Crohn’s & Colitis Awareness Week Dec. 1-7: How you can make a difference

What does it mean to be an advocate? To me it’s doing everything in your power to speak up, step up and help raise awareness for a cause that’s near and dear to your heart. It’s about having a voice for those who may shy away from the spotlight. It’s standing up for what you believe in and offering hope to others who can’t fathom what it’s like to walk a day in your shoes.

Crohn’s and Colitis Awareness Week was created in 2011 by U.S. Senate Resolution 199, which expresses appreciation to family members, caregivers, health care professionals, researchers, and Crohn’s and ulcerative colitis patients. Each year the Crohn’s and Colitis Foundation of America (CCFA) dedicates this time to truly focus on spreading awareness and highlighting what it’s like for the millions of people who may look healthy on the outside, but are suffering and experiencing pain on the inside. This year’s theme is #IBDvisible.

As CCFA puts it, “The toll IBD takes on the entire patient lies hidden underneath, significantly reducing public understanding of what IBD is and how it affects quality of life. Patients and caretakers can change this by getting involved and sharing stories…giving a face to these diseases.”

Since my diagnosis in July 2005, I’ve encountered countless people who have no idea what Crohn’s is…I find myself repeatedly giving my elevator pitch that I feel like I can recite in my sleep. It doesn’t bother me, but it makes you stop and think for a second that the majority of people really don’t understand what it is, how it makes people feel, and the severity of it. It’s not just random stomachaches and constant bathroom breaks. It’s so much more. Even when you’re in a remission state not a day (or sometimes even an hour passes) that it doesn’t cross your mind, despite being out of the hospital you are constantly on medications with systemic side effects. The thoughts and worries lurk within you frofullsizerenderm the day you are diagnosed. The internal dialogue can be maddening at times… “When I eat this how will it make me feel? What if I get sick today? Is this stomachache a sign of something that’s brewing? When will my next flare up be…will it interrupt big plans I have coming up?”… the list goes on.

For those who are not patients—I oftentimes get the feeling that many think we’re just being worry warts or that we’re acting like it’s a bigger deal than it is and that we’re healthy and have nothing to worry about. Having Crohn’s and talking about it is not a way to get attention, it’s our way of verbally trying to explain to you what we’re going through so we don’t feel so isolated and alone in our fight. As I sit here writing this article… my stomach is hurting. I don’t know if it’s because I just ate lunch or if something is going on with my pregnancy.

While there are many health conditions that are of course more serious or life threatening, Crohn’s and ulcerative colitis are not a walk in the park. The issues in our intestines and colons translate to issues with nutrition, bone strength, joint pain, etc. The mental anguish the disease can cause leads many to a depressive state.

Through the years I’ve found it empowering to get to know members and employees of CCFA who all have the same goal and mission in mind. One of those people is Tovah Domenick.

“Crohn’s disease and ulcerative colitis affects so many people, including several of my loved ones, and CCFA is working hard to not only provide support for patients but also to find better treatments and ultimately a cure. As an employee of CCFA it’s hearing individual patients’ stories and how they have overcome their challenges that makes me passionate about the cause. CCFA’s website is our greatest resource and is full of information for patients, supporters, and caretakers.  We offer online support group, an IBD Help Center, links to find local support and programming, tools & trackers to help manage your IBD, information on current research projects, and much, much more,” said Tovah Domenick, Take Steps National Manager, CCFA.

If I could ask one thing of you—it would be to educate yourself and show compassion. Don’t question a loved one, friend or coworker or try and compare Crohn’s or ulcerative colitis to anything. Instead, listen. Listen with an open heart and the understanding that this person in your life is up against a battle that they will likely face for the rest of their days. Researchers are working towards a cure, but in my heart of hearts I truly don’t know if that cure is going to happen in my lifetime. I try not to focus on a cure, but rather have hope…and be thankful there are awareness weeks like this that give these diseases the attention they so deserve.

I am celebrating this year because I’ve gone 15 months without a mehospitalization and I’ve been blessed with a smooth pregnancy thus far.

