I’m a GI Doc. Here’s What I Tell My Patients About What to Expect With Severe UC

Written by Rachel Reiff Ellis
Medically Reviewed by Poonam Sachdev, MD on February 25, 2026

What does it really mean to have severe ulcerative colitis? How treatable is it, and what can you expect for the future? Here to share experience and insight into severe UC management is Greg Cohen, MD, gastroenterologist at Northwestern Medicine and clinical associate professor at Northwestern Feinberg School of Medicine in Chicago, Illinois.

I’ve been a general gastroenterologist for over 20 years. I specialize in inflammatory bowel disease (IBD), meaning Crohn’s disease and ulcerative colitis (UC). That means I see more people with IBD than most general gastroenterologists. I would say 25%-30% of my practice is IBD, and the rest is general gastrointestinal (GI) care. Among those people, only a minority have what we consider severe UC. But remember, severity can also change over time. You can start with mild UC, but have a severe flare down the road at some point that requires more serious action.

The way I explain UC is that it’s a lot like having a rash, such as eczema or psoriasis, except the rash is on the surface of your colon. And instead of being itchy and painful, like a rash on the skin, inflammation on the surface of the colon causes diarrhea, urgency, and bleeding. Like a rash, UC can flare up and settle down. The flares are what cause the symptoms you get from the condition. Severe UC is defined clinically by symptoms such as more than six loose stools a day, waking at night to have diarrhea, anemia, or higher levels of inflammation markers. The most precise way we define it is based on what we see on colonoscopy — how much of the colon is inflamed and how bad that inflammation looks under the microscope.

 

If you start off with severe UC at the time of your initial diagnosis, you need to take action quickly. People who are diagnosed right off the bat with severe UC are at higher risk of continuing to have severe disease if they don’t get effective treatment. So you don’t want to waste any time — you want to get started on one of the more advanced medicines that are highly effective right from the beginning, rather than trying less potent treatments first. 

One of my biggest priorities is figuring out what medicine to start someone on. For severe UC, that usually means using advanced therapies, such as biologics or small-molecule drugs, as first-line treatment. You really have to be ready to start one of these drugs and continue it indefinitely. In some cases, I might start someone briefly on a less potent medication, not because it’s ideal, but to help them psychologically adjust to the diagnosis and recognize that they need an advanced therapy.

 

Surgery is not common, but there are a few scenarios where it becomes necessary. One is an acute, life-threatening flare that turns into a condition called fulminant colitis. In those cases, we have to remove the colon. But in my over 20 years of practice, I could count on one hand the number of cases like that I’ve seen. Another scenario for surgery is ongoing severe UC that doesn’t respond to any medication. There’s also a risk that long-standing UC can lead to colon cancer that requires surgery. Thanks to modern treatments and regular checkups, it’s pretty unusual today for someone to need surgery for these reasons.

Surgery definitely changes your life. I try to frame surgery as trading a worse problem for a less bad problem — rather than unpredictable, uncontrolled severe UC, you get a very controlled, predictable situation you can learn to live with. After colon removal, patients may have an ileal pouch allowing bowel movements through the anus, or an ileostomy with a bag. With a pouch, you’re unlikely to have a solid stool, and you’re probably going to go six to eight times a day. There may be three to six months of difficult adjustments, but after that, hopefully decades of a happy, productive life.

There isn’t strong evidence that diet or lifestyle changes are highly effective for ulcerative colitis. There is some evidence that being physically active, maintaining a normal body weight, and eating a healthy diet may help. Avoiding ultraprocessed foods is a good rule — one simple way to follow that is to avoid foods that come in a package. Reducing how much red meat you eat and following a Mediterranean diet fit the profile of a diet that’s generally good for UC.

But there’s no diet that has ever been shown to work as well as medication for UC. I try to make it clear that restrictive diets can create the illusion of controlling symptoms. It’s similar to eating bland food when you have traveler’s diarrhea; it might reduce symptoms, but it doesn’t cure the infection. With a restrictive diet, you can control some amount of GI symptoms, but if you’re having to limit yourself that much, it’s a sign you should talk to your doctor about controlling your UC better. One of your main jobs as a patient is to be honest about how you’re feeling, because if you don’t tell me it’s not going well, I can’t help you. It’s always better to address these things sooner rather than after months of ongoing symptoms.

The goal is complete control of ulcerative colitis on your current medicine: minimal or no symptoms and minimal or no inflammation detectable through stool tests, blood tests, or colonoscopy. If there’s just a little mild breakthrough, that doesn’t always mean you have to change medicines. But anything more than that, you should really be thinking about stepping up treatment. Your baseline should be that UC isn’t interfering with your life. And if your gastroenterologist tells you that you should just learn to live with ongoing significant symptoms and adjust your life around them, you should definitely get a second opinion.

When I was in GI fellowship, the very first advanced medicine for UC came online, and ever since then, there’s been an explosion of new options. Today, it’s really unusual for a patient with UC not to be able to find a medicine that gives them their life back. We don’t yet have a perfect test to predict which drug will work best for which patient, so sometimes we might not get it right the first time. But with good communication and persistence, you will find the right medicine and get to where you need to be almost certainly. And these advanced medicines turn out to be remarkably safer and more effective than anyone anticipated years ago.

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