How motherhood has helped me discover I’m so much more than my IBD

We walked out of the automatic rotating doors of the hospital and the cold air hit my face. I looked up to the sky in thanks, to show my gratitude and to take in the moment. We had our baby girl in tow, our Sophia Shea. img_5915It was a brisk January morning. Tears filled my eyes as I was overcome with emotion. Our rainbow baby is here, safe and sound. Another pregnancy behind me, a pregnancy that silenced my Crohn’s disease and provided sweet reprieve from my chronic illness. It was time to take Sophia home and start our life as a family of four.

When your health is taken from you and when you receive a diagnosis of inflammatory bowel disease, life prior to illness often feels like a distant memory. There’s something so sacred and so special about bringing a healthy life into this world, despite your own shortcomings.

My Sophia, much like my sweet son Reid, are my inspiration and motivation to push through the difficult days and find strength and perspective within myself. The creation of their lives has renewed my faith in my own body. img_5886Each time I have a procedure or deal with painful symptoms, I see their faces, I say their names in my head, and it brings me a sense of calm. My goal when Reid was born, was to stay out of the hospital until he could walk, luckily that’s been the case. He’ll be two in March. Now, I have that same goal following the arrival of my daughter.

Pregnancy and child birth bring about such an amazing, miraculous transformation. You see life created right before your eyes. You experience a shift in your own identity. There’s nothing like it. There are no words to capture the emotions and the overwhelming love you feel for your children.

Finding the balance: Motherhood and IBD

17-untitled-9166Motherhood and IBD can be a difficult and challenging balance. Some days the fatigue and symptoms are so debilitating you feel like you’re falling short. At the same time, the days where you’re feeling well, remind you that you are so much more than your disease. Just because you have a chronic illness, doesn’t mean you are robbed of experiencing the beauty of life and what it feels like to have your very own family.

Women often reach out to me with questions regarding fertility, conceiving, pregnancy and what it’s like to take on parenting while battling IBD. There are so many unknowns. I know it can be daunting. img_5751It all starts with recognizing where you are in your patient journey and then determining when your symptoms and body are in the best shape to get pregnant. While everyone’s disease experience is different—the worries, concerns and fears associated with parenting and chronic illness are often the same. Always know you are never alone. Communicating these feelings with those around you, makes all the difference. Lean on our patient community and all those who’ve lived your reality.

I treated my pregnancies the same. I had colonoscopies prior to trying, to ensure I did not have active disease. Once I received that green light, I discussed my game plan with my OB, high risk OB and my GI and had monthly and sometimes weekly appointments. Each time—I stayed on my medication and vitamins from start to finish, which includes the biologic drug, Humira. I had scheduled c-sections for both. It’s all about finding what works for you, what brings you comfort as you embark on this journey and being confident in your decisions. It’s your body. It’s your baby.

29-untitled-9292When Sophia Shea entered the world January 14, 2019, our family received a wonderful gift. Between our son Reid and our baby girl, we could not be more blessed. My chronic illness has given me such an appreciation for health and for life in general. With the pregnancies behind me, I often reflect on where I started back at age 21 in 2005. At that time, in my eyes, I was Natalie and I had Crohn’s disease. There was no telling what my future would hold. Now, nearly 14 years later, at age 35, I’m so much more. I’m a mom to two under two. I’m a wife. I’m a daughter. I’m a sister. I’m an aunt. I’m a friend. And I also have Crohn’s.

 

My top 5 wishes for those with IBD

As we bid farewell to 2018 there is much to reflect on. Each year brings new experiences, relationships and opportunities. Some years leave more of an imprint on our memory and on our heart, than others. When you think back on the past 365 days what were the highlights? What were the low points?

IMG_4926For me—the past nine months I’ve been incredibly grateful to have another healthy pregnancy, that silenced my Crohn’s symptoms. I’m also celebrating 3.5 years of no IBD-related hospitalizations or ER visits! The cherry on top was the release of Citrate-free (pain-free) Humira this year! After more than a decade of giving myself the painful injection, the new formula has greatly improved my patient experience.

Here are my 5 wishes for you in the days ahead:

  1. Strength through difficult days

There’s no telling when the next flare will strike. We all know it’s not a matter of if, but when. When the going gets tough, take it one hour, one moment at a time. Try not to overwhelm yourself with worry. Go to your happy place and think back to past flares and all the hurt and pain you’ve overcome. Use the moments of your journey from the past that have tested you the most, to serve as your greatest source of empowerment. As the years go by, and your diagnosis seems like a different lifetime, use that to your advantage.

