Ulcerative Colitis: Helping Patients Live With Chronic Disease

"Medical Journeys" is a set of clinical resources reviewed by physicians, meant for the medical team as well as the patients they serve. Each episode of this 12-part journey through a disease state contains both a physician guide and a downloadable/printable patient resource. "Medical Journeys" chart a path each step of the way for physicians and patients and provide continual resources and support, as the caregiver team navigates the course of a disease.

Although many patients with ulcerative colitis (UC) enjoy remission for long periods with treatment, it's important for them and for their clinicians to remember that they still have a chronic disease. Remission isn't always complete, such that some symptoms remain -- though at a more tolerable level. Moreover, even when symptoms have vanished, patients still bear the burden of taking medications indefinitely, not to mention the ongoing clinic visits and tests.

And the underlying autoimmune pathology in UC remains -- suppressed but not eliminated. Recurrence can be expected if patients quit therapy. And disease control may ebb over time, requiring changes in treatment -- in some cases necessitating surgical interventions when drug therapies have been exhausted.

Those considerations make UC a life-altering condition with psychological as well as physical impacts. Not only do patients need to watch their diets, they -- like anyone with a chronic illness -- also must develop other coping skills to keep them from feeling overwhelmed or depressed.

Psychologists advise patients with chronic conditions not to try to go about their old life as if nothing has changed, but rather to actively confront it and take charge of it.

"A good place to start is by writing down all of your questions and taking them to your physician to discuss," according to the American Psychological Association (APA), in a section of its website about chronic illness. "Ask your doctor what specific steps you can take to optimize your health. Accurate knowledge can help you feel empowered."

Patients should also be reassured that emotional reactions such as grief or anger are normal "and will likely ease with time," the APA says.

Taking Charge

As explained in an earlier installment in this series, dietary adjustments are often helpful in managing UC, and having a program to follow can help patients feel like they are gaining some control over their condition (especially when they are also obtaining relief from their medical therapy). So it behooves the clinician to be proactive in providing patients with advice on what to eat and not eat, and how to eat too. It is especially important for clinicians to not be dismissive of patients' dietary questions as patients will seek information from less reliable sources.

In the same way, encouraging patients to be physically active can be helpful in developing a can-do attitude. Many studies have shown that staying active is beneficial physically in UC and other autoimmune diseases, and psychologically as well.

Patients can also develop plans for how they will cope with fecal urgency when venturing outside the home: locating restrooms, choosing aisle seats on planes and trains, and dealing with other contingencies.

Dealing with Negative Emotions

Especially in the weeks following patients' initial diagnosis, they often experience considerable stress about what the future holds, even if they have followed the above advice. UC's disease course is variable and not fully predictable, and understandably, patients may worry about their ability to work and otherwise maintain some semblance of normal life.

The U.S.-based Crohn's & Colitis Foundation lists several ways for patients to manage anxiety and stress, including the following:

• Meditation, yoga, tai chi, and/or relaxation and breathing exercises

• Continuing with previous hobbies and other activities

• Developing a support network involving family, friends, and healthcare providers

• Joining online patient support groups

• Cognitive behavioral therapy

• Medication to address severe anxiety

Patients may also show signs of depression. It may be treated in the same way as other forms of depression arising from traumatic life events. Patients should be encouraged to stay in contact with other people (so as not to wallow alone in negative emotions) and to ask for help if their mental state becomes disabling.

Body image and its connection to self-esteem may suffer following a UC diagnosis. The Crohn's and Colitis Foundation advises that patients (especially those seeking intimate relationships) be reminded that the illness is not their fault and that the diagnosis should not define them.

Finally, it's important that patients do not seek solace in alcohol or psychoactive drugs. Clinicians should emphasize this point to patients early and often.

Relationships with Others

UC is often characterized by alternating flares and periods of remission that, over time, can put a strain on even the strongest relationships. As the Crohn's and Colitis Foundation points out, family members may become caregivers during UC exacerbations and some people will be more supportive than others. When the patient is a child, young siblings may be hurtful and face their own emotional challenges. Close friends and family may need education and support; while patients' clinicians may not be able to provide it directly, they can highlight resources available online and in the community to help in this regard.

School and work may also be difficult for patients to navigate when they are experiencing symptoms. Not all teachers, supervisors, and fellow students and coworkers will be understanding or supportive. Nevertheless, it is a good idea for patients, at the very least, to inform administrators about their diagnosis and ask for accommodations when necessary. In the U.S., it's illegal to discriminate against people because of a medical condition as long as they are able to perform with reasonable accommodations.

Obviously, intimate partners generally need to be part of the conversation, too. Crohn's & Colitis UK observes that sex as previously practiced can run afoul of UC and its treatment. For example, the group says, there may be "accidents in bed," and ongoing pain and fatigue may mean patients simply aren't up to sex. As well, suppositories that are to be inserted at bedtime can "disrupt being spontaneous" and interfere with anal receptive intercourse. However, it is important for providers to be open to discuss concerns about sex and to be aware of available resources.

The Healthcare Team

Above all, patients should be urged to share all questions and concerns with their treating professionals. It's ideal for patients to come to appointments with lists, and even to communicate them to their doctors beforehand so that the clinician can prepare when necessary.

For their part, clinicians should ask about ongoing symptoms, related problems (such as difficulties at work or in school), dietary habits, and over-the-counter drugs and supplements patients may be taking in addition to prescribed medications. The importance of honesty in these conversations can't be overemphasized.

Clinicians should be armed with resources (copies of articles, brochures, websites, and links to support groups) to share with patients on coping with UC. And they should also be liberal with referrals to other professionals, such as mental health counselors or physicians, when patients describe issues that go beyond the clinician's own scope of practice.

Next up: When Surgery Must Be Considered

Read previous installments in this Medical Journeys series:

Part 1: UC: Understanding the Epidemiology and Pathophysiology

Part 2: UC: Symptoms, Exams, Diagnosis

Part 3: UC: How and Why Does It Arise?

Part 4: Case Study: Why Is This Teen's Ulcerative Colitis So Severe, So Resistant?

Part 5: UC: Initial Treatments and Response Monitoring

Part 6: UC: Dietary and Lifestyle Interventions

Part 7: Ulcerative Colitis: Second-Line Treatments

Part 8: Case Study: Painful Distended Abdomen and Weight Loss -- What Is the Cause?