Why July, my Crohn’s and I don’t mesh

Oh, July. We meet again. Each and every year I dread you. For some reason, you like to throw me curve balls—time and time again. From my diagnosis of Crohn’s, to that tennis ball size abscess, to starting Humira, and to the bowel obstruction that resulted in 18 inches of my intestine being removed. The month of July and I just haven’t meshed well since 2005.

Do you ever feel like certain times of the year, months or seasons tend to trigger your symptoms? natalieandreidI don’t know what it is about July, but that’s always been my danger zone. I always breathe a sigh of relief when August begins. Call me superstitious, but prior to getting married, I knew I could never have my wedding this month nor would I want to welcome a baby into the world. I have July’s number.

Keeping those difficult moments in the past and not allowing them to seep into my daily thoughts can be a struggle this time of year. I’ve always been one to reminisce and think about memories and experiences. I have a reputation for having a mind like a steel trap. Ask me what I was wearing, where we first met, when your birthday is…I could probably tell you the information without having to do much thinking. Sometimes that’s a nice trait to have, but it can also be detrimental. The difficult July moments in my past still feels so fresh, despite the years that have ticked by.

So how do we get passed the past? It can be easier said than done. But, here’s what I do to cope:

Get out of your head

Sure, my Crohn’s has wreaked havoc on multiple occasions during the month of July—but, out of the last 13 years I’ve also had nine good Julys. It’s easy to fall back and focus on the negative, try and think about the times your body has surprised you in a good way. If you stress and worry about the unknown that will only increase your likelihood for experiencing painful symptoms.

Be proactive

If you are noticing your disease is spiraling out of control, remedy-nsmith-stlouis-1284nip it in the bud. Don’t try and be a superhero and take on a flare yourself or fail to communicate to those around you. You and I both know exactly how it feels when a trip to the hospital is a must. Delaying the inevitable will only add insult to injury. Stay on top of maintenance medication, vitamins, exercise and sleep.

Try to place more emphasis on self-care

If there’s a pesky month or time of year be selfish and do what you need to take care of you. Does walking outside in nature help you clear your mind? Do you enjoy taking an Epsom salt bath? Reading a book by the pool? Do whatever brings you a sense of calm. Your body and mind will thank you for it.

Taking on IBD one step at a time: Getting empowered through Team Challenge

One of the many benefits of getting involved with the Crohn’s and Colitis Foundation is finding people locally who understand and live your reality. I became friends with a woman named Angie last year. facebook_1529431731870She’s a resilient person with a positive attitude. Her energy is contagious. This week, a guest post about her involvement with Team Challenge and how it’s enabled her to find community not just in St. Louis, but throughout the United States. I’ll allow Angie to take it away…

My journey began with inflammatory bowel disease began in April 2011. For me, symptoms went from non-existent to emergency surgery within a month of first waking up with cramps and diarrhea. I had been a healthy active person up to that point and I was a month shy of my 46th birthday.

I was first diagnosed with ulcerative colitis, but that diagnosis was later changed to Crohn’s disease. Due to reoccurring abscesses, my GI doctor ordered some additional tests that showed I have Crohn’s. When I was first diagnosed with IBD, I had never heard of Crohn’s disease. There was so much to learn and absorb, but I was so sick, it was hard to take it all in. My emergency surgery resulted in a total colectomy. I had a perforated bowel in 4 places. Once the surgeon opened me up, he discovered things were much worse than he expected and I had sepsis. Those early days in the hospital were hard, but I was committed to staying positive and hopeful.

One of my favorite ways to stay active had always been power walking. If I could walk somewhere vs getting in my car and driving there, that was my path of least resistance. So, getting to a point where I felt well enough to get back to exercising was a goal of mine. Ironically when I first asked my doctor when he thought I’d be well enough to power walk again, he recommend I not walk too far because he knew I’d probably need to use the restroom. In those first couple years living with Crohn’s, I was taking 20+ pills a day and probably using the restroom 30+ times a day. I was fragile and got short winded quickly, even walking to the corner in my neighborhood was a challenge.  I stayed hopeful that brighter days were ahead. I was very fortunate to have a very supportive group of friends and family around me.

