What to Do if Your Ulcerative Colitis Treatment Isn’t Working

With ulcerative colitis (UC), it may feel like each day presents a new hurdle. You can get your symptoms under control and keep them in remission with treatment, yet because of the somewhat unpredictable path UC can take, you may eventually find that your management approach is no longer working as it should.

Over time, your medication may become less effective. If you’re aware of the signs, though, you and your doctor can make quicker adjustments and get your treatment back on track.

First, you should know what effective treatment looks like. “Your treatment is successful if you are able to form stools without bleeding, cramping, or urgency,” says Sunanda V. Kane, MD, a gastroenterologist and professor of medicine at Mayo Clinic in Rochester, Minnesota, and a member of the Crohn’s and Colitis Foundation’s education committee.

There are two components of effective treatment: controlling symptoms and maintaining that control. Both are important parts of truly successful treatment. “The goals of therapy include inducing clinical remission, alleviating or greatly reducing symptoms, and preventing damage from untreated disease over time,” says Jessica Philpott, MD, PhD, a gastroenterologist at Cleveland Clinic in Ohio. “Basically, you’re aiming to minimize the impact of the disease on you in a way that works best for you and to help you live the life you want to live.”

Understanding Treatment Options for Ulcerative Colitis

Effective UC management also involves knowing all your treatment options. Medication can take the form of suppositories or enemas, pills, shots, intravenous infusion, or a combination of several of these, Dr. Kane says.

1. Aminosalicylates (5-ASA) This class includes sulfasalazine (Azulfidine) and mesalamine (Canasa, Delizicol, Lialda, Asacol, Pentasa, Apriso). These work to reduce inflammation of the colon.
2. Corticosteroids Examples of these include prednisone (Deltasone) and budesonide (Entocort EC, Uceris), which work by suppressing the immune system. Doctors may prescribe corticosteroids to treat flares, but they aren’t suitable for long-term use due to their severe side effects.
3. Immunomodulators These suppress the immune response that causes colon inflammation. Although they can take several months to work, immunomodulators may be helpful in maintaining remission. These might include 6-mercaptopurine (Purixan, Purinethol), azathioprine (Azasan, Imuran), or methotrexate (Trexall).
4. Biologic Therapies Biologics consist of lab-grown antibodies and work by stopping certain proteins in the body from triggering an immune response. Biologic therapies include infliximab (Remicade), adalimumab (Humira), golimumab (Simponi), ustekinumab (Stelara), vedolizumab (Entyvio), and certolizumab pegol (Cimzia).
5. Small Molecules, or Janus Kinase (JAK) Inhibitors These oral medications, including tofacitinib (Xeljanz) and upadacitinib (Rinvoq), also work on the immune system but act differently than biologics.

After a while on one treatment plan, you may find that your medication doesn’t work as well as it used to. Dr. Philpott says that the following symptoms may suggest it’s time to discuss changing treatments with your doctor:

• An increase in your bowel movements
• Trouble or pain passing stool
• Weight loss
• Fevers
• Blood in stool
• Fatigue

However, she says, “It is important to be aware that sometimes these symptoms can occur for a different reason. That is why your healthcare provider should do some tests when this occurs, to identify what is causing the problem.”

“If you are feeling worse on the medication than off it, it is time to have a discussion with your doctor,” says Kane. Don’t be afraid to speak up. “Your doctor assumes everything is okay unless you say something,” she says. Her recommendation is to start by saying something like, “I’m not sure that my medicine is doing what it’s supposed to,” and then going into detail about your symptoms. Your doctor will appreciate your honesty, she says.

Philpott says it’s also important to be prepared going into your appointment. “Things to discuss with your healthcare provider would be what the specific symptoms are, when they started, and if [you] notice a fluctuation over time,” she says. For example, if you’re taking an injection and notice that symptoms start recurring before you’re due for the next injection, that’s important to note, she says.

Tell your doctor about any new medications you may be taking, including those that are over-the-counter, as well as any other new symptoms you’re experiencing. Finally, “being able to report how many bowel movements [you have] a day and at night, and how this has changed from your baseline, will be important,” Philpott says.

Your doctor will likely want to rule out other possible causes of your symptoms. At your appointment, you’ll be assessed to see if the symptoms are the result of a UC flare, an infection, or another condition like irritable bowel syndrome, says David P. Hudesman, MD, a gastroenterologist and the codirector of the inflammatory bowel disease center at NYU Langone Health in New York City.

Tests you may undergo include blood tests, stool studies, and a colonoscopy, he says.

• Side effects
• Not understanding inflammatory bowel diseases well
• Being able to access medication
• Organizational and planning issues around getting or taking medication
• The type and course of the drug and the level of disease activity
• Depression and anxiety
• Negative beliefs around treatment

If you experience UC symptoms despite taking your medication as instructed, your doctor will need to determine why your symptoms flared. Sometimes, a patient may experience a loss of response to a medication, having built up a resistance to it, Dr. Hudesman explains.

Once your doctor figures out what's going on, they’ll discuss with you any changes to your UC treatment plan.

• Increasing the dose of your medication
• Changing the interval between treatments
• Trying a different drug from a similar class
• Trying a drug from a different class
• Adding an immunomodulator to help calm your immune system

Your doctor may also suggest a short course of steroids to control your flares. “But there has to be an exit strategy [from steroids],” Kane says. That strategy could help you get back on the medication you were taking previously or start a new one. Steroids aren't a long-term solution.

If none of the drugs control your inflammation and keep you in remission, surgery to remove your colon may be the next step.

“The important thing to understand is that nowadays we have many medical and surgical options, so do not give up hope if your UC is difficult to control. And contact your healthcare team to discuss treatment options,” Philpott says.

If you’re in remission and have been doing well for a long time, then you might talk to your doctor about reducing your medication dosage and changing your dosing schedule. They’ll be able to advise you on the risk of relapse, whether this makes sense for your case of UC, and what to look out for in case symptoms do return.

• Ulcerative colitis (UC) requires medications to prevent and manage flares. However, they may not have the intended effect on flares, might cause intolerable side effects, or might lose effectiveness over time.
• Consult a doctor if the medication isn’t relieving your symptoms. Be sure to note how many stools you pass in a day, as well as any other symptoms or side effects you experience and when they occur, if possible.
• Your doctor may recommend changing the type of medication, your dosage, or how often you take it if you continue to experience flares. Taking another medication like an immunomodulator may help, while some people may need surgery to treat UC if medications aren’t successful in reducing flares.
• Discuss any plans to discontinue taking medications with your doctor, so they can monitor any changes and provide recommendations.