9 Ways to Be a Champion of Your Ulcerative Colitisby Brian Greenberg Patient Advocate
As inflammatory bowel disease (IBD) patients, it’s normal to feel alone sometimes. At a young age, we are taught not to discuss what happens behind a bathroom door. This can leave those of us with IBD, including ulcerative colitis (UC), feeling extremely isolated and even hopeless.
But you don’t have to feel this way, like your UC is in the driver’s seat of your life — and in fact, you can learn to take ownership of your disease and fight back.
Read on to learn how you can become a true champion of your UC.
UC champions are students: Learn about your condition
There are many patients out there without enough knowledge about their IBD. It’s our responsibility to know everything we can about our disease and also our bodies. Take the time to learn everything you can. Read materials about your UC and discuss as much as possible with your doctors.
And don’t forget to learn about your own symptoms and triggers. UC writer Mandy Morgan suggests keeping a food diary: “Your GI doctor may be able to use the data you gathered to help guide your treatment plan,” she says.
UC champions have rituals: Build a routine you can follow
Our bodies are always changing with IBD. From one day to the next, we don’t know how we are going to feel or what is going to happen. We can limit what happens around us, though, by having a set routine that we can follow. You’ll be amazed at how your body will respond to a set schedule with types of food you may eat, meditation/relaxation techniques, and more.
“Patients who follow self-directed routines are more likely to be engaged and activated,” says Michael Chiorean, M.D., director of the IBD Center of Excellence at Virginia Mason. “Patients who are passive, reactive, [or] non-compliant need routines to keep on track.”
UC champions care for their bodies: Eat well and be active
When you have a chronic illness like UC, it’s extra important to have a good relationship with your body, which is fighting fatigue and pain from this inflammatory disease. Getting out of bed and starting the day isn’t always easy, but there are things we can do to make it easier. Two key ways to do this? Through a healthy, nourishing diet and regular exercise. Take the time to learn the dos and don'ts of nutrition with UC. And if exercise sounds daunting, these nine tips can help you get started with low-impact activities like yoga, which can reduce inflammation and your increased stress from UC.
UC champions support each other: Reach out to others
Online and IRL, there are tons of ways to connect with other people living with UC — people who know exactly what you’re going through. Reach out to them. Find support groups. Connect with other UC-ers on Facebook, Reddit, and other social media (check out our 10 favorite UC influencers on Instagram!).
Dr. Chiorean agrees — if you want more support for living with UC, he recommends getting out in the real world and meeting people: “Participate in group events — [like those through the] Crohn’s and Colitis Foundation,” he says. It’s a good way to learn about patient advocacy, too.
UC champions are tough: Be a fighter
There are days when you don’t even want to move because your so exhausted. Days when your entire body hurts and there is nothing you can do. It’s not easy, but we can fight back. Don’t let your UC control you.
UC writer Shawntel Bethea shares her top tips for thriving despite your UC diagnosis. One major tip? “Start small, and do the scary thing,” she says. “If your goal is to run a marathon, but you can’t quite make it that far yet, start by running to the mailbox. Any progress is good progress!”
UC champions master their minds: Think positive, live positive
Spending your day wallowing in the sadness of your UC, waiting for it to get better without taking action? It’s time to make some moves to become more positive. Friends have asked me how I stay positive with IBD, and I always tell them the same thing: Staying in bed, staring at the ceiling and crying, isn’t going to help anything. Living life? That will help. Master your mindset, create good vibes, and things will get better. Here are my tips for taking on IBD with an Olympic mindset.
UC champions are resilient: Learn to persevere
When you have a severe chronic illness like UC, it’s normal to have some bad days. Really bad days, even — when you feel like you just can’t do it anymore, thanks to the increased risk of depression that comes with IBD.
If you’re feeling this way, it’s time to reach out for help. There are support groups, therapists, and other resources to get you back on track. Know that it’s OK to cry, but it’s even more important to recharge your batteries and keep moving forward.
Need some inspiration for those hard days? These UC patients share their words of wisdom to help reassure you that yes, it sucks right now, but things can and will get better. One UC patient, Rebecca Allan, says, “I suffered for years and I never thought I would get to a point where my day-to-day life wasn’t unbearably painful. Yet here I am, in remission, thanks to my hospital and medication. Keep fighting and trying different things to improve your health, as one thing that might not work for someone else could work for you!”
UC champions don’t stop believing: Stay hopeful
The world of medicine is ever-changing, and UC treatment is no exception. If one treatment doesn’t work for you, know that there are other options — and even more medications and treatments will be developed in the coming years. There is hope, and things are going to get better. Doctors continue to learn more, patient advocates are pushing to get better care (from the internet all the way to Capitol Hill), and researchers are chipping away at the IBD problem every day.
So don’t give up — you’ve got this. We’ve got this.