For Your Patients: Living With Ulcerative Colitis

As with any chronic illness, ulcerative colitis (UC) will impact your life in more ways than just your physical well-being. While many patients can achieve clinical remission (near or complete resolution of symptoms), your life has now taken a new trajectory. If you have symptoms that interfere with your lifestyle, be sure to discuss this with your GI provider. There may be other medical options.

While it is undoubtedly unwelcome, UC does not have to define you or take over your entire life. Following are some tips and strategies for living with this condition.

It's normal to worry about how you will manage from now on and what the future may hold for you. Even if your symptoms are under control now, it is very common to have concerns that symptoms may come back at an unexpected time. You will likely have bad days and good days -- mentally as well as physically. Be prepared for that and understand that feelings of worry and depression usually ease over time. Let your doctor know without delay if you feel overwhelmed.

Take charge. There are many things you can do to stay on a positive course:

• Be physically active
• Follow your doctor's dietary advice
• Take your prescribed medications
• Don't be a hermit -- keep up your social connections and continue with previous activities you've enjoyed
• Let family and friends know what's going on, and limit contacts with those who aren't supportive
• Learn everything you can about UC and join support groups in person or online

For some activities, you may have to make adjustments in light of ongoing symptoms. When you go out, identify restroom locations in case of fecal urgency. Try to secure aisle seats on planes and trains. If pain and fatigue remain problematic, ask your supervisor at work or administrators at school to make accommodations such as more flexible scheduling. If you're an adult in an intimate relationship, sex remains very possible but you and your partner should recognize that "accidents" can occur and that sometimes you may be just too tired.

Remember that your doctor's job is to help you, but he/she can't operate in an information vacuum. At your appointments, don't be shy about asking questions and discussing problems you are experiencing. Bring lists with you and make sure you get answers you can understand. Your doctor may recommend that you see other professionals to help with financial problems, mental health issues, and other concerns beyond a gastroenterologist's expertise.

The U.S.-based Crohn's & Colitis Foundation, and its British counterpart, Crohn's & Colitis UK, each maintain a series of detailed, patient-oriented informational web pages and printable materials on living with UC. You can find them here and here.

Read previous installments in this series:

What Is Ulcerative Colitis?

I've Had Diarrhea That Won't Go Away -- What Should I Do?

UC -- Why Me?

Starting Drug Therapy for Ulcerative Colitis

Diet and Lifestyle Considerations

My Ulcerative Colitis Treatment Isn't Working. Now What?

"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.