Managing Ulcerative Colitis During COVID-19 and Beyond

The COVID-19 pandemic has changed most aspects of our lives and has impacted how people receive care for their inflammatory bowel disease (IBD). For those who live with ulcerative colitis, postponing care is not an option because the condition needs regular management.

However, that doesn't mean that it's business as usual. There might be some changes when caring for ulcerative colitis during the pandemic.

how to manage ulcerative colitis during COVID19 — Verywell / Theresa Chiechi

Receiving Routine Ulcerative Colitis Care

Tips

Keep appointments and use telehealth if possible.
Stick to the treatment plan, including medications.
Be aware of hospital and clinic procedures.
Ask questions about COVID-19 protocols.
Schedule appointments and medication refills as early as possible.
Keep good records to stay abreast of prior authorizations and pre-approvals.

Keeping up with maintenance appointments for IBD can be challenging during the best of times. In many cases, scheduling appointments, procedures, and bloodwork is a partnership between the healthcare team and the patient.

However, during the pandemic, it's even more important for patients to stay on top of these appointments and keep better records so nothing is missed.

During the Pandemic

Some people are forgoing care for their chronic conditions because of concerns about the risk of COVID-19 in doctor's offices and hospitals. However, ulcerative colitis is a condition that needs to be managed regularly.

Go to scheduled appointments and keep taking IBD medications, including infusions given at an infusion center, hospital, or doctor's office. Even when feeling well, medications are needed because they may help prevent a future flare-up. Inflammation in IBD can occur even when there are no symptoms present.

In some areas, elective procedures may be postponed. However, tests often done to manage IBD, such as CT scans, MRIs, and colonoscopies, are still going on at many hospitals and centers. Staff is trained in the procedures that help keep patients safe.

Many doctor's offices are also limiting the number of patients in the office at one time and letting patients wait outside or in their car until their appointment time. If there is a safety concern, talk to the staff. Find out what procedures are in place and get questions answered.

One non-invasive test that some physicians are making use of during the pandemic is fecal calprotectin. A fecal calprotectin test is a stool test that can be done at home and the sample dropped off at a lab. While it won't give the same level of detail that a colonoscopy will, it may be helpful if other routine tests must be postponed.

If possible, it's recommended that people with ulcerative colitis and other chronic health conditions try to get a 90-day supply of medications. For biologic medications, that might not be possible. Instead, keep in close contact with the physician's office, the insurance company, the infusion center, and the specialty pharmacy.

Minor delays can quickly turn into major ones during the pandemic, so it is more important than ever to order medication on time and stay ahead of prior authorizations and pre-approvals.

What to Expect Next

As more people are vaccinated and doctor's offices and hospitals begin to resume their pre-pandemic operations, expect to continue to see delays. For much of the pandemic, health care has been focused on containing outbreaks and caring for those who are very ill. Resuming routine care will take time, and there may be delays.

Patients should start planning early for their regular yearly appointments, tests, and screening exams. This may help in avoiding wait times. It's also important to bring up problems as soon as they occur to get seen quicker.

To help you prepare for an upcoming appointment for ulcerative colitis, use our downloadable Doctor Discussion Guide below. It'll help you learn relevant terminology, anticipate questions you may want to ask, and more.

Ulcerative Colitis Doctor Discussion Guide

Get our printable guide for your next doctor's appointment to help you ask the right questions.

Download PDF

Telehealth has become mainstream and, for many physicians and health systems, may still be an option for patients when the pandemic starts to abate. Taking a telehealth appointment may be a faster way to receive care as the country bridges into recovery from the pandemic.

Check with insurance carriers and the physician's office to confirm that telehealth visits are available and continue to be covered by insurance.

Managing a Flare-Up

Tips

Don't ignore flare-up symptoms.
Seek care for a suspected flare-up as soon as possible.
Make use of telehealth appointments when available.
Don't hesitate to seek in-person care when needed.