  1. Management of your symptoms

Remission is something that is possible, but there’s no telling how long it will last or for some, if it will ever become a reality. By getting your symptoms under control and well managed, whether that’s through medication, diet or both—your quality of life improves vastly. IMG_4768Celebrate the feel-good days and soak up the moments where your IBD isn’t top of mind. You have an innate sense of when your body is giving you warning signs that rough waters are ahead. Be mindful of the inner conversation going on in your head and listen to your gut. Although it tends to be our nemesis, it has a way of alerting us when things are about to get out of our control.

  1. Perspective about your experience

Use your patient journey and that of others to give you perspective. Empathize with friends and family members going through health struggles, whatever they may be. Sure, many people have it better than us, but many have it a lot worse. It’s not a competition to see who is the sickest, but rather a way of shifting our mindset and understanding that many people have struggles and we are not alone in our experiences. Like the saying goes, until you “get” a chronic illness, you don’t really “get” it.

  1. Support from those around you

Having a network of close family and friends to lean on at a moments notice plays a major role in how we take on IBD. Don’t be afraid to ask for help. Communicate the good and the bad, without fear of being judged or ridiculed. nyeblogTrust that those close to you love you and appreciate you for everything that makes you, you—including your disease. Show appreciation for your caretakers—those who live with you and are in the trenches by your side, day in and day out. Find comfort in those who allow you to be vulnerable when you need to be. Stop putting effort into relationships and friendships that don’t add joy to your life—eliminate the negativity, cut the fat, there’s no need for people who bring you down or belittle what it’s like to live with Crohn’s or ulcerative colitis.

  1. A health care team who listens

Find IBD specialists and gastroenterologists who enable you to be your own best advocate, who listen when you’re worried and address your concerns without making you feel less than or like a number. By trusting in your doctors and the care they provide you, you’ll feel much less stress about the path you are on as a patient.

A letter to my daughter, from your mom with Crohn’s disease

My sweet daughter,

In less than 30 days you will be safe in my arms. It’s felt like a long journey to get to this point with you. Much like your brother, you’ve made me feel a sense of health that I never knew was possible. Through the creation of you and your life, I’ve found a deeper appreciation for my own.

You’ve silenced a disease that has ravaged my body for more than 13 years. _F6B0473You’ve reminded me of what is possible and what I’m capable of. You’re already an inspiration to me and you don’t even know it.

For as long as I can remember, I’ve hoped and dreamed for you. A daughter. A best friend. A relationship so sacred, so unique. Words don’t do justice for how anxious and excited I am to bring you into this world.

Just like your brother, you will see me struggle some days. Not with being your mom, but with my Crohn’s disease. It pains me to think about making you worry about my health or question when my next flare up will be, as leaving you and Reid for an extended hospital stay will be so tough on me and on our family.

I never want you to feel scared or question my resilience. Instead, I want to show you how strong I am and instill a positive attitude in you from a young age. You will witness the highs, the lows and everything in between that comes with chronic illness, but trust that mama will always come out on top. _F6B0340You and your brother serve as my greatest motivation to push through the pain and be strong. You’ll see how your dad loves and nurtures unconditionally and rises to every challenge that comes my way.

Here are my hopes for you.

A kind, happy heart. Always try and see the best in others, rather than coming to quick judgement. Soak in the happiness bestowed upon you each day and light up the room with your smile, even when the going gets tough.

A confident attitude and demeanor. Stand tall and be proud of who is looking back at you in the mirror. Love yourself for all that you are and don’t let any person make you question your worth.

A compassionate, empathetic mind. Recognize the pain of those around you, and be supportive, thoughtful and caring. Be a positive light in the lives of others.

A patience with yourself and others. Understand that life has setbacks, disappointments and pain, but that God has a plan for you. Trust in it, even when the path seems daunting or overwhelming. Try and use each challenge that comes your way as a moment to learn and grow.

A strength to use your voice. Never be afraid to speak up, be heard and communicate your hopes, dreams and fears. Feel empowered by your voice and know that everything you say and think matters._F6B0313

A life without Crohn’s disease. While there are many qualities I would love to share with you—I hope and pray you stay healthy and never receive an IBD diagnosis. I will be there every step of the way, should that ever happen. I’ll be your best advocate and your closest confidant in sickness and in health, and always.