I am celebrating this year because this blog allows me to speak out for others who may be ashamed or feel alone.

Most of all, I am celebrating Crohn’s and Colitis Awareness Week with the hopes of reaching those who have never heard of Crohn’s or ulcerative colitis before, and give them the tools and understanding of how to be an IBD advocate themselves. Even if you don’t have either disease, you can be a part of this effort.

Start the conversation with friends and family. Talk to your state legislators. Raise money to help fund research and find a cure. Wear purple to support a friend or family member the week of Dec. 1-7. Share a post on social.

To learn more about how you can make a difference check out:

A time to be grateful and show gratitude

For as long as I can remember my family has participated in a Thanksgiving tradition that’s become something special. Each year—we all take a moment to write down what we’re thankful for. Some people write bullet points (Dad!)…others (like myself) are known for our essays (big surprise). We read them out loud after the Thanksgiving meal. Then, my Auntie Gail compiles them into a journal. It’s a time to show gratitude for all we’ve been blessed with the past year, a time to look back at loved ones entries who are no longer with us, and a time to see how life’s experiences and challenges have shaped us into the people we are today.

It’s a tradition that’s near and dear to my heart and something I look forward to continuing with my children in the future. I highly recommend it if you’re looking to start a tradition with your family! Normally, we wait to share our ‘Thankful List’ until the actual holiday—but I’ll give you guys a sneak peek.

When I think of 2016, I’m thankful for some of the most magical moments of my life and for several family members and friends who’ve shown me what it means to be strong. This past year, I celebrated an amazing engagement and had a dream-come-true wedding—getting to spend the rest of my days with Bobby is the best journey I’ve ever been a part of. Planning the wedding and working with my parents to create the dream day are memories I’ll always hold close to my heart. Getting pregnant and finding out we’re having a little boy has been nothing shoimg_4936rt of incredible. I am so thankful for this blessing and can’t wait til he joins our family.

I’m thankful that for the first time in five years I didn’t have to visit the emergency room or be hospitalized due to a Crohn’s disease flare. Until your health is taken from you—it’s easy to take those feel good days for granted. I’m so grateful the resection surgery I underwent in August 2015 helped alleviate so much of my daily pain and gave me the quality of life I’ve wanted for so long. If it wasn’t for the surgery, I doubt I would have reached remission and been able to get pregnant when I did.

I’m thankful for the special bond I share with Grandma—and that she’s going to soon be a Great-Grandma. I’m thrilled she was able to witness her beloved Cubbies finally wiimg_4830n a World Series. Getting to call her and hear the excitement in her voice the night they won and surprising her with the baby news are moments I will cherish for the rest of my life.

Living away from home—I’m thankful for my wonderful in-laws. The Hayden family has taken me in as one of their own and it’s been so fun to make so many memories through the years.

When my good friends, Joe and Julia, welcomed their baby girl Jade into the world February 25—they were faced with many unknowns as she was born with a heart defect. I’m thankful Jade is now in a rehabilitation facility, rather than the hospital and hope and pray she continues to make jade1strides so she can come home for the first time this winter or spring.

My Aunt Judy who passed away from ALS in January and my cousin Erin who endured a massive stroke in June and continues to fight each day—taking 50-60 pills, undergoing rehab and facing the unknown. Both of these special ladies have become heroes to many. Their battles provide perspective on what it means to be strong. I’m thankful for our special bonds and that Erin continues to amaze us all with her grace and strength.

I’m thankful my cousin Bill continues to live out his dream of being a motivational speaker, inspiring people across the country and world with his experiences as a two-time heart, and first- time kidney recipient and that I had the opportunity to hear him speak this year. 

My Godson Graham turned five this week. He is truly a light in my life and I adore him more each and every time I get to see him.  I was blessed with the best “Nouna” (Greek for Godmimg_5266other) and love knowing that I am continuing that tradition of closeness with my little guy.