Fast forward to the fall of 2015. I was feeling much stronger since being on Humira for about a year. facebook_1529431766690I saw a post on Facebook about Team Challenge and an upcoming Rock and Roll Marathon and Half Marathon that was taking place in February 2016 in New Orleans. I didn’t hesitate to sign up and commit to doing a Half Marathon and fundraising to find a cure for Crohn’s & Colitis. Almost immediately, one of my childhood girlfriends decided she was going to do the Half with me and she too joined Team Challenge. I’m not sure we knew what we were getting into, but we were 100 percent committed. Two ladies, soon to be 50, and neither had even done a 10K, let alone a Half Marathon! In full disclosure, we always knew we were going to walk, not run the Half. We might be crazy, but as they say, we were only “Half Crazy”!

Team Challenge has been one of the best decisions of my life. It has been a truly life changing experience. I am about to start training for my third Team Challenge race taking place in November in Savannah, GA. Team Challenge is a few hundred people who share one common goal, which is to find a cure for IBD. Once you sign up, you commit to a fundraising goal, but Team Challenge provides the coaching and training to not only complete the race, but to reach your goal and have fun along the way.

Race weekend is amazing! There are opportunities throughout the weekend to meet with your individual team, as well as the entire Team Challenge family. The night before the race there is an inspirational pasta dinner.

The evening is filled with tears of joy and we celebrate our combined mission of finding a cure. Some are parents running or walking for a child, some are friends and family running in memory of a loved one lost, and some are like me – a Crohn’s patient determined to not let Crohn’s hijack her life!

My advice to anyone looking to feel empowered against IBD would be to get involved with Team Challenge. I have made so many new friends and I’ve gained so much confidence through my involvement. I guarantee you’ll leave race weekend with a feeling of accomplishment and you’ll feel the love from the Team Challenge tribe that is now an extended family and support system of your own.

Click here to learn more about how you can get involved with Team Challenge.

An ode to Dads: A letter from a father of four with IBD

I’d like to give a shout out to all the dads out there who have inflammatory bowel disease, yet persistently persevere to make life happen. christian3  

I have been dealing with UC/Crohn’s for 18 years now, and in that time, I have had seven surgeries, countless procedures, two near death experiences, my colon removed, a j-pouch, my ego scared, and my relationship with God strengthened.  I’ve tried every prescription drug, had every side effect, and continue to fight the good fight on a daily basis. christianI’ve also been blessed with a beautiful wife and life partner, as well as four amazing children (10, 7, 3, and 9 months). This takes an already difficult situation, and adds more “life” responsibility as well.  

You see, as a father, you place the needs of your family and children above your own.  A father doesn’t really get a day off. And when you’re dealing with health issues that can cause daily battles, it’s easy to find yourself in a place of self-pity, weakness, or doubt.  That’s why I’m absolutely amazed to see the strength of all the dads out there that can deal with this struggle, but continue to be a dad first, push through, and ensure that “life” still happens. You see, Crohn’s doesn’t mean you can miss baseball practice, the soccer game, the anniversary dinner, or just “life” in general. Life will go on with or without you, so all those with chronic illness are heroes in my mind.   In fact, being a father of four has been the most motivating and rewarding things we could have done as a family. christian2

I can remember when I was recovering from one of my more recent surgeries, my family came in to visit me in the hospital.  Like most fathers, I felt the need to provide for my family, get back to work, I just had to get going. I just didn’t have time for this!  There are MORE than enough reasons for everyone impacted by IBD to feel defeated, want to give up, or take an easy route. My family is a CONSTANT motivation for me to keep going and keep fighting the fight. I cannot and will not let them down. I think most fathers feel that way. We are here to help shape our children, and ultimately provide the ability to learn, have fun, be kids, and eventually mold them into productive members of society.  It’s a tall order for us all, but I think men with IBD have learned to be persistent with their health battles, and that also helps us to persevere through the trials and tribulations of fatherhood.

So today and every day, I commend all of those fathers who refuse to let their disease dictate their life.christian4 Take the time to get to know a father with IBD, and you will meet one of the most courageous strong willed people in the community. As a man, we can sometimes let ourselves down because as an individual, it just impacts me. But as a father, that is not an option.  We must persist, have faith, and fight the fights every single day, so that we can continue to mold and shape our children, and provide support and guidance for our families that mean absolutely everything to us.  

