When I was officially diagnosed with ulcerative colitis (UC) in 2011, I had no idea how much my life would change. You see, life with UC is more than just maintaining the symptoms.
Living with UC has its challenges. Some days may not be as good as others, especially on the days when you’re going through a flare.
Throughout my journey, I’ve learned that it’s vital for my mental and physical health to ensure I have all the tools I need to get through those days.
My kit includes more than just physical items that I may need when I’m going through a flare or an emergency. It also has a variety of things that truly help me get through the days when I’m not feeling my best.
First and foremost, you must be prepared for the unexpected situations that UC may throw at you at any given time.
A sense of urgency may occur in an active flare, and it’s best to be ready when this happens. Within my emergency bag, I always keep:
- extra clothes
- disposable gloves
- hand sanitizer
- other hygiene items
Also, for those living with a stoma, having an ostomy emergency bag will help if you experience a leak. It’s wise to have the essential items on hand, such as extra pouches, stoma powder, barrier rings, and whatever you feel is necessary to change your ostomy bag successfully.
Trust me, I have had several occasions where my emergency bag was a lifesaver.
Often, I faced challenges with my mental health far more than my physical health. There is nothing worse than the feeling of being isolated and alone. For me, finding a support group was vital.
There are many organizations out there, such as Color of Crohn’s and Chronic Illness, where I found a community of individuals that could relate to my journey. I could engage with others, ask the tough UC questions, and hear new perspectives.
Social media platforms, such as Instagram, have also been a great way to connect and build a network with the inflammatory bowel disease (IBD) community.
After years of feeling alone, I started to use my Instagram platform to advocate and bring awareness to UC and empower others to know that we’re more than our diagnoses and we can live a quality life.
It’s important to pay attention to specific triggers that can negatively impact you during an active flare.
Stress and anxiety often play a significant role in making my symptoms worse. But I can tell you firsthand that managing stress is easier said than done. After all, stress is a natural part of life.
Taking steps to manage your stress, however, can genuinely help your emotional state. Some ways to manage your stress levels include exercise, meditation, getting enough sleep, or seeking therapy.
During a flare, your well-being should take the number one priority, so don’t neglect self-care. For me, I make sure I wear my coziest pajamas while relaxing as I watch my favorite movie.
Whatever brings you happiness is key to maintaining a healthy self-care routine.
I often feel a sense of urgency while out in public, and it always happens unexpectedly. At times, the worst part is that there may be no public restroom in sight.
Carrying my “Gotta Go, Right Now” card, especially when in an active flare, gives me comfort. Showing this card in public helps you discreetly ask for access to a restricted bathroom.
Believe it or not, just carrying this card helps decrease my restroom anxiety, and I feel more comfortable leaving my house to go out in public.
Throughout my UC journey, I’ve learned that transparency is critical. Don’t be afraid to be honest with the people closest to you by letting them know what you’re going through, especially during a flare.
You may be surprised at the outpouring of love and support you will receive. Keep in mind that UC doesn’t just affect the person living with it. It also affects the people closest to you.
A robust support system will be beneficial for all parties to navigate the “new normal” of UC. Remember, you don’t have to go through this journey alone.
Inevitably, people with UC will experience a flare at some point. There will be days when you feel your best and are ready to take on the world. On those days when you’re not feeling your best, remember to stay prepared.
Develop your UC survival kit with the essentials to help your particular needs. If you remain ready, you can still live a quality life with UC.
Kimberly Hooks resides in Atlanta, Georgia. She is a lead ambassador with Color of Crohn’s and Chronic Illness, a nonprofit focused on improving the quality of life for marginalized people who battle IBD and related chronic illnesses. Kimberly is passionate about sharing the ups and downs of her personal IBD journey to help the next person. You can follow her as she advocates for IBD on Instagram, Twitter, and YouTube.