When you think about life with inflammatory bowel disease, are you able to think beyond the pain and suffering? Are you able to pause and take time to reflect on how your illness has shaped you into who you are today? Are you willing to look at something that continually challenges you, scares you and leaves you drained—and think…you know what, I wouldn’t have my life any other way? 
It takes a lot of time and a lot of patience to come to this place of realization. Until recent years, I’m not sure I would have ever been able to say a positive word about what it’s like to live with Crohn’s disease. But now, more than 13 years later with this disease, I feel my vision has gone from black and white and changed to color. I have peripheral vision I never had before. I’m able to see how my past shaped me into who I am today. I’m able to recognize how the pain and hurt has altered my perspective and forced me to take the blinders off. I can see moments where I’ve risen above and shown courage and bravery. Some memories are painful, some make me feel sad, others make me feel proud.
There comes a time in a chronic illness patient journey that you stop thinking “why me” and instead “why not me.” I don’t like placing pity on myself. I don’t prefer to fantasize about the days before I was diagnosed. Instead—I enjoy reflecting on how I’ve evolved through the years, despite the setbacks and the scares.
Chronic illness, while physically, mentally and emotionally taxing, also has the ability to show us the beauty of the world around us and all that we’re capable of. Instead of thinking how my Crohn’s holds me back—I think about how I’ve lived despite its restraints.
As the years go by, and the diagnosis “anniversary celebrations” roll on, I continue to grow and feel a renewed sense of self within my illness and within myself. As you experience procedures, self-injections, surgeries and the unknown, you get desensitized, but you also gain strength. The day-to-day management of an invisible chronic illness is exhausting and can be overwhelming, but there comes a time when you feel a sense of harmony with your body. You know what it’s trying to tell you. You know when you need to listen. You understand when you need to act.
My disease has helped me take on motherhood. It’s made me soak in the feel-good moments, take mental snapshots of the happy days and celebrate the beauty of life. My disease has forced me to press pause when I’m doing too much, it’s reminded me of the importance of self-care and taking time for me. It’s shown me which people are meant to be in my life and which are meant to be in the backstory.
It’s a season of gratitude. A season of thanks. A season of family, friends and celebrations. This year—I’m choosing to celebrate how Crohn’s disease has guided me to the present. Beyond thankful for a husband who’s my rock, a son who is healthy as can be and a daughter on the way in January. My body may not be “healthy” …but, it’s still managed to create miracles.
It hasn’t always been a fun ride, it’s been brutal at times. But it’s my life and I wouldn’t have it any other way. Please do yourself a favor and give yourself time to reflect on how your disease has shaped you into the person you are today. By showing gratitude about living with IBD, it’s one of many moments where you can show your disease who is in the driver seat and continually rise above.
Try having a flare during the worst natural disaster in the history of your country. It happened to me. I survived.
One morning I decided to stop in my GI’s office. He had lost the A/C unit and the office was flooded during the storm. He ordered some labs, an emergency colonoscopy and a few days of rest. I was anxious, exhausted, scared. After the colonoscopy, I was prescribed prednisone for a month and then started Humira.
I hope my experience sheds light on what it’s like for those in the chronic illness community as they endure the repercussions of natural disasters. It’s a critical conversation that needs to happen—preparedness for the IBD community in the face of weather disasters. How can employers, government and society step up to the plate?
Sickness and health truly take on a whole different meaning when you live with a chronic illness. Katy witnessed her husband Vince’s compassion and character while they were dating.
“Operation: Good Health.” She made it a priority to get a minimum of eight hours of sleep a night, as lack of rest tends to be a trigger for her. She was on a mission to hydrate, hydrate and hydrate some more. To set herself up for success and limit any surprise flares, she planned out her meals the entire wedding weekend. For example, she does well with bland foods, like noodles, rice, chicken and (big one) avoiding alcohol. And finally, she delegated responsibilities (aka stress) to friends and family. Katy admits she’s pretty Type A and would much rather do things herself than hand them off. However, she wanted to enjoy her wedding and because of her proactive planning, she was able to do just that!
Reagan, Grayson and Carter may not understand why their mommy is in bed or why she needs to pull over on the side of the road when she gets sick, but Katy’s Crohn’s has taught her children a great deal of empathy at a young age. A few weeks ago, she was in debilitating pain and her nine-year-old offered to make dinner for her brothers. She poured them each a bowl of cereal and that was everything.
Currently, many patients and caregivers struggle to inject medications correctly, which means patients don’t always receive their full dose of medication. This can lead to symptoms worsening and a greater threat of a flare up.
There’s also an online study—available to anyone in the United States—going on right now for those living with an immune system or digestive system condition. You can earn $15 for a 15-minute, online survey.
While I feel incredibly blessed to be in this position, it comes with its own unique set of worries.
They will live within a home that talks about chronic illness and experiences it each day. Your little ones will learn compassion and perspective before they are even able to truly communicate. If you have a child and chronic illness, you know what I mean.
Whether it’s with motherhood or with living life with Crohn’s, it’s important to remind yourself that everything goes through stages. There are highs and lows, but each moment is fleeting.