We are motivated, we are strong, and we have IBD.  Above everything else though, we are blessed to be a father, and if lucky enough, a dad.  

Finding strength through your IBD tribe

Back in the fall, I had the privilege of sharing the stage with a fellow IBD advocate in the St. Louis area during a Crohn’s and Colitis event. Her name is Kelli Young. Kelli has battled Crohn’s disease for 28 years. She’s a veteran to the game, and has incredible perspective about how IBD not only shapes our lives, but dictates the kind of people we become. This week—a guest post from Kelli about why finding your tribe—an empathetic support system—makes a world of difference.

It took over a year and a half of being prodded and poked in every orifice of my body to receive the diagnosis of Crohn’s. I received the devastating news eight days before entering my sophomore year in college. IMG_1076The excitement of knowing “I’m not a hypochondriac” was overshadowed by the fear of having a “poop disease”. You see, my first year of college, I became best friends with my Suite mate. Ironically, she too battles Crohn’s. I was 20 years old, diagnosed with a disease that had no cause and therefore no cure…how can that be? Why me? What am I going to do?  I didn’t even know how to swallow a pill. I was never the sick kid! Now, I had to take 24 pills a day, which sometimes would take me an entire hour to swallow one dose, throw up, re-swallow again. Three times a day. It was as if I had entered “hell”.IMG_1077

Six month after diagnosis, I came home from college for winter break.  Tipping the scale at a whopping 75 pounds, my body was too weak to undergo surgery. For 45 long days, I received all my nutrition through an IV. This was so my bowel could rest as I prepared for a colon resection. The surgery was my only hope for living a more productive life.

What I’ve learned after nearly 30 years with IBD

Fast forward nearly three decades—and through the years, I’ve been labeled as “the complicated” patient. I’ve undergone multiple surgeries which include: three colon resections, gall bladder removal, appendectomy, countless ERCP’s and fistula repair. Can’t forget the life-saving blood transfusion I needed after my colon ruptured, causing me to lose half my blood volume. I dealt with TPN (Total parenteral nutrition)/bowel rest for each of the three surgeries. 45 days was my longest duration on NPO(no food). 30 days was my longest hospital visit. For the last 28 years, my body has had medication dumped in it.

My generation was taught differently. IMG_1078Which made my journey with the disease a little different than today. I was raised to think “only the weak complain!”  “Someone always has it worse!”  “Suck it up butter cup”.  “If you want the job done right, do it yourself”. This made me look at the situation as this was “my” disease, “my” problem and I don’t want to make anyone worry about me or feel sorry for me!  I became a master at hiding the disease and a master at hiding the byproducts of the disease.

It has taken me decades to evolve. Six years ago, I realized, I had to create a better “village” for myself. And my voice was starting to be heard. I just wanted my peeps to treat me as an equal, no matter how many bowel movements I’ve had that day. And most importantly, yearning for support and compassion, not to be mistaken for pity or despair! During my evolution process, big sacrifices had to be made. As a mother of two, I had more than just myself to think about.

The power of transparency

Today, transparency has set me free. Free from the misconception that I’m “lazy”. Free from the labels placed on me because of my thin statured frame. Free from the worry of how others view me. And free to live my life.

Today, I am able to share my journey with an audience that might share a similar experience or with an audience that has a loved one with Crohn’s Disease. I share my story, with the hope of inspiring others and showing anything is possible.

My disease has made me who I am today. It has taught me that I am strong, determined, confident and secure. kelliI’m a proud mother to two amazing children. I carried and gave birth to both of them with zero complications. I’m a business owner of a successful insurance agency, which I established 4 years after diagnosis. I didn’t allow my disease to derail my professional aspirations. I’m an active mother and manage to find time to be a room mother and Girl Scout cookie manager.

As a patient advocate, I serve on the board of the MidAmerica Chapter of the Crohn’s and Colitis Foundation, in addition to other professional boards. I value the good days! I reflect on my bad days and listen when my body tells me to slow down and get rest.

My advice to you

If you’re newly diagnosed or in the thick of the battle, it’s important that you realize… “this is your normal”. Embrace it! Accept it! Own it! Speak about it!!  Get a “village” that gives you positive support, not to be mistaken for negative attention. If I can get thru this crazy game of life with Crohn’s disease, so can you!  Don’t let the disease define you.