One of the highlights of the year was watching my brother Greg  and cousin Carissa train and complete the Chicago Marathon to spread awareness for Crohn’s Disease and ALS. Their dedication, focus, and determination were incredible to witness and something I will always

I feel so blessed to have such wonderful friends—from people who I met growing up through childhood and college to different TV markets and St. Louis. No matter the distance and the time that passes it’s comforting to know we can all pick up right where we left off. Several of my close friends experienced health complications with their babies and children this year. Whether it was staying in the NICU for weeks or needing open heart surgery, each of my friends and their little ones showed such resilience through the unexpected. I’m grateful Andrew, Graham and Cody are all home and healthy now. 

I have to give a Shout Out to my little guy Hamilton James. I can’t believe January is seven years since I brought him home from the shelter. He’s brought me more joy than Iimg_5177 ever thought imaginable from a pup. He’s already resting his head on my belly and anxiously awaiting the arrival of his baby brother. I have a feeling he’s going to be very protective of him! I’m thankful for his health and daily cuddles.

I’m always thankful for family and especially appreciative of the importance of it as we prepare to welcome another “Sparacio/Hayden” into the bunch. At the end of the day, all we truly have is our health and our family. I love knowing our little guy is going to be surrounded by so much love. 

Lastly, I’m thankful for this blog and all its readers. It took me 11 years to muster up the courage to start it—and the experience has been cathartic for me and hopefully for you, too! Your feedback, words of encouragement and outreach since I started sharing weekly articles in July really does my heart good. Receiving messages from fellow IBD’ers across the world has been humbling and shown me the power of the written word.

I hope during this week of “thankfulness” that you all take a moment to reflect on the good, the bad, and the miracles that brought you to where you are today. I promise that pausing to think about what you’re thankful for will leave you with a grateful heart.

Pregnancy & Crohn’s: 20 weeks down, 20 to go

As a soon-to-be, first-time mom with a high risk pregnancy due to my Crohn’s disease, this journey has been extremely exciting and the greatest blessing I’ve ever experienced. But, despite how smooth it all has gone so far (knock on wood), the experience for any new parent comes with its fair shares of questions and concerns.

As my belly gets more and more like a basketball it mentally gets more and image1-14more difficult to administer a biologic injection into my thigh. When one of my many pregnancy apps recently let me know that “baby’s intestines are forming today”…I couldn’t help but wonder if they will be healthy throughout his life, pained with the worry that I could pass along my chronic illness to him. Anytime I feel a cramp or a pain in my abdomen I stop and try and decide whether it’s pregnancy related or my Crohn’s acting up. Let me tell you, round ligament pain feels eerily similar to an average day of Crohn’s pain! My GI has assured me that it’s my body acclimating to the baby and making room for him.

On Friday (Nov. 11), my husband and I got to see our little man for the 20 week anatomy scan. It’s truly such a miracle to see how he’s developed since the start and to not only see him move but also feel the flutters of his little body for the first time this past week. We were relieved to hear he is growing as he should and looking healthy as can be.

As the weeks go by I keep praying that I won’t have any complications with my disease process when I hit 25-30 weeks. My high risk OB warned me that’s a pivotal time when for some reason things can take a turn for the worse. I also hope that if and when my next flare strikes that Baby Hayden is here—and not still needing to grow and thrive inside of me. While there’s a lot of talk about postpartum flares around the 2-3 month mark, as much as that’s not ideal…it doesn’t scare me. I can break out the big guns and take all the IV drugs I need to heal if that’s the case. I just don’t want to have to do anything that could possibly harm or img_5210stress the baby.

My husband always reminds me that there’s no reason to worry—until you actually have a reason to worry. I wish I could be that calm all the time…but he’s right. There’s no sense in getting all stressed over something that could maybe happen, hasn’t happened yet, or is completely out of your control. Whether you have a chronic illness or whether you’re completely healthy, we’re all on the same playing field when it comes to not knowing what tomorrow will bring. All we can do is celebrate the daily joys we experience and have confidence that there’s a bigger plan in play for us all.

