The power of assuming positive intent with chronic illness

August 20, 2018August 20, 2018Leave a comment

When someone questions how you manage your illness, or seems to belittle your patient experience, it’s easy to get combative and think the worst. But, recently—while on Twitter, I saw a fellow patient advocate and friend of mine respond to a tweet by saying “Assume Positive Intent” (API). This is the first time I had ever heard of the concept. It intrigued me immediately. Like most people, sometimes when words are said or actions are made—I immediately jump to conclusions and internalize what I think the person meant. Part of this is being sensitive and part of this is life with a chronic illness. There aren’t a whole lot of “safe spaces” for those of us to feel understood and connected with.

Social media allows complete strangers and even those close to us to be keyboard warriors. People often feel like they can hide behind a screen and be hurtful. At the same time, just like with texting—posts on social media can be interpreted incorrectly. Rather than lash out or get defensive, take a moment to pause, gather your thoughts and remind yourself that most people wake up each day with a desire to live life in a positive way and do good in this world.

By not getting caught up in others’ actions and intent—we’re freeing ourselves of the stress that can be a key trigger to our inflammatory bowel disease and that has detrimental effects on our mental health. You will feel empowered simply by taking a moment to think about how you’re going to respond to someone else. You can’t control others, but you can control how you feel and how you react.

No one is perfect. We all make mistakes. At the end of the day, by giving others the benefit of the doubt—you’re able to change the way you approach conflict and you’re able to rid some negativity from your life. I’m not saying never stick up for yourself and let everyone treat you how they want, but use this strategy as a way to handle your personal relationships and how you respond to others. It will say a lot about your character and make you feel in the driver’s seat, at a time you normally may feel out of control.

So, here’s my challenge to you. The next time you feel a guard go up or when you feel disappointed by another person’s words or actions—assume positive intent. As someone who’s battled Crohn’s disease for over 13 years, I constantly find myself needing to take a step back and remember that the only person who’s lived my journey is me. It’s up for me to tell my story. It’s up for me to share it. It’s up to me to communicate to those when my feelings are hurt or I’m disappointed. But before I jump to conclusions, I need to assume the other person is trying to help me or learn more about my experience—rather than ruin my day or hurt my feelings. API all day, baby. Try it. Trust it. Live it.

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.

“Byrd’s” of a feather fly together: Advice from a fellow IBD advocate

April 30, 2018Leave a comment

Feelings of isolation, fear and embarrassment. Chances are, if you battle inflammatory bowel disease you’ve experienced all of these feelings upon your diagnosis. That was the case for Byrd Vihlen, a 31-year-old from Georgia, who was diagnosed with ulcerative colitis at the age of 26. Fast forward three years and her diagnosis changed to Crohn’s Colitis.

Byrd recently won the first-ever Lights, Camera, Crohn’s Instagram giveaway. The connections we make along our patient journey empower us to be stronger and face our illness head on. Check out this interview that sheds light onto Byrd’s brave battle against IBD.

NH: What symptoms did you have that led you to know something was wrong?

BV: “For about a year, I was having digestive problems (seeing occasional blood in my stool, chronic constipation, and bloating). I thought it might have been a milk/diet sensitivity, so I scheduled an appointment with a GI, and he immediately advised me to get a colonoscopy. I was really scared and didn’t have enough information, so I cancelled a few days before the scheduled procedure. It wasn’t until almost a year later (after a few weeks of antibiotics for sinus problems) that I realized something was horribly wrong. I started to bleed a lot, was in severe pain unlike anything I had experienced before, and had extreme urgency.”

NH: How has your disease changed your perspective on life?

BV: “Before I got diagnosed, I would easily get caught up in the plans for what I thought my future would and should look like. Being chronically ill makes you slow down, loosen the control of your life that you thought you had in the first place, and focus more on what’s going on today–because most of the time, you’re fighting just to get through the day. It makes you aware of the little things that you may have been too busy to see before, like people trying to hide their suffering and struggles. I’m thankful IBD has opened my eyes and given me the gift of true empathy. That empathy has led me to crave a deeper understanding and genuine connection with friends and loved ones. It has also shown me the true strength in others, and I am constantly humbled by the selflessness of my sweet husband and forever soulmate.”

NH: What advice do you have for those who are newly diagnosed with IBD?

BV: “Finding the right team of doctors, get referrals and read online reviews. When you do find a doctor you trust, you still need to be your own biggest advocate and use your voice. Don’t be scared of asking questions and calling them too much–only you know when something isn’t right with your body. Connect with more seasoned patients and ask for advice, there’s a lot of overwhelming information on the internet, so it’s nice to receive firsthand experience from people you know. Your new “normal” is going to look a little or a lot different; it will take some time to adjust to that. Try not to compare your new energy level to your old, your body is fighting a hard battle and you’re doing the best you can. If your energy/activity level is more limited, plan accordingly. Choose wisely who you want to spend your time with and what you want to do – soak in and cherish these times.”