While I know my journey will include the daily struggles from the disease, it no longer is my hidden secret. My village knows and loves me for me. They understand the disease and ask questions to understand it better. This is not just my “problem” any more. As we all patiently wait for a cure, it is important we speak up, join together and help one another.

Finding “Hope” and grace through motherhood and IBD

Connecting with women who battle inflammatory bowel disease and juggle it all is empowering. When I came across Hope (@hopeheartandhome) on Instagram, I was immediately impressed by her upbeat, real-life look at life as a stay at home, wife and as a blogger. Weeks passed by—and she mentioned she had Crohn’s disease in her in Insta-story. I sent her a direct message because there’s so much we can learn from one another as we navigate motherhood and life in general with inflammatory bowel disease. IMG_2070 (1)I specifically was interested in featuring Hope because she’s pregnant with baby #2!

Hope is 28 and lives in Charlotte, North Carolina with her husband and two-year-old daughter, Evie. She’s due with her second baby this October. August marks 10 years since she was diagnosed with Crohn’s disease. In getting to know Hope, her name fits her to a T. She is inspiring, driven, funny and focused on living her best life—despite her disease.

Like many of us, Hope was young when she received the life-changing diagnosis. At only 17—she had her entire future before her. In November 2012, after numerous hospital stays and an abscess that would not go away with IV meds, she had surgery to remove her ileum. Unfortunately, post-surgery she faced several complications ranging from a pinhole leak, surgery to repair the leak, as well as a serious case of MRSA. Hope says thanks to her faith in Christ and the support of family and friends, she came out stronger than ever with a 7-inch battle scar to prove it! Hope has been taking Cimzia injections ever since and has been able to maintain remission.

As a woman with IBD–did your Crohn’s present any complications or issues along the way with your first pregnancy?

Hope: “I answer this with an insanely grateful NO! I am extremely blessed that my body reacts so well to pregnancy. In fact, my gastro doctor often teases me that I need to have alllll the babies because my body loves being pregnant. I say this with sensitivity, as I know it is a struggle for many women and due to surgery IMG_1446complications, the doctors I saw were pretty sure I would have difficulty conceiving; however, I am so thankful that God has given me grace in that aspect of my life. I will say that my first pregnancy was a bit of an “oops”, BUT my body was in 100% remission and I believe that greatly contributed to my success. This time around—knowing that I wanted to get pregnant, I made appointments with my GI and had blood-work, a colonoscopy, and wound up having to have an MRI to rule out any potential flare up. Thankfully, I was flare free and my doctor gave us the “ok” to try and conceive. I attribute much of our success to my remission. A healthy mom has a much greater chance of conceiving successfully in terms of Crohn’s Disease.”

How has Crohn’s impacted your role as a mom and a wife?

Hope: “Wow. This a big question! I’ve honestly never really thought about it impacting these roles of mine. I see Crohn’s as a little portion of who I am. It’s a very unglamorous and annoying part of me that I don’t like…but, it’s a part of me and therefore my story. Truthfully, I have been so blessed to have been in remission for about four solid years now, so my roles of wife/mom haven’t been altered by it, and for that I am extremely grateful. It was a long and bumpy road to get here and I would be lying if I said the thought of having a flare up doesn’t terrify me. IMG_1914It definitely does, BUT I try to live my life with as much positivity as I can and a lot of laughter. I’ve found that Crohn’s has matured me far beyond my age in years and that has helped me navigate the endless responsibilities that come with being a young wife and a young mother. I never take health for granted and I am thankful every day for the opportunity to raise my child(ren) free of feeling sick. I get fatigued faster than the average person due to Crohn’s, but I am so used to it, it’s my normal. Also, have you ever met a mom who is full of endless energy?! Nope.”

Now you’re pregnant with baby #2, first of all HUGE congrats! How has this pregnancy compared to your first one–how are you feeling in comparison, etc.?

Hope: “Crohn’s-wise I feel wonderful and am experiencing zero symptoms. Pregnancy wise I am much more exhausted this time around thanks to my full of energy little two-year-old! Second pregnancies are very different… the “newness” is gone, and you know what to expect and I haven’t had a minute to daydream about this baby as often as I did with my daughter, but that’s because she keeps me busy! We’re excited to see if a little boy or another little girl will be joining us this fall!”

