Receiving a diagnosis of ulcerative colitis means adapting to new routines and challenges, but it doesn’t mean putting your life on hold. With thoughtful planning and the right strategies, you can continue to thrive in your career, maintain social connections, and pursue your passions. This guide explores practical approaches to navigating daily life with ulcerative colitis, helping you find your “new normal” with confidence.
Workplace Navigation: Thriving Professionally
Many people with ulcerative colitis worry about how their condition might affect their professional lives. These strategies can help you manage symptoms while maintaining your career momentum:
Consider disclosure carefully. You’re not legally obligated to tell your employer about your diagnosis, but selective disclosure may help secure accommodations when needed. Consider speaking with HR rather than direct supervisors to maintain privacy while getting support.
Know your rights. In many countries, ulcerative colitis qualifies as a disability under employment laws, entitling you to reasonable accommodations. These might include flexible working hours, a workspace near restrooms, or the option to work remotely during flares.
Plan your workday strategically. Schedule important meetings and presentations during times when your symptoms are typically better managed. Keep emergency supplies at work, including medication, spare clothing, and cleaning products.
Manage stress proactively. Work-related stress can trigger flares, creating a difficult cycle. Build short breaks into your day for relaxation techniques, whether it’s five minutes of deep breathing or a brief walk around the building.
Social Life: Maintaining Connections
Ulcerative colitis can sometimes lead to social isolation, but staying connected is vital for both emotional wellbeing and quality of life:
Develop restaurant strategies. Dining out remains possible with planning. Review menus online beforehand, call restaurants with questions about ingredients, and identify safe menu options at favorite establishments. Consider eating lightly before social events centered around food.
Prepare brief explanations. Having a simple, matter-of-fact explanation ready for friends can reduce anxiety about discussing your condition. Something like: “I have a condition called ulcerative colitis that affects my digestive system, so I sometimes need to be careful about certain foods and may need to use the restroom urgently.”
Plan activities thoughtfully. Suggest outings where bathroom access isn’t a concern, such as movie theaters, museums, or friends’ homes. For longer events, scout bathroom locations in advance to reduce anxiety.
Connect with understanding people. Some friends will naturally be more supportive than others. Invest energy in relationships with people who respond with empathy rather than those who dismiss your experiences.
Travel Tactics: Exploring with Confidence
Traveling with ulcerative colitis requires additional planning but remains entirely possible:
Consult your healthcare provider before trips. Discuss any necessary medication adjustments, precautions for your destination, and how to handle potential flares while away from home. Ask for extra medication prescriptions and documentation for carrying supplies through security.
Research medical care at your destination. Identify gastroenterologists or hospitals at your destination before departing. Your home healthcare provider may be able to recommend colleagues in other locations.
Pack strategically. Carry medications in your carry-on luggage, along with emergency supplies. Consider compression socks for long flights to reduce DVT risk, which can be elevated with active ulcerative colitis.
Consider transportation carefully. Choose aisle seats near restrooms on planes, trains, and buses. For road trips, plan routes with frequent rest stops and keep an emergency kit in your vehicle.
Purchase travel insurance. Standard policies often exclude pre-existing conditions, so look for plans that specifically cover them or consider specialized medical evacuation insurance for international travel.
Family Planning: Making Informed Decisions
Ulcerative colitis doesn’t prevent having children, but it does require thoughtful planning:
Discuss medication safety. Some ulcerative colitis medications are safe during pregnancy, while others require switching before conception. Ideally, plan pregnancies during periods of remission and work with both your gastroenterologist and obstetrician.
Understand heredity factors. While ulcerative colitis does have a genetic component, the overall risk to children is relatively low—about 2-8% if one parent has the condition. This risk increases slightly if both parents have inflammatory bowel disease.
Prepare for fertility considerations. Active inflammation can temporarily affect fertility in both men and women. Additionally, certain medications may impact fertility, while others are completely safe. Surgical procedures for ulcerative colitis can sometimes affect fertility as well, making it important to discuss family planning before major treatments.
Consider delivery options. Most women with ulcerative colitis can deliver vaginally, though specific circumstances might warrant C-section delivery. Your gastroenterologist should be part of your prenatal care team to monitor your condition throughout pregnancy.
Financial Management: Navigating Costs
Chronic conditions like ulcerative colitis can strain finances, but several approaches can help manage costs:
Understand your insurance coverage. Familiarize yourself with your plan’s coverage for specialist visits, procedures, emergency care, and especially biologics or other costly medications. Appeal coverage denials when necessary—many are overturned when challenged.
Investigate assistance programs. Most pharmaceutical companies offer patient assistance programs for expensive medications. Nonprofit organizations may provide additional financial support for treatment costs or related expenses.
Track medical expenses. Keep detailed records of all medical expenses, as they may qualify for tax deductions if they exceed a certain percentage of your income. Include transportation to appointments, special dietary requirements, and over-the-counter supportive products.
Consider an FSA or HSA. Flexible Spending Accounts and Health Savings Accounts allow you to set aside pre-tax dollars for medical expenses, effectively reducing your healthcare costs.
Building Resilience: Emotional Well-being
Living with a chronic condition tests your resilience, but you can actively strengthen your emotional coping skills:
Practice radical acceptance. Acknowledging the reality of your condition—without resignation or self-pity—creates a foundation for effective coping. Accept what you cannot change while focusing energy on aspects you can control.
Develop a flare action plan. Having a concrete plan for managing flares reduces anxiety and provides a sense of control. This might include medication adjustments, dietary modifications, rest strategies, and criteria for contacting your healthcare provider.
Celebrate victories. Recognize and celebrate your resilience, whether it’s successfully navigating a work presentation during a difficult day or trying a new activity despite anxiety about symptoms.
Find meaning. Many people with chronic conditions find that helping others through support groups, advocacy, or raising awareness gives purpose to their experiences and builds resilience.
Helpful Tools and Resources
Technology and community resources can make managing ulcerative colitis significantly easier:
Symptom tracking apps. Applications like Oshi, GI Monitor, or general health trackers help identify patterns, prepare for healthcare appointments, and recognize early warning signs of flares.
Restroom locator apps. Tools like Flush and Toilet Finder can quickly identify nearby restrooms when away from home, reducing anxiety about accidents.
Support communities. Organizations like the Crohn’s and Colitis Foundation provide education, support groups, and advocacy opportunities. Online communities offer 24/7 understanding and advice from others who truly understand your experiences.
Meditation and stress management apps. Programs like Headspace, Calm, or Insight Timer offer guided practices specifically for chronic illness and pain management.
Embracing Your New Normal
Finding your way with ulcerative colitis involves acknowledging challenges while refusing to be defined by them. Your “new normal” will include additional considerations, but with time and practice, these adaptations become second nature rather than burdensome exceptions.
Remember that managing ulcerative colitis is a marathon, not a sprint. There will be difficult days when symptoms flare and plans require adjustment. There will also be extended periods of remission when the condition fades into the background of your life. Through it all, your resilience, knowledge, and support network will carry you forward, allowing you to live fully despite—and sometimes even because of—the challenges you’ve overcome.
