with ulcerative colitis. “My lifestyle’s not like a typical 20-something,” Sam says. “I think a lot of my friends see this as the intense period of their life: staying up all night, going to concerts that go until the middle of the night, going to bars, things like that. And I just can’t.”
Sadly, some people you thought were friends won’t be able to handle the impact your condition has on your life. “I’ve lost friends that didn’t understand it or didn’t feel like they could meet me where I was at,” Skomski says, “and I had to be okay with that, because this is a huge part of my life.” The silver lining is that you can be pretty sure the people who do stay around are the real deal. “If you can stick through seeing me nearly die and then live with chronic illness every day because you really love me, I know that we’ll be friends forever,” Skomski says.