What advice do you have for women with chronic illness who aspire to be moms themselves?

Hope: “Patience and prayer. God hears our every thought and I truly believe He desires to give us the desires of our own hearts. The biggest thing I have learned in my life as a Crohn’s girl is that our timing is not our own. IMG_2023We must surrender to Christ and let him lead us through the highs and the lows. If you aren’t a person of faith, my prayer for you is that you find peace in either the waiting of becoming a mom or peace in the journey of motherhood. It is not easy at all, but it is so worth it, and I pray for every woman who might be struggling to carry a baby because of this disease. It truly breaks my heart to think about that suffering. When I was pregnant with Evie, I joined a study called the PIANO study which stands for Pregnancy and Neonatal Outcomes in Women with Inflammatory Bowel Disease I answered questions during pregnancy and at birth I brought in a lab kit where we sent off blood from me, from Evie, and from my umbilical cord, to study if any of my medications got to my baby. There was no trace of Cimzia in Evie’s blood or the umbilical cord which was wonderful and a big part of why I take Cimzia, as it does not pass the placenta. But, I mention this study to share my passion to help all women with IBD reach their dream of motherhood. I crave more information about this disease specifically for those moms struggling. Know that you’re not alone and you have many people rooting for you and your future babies!”

How do you find time to focus on self-care and combat the fatigue associated with not only motherhood, but IBD?

Hope: “I have not mastered this at all, but I am trying. Working out is something I do for me…my 45 minutes of endorphins, alone time, and knowing I am fueling my body. Open communication with my husband is another thing that helps me focus on self-care. If I am feeling exhausted or just needing some time, I tell him. We must communicate on how I am feeling to fully be a team. And hey, same goes for him! I’ve learned a lot about friendships/relationships and making sure that I set my time and energy on things and in people who are truly rooting for me and my family and vice versa. Life is too short to spend it stressed out or surrounded by people who are not life-giving. That’s been a hard lesson for my people pleasing self, but, being strong in my beliefs and in who I am and what I want to put out into this world has helped my mindset and overall health tremendously.”

Tell me about your blog Hope Heart and Home. With more than 11,200 Instagram followers you must keep busy! What inspired you to start the blog? 

Hope: “This blog was originally started by my sister and I actually had my own blog, but once image1 (10)Evie was born, my blog kind of fizzled and after awhile I was missing that creative outlet. My sister was pregnant with her second at the time and we decided to join forces and it was so much fun for us! Recently, my sister has taken a step back from blogging and is pursuing different passion and focusing solely on her family, so the blog has evolved again into an outlet for me. I am an extrovert and love talking with new people/sharing recipes/getting advice/looking at the newest trends/home decor/etc. so blogging just seems like a good fit for my personality. I am a stay at home mommy first and foremost, but the blog has allowed me to have something else that’s just mine and just for me.”

Interested in connecting with Hope? You can do so by emailing her at: hopeheartandhome@gmail.com or following her on Instagram (@hopeheartandhome).

 

APPLY NOW: Lyfebulb & UnitedHealth Group launch first-ever Innovation Challenge in IBD

As patients, we have power. We have the ability to use our experiences to shed light on the constant uphill battles we face in all facets of life as we take on inflammatory bowel disease. LyfebulbXUnitedHG Summit&Award YellowWe have the opportunity to serve as patient advocates and leaders in our respective health communities and be a voice for those who suffer in silence. As advocates, we can share the challenges and the triumphs. We can articulate where the roadblocks are, where we struggle and come up with lifechanging solutions—not only for ourselves, but countless others.

This is where Lyfebulb and United Health Group come in. They recently launched the first-ever Innovation Challenge for Inflammatory Bowel Disease. The Challenge will recognize and award top patient entrepreneurs developing innovative ideas for better management of IBD using healthcare information technology, medical devices, consumer products or services. Get this—the top three winners receive $25,000, $15,000 and $10,000 respectively!

I had a chance to chat with Lyfebulb’s, CEO and Founder, Karin Hehenberger, M.D., Ph.D. about the Innovation Challenge for IBD. Karin says, her main mission is, “to reduce the burden of IBD, by accelerating the pace and adoption of innovation in the disease state, while raising awareness for the conditions.” Karin Standing -2

Karin is a chronic illness patient and advocate herself. Quite simply—she gets it. She lived with Type 1 Diabetes for nearly 20 years before she decided to share her story. Complications of her diabetes led her to need a kidney and pancreas transplant. Through these challenging life experiences, she found her passion for making a difference.

