To the person who doesn’t want to see me smile as I battle Crohn’s

July 23, 2018July 23, 20188 Comments

Today marks my 13^th anniversary with Crohn’s disease. Lights, Camera, Crohn’s: An Unobstructed View, is two years old today! It’s a big day. Lots of reflection and bittersweet emotions. It’s always difficult to know how to handle an anniversary of a chronic illness diagnosis—is it a celebration? Is it a remembrance of what was? Is it all the above? For me, I like to think about how far I’ve come since July 23, 2005. How my perception of life, people and my own personal strength has grown, changed and evolved, thanks to my disease.

Since I started sharing my story in 2014 as a patient advocate, I’ve really put myself out there. I’ve been vulnerable, honest and haven’t minced my words. I’ve been fortunate to have speaking opportunities, videos, conferences and feature stories. While that is all wonderful—it also puts you in a space and a place where complete strangers—who have no idea what you’ve endured, can pass judgement and make claims about how you choose to take on your illness.

This past week—I was surprised by a comment on Facebook, written on an article by Health Central that highlighted my patient story. Like many people on social media, rather than read the article—they reply to the title or the pulled quote in the caption. The featured image from the story is one of me smiling outside my home. The comment on the article: “Crohn’s sucks. Why don’t you show what a real sick person looks like, instead of a happy smiling one???? Just saying—nothing happy about this crap.”

This really took me aback. This felt like a slap in the face. This comment hurt me. Obviously, she didn’t read the article or she would have known about all my hospitalizations, surgery, and rollercoaster of a journey. But to flat-out judge a fellow patient who lives with this debilitating disease and demean me for having a positive attitude…and smiling (God forbid!). If it weren’t for my attitude and the way I approach my Crohn’s disease, I never would have accomplished my dreams of being a television news anchor. I never would have trusted a man with my heart and gotten married. I never would have become a mother and gotten pregnant again.

If there’s anything I’ve wanted you to take away from my blog and my journey, it’s about finding the power of positivity in your experiences and seeking the good that still exists in your life, despite your disease. If you want to think woe is me and suffer all day long on the couch…that will be your life. If you choose to smile and show Crohn’s who’s boss, than no matter what obstacles and setbacks come your way you’ll tackle them and fight through flares with a knowingness that better days are ahead.

As a patient advocate—I know I can’t please everyone. I know not everything I say will resonate with you. And that’s completely fine. All I ask is that you have an open mind and understand that each person chooses to take on this terrible disease how they want to and shouldn’t be called out for it. My life is not all about hospitals, IVs, pain and suffering. Yes, this past week my injection hurt so badly I was sobbing hysterically and yes my stomach was killing me while out to dinner. But you know what, those moments passed. Rather than allow my pain to rob me of a wonderful conversation with a friend—I stayed at the restaurant. Instead of wallowing in the pain of my injection and the bruise that remains days later, I had a bowl of ice cream and gave my 16-month-old a few extra high fives.

So, to whoever decided to try and belittle me on the article about my patient journey and look down on me for smiling, please know I am a real person…and I am sick. But sick doesn’t come first when I think of who I am. It’s a part of me. It’s not all of me. That’s how it will always be, no matter what. And one thing I can promise you—now and in the future, it will never stop me from smiling.

The story behind the announcement: Celebrating our rainbow baby

July 16, 2018July 16, 20182 Comments

On Mother’s Day we received the best news. I woke up, took a pregnancy test and found out our little rainbow baby had arrived. Two months prior, I endured a miscarriage. It’s something I don’t talk about often, but something that still stings.

Mother’s Day 2018-the day we found out we were pregnant.

Ironically, I would have been 13 weeks on Mother’s Day. We had planned to make the news public on that day. God had a different plan for our family and brought in new life that day instead. Each time I say “baby number 2” I hesitate, since it’s actually baby number 3.

For me, miscarriage was worrisome, because I didn’t want the stress or grief to throw my Crohn’s out of control. I didn’t want to jeopardize my health for the next pregnancy or for my family. I hesitated in whether to share about this experience, but know my words will help to shed light on something so many women go through, often in silence. As a chronic illness mom of a 15 month old son, I not only want to share the happy times, but also let you know my days are not all sunshine and rainbows. If you are reading this and yearning for a baby, know my heart is with you. If you’re concerned about your body that’s stricken with a chronic illness creating life, you are not alone. When you see a pregnancy announcement on social media, understand there may be a backstory you are unaware of.