NH: What inspired you to share your patient journey with IBD on social media?

BV: “After diagnosis I was feeling isolated, scared, and embarrassed–like I was alone in the pain. I wanted to tell others about this huge life-changing battle I was beginning to fight, but realized that most people are uncomfortable talking about chronic illness in person. I had a desire to be seen, understood, and wanted to connect with others going through a similar journey. I then discovered the incredible Instagram community waiting for me and loved that as an artist I could creatively tell my story in a visual way.”

NH: How does support from others in the IBD community on social media help you push through the difficult days?

BV: “Connecting to others who are fighting gives me strength in knowing that I’m not alone. People sharing their vulnerability is beautiful and it warms my heart. Whenever I am having a really difficult day and see a fellow warrior saying they can relate, offering words of kindness, or that they are having a hard day as well, you can feel that genuine connection and know that they truly mean it.”

You can connect with Byrd on Instagram and follow her patient journey by following her here: @byrdvihlen. Stay tuned to my Instagram page (@natalieannhayden) for future Light’s, Camera, Crohn’s giveaways!

Taking care of yourself and your sick child, while battling IBD

April 23, 20181 Comment

It’s never easy to see your baby under the weather. It’s a hopeless feeling when the only way they can communicate is by crying or acting differently. It’s difficult to manage your own chronic illness and keep yourself from spiraling out of control, as you worry about the well-being of your little one. It’s been a rough few days in the Hayden household—our almost 13-month-old son has been battling days of hives and an allergic reaction that we can’t seem to pinpoint.

The perplexing nature of his health and the unknown of what the next hour will bring, is reminiscent of life with Crohn’s disease. Trying to manage symptoms to bring comfort, the mystery of what’s sparked the problem and the emotional rollercoaster that goes along with it.

As an IBD mom, my focus is solely on getting my son to feel better. But, it’s difficult to take this on as you battle your own disease that preys on stress and worry. A disease that tends to surface when you’re going through difficult times. A disease that tries to distract you from the task at hand. It’s been exhausting to carry my son back and forth with me to bathroom as he crawls around and pulls on the toilet paper. As I feel burning sensations in my abdomen at the end of the day, the internal conversation of what could be happening within my own body consumes my thoughts. I can’t help but worry that I can’t go down. I can’t allow my disease to flare when my family needs me most.

I’m going to pause now and say something to all the moms and dads who have children with a complex medical condition. A condition that requires daily care, attention and worry. I simply can not imagine all you endure. Reid has hives. We’ll get to the bottom of it. We’ve talked to the pediatrician, gone to urgent care and have plans to see an allergist. But this reality is NOTHING compared to what so many families face every day. So, the last thing I want to do is sound like I think I have it so bad—because trust me, I keep everything in perspective and know I’ve been blessed with a healthy baby. My goal is to provide insight into motherhood with IBD and the challenges it can present at times.

As we endure life’s unexpected ups and downs—it’s imperative we listen to our bodies, get as much rest as possible and stay on top of disease management. As most mothers do, we tend to put our needs to the wayside. But, in doing so, you set yourself up as an easier target for your disease. It’s a difficult balance, but managing your own illness still needs to be a priority. When you have a spouse and children, your IBD is not just about you, but your entire family. Ask for help when you need it. Take your daily medication and stay away from trigger foods that can ignite additional symptoms. Run an errand by yourself. Take a long shower. Give yourself time to process the stress you are going through and remember to breathe.

As an IBD mom, by taking care of myself, I know it’s part of how I take care of my son. He is completely dependent on my husband and me. If you lose sight of the importance of caring for yourself and doing all your can to control your disease, it will come back to bite you in the ass. Literally and figuratively.

I’m only 13 months into motherhood. Each day is a learning experience. Much like my initial diagnosis of Crohn’s disease nearly 13 years ago, I know I’ll continue to grow and find comfort in my new role. Navigating unknown waters and experiencing illness within your child is all part of it. No matter how many years go by, as parents, we’ll never be experts, but we’ll continue to evolve and discover what works for us personally and as a family.

Find the balance. Use your voice. Your journey as a patient has prepared you for motherhood in ways you never thought possible. Trust your mom gut. As women with IBD, there will be difficult days when the brain fog, fatigue and pain overwhelms you and you have to push through to care for your child. But, there will be many more days where you feel strong and happy—and your child will look up at you with love in their eyes and a smile on their face and remind you that you’re the best thing in their life. Hold on to the feel good days, the magical moments—and know that while the tough times in parenting and as a patient are draining, they are fleeting.

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Tag: colitis