“My intense personal experiences enabled me to realize key insights. I started thinking about how many daily issues I had lived with as a person with T1D and came to the realization about how my own patient journey and professional expertise, could help drive research and innovation.”

In years past, Lyfebulb has held these types of challenges for diabetes and cancer. Past winners invented everything from a clever solution to ensure injected insulin was still potent and had not gone bad due to storage issues to creating a natural and better bone replacement device for those battling cancer who have experienced bone deterioration.

Much like those diseases, IBD impacts all areas of life. Karin believes there is still much we can do in the IBD space when it comes to awareness and education. It’s her hope this Innovation Challenge for IBD will help raise the level of attention on the complexities and challenges facing those of us in the patient community.

How to apply

You are eligible if:

  • You work on innovative ideas and concepts for better care and management of IBD using healthcare information technology, medical devices, consumer products or services; and
  • You, or a family member of loved one, live with IBD; and
  • Your idea is something other than a pharmaceutical or diagnostic innovation.

Click here to apply. The deadline to apply is Thursday, June 7 at 11:59 P.M. ET.

Judging criteria

Lyfebulb and UnitedHealth Group will gather all submissions and will review them for eligibility.

The judging panel will look for evidence in the following categories:

  • Patient Entrepreneur story
  • Degree of innovation
  • Impact on patient needs
  • Feasibility of development and implementation

Lyfebulb_April_2018_rb_0172lyfebulb_april_2018_rb_0172From the submissions, 10 finalists are selected to present at the Innovation Challenge in late July. All finalists are flown to the summit in Minnetonka, Minnesota and treated to two days of interactions with other finalists, the jury and with Lyfebulb and UnitedHealth Group employees during one on one meetings, group meetings, presentations and meal gatherings.

If you are chosen to attend the Innovation Challenge summit, you will pitch your idea in front of the jury and audience composed of Lyfebulb, UnitedHealth Group members and invited guests. Best of luck to all the applicants. As a Crohn’s patient of nearly 13 years—thank you for going above and beyond to make a difference in the lives of others!

 

The art of storytelling as a patient advocate

The art of storytelling. How do you narrate your patient journey? How do you build a relationship with others online for the long haul? Are you mindful of how your words benefit your community—and the value they possess?

I recently had the opportunity to attend Health Union’s HU Connexion ’18. IMG_9053It was an awesome event that brought together writers and patient advocates from a variety of chronic illness communities. I was there as one of the inflammatory bowel disease representatives.

There’s something special about getting to meet your online support network in person. One of the speakers at the conference, Laura Hope-Gill, discussed the power of narrative healthcare. Her words and her message were invigorating and empowering. She reminded us that there is no instruction manual or cookie cutter approach to patient advocacy. She discussed how each of our personal stories help to bring our advocacy efforts to life.

Laura said, “We are characters in a wonderful, heartbreaking story. Once you get the diagnosis—Ursula, our inner sea witch, waits to steal our inner voices. IMG_9070Instead of staying silent, remember that humans connect best at points of vulnerability. Illness gives our lives more meaning, we’ve discovered who really loves us and who our genuine relationships are.”

As a patient advocate and a voice for the IBD community, I’ve witnessed firsthand how my efforts and those of my counterparts require bravery. It’s intimidating and scary at times to put something out on the internet and await feedback. Some positive, some negative. It can be disheartening when your words seem to be falling on deaf ears. At the same time, when someone reaches out and lets you know how you’ve helped them or brought them comfort, it’s worth it. It’s that moment—when you feel heard, that you know you matter.

There is room for everyone at the advocacy table. It’s not a competition, it’s not a popularity contest on social media. Sure, “likes”, “shares” and followers may make us feel good—but, they are not a measure of the difference we are making. It’s not a competition of misery.