The recipe for strength: Courage + Resilience = Triumph

We all have moments in our lives that are impactful, memorable, and challenge us to our core. I recently had one of those moments while attending a Tedx Women’s event in St. Louis. The speakers were all phenomenal, but one in particular really struck a chord with me. Her name is Anne Grady. Anne’s teenage son has severe mental health issues and she’s a cancer survivor. To say she’s encountered her fair share of difficult days and trying times is an understatement.

I asked Anne this week what advice sheanne-grady-headshot would give to those battling chronic health conditions. She said, “Every day is another chance to practice. If you don’t get it right one day, give yourself permission to be human and try again the next.”

A few “mantras” that have helped her: “it is what it is…but it will become what you make it, all I can do is all I can do, and you got this!”

Anne’s presentation centered around an equation: Courage + Resilience = Triumph. As she puts it—Courage is the ability to do something that you know is difficult or dangerous. It’s the mental or moral strength to persevere and withstand danger, fear or difficulty. She went on to explain that Resilience is the ability to recover from or adjust easily to misfortune or change. It’s our ability to get back up after we get knocked down.

Whether you live with a chronic illness like Crohn’s disease or not—we all experience some form of pain or discomfort through our lives. It’s the painful memories and trying times that really shape us into the person we are. Courage is not about the absence of fear or difficulty—it’s using the tough times as a catalyst to help us grow strong enough.

The black and white photo above signifies one of the happiest moments of my disease journey thus far. I was out to lunch with my Mom and now husband celebrating post-colonoscopy. For the first time in more than nine years I was told I was in “remission.” Sadly, ten days later I was hospitalized with a bowel obstruction. Even knowing the turn of events that occurred not long after the picture was taken, it’s still a moment of pure joy that I will always remember.

Anne also shared a great quote from motivational speaker Mary Ann Radmacher, “Courage doesn’t always roar—sometimes courage is the quiet voice at the end of the day saying I’ll try it again tomorrow.”

I love this quote because it speaks to so many of us who day after day battle chronic pain and the unknown. It’s overwhelming when you have the stress of a chronic, lifelong illness. That quote serves as a reminder that some days are going to be harder than others—and sometimes our spirit may break—but we always have the ability to bounce back and strive for feel good days.

Speaking of bouncing back—Anne brought out one of her favorite childhood toys on stage—a bop bag and explained how she’s come to appreciate that we’re all a little like a bop bag, in that when life knocks us down, we get back up.

Anne stood next to the bop bag and punched it after each sentence…

You spill a cup of coffee on your brand new shirt… your boss is furious at you for missing a deadline… your partner says they cheated on you… hitting the bop bag harder doesn’t change the outcome—it just takes a little longer to bounce back.

Living with Crohn’s can be exhausting, disconcerting, scary, and heartbreaking—but it’s important to try and find strength through your struggles. When we make it through a difficult time it’s called “post traumatic growth”—while we can’t see it at the time, we’re able to look back with perspective and learn from it.

When I was hospitalized and told I would need 18 inches of my intestine out in July 2015—and the doctors sent me home for 10 days to build up my strength—I have never been more scared in my life.  My fears of surgery, the countdown to returning back to the hospital, and the unknown of whether the surgery would bring me the comfort I yearned for was overwhelming. But looking back—I wouldn’t change a thing. What was one of the hardest periods of my life ended up shaping me into a much stronger and healthier person.

It may seem easy to talk about courage and resilience during a calm time in your life—it may feel like it’s a whole different beast when you’re in the thick of the storm. The key is having gratitude for not only yourself, but others.

As Anne said, “Oftentimes when I’m sad, frustrated or disappointed…it’s because my expectations and my reality are out of alignment. Most people are doing the best they can. People don’t wake up and think—how many people can I disappoint and frustrate today? If you lifted the rooftops off all our homes—you would see we’re all dealing with something.”

When the going gets tough—try your best to recognize what is good in your life and give those around you the benefit of the doubt. It’s a powerful way to build resilience. The next time you’re faced with adversity—don’t run from it or let your emotions get out of control—instead think of it as an opportunity to practice resilience and courage to help you triumph.

You can learn more about Anne Grady by checking out her website: