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 short 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 win 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 strides 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 Godmother) 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
remember.

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 I 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.

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 more 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 stress 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.

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 she 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: http://www.annegradygroup.com/.

Time and time again you hear it—are Irritable Bowel Syndrome (IBS) and Inflammatory Bowel Disease (IBD) the same? Or people say—I know someone who has IBS, that’s the same as Crohn’s, right?! I’m here to help set the record straight. Although the two disorders share similar names, they have distinct differences.

When you hear of IBS it’s classified as a functional gastrointestinal syndrome, which means there is some type of disturbance in bowel function. BUT—it’s not a disease. Syndromes are defined as a group of symptoms, in this case abdominal cramping, bouts of diarrhea, and constipation. IBS does not cause inflammation; patients’ digestive tracts show no sign of disease or abnormalities.

IBD (Crohn’s and Ulcerative Colitis) cause destructive inflammation and permanent harm to the intestines and bowel.  Crohn’s and UC are characterized as autoimmune diseases. For instance, IBD can affect not only the intestines, but can also cause arthritis, anemia, blood clots, malabsorption, weight loss, eye conditions…and the list goes on. Crohn’s can affect anywhere along the gastrointestinal  tract (from the mouth to the anus), and can result in strictures (narrowing parts of the intestine), fistulas (abnormal connections between different organs or sections of bowel), and abscesses (collections of pus) inside the abdomen or around the anus.

Since my diagnosis of Crohn’s in 2005—aside from the chronic inflammation in my small intestine associated with flare ups, I’ve dealt with anemia, malabsorption, osteoporosis, and malnourishment. In 2008 I had an abscess the size of a tennis ball in my small intestine, luckily it was alleviated by IV medication.

While IBS causes discomfort (and I’m not trying to discredit the pain people feel)… IBS rarely results in hospitalizations and treatment does not involve surgery or powerful medications, such as steroids and biologics.

According to the International Foundation for Functional Gastrointestinal Disorders, IBS affects at least 10-20 percent of adults in the U.S.—mostly women—and is second only to the common cold as a cause of people missing work! Surprisingly, it’s one of the top ten most frequently diagnosed conditions among physicians in the U.S.

Just like with IBD, the cause of IBS is still unclear. Some believe stress aggravates the condition. While some consider it a psychological condition, it is not. People with IBS also tend to have irregular patterns of colon motility (meaning that the nerve endings lining the bowel are unusually sensitive, and in turn make the gut more active).

Most people with IBS will never develop IBD. But, a person who has been diagnosed with IBD may display IBS-like symptoms. Both are considered chronic conditions, meaning the symptoms are ongoing.

All in all, it’s all about quality of life—and neither IBS nor IBD are a walk in the park. Both have their share of social stigmas. Before you associate the two as the same, be mindful of your words and how they impact your friend or family member who lives with either on a daily basis.

For further information, call the Crohn’s and Colitis Foundation’s IBD Help Center: 888.MY.GUT.PAIN (888.694.8872).

This week we are going to change things up a bit with a new, monthly Q&A feature. I am partnering up with an Instagram account known as “our_life_with_crohns”—the social media account is a great resource and allows you to interact in real time with those who are searching for a diagnosis and those who live with Crohn’s and Ulcerative Colitis.

Thank you to “our_life_with_crohns” for allowing me to respond to questions posed on the site. Before we get started—I want to remind my readers, I am not a medical professional, I don’t pretend to be. My responses are all from my personal experiences, advice and recommendations from doctors I have seen and the research I’ve discovered since my Crohn’s diagnosis in 2005.

Q. Hi! I am currently in the midst of struggling to get a confirmed diagnosis for Crohn’s from my doctor and I’ve been on prednisone for eight weeks and have felt amazing relief and would consider myself in remission, as I experience essentially zero symptoms. He wants to do a capsule endoscopy to confirm the Crohn’s now, but I’m worried it will show up negative if the prednisone has taken care of the inflammation and put me in remission. Will the endoscopy show Crohn’s or will it come back negative?