One of the most helpful recommendations I took away from Laura’s speech was the importance of not abandoning the storyteller. IMG_8619This was really eye-opening to me. You may wonder what I’m referring to. As a patient advocate and within any conversation you have—how quickly are you to relate to someone’s story and respond with your own similar experience? I think we’re all guilty of this. We aren’t malicious in our actions and maybe we’re trying to self-disclose to show we empathize. But, instead of responding with our own personal story—it’s imperative we listen, rather than tell. Let the storyteller guide the conversation.

By bringing a story of trauma to the surface, we are healing. Writing builds self-worth, beyond being sick. Diagnosis of any form, was the end of our normal. We grieved it. And guess what, we’re still here. Understand there is no limitation to our stories. Rather than being broken, you have the ability to be a storyteller and create a self beyond being sick. A special thank you to Laura Hope-Gill for reminding me of this and for opening up my eyes to the importance of being a storyteller in the advocacy space.

Reflecting on motherhood & Crohn’s: Year One

One year ago—my life changed in the best possible way. I became a mom. But, not any mom. A mom with chronic illness. Parenthood is daunting, no matter what, especially your first time around. IMG_6309Throw in an unpredictable, often debilitating condition and tackling the role is even more challenging.

In talking with fellow women who battle inflammatory bowel disease, there always seems to be a hesitation, a concern and self-doubt about the prospect of carrying a baby. I totally get that mentality. It’s almost inconceivable to imagine your body—the same body that brings you so much anguish—creating a miracle.

Becoming a mom one year ago restored my self love. Becoming a mom has enabled me to see all that I’m capable of, even when I’m weighed down by fatigue. IMG_8727Becoming a mom has made every poke and prod, injection and procedure less of a pain, because now I have so much more to fight for.

When I stare at that focal point on the wall as a needle breaks my skin or when getting out of bed for the day is a struggle, I immediately think of my darling Reid. The boy who changed my life, who shook my world and who shows me every single day that my illness didn’t rob me of experiencing the most perfect gift.

Mom guilt is real. If you’re a mom with a chronic illness, instead of focusing on your limitations—or when the next flare-up could happen—soak in the moments of joy you feel and the happiness your innocent sweet child displays on a daily basis. Know that focusing on your needs and practicing self-care is paramount because by feeding your soul and lowering your stress, you are protecting your health for the sake of being there for your family.

As patients, we evolve. IMG_8815 (1)As people we grow. Each chapter of our lives matters and is part of our story. Embrace the good and even the bad—because it brought you to where you are today. Pain and flares are fleeting and as we all know, so is youth. Our babies grow up so fast, we must hold the feel good moments close and not dwell on past hurt or what could happen tomorrow.

Someday, when my sweet boy is older, he will understand that mommy isn’t like the rest. But, my reids first bdayhope is he’ll realize what an integral role and life-changing impact he’s had on me since the moment I held him in my arms for the first time.

As we sang “Happy Birthday” and my son played with his smash cake, I thanked God for keeping me out of the ER and hospital for Reid’s entire first year of life. I thanked God for showing me that my patient journey is about a lot more than me, it’s about my whole family. And there’s no one I’d rather stay strong or fight for, than them.

The difference between sympathy and empathy with chronic illness

Sympathy and empathy. Two different words with very different meanings. Especially to those of us in the chronic illness community. The first nine years I battled Crohn’s disease, I kept my diagnosis as private as possible. Only close friends, family and co-workers knew what I was going through behind closed doors. I did this because I didn’t want sympathy.

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Back on the news desk following a bowel obstruction hospitalization, would you ever guess this was my first show back?

I didn’t want people to look at me differently. I didn’t want to be judged or looked down upon. I didn’t want to be viewed as “less than” by my peers. When you choose to suffer in silence you close yourself off to support, you close yourself off to empathy.

Since sharing my patient journey in November 2014 with the public, I’ve realized the power of empathy. How it feels when those close to you and complete strangers reach out to offer support, words of advice and choose to show compassion. By definition, empathy means, “the ability to understand and share the feelings of another.” The definition of sympathy is “feelings of pity and sorrow for someone’s misfortune.”

When we choose to share our story, we open ourselves up to not only support, but criticism. People who believe we are advocates as a way of seeking attention. People who try and dumb down our personal experiences because they feel we share to get pity. People who believe we want others to feel sorry for us. This could not be further from the truth.

I share my experiences with Crohn’s disease as a way to inspire and educate.

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I’ll always remember how my cousins and brother rallied around me at the Take Steps Walk in Chicago.