Pregnancy while battling Crohn’s disease, or any illness for that matter, is a constant state of unknowns. You never know if your body is going to fail you or how your medications are going to impact your unborn child. It’s a heavy weight to hold. The symptoms of pregnancy coupled with Crohn’s symptoms are a lot to handle, especially while chasing a toddler around. The fatigue is amplified ten fold. The benefit of pregnancy symptoms is that there is an end in sight, you know you’re feeling poorly for the best reason possible. It’s so much different than chronic illness, which is never-ending.

The key for me is staying proactive with my health. Recognizing when I need to slow down. When I need to lean heavily on my husband for help and trusting that my son will be “ok” if we spend a low key day at home. I find since I’ve brought a life into this world before, I am more confident in my body and what it’s capable of. I’ve witnessed that despite taking a biologic my entire first pregnancy, my son is the picture of health. It’s my hope that’s the case for our baby girl who is due in January.

As women and as mothers, there is so much to consider when going into a pregnancy and starting a family. My hope is that you don’t allow your chronic illness to rob you of your dreams, if this is what you aspire to have in your life. I use a healthcare team approach and seek care from a regular OB, high-risk OB and my gastroenterologist. Everyone works together to watch me, the baby and the pregnancy every step of the way. We get an ultrasound once a month! I see that as a perk!

I’m so excited for what’s ahead for my family and hope and pray the second and third trimesters go smoothly and are flare-free. Thank you for all the support, well wishes and kind words. I share my story because I want to touch lives. I want to show that motherhood is possible, despite illness and that you too can find your rainbow.

Why July, my Crohn’s and I don’t mesh

July 9, 2018Leave a comment

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? I 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, nip 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

June 25, 2018June 25, 20182 Comments

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. She’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 46^th 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. I 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

June 18, 2018Leave a comment

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. christian I’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

June 11, 20182 Comments

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. The 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”.

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. Which 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. I’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.

Reflecting on two years of marriage with IBD

June 4, 20181 Comment

Two years ago today, I married the love of my life. The man who has been by my side through multiple hospitalizations, flare-ups, surgery and day-to-day management of my Crohn’s disease. Prior to walking down the aisle, we shared vows during our “first look.” Here are a few lines from my vows:

“You’re an incredible partner—you’re my rock when I’m sick and you know how to lift my spirits when I’m down. You have a way of easing my worries and bringing me clarity when I’m uncertain. Each day spent with you—is an extraordinary blessing. I feel so incredibly lucky that God brought us together and chose you to be the one person among millions who lights up my soul.”

When you battle inflammatory bowel disease, it’s a big part of your relationships. As a family, Bobby and I focus on one another, our son and managing my disease. It’s a team effort. It’s comforting to know that when I’m not feeling well or going through a difficult part of my disease journey, that I can lean on my husband for strength and support. Just this week, I was struggling with symptoms. Countless bathroom breaks. Relentless gnawing cramps that bothered me for hours. My husband always checks in on me—lightly knocking on the bathroom door to make sure I’m ok. Texting me while I’m stuck in there, bringing a smile to my face with funny emoji’s and sweet talk.

It’s the little things. The day-to-day management that many do not see and that can be easy to take for granted. Our caretakers, our main sources of support and comfort do so much—effortlessly. At times, living with a chronic illness and being the one who doesn’t feel well, can bring about guilt. It also brings out the best in us. When I’m vulnerable and need a boost, I see my husband rise up to the challenge, time and time again. I’m constantly reminded I chose to live my life alongside someone who has more compassion in their heart than I knew imaginable.

Tonight, I’ll give myself a Humira injection. Tonight, my husband will stand in front of me like he always does, cheering me on and holding onto our son, so I have a focal point of inspiration. Each injection, as I stare intently at my guys, I tell myself I need to be strong for them. I tell myself I need to do all I can to stay healthy and out of the hospital. I tell myself anything is possible with them by my side.

So, as we celebrate two years of marriage and nearly five years together, I reflect on how far we’ve come as a couple, as a family and how our love has grown as a result of my illness.

Oftentimes it’s life’s hurdles that provide the greatest perspective, the strongest insight, and the clarity that you’re exactly where you need to be in this life and that your disease is a part of you, but you are so much more. IBD does not need to rob you of love. It does not need to prevent you from getting married. And it certainly does not need to stop you from finding your fairy tale ending.