With all the difficulties that the pandemic has presented, gastroenterologists are concerned that their patients may experience a flare-up of their IBD, including ulcerative colitis. For that reason, many physicians have taken steps to ensure that patients are still well cared for during the pandemic and beyond.

During the Pandemic

During the COVID-19 emergency, it's going to be important to treat a flare-up as closely as possible as to how it was before the pandemic. Look to the gastroenterologist's office for a plan on how to manage between in-person visits and televisits.

If procedures like a colonoscopy or a capsule endoscopy (pill cam) are needed, where being in-person is necessary, find out the current procedures.

In some cases, patients will need to go into facilities by themselves. However, there may be times when a visitor can come along, especially after having sedation, when it's not possible to drive oneself home.

If a change in medication or management strategy is needed, televisits may help talk over the new plan and get support. Many healthcare professionals such as IBD nurses and educators, dietitians, and mental health professionals are also scheduling telehealth appointments.

Find out what options are available to avoid in-person visits when possible, but don't hesitate to ask for one if an office visit is needed.

What to Expect Next

It's going to take some time to get out from under the pandemic but treating an ulcerative colitis flare-up right away is going to be important to prevent complications. We don't yet know how long mask-wearing and physical distancing will be needed.

It's possible that for in-office doctor visits, masks and limiting the number of people in the office at one time will be needed for quite some time. It may also be true that if there is a new or ongoing outbreak of COVID-19 in the local area, procedures may change to be more strict about in-person appointments.

Ulcerative Colitis Emergencies

Tips

Stick to the IBD treatment plan, including medications, to help avoid emergencies.
Call a physician right away to get guidance, if there's time.
Don't wait to get care for an emergency such as severe bleeding or pain.
Stay informed about local COVID-19 rates and hospital procedures.
Plan ahead for emergencies by having an insurance card, a cell phone and a charger, and lists of medications and doctors handy.

Any form of IBD can result in urgent or emergency situations, including ulcerative colitis. Some of these emergency situations could include an intestinal blockage, severe blood loss, abdominal distention, and severe abdominal pain.

Sometimes it can be challenging to know whether or not to head to an urgent care facility or a hospital. People with IBD will know their body best and if it does seem like something is becoming an urgent problem, it's important to get care right away.

During the Pandemic

When experiencing an urgent situation with IBD, it is still appropriate to go to the emergency department for care. If there's time, it may be helpful to call a gastroenterologist for guidance, which may make the trip to the emergency room go smoother.

It might also be a good idea to call the hospital first because some hospitals are experiencing higher volumes of patients. Watch the local news or read local newspapers to stay informed about the current risk of COVID-19 and how area hospitals are faring.

Be aware that visitors may not be allowed in the hospital emergency department. Patients may have to go in by themselves. This presents a difficulty for those patients who usually take a friend or family member to advocate on their behalf.

Bring a cell phone and a charger to call a loved one when help is needed in communicating with healthcare professionals.

What to Expect Next

While watching the news can be stressful, it is important to stay informed about how the pandemic is proceeding locally. Staying up-to-date about conditions at hospitals and what COVID-19 positivity rates are locally will be part of caring for your chronic illness.

That way, if an emergency occurs with ulcerative colitis, there won't be a lot of uncertainty about how to receive care. Keep in close contact with physicians to understand what they recommend if an ulcerative colitis emergency occurs.

Managing Stress

Tips

Ask healthcare providers for ideas on managing stress.
Try different options for stress relief to find the right combination.
Renew or start a relationship with a mental health professional.
Take advantage of telehealth visits where available.
Online therapy may be an option for some.

Stress does not cause ulcerative colitis. However, some people who live with the condition note that symptoms may be more bothersome during an emotionally difficult period. In some cases, this could progress to being a flare-up of the disease, which can be long-lasting and need treatment to get under control.

For those who have not had contact with a mental health professional in the past, it is a good time to ask for a referral from a gastroenterologist or primary care physician or begin looking on your own.