The last thing I want is for someone else to feel sorry for me. There is no reason to act like I have it worse than you or that you feel bad I’m not “healthy.” I am healthy, I just have a chronic disease that makes my life a little more challenging than yours. The challenges Crohn’s has brought into my life have been difficult, emotional and trying—but with each setback, comes a much stronger comeback. I am stronger and better for the trials I have been faced with.

I don’t want your sympathy. I want your empathy. I want you to reach out and see how I’m doing, because you genuinely care. I want you to show interest when I bring up my disease, rather than change the subject…or walk away. The lack of empathy and disinterest hurts more than anything. It shows you who’s a surface friend…and who is a real one.

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I was hospitalized six months into my relationship with my husband. His support was amazing from the start.

Think about how you’d like to be treated and talked to, if you dealt with an invisible, chronic illness that wreaked havoc on your body without warning. A disease that you do all you can to control with lifestyle and medication. A disease of constant unknowns.

When you conversate with those in the chronic illness community—think before you speak and please choose to be empathetic, rather than sympathetic. Your efforts may seem minimal to you, but they mean more than you know.

Colonoscopy Prep 101 : Drink it all in

I scheduled my colonoscopy in September and it’s hung over my head ever since. It’s not the procedure that’s bothersome to me, it’s the prep and the worry of the findings. This past week, it happened. I went 2.5 days on a liquid diet (which is easier said than done when you’re a stay at home mom all day) and did the prep. IMG_5348Everyone knows the prep is far from desirable and it doesn’t help when you’re famished. For some reason, this go around was especially difficult on me. I was incredibly nauseated and weak. I vomited multiple times. I could barely get it down.

Luckily, an hour before I started the prep, my mom landed in St. Louis and was able to take care of my baby for me. I honestly don’t know what I would have done without her, as my husband was at work when I needed to start the prep. MOM TIP: Have someone help you, whether it’s a friend or a family member when you have kids. It’s nearly impossible to take care of yourself during this, let alone another person!

The magnesium citrate and I don’t mix well. Even with it cold. With ice. With Sprite. With Zofran to help the nausea. Still awful. Instead of drinking the 64 oz. of Gatorade mixed with 14 servings of Miralax in one hour, it took me seven hours…and I still had about 8 oz. left behind. The morning of the procedure I was supposed to get up three hours before we left for the hospital (3:30 am) and take 10 oz. of magnesium citrate. I woke up with stomach pain at 3, attempted with the prep again…and failed. I gagged the minute it touched my lips. Let’s just say I was not too confident in my how “cleaned” out I was going to be. In the nights leading up, I started to fear inflammation or issues that would change my disease course and plans for future children.

I turned to Instagram for some tricks of the trade when it comes to prepping for joyous colonoscopies and came away with some helpful tips I thought I’d share:

  • If you deal with nausea, ask your GI for a prescription of Zofran going in.
  • If magnesium citrate doesn’t sit well with you, see about taking over the counter Senokot tablets (typically four tabs in the evening and four tabs in the morning).
  • Keep the prep very cold, use ice and a straw.
  • Swish around apple or white cranberry juice and spit it out in the sink if you’re getting sick of the taste.
  • Have some diaper cream, A&D ointment and baby wipes on hand to ease the burden on you bum.
  • Use shot glasses.
  • Lemon popsicles (anything but red or orange is allowed), same goes for Jello.
  • Bone broth or chicken broth.
  • Plan that first meal as something to look forward to. Eyes on the prize, FOOD!
  • Gummy bears—just steer clear of the red and orange ones.
  • Have a good book, a fully charged phone and some magazines on hand.
  • Clean the bathroom beforehand, you’re going to be spending a lot of time in there.

IMG_5372As I sat alone in my hospital gown, waiting for the IV and the procedure I had a few moments to think, pray and reflect about my patient journey. My husband Bobby came back to see me, held my hand, kissed me a few times and I was whisked away. I woke up to the best news! There were no signs of inflammation or active disease and my streak of “remission” continues. I put that word in quotes because I am always hesitant, as my symptoms always come out of left field and blindside me. For now, I am going to bask in this celebratory moment, enjoy every feel good day and take in the relief of knowing I’ve gone through another colonoscopy and passed with flying colors!