Natalie: Getting a diagnosis is a difficult part of the journey and so is being on prednisone for eight weeks. While that steroid is excellent at combating inflammation in the body—it’s not a long term solution for healing or for controlling your health issue. Long term steroid use is incredibly detrimental to the body. Unfortunately, many Crohn’s and UC patients are repeatedly put on them—but over time they take a toll. To give you an idea—I was diagnosed with Osteoporosis this year—the longest I have ever consistently been on steroids is three months. I would be hesitant to throw around the word “remission”—you may have a false sense of hope from the steroid, and the relief could be temporary. As far as the capsule endoscopy—I would also be hesitant to undergo that test. While you may be feeling better and your inflammation seems to be down, there is always a chance the capsule could get caught along the way and need to be surgically removed—especially since your diagnosis and health is a bit of mystery right now. In my opinion, your best bet is an abdominal CT scan and a colonoscopy. The doctor can biopsy cells during the colonoscopy and then you both will have a better idea of what you’re going up against.

Q. Yesterday I went to my GI and he set me up for my fourth colonoscopy and endoscopy next month. He is doing it to determine if I’m having some of my intestine taken out—and moving Remicade up to six weeks instead of seven. My question is—what should I expect from the colonoscopy? I have been lucky for five years to have nothing removed, but he said I’m really severe.

Natalie: In hearing this I’m curious about when your previous colonoscopy was? In order to determine if I needed surgery last summer, I underwent an MRA (Magnetic Resonance Angiogram) while I was admitted—rather than a colonoscopy. A CT Scan showed a bowel obstruction and then they performed the MRA to see if surgery was necessary a few days after IV steroids and antibiotics. The MRA was able to show how much inflammation and narrowing I was dealing with throughout my small intestine. I went a decade without surgery. The thought of it petrified me. While it’s daunting and not easy to endure—it will give you a fresh start and it’s the best thing that ever happened to me in regards to treating my disease. The 18 inches of diseased intestine would have repeatedly caused me pain and bowel obstructions, it’s great to know that while it’s not a cure, you get the damaged part of your digestive tract out of you (at least for the time being!) I always thought I was lucky prior to surgery—I felt the luckiest, after.

Q. I just started Humira and completed my second dosage on October 7^th. After the first initial dosage, I had extreme diarrhea after eating. I called my GI because it wasn’t normal for me. He told me it was too early for my body to react to the Humira. After the second round of shots, I’ve thrown up four times, still have diarrhea and a low grade fever. Fever has come down, but still super bad. Not sure it it’s just a really bad flare or a bad reaction. I have other symptoms as well. However, my GI isn’t much of a help.

Natalie: That’s too bad your GI isn’t being more helpful. I have been on Humira since 2008. My reaction to the initial loading dose was terrible. I didn’t have enough energy to go up the 13 stairs in my apartment, I was going to the bathroom non-stop and it looked like a weird black-tar substance. My Mom and I were really concerned and we weren’t sure if my body was responding how it should. Whenever you experience a side effect that alarms you—you can contact a registered nurse on staff at 1-800-4HUMIRA (1-800-448-6472). They like to keep track of all side effects so they’re on record and can provide you great peace of mind. Luckily, after about two months—I didn’t experience any of those symptoms. In the past 8 years, when I’m ready for an injection or after I give myself one—I experience no side effects whatsoever. Think of the loading dose as giving yourself 4x the normal dosage of medication—that’s a lot for your body to take on and get acclimated to. Every person responds differently the first time they take a biologic. If you continue to notice the fever, diarrhea, and vomiting I would continue to alert your doctor and also get a second opinion if he/she is not responding to your needs. The loading dose is the most difficult part of Humira to go through. Click here to read a previous blog post with tips to ease the pain.

Q. I have a new boyfriend and he knows I have Crohn’s but he doesn’t really know what it is. I have to admit I’m a bit nervous about explaining it to him, but I also don’t want him to look it up. Does anyone have any advice?

Natalie: I understand the apprehension, but this should be an early conversation with your significant other. You’ll quickly come to find out whether he has what it takes to be a compassionate, patient, and thoughtful partner as you battle your chronic illness. When you share the news it will shed light on his character and provide great perspective. If anything—think of this as an advantage. You can weed out the guys who don’t genuinely care about your health and well-being easily. While you may assume every friend and significant other will handle the news a certain way, each person deals differently. It can be disheartening when you come to realize that the person you really care about is absent and nowhere to be seen when you’re in a hospital bed fighting a flare, facing surgery or dealing with a new diagnosis. One of my ex-boyfriends never visited me once when I was initially hospitalized and diagnosed and broke up with me while I was being wheeled out to my parent’s car to go home. Another ex told me gas prices were too high and he preferred to fish, instead of coming to visit me when I was facing surgery with an abscess. In the moment—it hurt, but looking back I feel so grateful I was able to see that about their personalities THEN and dodge the bullet(s). When I met my husband and he embraced all my hardships and hasn’t left my side for one day or night during any of my hospital stays—I was blown away…and still am. You need to find someone who understands your health struggles, someone who is willing to be there through tough days, but also reminds you that better “feel good” days are ahead. If he wants to look up more information online—that is normal, and I wouldn’t shy him away from doing that—it’s good that he wants to educate himself. But, share how your personal disease process is—in comparison to what he may read. Every person’s disease is different. You got this! Good luck!  You’ll be so much more at ease when that conversation is behind you. While it’s not your identity you and I both know it’s a big part of who we are!

Q. Can someone tell me what a blockage or bowel obstruction feels like? Any time I put something in my stomach that’s not liquid I get what feels like bad trapped gas pains that’s between my middle rib area to my belly button. The only way I am able to get it to pass is taking 2-3 GasX tablets. I can go number two but it’s really hard to get out even after using stool softeners and laxatives because I can’t go. I have stomach pain, I’m nauseated but I’m not actually throwing up.

Natalie: Hate to hear you are going through so much pain—I know how miserable it is when you can’t eat without being in pain. That being said—a bowel obstruction is not something to be taken lightly and it’s such an unbearable pain that you almost have no choice but to go to the ER when you have one. By the sounds of what you’re describing it sounds like you’re in a flare up state and that your intestine is inflamed has stricturing that is making it difficult for food to pass through for proper digestion. I’ve had several bowel obstructions and they all present similarly. Anytime I eat I get a wave of nausea and it starts as a dull gnawing pain throughout my abdomen. The pain does not subside and carries over from day-to-day. When I notice this going on I put myself on a liquid diet at home to rest my bowels. At the peak of it all—I usually get to be in so much pain that I’m practically blacking out. The pain goes from gnawing to stabbing pains—pain level of a 10. The last two obstructions I had, I lost all feeling in my arms and legs and don’t even have memory of some things. I almost go in a state of shock from the pain and I’m unable to stand up straight. They can’t get the IV in me fast enough when we arrive to the ER, I’m always rushed back immediately—even when the ER is completely full. I always vomit and sometimes I have a fever. I’ve never been instructed to take any type of GasX tablets or laxatives—if anything I’ve always heard to abstain from using them. I would make sure your doctor is aware of what you’re going through. Also make sure you get medication that properly manages your disease process so you can have an improved quality of life.

Have a question about Crohn’s that you’d like some advice about? Email me at lightscameracrohns@gmail.com.

Inspiration is all around us—it’s not hard to find if you’re open to looking for it. While Crohn’s disease and chronic illness can be incredibly isolating and debilitating, sometimes the best medicine is to open our eyes to the world around us and recognize that many people (more like the majority) are fighting their own battles—whether visible or not.

This past week was a monumental milestone for my close friends, Joe and Julia. Their baby girl, Jade, finally left the hospital after 229 emotional days and headed to a rehabilitation bridge hospital to seek further treatment. Since Jade entered the world February 25, 2016 she’s shown not only myself, but family, friends, and strangers around the world, what it means to beat the odds and be strong.

Doctors diagnosed Jade with an incredibly rare congenital heart defect known as Pulmonary Atresia with Ventricular Septum Defect, while in utero. The condition is listed under Tetrology of Fallot. Babies born with this oftentimes have a bluish skin color, because their blood doesn’t carry enough oxygen, they have trouble breathing and eating, are extremely sleepy, and their heart requires surgical repair.

When you look at Jade, who tips the scales at only 12.5 pounds, and she’s able to muster up the strength to fight after enduring three open heart surgeries, a g-tube, a trach, countless tests, and prods and pokes…it shows there’s more to life than just your personal pain and struggles. Watching her brave through the unthinkable and overcome each obstacle is proof that miracles do happen. She’s shown us that just because one day is difficult, doesn’t mean there’s not promise in the next.

Seeing our dear friends experience the highs and lows of round-the-clock medical care for their child and how they manage to stay positive, hopeful, and keep their faith close to their hearts has been awe-inspiring to the say the least.  Nobody knows what cards they will be dealt when it comes to the health of their child or themselves. Often this can be taken for granted until your daily battles become your new normal and you have no choice but to tread on and discover how to wade through the unknown waters before you.

Jade has spent every moment of her existence under observation in a hospital setting. Unlike healthy babies who head home a couple days after birth and celebrate milestones in their nurseries and at home—she hasn’t had the chance to breathe fresh air and wake up in her beautiful sunshine filled nursery yet. Jade’s life has a unique path, but time and time again she’s shown just how resilient she is.

Even as she works on her rehabilitation—there’s no telling what her future holds. In a few months she will need to undergo a full heart repair. While no person or family should have to endure such hardship, this is their reality. As my Godmother always says, “God gives his toughest lessons to his greatest teachers.”

Jade, Joe, and Julia are a reminder to us all of how precious life is—that you never know what tomorrow brings and that we all have two choices—to think woe is me and wallow in our pain and struggles or face them head on with everything we’ve got.

You can support Jade by donating to her Go Fund Me page:

https://www.gofundme.com/prayersforbabyjade

Sending a card or letter to her and her family:

Prayers for Baby Jade
PO Box 1475
Fenton, MO 63026

Following Jades’ story on Facebook:

Prayers for baby Jade

…and by living each day with a “Jade state of mind.” This bad ass baby girl refuses to give up. She knows she has a lot to fight for and in turn she’s proven that grown adults and kids alike can look up to someone who hasn’t even taken their first steps yet. I love you, Jade—you are the toughest baby girl I know.

Well he did it. My baby brother ran the Chicago Marathon to spread awareness about Crohn’s disease. Even though I was there on the sidelines yesterday watching in amazement as he ran alongside 40,000 other brave marathoners, it still feels like a dream and is incredibly humbling. Not many people can say their sibling endured months of grueling training and hours of pushing their body to the limit… all to prove a point and make a difference.

In the days leading up to the race, I felt nervous FOR him. The day of the race—I was overcome with emotions (and not just because of the pregnancy hormones!) My brother—who has witnessed me battling a chronic illness for more than 11 years, who’s held my hand countless times while I laid in hospital beds and offered me comfort during difficult days… took those experiences and used them all for inspiration. While I ate breakfast with my family at a restaurant an hour before the race, I said a prayer for Greg and I was overwhelmed with emotion at the table—just thinking about all he was about to endure made my mind race and the tears flow.

I texted Greg: “Just said a prayer for you and it made me cry because I can’t believe you are doing this for me. Love you. You are going to be amazing.”

He responded: “I prayed and cried too. Anything for family.”

We were able to track him down at the 3 mile, 12 mile, 21 mile and 25 mile spots. Each time he passed us and slapped my hand was incredible. The hardest part was when he texted me “Hurting” at Mile Marker 15, it hurt my heart to know he was struggling on my behalf. At Mile Marker 25 we knew he was in a ton of pain. The crowds around the course were incredible—it’s amazing to see the support of the spectators and the thousands of focused runners on the race route about to cross the finish line. When we saw him that time—he came over to us, was crying and slapped my hand. I’ve never felt more proud of him in all my life. He ran the Chicago Marathon in 4 hours and 24 minutes.

The best part of all is that he did this out of the goodness of his heart. We never discussed the Chicago Marathon or him spreading awareness about Crohn’s. One day this past spring he nonchalantly told me what he was determined to do.

I think after he traveled to St. Louis last summer for my surgery, and saw firsthand how bad Crohn’s can get, he realized he wanted to do everything in his power to give hope to the 5 million people worldwide who battle this every day. Safe to say, Greg provided more than hope. He became a source of inspiration and motivation to everyone in the IBD community—and all our family and friends.

This incredible act of kindness has a ripple effect. During the race Greg’s wife was in line to use the bathroom—a girl came up and said “I hate to do this, but I have Crohn’s disease and really need to go.” Annie couldn’t believe it—she said, “My husband is actually running right now for Crohn’s disease! Please go right ahead!” While I stood at Mile Marker 25, I cheered on all the runners with “Team Challenge” shirts and the girl in front of me turned around and said, “I work for the Crohn’s and Colitis Foundation” in D.C.” I let her know I’m a fellow Crohnie. Like I’ve said in a previous article, I don’t believe in happenstance.

For those fighting chronic health conditions, for those reading this from their hospital beds, for those wondering when they’ll ever get relief—have faith there are people like my brother who are our biggest cheerleaders. You are not alone in your fight, some days will be rougher than others, but remind yourself that you’ve overcome every. single. flare. You have outdone your disease before and you’ll do it again—and the people in your support network will constantly lift up your spirits, surprise you, and remind you’re not in this alone.

A big THANK YOU to all the family members, friends and strangers who helped Greg raise nearly $2,700 dollars for the Crohn’s and Colitis Foundation! Greg, I’ll never forget what you did for me—and will use that amazing marathon experience as a source of strength for the rest of my life. Congratulations to all the runners who completed the race—especially those who focused their efforts on raising money and awareness for causes near and dear to their heart.

When you think about pregnancy—it’s truly a beautiful miracle and a bit of a mystery. It feels like a coming of age—your life and body transform to create and foster the growth of a living human being that you immediately fall in love with. Prior to experiencing this, I wasn’t able to grasp or realize how magical and worrisome this time in life can be. For those who battle autoimmune diseases and medical conditions, there’s an extra sense of wonder. With Crohn’s, whether you’re pregnant or not, the disease presents differently in every person. So when you’re pregnant, you can imagine how much more complicated that can feel for the patient and even the doctors.

Areas of wonder include: the long term side effects of medications, how past and current inflammation and disease activity will impact the pregnancy, and what happens if you go through a flare or need to deliver early, etc. One of the most common pregnancy issues in Crohn’s patients is preterm labor and low birth weight. My high risk OB told me that if a woman is going to flare during pregnancy it generally happens 25-30 weeks in, which is obviously a very critical time. Following delivery, some Crohn’s patients flare 2-4 months after the baby is born as your body gets reacclimated to life without the pregnancy hormones. In my mind—if either is going to happen… I’m praying it’s when the baby is already here so that I can endure the flare on my own and not have to worry about harming the baby in any way with IV medications.