Help manage your IBD in the palm of your hand: Oshi Health launches first all-in-one mobile app

May 30, 2018May 30, 2018Leave a comment

Managing inflammatory bowel disease is no small feat. Whether it’s determining which foods and drinks are your triggers, tracking your fatigue, staying on top of medications, keeping all your doctor’s appointments in order…the list goes on, and it’s a lot. Oftentimes as patients, we have so much to juggle in our everyday life that we can lose sight of when our bodies give us signals that a flare up is on the horizon. It’s can be easy to hide behind a smile and ignore symptoms. Your normal is different than the average persons. Your pain tolerance, perspective and the way you experience life are unique. Most people don’t have to put so much thought into meal time and think of bathroom breaks as a stress.

This is where Oshi Health’s new mobile app comes in. The app features tracking, curated learning, and expert Q&A. Click here to watch a short YouTube video about all the app has to offer.

As a blogger and patient advocate, I’m thrilled to be one of the contributing writers featured on the app. You’ll find new articles from me pertaining to dealing with the diagnosis, friendships, relationships and motherhood with IBD. The exclusive content features real-life s buccess stories, easy-to-understand information on emerging treatments, and delicious IBD-friendly recipes.

Keeping track of daily factors—such as sleep, diet and exercise, along with symptoms can help us better understand the causes of our flare-ups and how to best achieve remission.

The all-in-one app’s features include:

Fresh Content: Daily doses of inspiration and information
Tracking: Short-term and long-term trends including well-being and symptom scores
Integration: Compatibility with leading fitness devices, sensors, and wearables
Reminders: Helpful notifications to stay on track with IBD wellness
Surveys: Bi-weekly progress checkpoints
Expert Q&A: Professional feedback from gastroenterologists and medical professionals
Security: Best-In-Class data privacy with state-of-the-art encryption

“Oshi is a free mobile app that empowers individual control and understanding of IBD wellness. Oshi has the potential to significantly improve lives with smart tools to manage and control Crohn’s disease and ulcerative colitis,” said Daniel Weinstein, CEO, Oshi Health, Inc. “Oshi’s easy-to-use, best-in-class tracking and insights tool will allow patients to work with their physicians to uncover hidden patterns to figure out what triggers flares for their unique bodies.”

The app’s “Ask the Experts” feature further supports your digital experience as a patient or a caregiver. A team of gastroenterologists and health professionals will provide moderated feedback on key questions. You can find answers to your questions right at your finger tips from sources you can trust.

As someone who has battled Crohn’s disease for 13 years, I’m excited an app like this is on the market. I wish I had a tool like Oshi when I was initially diagnosed. A tool that recognizes my needs and concerns. A tool that empowers me to be my own best advocate and stay on top of symptoms. This app is great to have in your back pocket as you attend doctor appointments. You can look at all your information you’ve tracked and be able to communicate clearly what your needs are and where your concerns are. We now have the power to advance our own health care and give our gastroenterologists a clear look at the back story of our day-to-day lives. It’s easy to use, intuitive design, makes managing IBD feel like much less of a chore.

OSHI is now available for download on the Apple App Store or Android Google Play.

Apple iOS: https://bit.ly/Oshi_iOS

Android: https://bit.ly/Oshi_Android

Click here for more information about Oshi Health.

Finding “Hope” and grace through motherhood and IBD

May 28, 2018Leave a comment

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. 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 complications, 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. It 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. We 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 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).

Addressing compassion fatigue as a patient advocate

May 21, 2018May 21, 20181 Comment

Every hour of every day we live with inflammatory bowel disease. Once you hear the diagnosis, it’s a part of you… every. single. moment. of. your. life. That alone—feels isolating and scary. When you decide to share your personal patient story publicly, you open yourself up to a world of support. As a patient advocate, you also become somewhat of a confidante and voice of reason for your peers in the community.

While it’s incredible to be able to connect with those who live your reality, there are times it can feel overwhelming. Personally, as a patient advocate, who’s battled Crohn’s disease for nearly 13 years, I consider myself well-versed on the topic—but, all I know, are my own experiences. IBD presents differently in every person. Part of being a patient advocate is showing support for others living your same reality. The girl in the UK who was recently diagnosed and nervous about heading off to college. The young man in Nebraska going through a bowel resection surgery. The kindergartner receiving her Remicade treatment.

Since my bowel resection surgery in August 2015, I’ve been able to manage my disease with daily medication and a biologic injection. Luckily, I’ve felt well most of the time since then, and haven’t been hospitalized since my surgery. That being said—when friends (many who I’ve never met) and strangers reach out—through email, Instagram, Twitter, Facebook, texting…you name it…round the clock…desperately asking for advice and support…my heart sometimes starts to ache with stress.

