Can You Really Know What to Expect in the Long Haul?

Ulcerative colitis (UC) is a long-term illness that you’ll likely live with for decades. Most people have mild to moderate symptoms, but they can be unpredictable — flaring and then tapering off. So, what can you expect in the future, and can you better control your symptoms?

Can UC Go Into Remission?

Ulcerative colitis is what experts call a relapsing and remitting disease. This means symptoms come and go over time. There may be months or even years when you won’t have any symptoms at all.

There’s no single definition of what it means to be in remission with UC. Your doctor could say it’s the balance between managing your symptoms and any side effects of treatment. But a better overall quality of life may be what’s most important to you, like enjoying a symptom-free social life.

Depending on how it’s measured, around half of Americans with UC are in remission, says Ugo Iroku, MD, a board-certified gastroenterologist at New York Gastroenterology Associates. The other half have symptoms that range from mild to serious.

In general, there are three types of UC remission:

Clinical remission. This is the most basic type of remission — no belly pain, diarrhea, or blood in your stool. Endoscopic remission. If you’re symptom-free and there’s no inflammation of your bowels, you’re probably in endoscopic remission. Your doctor will look for inflammation during a colonoscopy, an exam that uses a tiny camera attached to a thin, bendable tube. Deep (histological) remission. This is the most robust level of remission. Doctors look for three things: no symptoms, inflammation, or sign of UC at a cellular level under a microscope.

Does Deep Remission Mean I’m Cured?

Right now, the only cure for UC is surgery to remove your colon and rectum. Even when you’re in deep remission, there’s still a chance you’ll have a flare in the future.

Being symptom-free for a long time can give you false confidence that you’re fully healed from UC.

“It’s human nature,” Iroku says. He says being in remission makes it easy to go about your day-to-day life and stop managing your condition.

“When people are in deep remission, sometimes they stop taking their medication. Unfortunately, your risk of a flare goes up. It’s a story we see all the time. The good thing is, there are usually things we can do to try and bring [UC] back under control.”

He reminds people living with UC to talk to their doctor before they stop taking a medication.

What Can I Expect if Symptoms Return?

It’s important to know your body when you have a long-term illness like UC, where symptoms come and go. Understand yours and keep them on your radar. Maybe you’re having more bowel movements than normal, or you’re in more pain. Other signs include:

Diarrhea with blood or pus Stomach pain and cramping Pain or bleeding in your rectum Strong urge to have a bowel movement Trouble having a bowel movement Weight loss Extreme tiredness Fever

“These are the early flashing red lights on your dashboard that should get you talking to your doctor,” Iroku says. 

The things that aggravate your condition — certain foods or medicines — can change over time. As you get older, your body, including your GI system, may be more sensitive to irritation.

You and your doctor can also work together to figure out if your symptoms are truly a UC flare or the sign of something else, like irritable bowel syndrome, an infection, or a side effect of medication.

One of the best predictors of a future UC flare is whether you’re having one right now. If you have active ulcerative colitis this year, your odds of a flare next year are around 70%. This also means if you’re in remission today, your chances of staying symptom-free also rise.

Quitting smoking, staying active, lowering stress, and avoiding trigger foods will help keep your symptoms at bay for longer.

Medicine that works well is also critical to managing flares. A long remission can make it hard for you and your doctor to know if a medication is working. It may take a while to find one that helps you feel better. Be sure to visit your doctor regularly and stay up to date with testing, even when you’re not having symptoms.