During the Pandemic

Stress levels among people with IBD and associated mental health concerns such as anxiety and depression are on the rise during the COVID-19 pandemic. Managing stress has always been important in IBD but is becoming critical while the pandemic continues.

Some stress management can be self-directed, such as meditation, mindfulness, exercise, and journaling. Finding stress relievers is an individual process, and so it might mean trying a few different things to hit on the right ones.

However, when people feel overwhelmed, are unable to cope, are using drugs and alcohol more frequently, or are considering self-harm, that's a time to seek out professional help.

Clinical psychologists with extra training in health psychology can be especially helpful for people with IBD. Some hospitals and clinics have GI psychologists (sometimes also called gastropsychs) to assist their IBD patients.

Psychologists who have a background in chronic illness can also support IBD patients. The Rome Foundation GastroPsych Directory can help find a therapist, as can The Association for Behavioral and Cognitive Therapies and the American Psychological Association.

What to Expect Next

The demand for healthcare professionals is already high and will continue to be so for some time. We don't yet know what IBD patients' emotional needs will be when the pandemic restrictions start to loosen. That's why creating a relationship with a mental healthcare professional is important.

Telehealth visits will likely continue to be available. This medium is a good way to continue visits with a therapist or a psychologist. If an in-person visit is needed, there may still be a need for physical distancing and wearing a mask for some time. Check regularly with the office staff about procedures before visiting in-person.

If you are in crisis, don't wait. Call 911 or go to the nearest emergency room. If you are in the United States, you can call the National Suicide Hotline at 988.

IBD and COVID-19 Vaccinations

Tips

It is recommended that IBD patients receive a COVID-19 vaccination.
People with IBD should receive a vaccine as soon as it is available to them.
Having IBD does not increase the risk of an adverse reaction.
The type of vaccine is not considered a factor: patients should receive the vaccine offered to them.
It's not yet known if immune-modifying medications will lower vaccine effectiveness but having some protection against COVID-19 is better than having none.

The Food and Drug Administration (FDA) has authorized or approved the following COVID-19 vaccines:

Pfizer-BioNTech: Available to people 6 months and older
Moderna: Available to people 6 months and older
Janssen/Johnson & Johnson (J&J): Available to people 18 years and older
Novavax: Available to people 12 years and older

The CDC recommends that everyone 6 months and older receive a COVID-19 vaccine and a booster shot if eligible.

Due to possible side effects, the CDC recommends that people seek one of the mRNA vaccines (Moderna or Pfizer) or the Novavax vaccine over a J&J vaccine, where possible.

People who are immunocompromised have a higher risk of being hospitalized, becoming severely ill, or dying from COVID-19. As a result, the CDC recommends that some immunocompromised people receive an extra primary dose of the Pfizer or Moderna vaccine.

Updated bivalent boosters from Pfizer-BioNTech and Moderna received emergency use authorization (EUA) from the FDA. The CDC recommends one bivalent booster shot 2 months after completing the primary series or last booster for all people over the age of 5, no matter the type of vaccine series initially received.

Children ages 5 years are only eligible to receive the bivalent Pfizer booster. Everyone ages 6 years and older can choose to get the Pfizer or Moderna bivalent booster.

In limited situations, a monovalent Novavax booster dose may be used in people ages 18 and older who are unable to receive an mRNA vaccine.

People with ulcerative colitis have various concerns regarding vaccinations against SARS-CoV-2, the virus that causes COVID-19. Some of these are related to IBD medications such as biologics, the potential for adverse effects, and the effectiveness of vaccination if you are immune-suppressed because of medication.

During the Pandemic

There is some data now available on how people with IBD are faring with COVID-19 through the Surveillance Epidemiology of Coronavirus Under Research Exclusion (SECURE)-IBD database.

It's thought that having IBD does not increase the risk of developing COVID-19, that IBD medications (for the most part) should be continued, and that people with IBD should get vaccinated.

