How to Navigate the Grief That Can Come With an Ulcerative Colitis Diagnosis

An ulcerative colitis (UC) diagnosis can change more than just your physical health. It can shift how you see your body, your routines, and even your future.

For Christie Chaump, who was diagnosed after five months of symptoms, the news of a UC diagnosis brought on mixed emotions. “At that moment, I was relieved that I could blame my symptoms on something. Then when reality started to sink in, it created more questions than answers,” she says.

As she began to process what the diagnosis meant, it reshaped how she envisioned her life. “Having just turned 21, I was bummed that I couldn't be like my friends. It forced me to grow up quickly, and I felt like the young adult life I pictured for myself no longer existed,” she says.

Chaump’s feelings of grief and uncertainty aren’t uncommon. While grief and loss may not be discussed as openly as physical symptoms like pain or urgency, they’re a common and very real part of adjusting to life with a chronic condition like UC.

That grief can manifest in many different ways, including sadness, anger, numbness, shame, or overwhelm, says Christina Gentile, PsyD, a clinical health psychologist who is board-certified by the American Board of Professional Psychology and specializes in digestive diseases and the brain-gut connection at UCLA Health in Los Angeles.

“For some people, an IBD diagnosis can bring relief because it finally provides answers, but it can evoke grief because it makes the reality feel more official. Those responses can coexist,” Dr. Gentile says. “For others, the diagnosis may feel frightening or destabilizing from the outset, especially when it happens in the middle of severe symptoms.”

Grief can stem from loss of the small things we take for granted every day, such as eating our favorite cuisine or going for a daily hike in the woods without symptoms like pain or urgency. But it also involves big changes like ambiguity about the future, says Stephen Lupe, PsyD, a clinical health psychologist who specializes in gastrointestinal disorders and the director of behavioral medicine in the department of gastroenterology, hepatology, and nutrition at Cleveland Clinic in Ohio.

“People aren’t just reacting to the diagnosis itself. They’re reacting to everything that comes with it,” he says. “And a lot of the distress comes from not knowing how things are going to go, how your body will respond, or what the future looks like.”

If you’re feeling overwhelmed with emotion from your UC diagnosis, there are a number of strategies that can help you cope.

1. Allow Yourself to Grieve

One of the most important things to remember after a UC diagnosis is that grief is a natural response to change and loss.

“The biggest [tip] is to know it is normal to grieve. When we try not to have that reaction, it can actually make it worse,” Lupe says.

Rather than pushing those feelings away, give yourself permission to name them — whether that’s sadness, fear, or anger — and let them exist. Gentile says that simply being able to recognize what you’re feeling can make the experience less overwhelming.

It also takes time. A UC diagnosis isn’t something to rush through. “In clinical practice, patients often do better when emotional adjustment is allowed to unfold over time rather than feeling pressured to process everything at once,” Gentile says.

2. Learn About How to Manage Ulcerative Colitis

Understanding your condition and how to care for yourself can make a diagnosis feel less intimidating, Lupe says. That might include learning about treatments, triggers, and how lifestyle factors like stress, diet, and sleep can affect symptoms.

The learning curve can be steep at first, especially for those who are unfamiliar with IBD. “A lot of people have never even heard of IBD, ulcerative colitis, or Crohn’s disease. We have to do some education around what this means for them,” Lupe says.

Practical tools can also make daily life easier. Lupe often encourages his patients to connect with organizations like the Crohn's & Colitis Foundation, which offers resources such as the “We Can’t Wait” app, a tool that helps people quickly find nearby bathrooms and provides physical “I Can’t Wait” cards to use in emergencies.

Gentile says that part of this process includes learning how to manage the emotional side of your diagnosis, especially if you encounter grief and anxiety that show up as panic, tension, or a revved-up nervous system. This could look like picking up strategies to calm the mind and body, such as box breathing, grounding, or gentle movement like going for a walk to clear the mind, she says.

“Movement can help regulate the nervous system, discharge tension, and create a little more space around intense emotion,” she says.

3. Focus on What You Can Control

A UC diagnosis can quickly pull your mind to the future: what will change, what might go wrong, or what you’ll have to give up.

