When you live with ulcerative colitis (UC), one of the hardest things to face is that flares can happen even when you’re doing everything “right.” You take your medicine as prescribed, avoid known trigger foods, manage stress, and keep all of your doctor’s appointments. Still, symptoms can worsen quickly, sometimes without a clear reason.
Doctors diagnosed Melissa Dixon, a blogger from Cedar Rapids, Iowa, with UC in 2014 after years of ongoing stomach problems and extreme tiredness. Although medication, a restrictive diet, and following medical advice helped manage some symptoms, her condition eventually worsened. She had surgery to remove her colon and now lives with a permanent ostomy. Ostomy is a procedure that creates an opening in the abdomen, allowing waste to leave the body and collect in a pouch worn outside the body.
“It was very frustrating, because I felt like I was doing all the right things. I desperately didn’t want to have the surgery,” Dixon says.
UC doesn’t always follow a predictable pattern. Triggers can vary from person to person, and even within the same person, what once caused a flare may change the next time. This uncertainty can make life feel unstable. But understanding this can be an important first step toward easing the emotional burden that comes with feeling out of control.
What’s Going Wrong: Your Bowel Movements Aren’t Slowing Down
One sign that a flare may be building is when bowel movements or diarrhea happen more often and are harder to control. You might feel the urge to visit the bathroom more often, and your stools can become looser, more painful, or streaked with blood or mucus.
When your colon is inflamed, it gets in the way of your bowel’s ability to absorb water and control movement. The result is faster transit time, meaning stool moves through the colon too quickly to firm up. Inflamed tissue also becomes more sensitive, triggering the urge to use the bathroom, even when your bowels are mostly clear.
Changes in bowel movements, frequency, or urgency don’t always mean you’ve done something wrong in treating your UC. These changes can happen even if your medication hasn’t changed and you’ve avoided your triggers. In some cases, inflammation builds up before symptoms appear. Spotting these changes early and knowing that they reflect the disease, not your personal failure, can help you respond quickly with support from your care team.
Anshuman Chawla, MD, is a gastroenterologist with over 25 years of experience in treating UC and other inflammatory bowel diseases. He emphasizes this message for people living with severe UC — flare-ups can happen even when you are following your treatment plan correctly.
Chawla compares UC to other long-term conditions, such as high blood pressure. “We have to remind them that it’s a chronic condition; since you have a chronic condition, you’ll need a chronic medication.”
What You’ve Probably Already Tried
If you’ve been living with severe UC for a while, you may have tried many of the go-to approaches to control your symptoms and prevent flares. These strategies are often helpful but don’t always fully stop flares.
Medication
People with UC often use medications to calm inflammation and keep the disease at bay. These can include anti-inflammatory medicines such as corticosteroids and mesalamine during flares. And for more serious or treatment-resistant cases, they may include medicines that suppress your immune system and biologics that target specific immune pathways.
Over the course of his career, Chawla has witnessed an evolution in how UC is treated — from the early days of the first biologic therapies to today’s expanding range of targeted medications. While you may have tried one drug with limited success, “The good news is, we have other options,” says Chawla, who works with GI Partners of Illinois.
He also reminds people with UC that their current medication may become less effective over time, and they should talk to their doctor if they notice any changes in their symptoms.
Diet changes and avoiding triggers
Almost everyone with UC tries changing what they eat. This can range from cutting back on dairy, limiting high-fiber foods during flares, eating smaller meals more often, or keeping a food journal to track personal triggers.
Lowering stress and making other lifestyle changes
While stress doesn’t cause UC, it can make symptoms worse. Lowering your stress by getting enough quality sleep and exercise, as well as practicing mindfulness techniques, can help lower the number of flares you have and support your overall wellness.
What You May Not Have Tried Yet
When UC symptoms don’t follow a clear pattern, the goal often shifts from total control to being better prepared physically and mentally for change. These approaches don’t replace medical treatment, but they can help you feel more grounded when symptoms shift.
One overlooked step is letting go of self-blame. Ulcerative colitis is an autoimmune condition, meaning the immune system attacks the colon regardless of how “well” you follow your treatment plan. Letting go of the belief that each flare-up has a clear cause can help ease anxiety and the constant need to stay alert.
Planning for uncertainty
Instead of living as if your symptoms will always stay the same, experts suggest planning for changes. This might include flexible work arrangements, backup plans for social events, or keeping flare-day supplies readily available. “You can’t do everything you used to do, and there’s a lot of uncertainty, like always needing to know where a bathroom is," Dixon says.
Dixon notes that stress can come from not knowing what to expect: “You could be feeling great one day, and the next day you feel like you have the flu.” She found that accepting this reality has helped her not to panic when symptoms shift. By expecting change, she regained a sense of control, even when her symptoms weren’t completely under control.
Acting on early warning signs
When having symptoms, you may think it’s best to wait it out, hoping they’ll pass. But Chawla advises the opposite: If something feels off, say so early. If you notice rectal bleeding, more urgency, or symptoms that last more than a few days, call your doctor. Consider these signs useful information rather than a failure. This mindset can help lessen fear and allow you to make changes before symptoms get worse.
Building emotional support that fits your life
Emotional support for UC comes in different forms: formal therapy, inflammatory bowel disease (IBD)-focused groups, and support from family and friends. Dixon finds online support groups more helpful than in-person meetings because they fit her schedule and are available during flare-ups. “At any time in the middle of the night, you can find someone who will offer advice to help you get through it,” she explains.
Over time, those online chats inspired Dixon to start her own blog, Ostomy on the Go, as a way to give back — offering comfort, answering questions, and helping others understand what’s normal when living with UC or an ostomy.
She also says having her husband’s support has been essential. Knowing he is there for her emotionally, helping with daily tasks, and providing financial support has made her feel less afraid of what might happen next. Managing UC is much harder without a strong support system, Dixon says, especially because the disease can interfere with every aspect of your life.
Letting go of the pressure to ‘push through’ symptoms
Symptoms of UC range from frequent bowel movements and blood in your stool to stomach cramping and sudden weight loss. Fatigue is one of the most common symptoms of IBD, affecting up to 80% of people with active disease, and around half of those in remission. Doctors link fatigue in UC to inflammation, anemia, and nutrient deficiencies. This extreme exhaustion is one of Dixon’s most crippling UC symptoms, sometimes causing her to sleep for up to 16 hours a day while still feeling tired. She advises other people with fatigue to listen to their bodies without guilt. “If you need more sleep, take it. Don’t feel bad.”
Staying hopeful
Chawla reminds his patients that UC is far more common than they may realize, and that outcomes today are much better than they were decades ago. Major surgery used to be common, but it is now rarer thanks to advances in treatment. Even people with UC who don’t see improvement with their first treatment often find relief with other options later.
His main advice is clear: Stay in close touch with your doctor, take your medicine as directed, rely on support from others, and keep trying. With the treatments available today, achieving long-term stability is more possible than ever.
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