Living With Ulcerative Colitis

If you’re one of the almost 1 million people in the US living with ulcerative colitis, you’re probably well aware of the challenges of this debilitating and often unpredictable disease. Symptoms can be mild to severe and can get worse over time. Sometimes the disease may be active and symptoms are present. At other times, few or no symptoms are present (called remission). This can make it even more difficult for you to live your life. Read on to learn about ulcerative colitis and ways to manage it in 6 common situations.

About ulcerative colitis

Ulcerative colitis is a chronic (long-lasting) disease that causes irritation and sores (ulcers) on the inner lining of the large intestine. It is one of a group of diseases called inflammatory bowel disease (IBD). Crohn’s disease is another form of IBD.

Common signs and symptoms of ulcerative colitis include:

• Diarrhea with blood or pus.
• Stomach discomfort.
• Having to go to the bathroom without warning.
• Being tired.
• Feeling sick to your stomach or having less of an appetite.
• Losing weight.
• Having a fever.
• Being anemic (having fewer red blood cells than normal).

6 important things to keep in mind if you have ulcerative colitis

1. Working with your healthcare provider
Managing ulcerative colitis means teaming up with your healthcare provider and working together on a regular basis. Currently there is no cure for ulcerative colitis. The goal of treatment is to stay in remission for as long as possible. And treatment must be tailored to each patient.

It’s important that you keep all of your scheduled office visits when you are having flares and when you are in remission. If you have any questions or concerns between your appointments, call your healthcare provider. He or she will work with you to:

• Set treatment goals, such as achieving and maintaining remission and improving your overall quality of life. Ask your healthcare provider, given your current condition, if there any physical or lifestyle factors you should consider.
• Adjust your medications as necessary.
• Manage flares. Ask your healthcare provider at what point you should consider your situation serious enough to call him or her.
• Monitor your health and check for treatment-related side effects. Ask your healthcare provider if there are any other health issues you need to monitor or be aware of.

2. Traveling
Like many people, travel may be a part of your life—whether for business or pleasure. While having ulcerative colitis can sometimes complicate your trips, planning ahead can help take some of the worry out of traveling. Try to:

• Book a seat close to a bathroom on airplanes and trains.
• Keep hand sanitizer handy in small bottles that can go through airport security, if applicable.
• Talk to the airline or train company to see if they can accommodate your dietary needs. You can also bring a snack of your own.
• Plan ahead to know where there are rest stops with bathrooms when driving long distances.
• Travel with extra toilet paper, wipes, ointments, and changes of underwear and extra clothes.
• Talk with your healthcare provider in advance about your travel plans and what to do if your condition worsens while you're traveling.

3. Dining out
You may be concerned about restaurant food choices and how they may affect you. While foods affect people with ulcerative colitis differently, there are things you can do to have an enjoyable dining experience. For example:

• Eat a light meal of foods you are comfortable eating before going out to dinner. This can help you avoid eating too much or being tempted by foods that you don’t tolerate well or aren’t sure about.
• Look at the menu online before getting to the restaurant so you don’t feel rushed to make a choice. You can also call the restaurant and ask questions about menu options. Many restaurants will accommodate changes you ask them to make to items on the menu.
• Eat smaller portions (appetizers are a good size) and avoid “super-sized” portions that might make you feel unwell.
• Stay away from foods that don’t agree with you. For example, greasy or fried foods are common triggers for many people with ulcerative colitis.

4. Dealing with stress
Living with ulcerative colitis can be stressful, which can make your symptoms worse. That’s why managing stress is an important part of managing the condition. To get started, you can:

• Join a support group.
• Get daily exercise.
• Practice yoga or meditation.
• Learn about tools and techniques to help manage stress.

5. Dating and intimacy
Living with ulcerative colitis can have a negative impact on dating and intimacy. For example, the fear of incontinence, having stomach pain or a fever, or feeling tired can ruin a romantic evening. In addition, body image can be affected by symptoms, making people feel less interested in sex. Consider:

• Talking with your healthcare team if you are having problems with your ability to perform sexually.
• Talking with your partner about what you are dealing with rather than trying to hide it. Open communication can bring you closer together.
• Joining a support group if you are having trouble starting or maintaining a sexual relationship.

6. Talking with others about ulcerative colitis
While it may be difficult or embarrassing to talk with people you are close with about your ulcerative colitis and how it impacts your life, it can also be one of the best ways to help you manage it. While the amount of information that you are comfortable sharing is very personal, most people find it helpful to have support from others. For example, consider letting people know in advance about your condition. This may make your life easier and help others understand why you might need to cancel future plans at the last minute or if you need to use the bathroom unexpectedly.

Daniel M. Quirk MD, MPH, MBA, is a Senior Medical Director on the US Medical Affairs team supporting Inflammation and Immunology at Pfizer Inc.

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