But bringing your attention back to the here and now can create a sense of stability. “I encourage patients to focus on what remains within their control: preparing for appointments, learning from reliable sources, following treatment recommendations, building supportive routines, and noticing what helps them feel more steady physically and emotionally,” Gentile says.

She also recommends writing down questions and concerns as they come up and bringing them to appointments rather than letting thoughts spiral.

For Chaump, this mindset kept her thoughts grounded. “I remind myself to focus on what I can control, and that is my attitude,” she says. “I focus on all the things I can accomplish even with this debilitating disease.”

Over time, these small shifts can help create a sense of control even when the bigger picture still feels uncertain.

4. Lean on Your Support Network

Living with UC can feel isolating, especially during flares or when symptoms are unpredictable and difficult to talk about.

Chaump says building a sense of community was one of the most helpful steps she took and encourages others to do the same. After receiving her diagnosis, she created a local support group in the Reno, Nevada, area where she lives.

“I have people to talk to when I have questions about a procedure, a certain medication, or just when I'm feeling down on myself,” she says. “Having a disease like this can be extremely isolating, so having other people to talk to about the ebbs and flows reminds us that we are not alone in this journey.”

Support can also come from loved ones. Lupe says partners, family, and friends can play an important role, whether that’s joining appointments, helping with practical needs, or simply listening.

People who understand, or are willing to learn, can make the day-to-day feel more manageable and a lot less lonely.

5. Know That UC Doesn’t Have to Be Your Entire Identity

A UC diagnosis can shift how you see yourself, but it doesn’t have to become the only lens you view yourself through.

“I encourage patients to remember that although IBD becomes part of their life, it does not have to become the definition of who they are,” Gentile says.

Lupe says it can help to zoom out and remember the broader picture of your life — your roles, relationships, interests, and the things that bring meaning. “It’s just one aspect of who you are,” he says.

For some people, connecting with the IBD community or doing advocacy work can bring meaning and purpose. For others, it may feel like too much, Lupe says. There’s no single way this needs to look.

It’s a matter of finding a balance that feels right. With some adjustments, you should be able to maintain what’s most important to you.

“[Life] may not look exactly the way it used to, especially early on or during more difficult periods, but the work is often in finding feasible ways to reconnect with your values, even in small steps,” Gentile says.

6. Consider Professional Support if You Need It

If your diagnosis or symptoms are starting to affect your mood and daily functioning, it may be helpful to connect with a GI psychologist, a mental health professional who specializes in treating individuals with digestive conditions like UC.

“Treatment is not only about navigating disease activity,” Gentile says. “The value of GI psychology extends beyond emotional support. It’s targeted intervention around symptom-related fear, stress reactivity, avoidance, and the day-to-day functioning that digestive disease can disrupt.”

The goal isn’t just to feel better emotionally. It’s to help you regain a sense of control, confidence, and the ability to live your life more fully with UC.

7. Understand That Grief Will Come and Go

Grief isn’t linear. It can resurface during flares, treatment changes, or moments when compromises need to be made to manage the chronic disease, Gentile says. Feeling emotional weeks, months, or even years later doesn’t mean you’re coping poorly.

Sometimes you may not even acknowledge your grief until after going through the motions of treatment. “Some patients become intensely practical at first and focus on logistics, treatment, and symptom monitoring. Others notice fear, grief, shame, or anger surfacing later once the initial crisis has passed,” Gentile says.

For Chaump, the process is ongoing. “My main focus became healing. So I went through the stages of grief and continue to do so even years later as I prepare to enter my thirties with the hope of having healthy children,” she says.

Expect a nonlinear journey to acceptance — and that acceptance won’t be there every day, Lupe says. “Some days you can be very accepting … and other days, not accepting at all,” he says. “It will change from day to day.”

• An ulcerative colitis (UC) diagnosis can trigger feelings of grief and loss as you process changes to your identity, independence, and the future you once envisioned.
• Coping with a UC diagnosis often involves focusing on what you can control and gradually learning how to manage the condition so it feels less overwhelming.
• Building a strong support system — from peers with UC and loved ones to GI psychologists — can help you navigate both the emotional and practical challenges of living with UC.