Ulcerative colitis (UC) is an unpredictable condition. Even when you do everything right by taking your medication as prescribed, keeping your doctor's appointments, and making lifestyle changes, symptoms may return without warning.
These can be some of the lowest moments with UC. Just when you settle into remission and begin to feel better, resuming a normal routine, symptoms can suddenly return, bringing back the bleeding, urgency, and fatigue. Although flare-ups are common with the disease, they can be frustrating and confusing.
In the stories ahead, people with ulcerative colitis share their lowest points and what helped them move forward.
A Year of Isolation
Doctors diagnosed Liam Robertson, an oil rig technician and patient advocate from Aberdeen, Scotland, with ulcerative colitis in 2013, three years after his symptoms began. At first, multiple doctors told him nothing was wrong or blamed his symptoms, like constant bleeding, on other illnesses. But a colonoscopy finally revealed severe inflammation and ulcers.
Robertson cycled through medications and eventually reached remission for six years. But after tapering off treatment, he had what he describes as the worst flare of his life – a 14-month period marked by serious health problems, including emergency surgery, that nearly cost him his life.
"That was definitely the lowest point in my life, because I just felt so powerless," he says. "I had a will. I was planning the songs for my funeral because I genuinely believed that was it. I thought I was going to die."
The flare also confined Robertson to his home for nearly a year, depriving him of work and a social life. He sometimes slept on the toilet due to constant bleeding. Beyond the physical effects, the flare impacted him emotionally. He felt isolated and suicidal at times. "At times, I just thought, what's the point?"
Medical treatment eventually saved his life, stopping the bleeding and bringing his condition under control. But connection helped steady his mind. Through an online inflammatory bowel disease (IBD) community, Robertson found people who understood what he was going through in a way even close friends and family could not. Sharing his experience and listening to others became a kind of two-way therapy.
"When you speak to people online, they get it. You suddenly feel less alone and less isolated," Robertson says.
Over time, he began to see his illness differently, as something that deepened his empathy and sharpened his perspective on other people's struggles. His message to people at their lowest point with UC: "There's always light at the end of the tunnel."
Losing Control in Public
Victoria Tyler, a social media influencer and IBD and ostomy advocate from Fort Worth, Texas, first noticed blood in her stool as a teenager. But for the next five years, doctors dismissed her symptoms as other minor health issues. One doctor even told her she couldn't have ulcerative colitis or Crohn's disease because she's not a White man.
After becoming dangerously ill and losing a significant amount of weight in just one week, she checked into the hospital and finally received a diagnosis of severe ulcerative colitis. For more than a decade, she tried different medications, but none worked. Eventually, in 2021, she had surgery to remove her colon.
Tyler says her illness has been filled with many low and painful moments, from financial stress to relationship strain. "It felt like the entire journey was just a valley, and I didn't feel any relief." One especially difficult experience was losing control of her bowels in public.
"Standing in line with six other women and having an accident – blood everywhere, stool everywhere, running down my legs – and still trying to find some dignity."
Even after surgery improved her physical health, Tyler faced new challenges around body image, stigma, and adjusting to life with an ostomy – an opening in the belly area that allows waste to leave the body and collect in a pouch worn outside the body. UC has also shaped her mental health. She's struggled with anxiety, depression, isolation, and suicidal thoughts.
Several things have helped Tyler endure the lowest points of her illness. Therapy has given her the tools to understand and process difficult emotions. She also relies on the support of the people closest to her, especially her mother and husband, who give her the space to express frustration, fear, and anger without judgment. Being a mother herself became another source of motivation. Wanting to see who her children will become and to be there for them in the future have kept her moving forward. Above all, Tyler learned to focus on getting through one day at a time. "If you can make it through this day, you'll never have to do it again."
37 Days in the Hospital
Abigail VanHoose, a chef and patient advocate from Concord, North Carolina, has lived with UC since 2014. What she thought was abdominal pain and bleeding from a previous car crash turned out to be ulcerative colitis, as revealed by a colonoscopy.
For several years, she managed her condition with mesalamine and steroid treatments. But in 2019, the medication stopped working, and she began having severe flares.
VanHoose's lowest point with UC was when she spent more than a month in the hospital. She needed several blood transfusions and faced the possibility of emergency surgery to remove her colon and spend the rest of her life with an ostomy.
"At certain points during that hospitalization, we weren't really sure that I was going to make it," she says. "I'm in my late 20s, and to have a medical device for the rest of my life was really terrifying."
A new gastroenterologist offered a last-chance medication trial. Within a week after VanHoose started the drug, her symptoms began to improve, and she avoided surgery. The ordeal impacted her both physically and emotionally. She had trauma, lost a lot of weight and her hair, and needed physical therapy to walk again.
Many sources of support helped VanHoose get through that difficult period. Her husband and father were by her side throughout her hospital stay, bringing her food she could tolerate and spending long days with her to help her feel less alone. After she was discharged, she worked with a GI-focused trauma therapist to process the medical trauma of the experience. "That was tremendously helpful," she says.
VanHoose also built daily habits to support her mental health, including meditation, gratitude journaling, and practicing qi gong, a gentle movement and breathing practice that helps manage stress. These routines became an important part of her recovery and remain part of her life today.
Today, she tries to remember that nothing stays the same for long with ulcerative colitis. "If things are hard," she says, "wait – they will change."
Where to Find Support
Having ulcerative colitis means living with uncertainty, and the emotional toll can be just as heavy as the physical symptoms. If you're in a low place right now, it's important to know that support is available.
Start with your doctor. If your treatment isn't working or side effects feel out of your control, speak up. You may need medication adjustments, like combination therapy or switching to a different drug, before finding the right fit. If anxiety or depression are creeping in, think about getting mental health support.
You can also connect with organizations that offer education and community. IBD-focused organizations such as the Crohn's & Colitis Foundation, Girls With Guts, and Color of Gastrointestinal Illnesses provide support groups and educational events. Online communities and moderated forums can help you find people who understand the day-to-day challenges of UC. If you’re in the U.S. and are having thoughts of self-harm or suicide, you can call or text 988 to reach the Suicide & Crisis Lifeline.
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