I want to be sensitive with how I word this article, because the LAST thing I want is for people to stop reaching out when they need advice or support. What I do want—is for people to recognize what compassion fatigue is…and how as chronic illness advocates and caretakers we need to be mindful of how we’re feeling and internalizing the struggles of those around us.

The overwhelming nature of compassion fatigue

When people ask me about my diagnosis, my bowel obstructions, my surgery… it draws a great deal of emotional energy, and at times, can open up proverbial wounds. I’m happy to share my patient journey with transparency and honesty. But, day after day, year after year, these conversations can be a burden. A burden because I truly worry and care about each person I talk with. Even if I’m feeling well and in remission—the disease stays top of mind and I start to question my own well-being and health.

Like everything in life, finding balance and making time for self-care is paramount. The IBD family is a fantastic community of support. I am just one piece of the advocacy puzzle. It’s all about maintaining that balance in a healthy way, recognizing when the fatigue is taking over—and knowing when to take a breath and step away. I’m much better able to connect with people when I’m recharged and energized. If I’m at the end of the rope all the time, I simply don’t have anything to give, and everyone loses.

I offer support from the bottom of my heart, but as a mom and a wife, I do need to recognize when it’s time to unplug and take time for myself. When my baby naps each morning—I spend that “break” on my computer writing articles about IBD, participating in Twitter Chats, and talking on the phone with those who want to hear about my patient experience.

Recently, my husband said we should start a new rule in our household, no phones after 8 p.m. I was thrilled with the idea. So often when we put our son to bed we resort to hanging out on the couch, with the TV on and phones in our hands. Much of that “free” time I used to spend responding to messages from those seeking IBD support. Sometimes you just need to put down the phone and recognize how important those right in front of you are. The people who are by your side every single day. Your family. Your caretakers. Show them the love and the attention they deserve. Nurture the relationships that matter most to you. Be present in the moment.

Compassion fatigue ebbs and flows. Like anyone who battles fatigue from IBD, some days I feel like I can take on the world and spend all my free moments on the phone or responding to emails. Other days it takes A LOT of effort for me to email back someone who I’ve never met and discuss why I chose Humira, how my pregnancy was with Crohn’s, etc. Time is precious. I absolutely hate not responding almost immediately to everyone who reaches out, but please be patient with me.

As part of my self-care and disease management I need to de-stress, so I don’t put my own health at risk. This article is painful for me to write—I can’t stand admitting that I am struggling to do it all. But, compassion fatigue has been something I’ve been feeling for a few months. I want to be the best advocate for others and do all I can to make a difference and show there’s so much life to be lived outside of your disease. I want you to see how much you can thrive with this disease and all that you can accomplish. I want to be the person I needed the day my world turned upside down when I was diagnosed. I want to be all the things. But it’s not possible. It’s not fair to me, it’s not fair to you.

My call of action to you

When you reach out, if it takes a few days for me to respond—don’t think it’s because I don’t care or won’t reply. I will. If you have questions about why your prednisone is making you feel a certain way or how to do a colonoscopy prep—check with your GI first. Oftentimes many questions and concerns are covered extensively on blogs and in articles—a simple Google search may give you all the information you need. Lastly, know my concern and wish to help is genuine, but there’s only so much of me to go around.

I’ve been in the hospital bed. I’ve been too weak to walk up a few stairs. I’ve been on 22 pills a day. I’ve sat on a news desk and anchored countless shows while dealing with my disease in silence. I’ve woke up on my wedding day unsure of what my disease would do. I’ve been pregnant and dealt with the fear of flaring while creating a life. I’ve done a lot as a patient and a person. So, when I’m feeling well and trying to enjoy the feel-good days that I have…that can be taken away in the blink of an eye, please understand that I’m here for you, but need to also take time for me.

I’m going to leave you with this quote from Daniel Garza, an AIDS, Cancer and Ostomy advocate. Daniel shared this eloquent description of patient advocacy during the HealtheVoices conference I recently attended in Chicago.

“We all have this fire. We’ve been in quick sand and high tides and made it to the end. Despite the doubts, after everything, we don’t want other people to go through it. We’re the coat we put on the puddle, so people don’t get their feet wet. We don’t care if we get dirty again.”

In closing, allow me to continue to be that coat on the puddle for you, but please have a little patience with me.

lights camera crohn's

an unobstructed view

Tag: Crohn’s disease