When I was a few weeks into my pregnancy I came across a tweet from the Crohn’s and Colitis Foundation about a pregnancy study. I clicked the link, checked out the study, and emailed “MotherToBaby” without hesitation. The study is observational and is conducted by the Organization of Teratology Information Specialists (OTIS) and coordinated by the University of California, San Diego. OTIS is a non-profit organization that is dedicated to learning about the safety and effects of medications used to treat diseases such as Crohn’s during pregnancy. MotherToBaby is considered the most trusted source of evidence-based information on the safety of medications and other exposures during pregnancy and while breastfeeding.

By participating in the long-term study, I have the opportunity to interact with expert staff who have already provided me with support during my pregnancy, while also playing a key role in helping researchers discover more about the safety of medication during pregnancy and in the future. During my first phone interview I was asked if I would want to be tracked for one year or five. I chose five years because I feel that will provide a clearer picture of how my baby boy responded to being in utero while I gave myself Humira injections and took four Lialda pills a day. It gives me such peace of mind to know that he will be looked at once a year by a doctor (free of charge) until he’s in kindergarten to see if there are any areas of concern.

Enrolling in the study is super easy—it involves phone interviews during pregnancy and after birth, as well as the release of medical records from the pregnancy and the pediatrician. The doctors who participate in the study do home visits when your baby arrives, so you don’t even need to leave your house to receive medical attention.

If I can help provide insight into how pregnancy and medication coincide with one another, sharing my story is more than worth it. It’s comforting to know I am one of 100,000 women right now who participate in this study to shed light on birth defect prevention regarding disease, medications, and vaccines during pregnancy.

Interested in learning more? Call 1-877-311-8972 or email MotherToBaby.ucsd.edu to get involved.

For the first time in more than 11 years, I have a lot more than Crohn’s going on in my abdomen… I’M PREGNANT!! It’s amazing to finally be able to share these exciting words with you and offer insight into what it’s like to carry a child while living with a chronic autoimmune disease. I just surpassed the 13 week mark on Saturday and we found out Baby Hayden is a BOY! He is due on April Fools’ day.

Prior to getting married in June, I underwent a colonoscopy in May to see if I was in remission (with family planning in mind). While Crohn’s presents differently in every patient—the general rule of thumb for prospective mothers is to conceive only when you are in a remission state. If you’re flaring or have active disease present—oftentimes that can carry on throughout the pregnancy. For many—pregnancy hormones slow digestion and in turn the disease is silenced. This makes me want a family bigger than the Brady Bunch! (just kidding, Bobby!) Lucky for me, three weeks before the wedding—I was told I was in remission. I attribute my remission to the removal of 18 inches of diseased intestine in August 2015 and making the decision to go back on medication once I was healed, even though I dragged my feet at first.

While the news of being in remission was exciting to hear—I always take the results with a grain of salt. The year before I was told the same thing… and ended up hospitalized with a bowel obstruction 10 days later. All I could hope and pray for was to stay in remission long enough so that we could try to start our family after our wedding.

I described this time period as “racing my remission.” I was fearful –wondering whether we would get pregnant before the disease would strike again. On my wedding day (June 4) I was symptom free; despite all the hustle and bustle of the day…talk about a Crohn’s miracle!! Then, we were blessed to find out at the end of July that we had a baby on the way.

To say we feel elated and over the moon is an understatement, as any couple wanting a child feels when they find out they are going to be parents. It’s truly hard to put into words how fortunate we feel. Of course we won’t feel a true sense of relief until he is safe in our arms. I’ve wanted to be a mom for as long as I can remember, and I’ve always worried about whether I would out-do my disease in time to and beat it to the punch when the time was right for me.

It was such an incredible sense of relief to see the positive sign on the pregnancy test and have it all confirmed at the OB a few weeks later. While there’s no telling if I’ll flare while pregnant (a constant fear that looms over me), so far things are going great. Since I’ve been pregnant there have only been six days where I felt symptoms of Crohn’s… it’s incredible not to feel the symptoms that have been a part of my life for so long. I can only hope and pray this continues until I deliver. I traded Crohn’s issues for pregnancy symptoms, but I consider those more than worth it—especially knowing they are temporary!

