If you have ulcerative colitis (UC), dealing with its physical symptoms is a lifelong challenge. UC causes inflammation in the lining of the large intestine, often leading to painful sores called ulcers. The result can be constant trips to the bathroom, sharp cramps, and exhaustion.
UC symptoms can range from mild to severe, and you may go long stretches without any symptoms at all. But having a good day or even a good week doesn’t always bring peace of mind. Living with a chronic condition can mean existing in a state of constant vigilance.
Is that cramp the start of a flare-up? What if I can’t find a bathroom in time? What if I have to cancel my plans because I’m simply too exhausted?
For Paulina Joaristi, now 31, being diagnosed with UC in her early twenties came with a unique set of challenges. After receiving her diagnosis, her doctor prescribed mesalazine. She took it as directed, but her symptoms continued to worsen. Over the next six years, she saw doctors in multiple states and in Costa Rica, where she was born. It took six years of trial and error — and dealing with new, painful symptoms — before she eventually found a medication that worked for her.
“Something that was very hard for my mental health was dealing with the guilt…the feeling that I had this disease because I did something wrong: I ate the wrong way, had the wrong work-life balance,” she says. “I had to really work to realize that this is not my fault — that there's absolutely nothing that I could have done differently not to get UC.”
“I was in denial for a long time,” Joaristi says. “But the sooner you’re able to come to terms with having the disease, the sooner you’ll start to feel better.
UC and Your Mental Health
People with inflammatory bowel diseases (IBDs) like UC are twice as likely to experience mental health issues, such as depression or anxiety, during their lifetime.
Having a lifelong condition can stir up lots of different emotions: You may struggle to accept your diagnosis; you may feel frustrated, sad, or scared about managing symptoms or starting new treatments. It’s also common to worry about the future, which can leave you feeling helpless or isolated.
For Joaristi, having UC also meant making lifestyle changes that made socializing more difficult. “I was in college when I was diagnosed. It was a moment where you’re supposed to party, go without sleep and drink, but I wasn’t allowed to do those things,” she says. “My friends were no longer my friends because I wasn’t fun anymore.”
She says one of the hardest things about having UC is that it’s an invisible disease. “It’s not like being in a wheelchair. People look at you and can’t tell that something is wrong, so it’s really hard to understand what that person is going through.”
Megan Walker, MD, a gastroenterologist and assistant professor of clinical medicine at Indiana University School of Medicine, says the uncertainty around UC is often one of the biggest struggles for patients. “A lot of the patients feel like they never know when a flare-up is going to come on,” she says. “It’s common for them not to want to leave the house without knowing where several bathrooms are.” She adds that the unpleasant side effects of some UC medications can be another source of stress. “Patients feel they’re stuck choosing between a lesser of two evils.”
Researchers are still trying to understand all of the ways that UC and mental health are connected, but one possible explanation is something called the gut-brain axis. Your brain and gut are constantly talking to each other through nerve signals, hormones, and other chemical messengers. When your gut is inflamed, the signals that get transmitted may affect your mood.
Stress and UC
Everyone experiences stress. In small doses, it can motivate you to get things done, stay alert, or even feel excited. But too much stress — especially after a major life change like receiving a diagnosis or adjusting to new health challenges — can have the opposite effect.
“Internalizing or compartmentalizing stress in your body can start manifesting in physical ways,” says Walker. In other words, stress worsens symptoms, which can increase stress. Over the long term, this can increase inflammation, disrupt the balance of bacteria in the gut, and weaken your body’s immune response. These changes may lead to flare-ups or make symptoms harder to manage.
Anxiety and UC
It’s normal to feel a bit nervous about things like starting a new treatment or not having easy access to a toilet. You may find yourself worrying about what might happen if symptoms flare up. But if those worries start to interfere with your daily life — making it hard to leave the house, focus, or get through the day — it could be a sign of an anxiety disorder.
You may feel more anxious when your UC symptoms flare up. Anxiety can cause both physical and emotional symptoms, some of which may overlap with your UC symptoms.
These may include:
- A fast or irregular heartbeat
- Feeling lightheaded or dizzy
- Headaches or muscle aches
- Trouble sleeping
- Feeling nervous or restless
- Feeling like you can’t stop worrying
- Trouble concentrating
Get medical attention right away if you feel dizzy or have any changes in your heart rate.
Depression and UC
Many symptoms of UC can affect your mood, leaving you feeling sad, frustrated, or discouraged. But if your low mood lasts weeks or begins to affect your daily life, you may be dealing with depression.
Walker says it can sometimes be hard to tell the difference between feeling low and having a mental health condition. But there are some warning signs to look out for. “If a patient says they’ve lost interest in doing anything, if they aren’t leaving the house period, or if they feel like they don’t want to take care of their health anymore — for example, they don’t want to take their medications — those are red flags.”
Other possible symptoms of depression include:
- Feeling empty or numb
- A sense of hopelessness
- Feeling more tired than usual
- Trouble sleeping or other changes in your sleep patterns, including oversleeping
- Changes in your eating habits, such as eating much more or less than usual
- Trouble concentrating or making decisions
If you have any of these symptoms, talk to your doctor. If you feel that you might harm yourself, call 988 — the Suicide & Crisis Lifeline — or go to the emergency room.
Tips for Managing Your Mental Health
When you’re managing UC, taking care of your mental health might feel like an extra burden. But there are small steps you can take to help support not only your emotional well-being but also your physical health. These include:
Eat healthy foods. Food can be a sensitive subject when you have UC. You may notice that certain foods trigger symptoms, which can change how you think about eating. Some people may start skipping meals, restricting certain foods, or overeating. But food fuels both your body and your brain. When you’re not getting enough nutrients, it can affect your energy, mood, and symptoms.
For Joaristi, figuring out what to eat with UC involved a lot of trial and error at first. She tried special diets and cut out certain foods, but these days she focuses on eating as healthy as she can. “I do love chocolate,” she says. “I just try to make smarter choices. Instead of eating an Oreo, which is junk food, I’m going to have a baked chocolate banana cookie that I made at home or that I bought at a local bakery, instead.” She emphasizes that everybody is different, so what works for her may not work for another person.
Practice good sleep hygiene. Waking up during the night to use the bathroom can make it hard to get a full night’s sleep. Over time, poor sleep can put extra stress on the body and make symptoms harder to manage. Good sleep habits can help. “I had one doctor tell me, ‘I can give you so many medicines, but sleep is the best one’ — he was right,” says Joaristi. “I prioritize sleep, and I learned to say no to things if I’m feeling low energy or I just feel like I have to take some time off.”
For better sleep habits, try going to bed and waking up at the same time each day — even on weekends. It can help build a relaxing bedtime routine. Also, avoid screens an hour before going to sleep.
Exercise regularly. Exercising is one of the best things you can do for your mental health: it can boost your mood, take your mind off worries, improve your sleep, and give you more energy. You don’t need to do intense workouts to see the benefits. Even gentle movement, such as walking or yoga, can help.
Journal. Keeping track of your feelings — whether by writing them down in a journal or using a mental health app with a mood tracker — can help you process emotions and notice patterns over time.
Try relaxation techniques. Breathing exercises, yoga, or meditation are all great ways to calm your mind and lower stress. Even just a few minutes a day can make a difference.
Practice your hobbies. Making time for activities you enjoyed before your UC diagnosis can help you feel more like yourself and bring a sense of normalcy. Whenever possible, try to notice and appreciate moments of joy — they’re a reminder that your life is about more than your UC. “Before being diagnosed, I would never take an afternoon to myself to do something simple like a skincare routine or a hair mask,” says Joaristi. “I didn’t know how to prioritize myself — now, I do.”
Finding Support and Treatment
Even with healthy habits in place, the symptoms of stress, anxiety, or depression can continue to show up. In these cases, therapy, medication, or a combination of both can be helpful. Make sure to talk to your doctor about which approach is best for you.
Therapy. Different kinds of talk therapy can help you manage life with UC. One of the most common is cognitive behavior therapy (CBT). During a session, you speak to a mental health professional about your thoughts and worries. They can help you spot unhelpful patterns in your thinking or behaviour and give you strategies to change them.
Medication. If other treatment options haven’t worked, your doctor may prescribe medication for depression and anxiety. As many as 1 in 3 people with IBD take antidepressants to support their mental health.
Extra support. Having a chronic illness can sometimes make you feel isolated, but you don’t have to manage everything on your own. Reach out to people you trust — friends, family, or your health care team — and consider joining a support group for people with UC so you can connect with others who understand what you’re going through.
For Joaristi, support from family has been important. She says her parents and now-husband have been extremely encouraging. But she also believes it helps to connect with people who truly understand what living with UC is like. “I know it’s hard to connect and say something like, ‘Hey, are you pooping blood? So am I! Let’s be friends,” says Joaristi.
For her, online forums felt a bit awkward and impersonal. Instead, she prefers meeting people through mutual acquaintances. While getting treatment in Costa Rica, where Joaristi’s parents live, she was able to connect with a woman who saw the same doctor. “I would call her when I was extremely sad, and she would do the same…she really helped me.”
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