People with IBD should continue to check in with a gastroenterologist about the individual risks of COVID-19. Knowing your risk can also help in understanding, for instance, how strict to be with physical distancing and returning to work in person.

It is especially important for patients who develop COVID-19 to contact a gastroenterologist or other healthcare professional about medications. In some cases, medication might be stopped for a time, especially if there's a need to be in the hospital to treat COVID-19.

There is no data at this time, and there is no expectation that vaccinations will cause any safety concerns in people with IBD.

What to Expect Next

The vaccine rollout has been different from state to state and country to country. In some places, people receiving drugs that suppress the immune system are being given priority for vaccination.

This might include people receiving IBD medications, particularly those who need more than one drug to manage their condition. Some of these medications include Cimzia, corticosteroids (prednisone), Humira, Imuran, Entyvio, Remicade (and biosimilars such as Inflectra), Simponi, Stelara, and Xeljanz.

This does not include some other medications used to treat ulcerative colitis such as Azulfidine (sulfasalazine), Asacol (and other forms of mesalamine), Entocort (budesonide), and antibiotics.

The British Society of Gastroenterology "strongly" supports COVID-19 vaccination for IBD patients. As far as how well the COVID-19 vaccines will confer immunity in IBD patients, there currently isn't much data.

For that reason, IBD specialists are looking to the data from other vaccines, such as influenza or pneumonia, to give some clues. What's known is that for some vaccines, people receiving certain immune-suppressing medications, such as those used for IBD, may have a lowered response to vaccines.

The British Society of Gastroenterology recommends vaccination because the benefits are expected to be greater than the risks. Having some immunity to COVID-19 is going to be better than having none. Developing COVID-19 and risking complications is still expected to be more serious than any possible adverse reactions to vaccination.

A Word From Verywell

Living with a chronic illness is difficult under the best of circumstances. During the pandemic, many of the health disparities and difficulties of accessing care for people with IBD have been amplified.

It's always important to stay on top of ulcerative colitis, but the pandemic will probably leave some patients in a serious situation with their IBD. The gastroenterology community is aware of this, yet that might not be the same as being prepared.

IBD patients themselves can stay prepared by sticking to their treatment plan, keeping appointments whenever possible, and seeking care for a flare-up or an emergency when it is needed. Starting early to get appointments scheduled and medication ordered is going to be critical, as is staying on top of the local conditions regarding COVID-19.

Being ready for the remainder of the COVID-19 emergency and the subsequent recovery phases will help you stay as healthy as possible.

The information in this article is current as of the date listed, which means newer information may be available when you read this. For the most recent updates on COVID-19, visit our coronavirus news page.

11 Sources

Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read our editorial process to learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.

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Centers for Disease Control and Prevention. Overview of covid-19 vaccines.
Centers for Disease Control and Prevention. Interim clinical considerations for use of covid-19 vaccines: appendices, references, and previous updates.
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Centers for Disease Control and Prevention. Stay up to date with covid-19 vaccines including boosters.
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Alexander JL, Moran GW, Gaya DR, et al; Inflammatory Bowel Disease section of the British Society of Gastroenterology and the the Inflammatory Bowel Disease Clinical Research Group. SARS-CoV-2 vaccination for patients with inflammatory bowel disease: a British Society of Gastroenterology Inflammatory Bowel Disease section and IBD Clinical Research Group position statement. Lancet Gastroenterol Hepatol. 2021:S2468-1253(21)00024-8. doi:10.1016/S2468-1253(21)00024-8.

Additional Reading

Centers for Disease Control and Prevention. Be Prepared by Staying Informed About COVID-19.
Lutz E, Aufrichtig A, Smart C, Sun A, Harris R, Gianordoli G. See Covid-19 Risk in Your County and a Guide for Daily Life Near You. The New York Times.

By Amber J. Tresca
Amber J. Tresca is a freelance writer and speaker who covers digestive conditions, including IBD. She was diagnosed with ulcerative colitis at age 16.

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