As a Crohn’s disease patient and mom-to-be, you’re considered high risk. I try to look at the bright side of it all—we have three specialists watching over baby and me…and we get to see our little one through more ultrasounds!

Over the years I’ve come to realize how little information there is about women who’ve been pregnant with Crohn’s disease… or any autoimmune disease for that matter. I started this blog with the hope that I’d be able to share this journey with the public and make a difference. (We found out the news of the baby two days after the blog went live, so you can imagine how anxious I’ve been to share this update!!) Through this journey of pregnancy and motherhood, I am going to offer a voice for the women out there who are going through the very same thing and have the very same questions. Whether it’s to stay on medication, deciding to breastfeed, if you should plan a vaginal or c-section delivery, etc…the list goes on and on, there is SO much to consider.

While I don’t have all the answers of course, I will explain to you what I’m learning along the way and the reasons for my decisions. The blog won’t focus solely on this—but, I feel my experience can help pave the way for those in my shoes. In the meantime, if you have questions or topics you want me to cover—don’t hesitate sending an email to lightscameracrohns@gmail.com.

Finding a health care provider who is supportive, compassionate and understanding may sound like a no-brainer, but in actuality it may be one of the most difficult parts of your disease journey. I’ve encountered gastroenterologists on both sides of the spectrum… and boy does it make a difference. I’m  sure many of you have met doctors along the way whose bedside manner and thought process leaves much to be desired.

Ideally, you’re able to secure that patient/doctor relationship before a flare up or a hospitalization, but that’s not always possible… or the case.

Tips for finding “the one”:

• Feel empowered by your healthcare choice: Be comfortable with your treatment plan and the way your disease process is handled. No one has a gun to your head making your take a certain medication or see a certain specialist. It’s your body. It’s your choice. Do what’s best for you. Follow your intuition.
• Speak up and voice your concerns: Team up with a doctor who values your input and experiences and doesn’t group you with other patients or belittle what you know. See a doctor who makes you feel like your case matters and is unique, because it is and deserves that type of attention.
• Ask yourself this question: During a hospitalization, do you want your current doctor at your bedside?: If your doctor brings on Crohn’s symptoms because he/she makes you nervous or uneasy…that’s an easy answer and it’s time to “shop” around. The last thing you want is to feel even more out of control of your care while lying lifeless in a hospital bed. Choose a doctor who you trust in your heart is doing all they can to make you whole again.
• Be your own advocate: Sometimes you need to be assertive and push back. Educate yourself about treatments and why certain tests or medications may or may not be necessary. If you’re feeling great and don’t see the need for that colonoscopy at the moment, do what you are comfortable with and re-visit it in a few months. (I’ve done that—no issues). Nobody knows your body better than you—trust in that.
• Find a doctor who’s accessible: Many doctors understand that symptoms don’t strike from 9-5 p.m.; I’ve encountered a GI doctor and a surgeon (not affiliated) who provided their personal cell phone numbers to me. Build that rapport and confidence with your doctor. Just having that number in your wallet can bring all kinds of comfort. Leading up to my surgery in August 2015 it was amazing to talk to my GI from my hometown who’s been by my side since I was diagnosed in 2005. He called me while he was driving—his words eased my fears and confirmed I was making the right choice. Now THAT’s a doctor who cares. Wish I could clone him!
• Ask around your IBD network: Just like with many things in life—talk with friends, family and colleagues and see if they can recommend a doctor they love. Social media is a great outlet to do so. A doctor’s reputation is usually pretty spot on.

Always remember your doctor is a key player in the game—and the balls in your court to choose one who suits your needs. I’ve dealt with doctors who left me sobbing in the parking lot, feeling useless… to others who have lifted my spirits to new heights. You deal with enough as it is already, you didn’t choose your chronic illness, but you can choose who you want on the front lines to take it on with you.