See you soon, my sweet girl. My rainbow baby. My darling. Someday you’ll know how you’ve made my heart fill with such joy and immense gratitude.

Mama

Food for thought: What it’s like to get all your nutrition through an IV with IBD

This week–a guest post from an IBD advocate who continually inspires me. Meet Sonya Goins. twibbon-profileShe is a news reporter for a community television station in the Minneapolis/St.Paul area. Sonya is also a Crohn’s patient, diagnosed with the digestive disease in 1985 while she was in college. I’ll let her take it from here:

While fighting the physical pain of Crohn’s is tough, the mental aspect is even harder.

On January 3rd, 2018 my doctor put me on TPN (Total Parenteral Nutrition), which means I was fed through my veins. All of the nutrients I needed to survive were in an IV bag and pumped through my veins throughout the day. My doctor wanted to give my colon a rest so ulcers could heal.  I endured this treatment for eight and half months.  It was one of the most trying times of my life. No food, just water, broth and on occasion, coffee.

Despite my circumstances, I named my IV catheter “hopeful.” 26677835_10155748847937819_1006971807936260031_oHowever, it took me a minute to adapt a positive inner attitude.  You see, in public I put on a good, cheerful attitude. There were times when I wanted to crawl up into a big ball and shut out the world. The first few weeks of constantly wearing a backpack full of IV fluids were very hard.  I did not like what I saw in the mirror. I was angry at my situation.  It wasn’t until I visited a pediatric Crohn’s and Colitis Foundation support group that I changed my way of thinking. Seeing young people living with the digestive diseases, and going about their lives despite their circumstances, motivated me to do better.

I had to live my new normal to the best of my ability.

The mental game of TPN

Mentally, not eating real food was very, very challenging.  Although I could not eat, I still cooked for my youngest child. The smells of the food made my mouth water, tempting me to taste what I know would make me sick. There were a few times I lived on the edge and took a sample. I paid for my mistakes—painful cramps and bloody diarrhea were my punishment.

After the first month on TPN, I knew I needed professional help if I were to survive.  So, I sought the help of a therapist.  I also prayed and meditated—a lot. 35682318_10156164555637819_6627378019424010240_n

First, I needed a distraction for when I was tempted to eat. A friend taught me how to crochet. She even purchased the yarn, hooks and beginner books to get me going.  I still cannot do a granny square, but I learned a new skill.

When times were bad and I wanted to give up, I would mentally go to my happy place—Turks and Caicos. Several years ago, I visited the Caribbean Islands. I imagined myself sitting on the pristine beaches, watching the waves crash.

The social impact

The loss of social invitations also did a number on me.  Some of my friends did not want to hurt my feelings by eating in front of me, so they stopped including me. However, I did have one friend who went out of her way and found a restaurant that served the best broth in town. We sipped on broth and caught up with each other’s lives. This was one of the highlights.

I was determined not to let this situation get the best of me. Instead of going out to eat with friends, I invited friends to go for a walk. I walked with former coworkers, acquaintances and family members.  The fresh air and good conversations did me a lot of good.

Taking steps to heal mentally and physically

Walking became my foundation. I was motivated to walk for another reason.  Before I got sick, I signed up for several half marathons to raise money for the Crohn’s and Colitis Foundation. I finished the New Orleans half marathon in March, just three months into my treatment. I have never been so proud.  I had to walk the race, but I finished. Several months later, I also completed the Twin Cities 10 mile race, and the Savannah half marathon.

My unexpected journey made me stronger mentally and physically.  I am more outgoing and more self-assured than ever before.  After all, you cannot be shy walking around with an IV bag strapped to your body.

I share my story to give others hope.

Sonya Goins is also a Crohn’s and Colitis Foundation Board Member/MN Dakota Chapter.  You can find her blog at SonyaStrong.com. She also has a podcast on iTunes and GooglePlay entitled “Conversations about Crohn’s and Colitis.”

A letter to my 21-year-old, newly diagnosed self: From 13 years in the future

This past week I turned 35. Birthdays for me are always a time of reflection on what was and excitement for what the future holds. Each year is so transformative, especially when it comes to how you handle and deal with chronic illness. natalie35bdayWhen I was diagnosed with Crohn’s disease at age 21, a month before my 22nd birthday—life had so many unknowns. I bottled up a lot of fears about how my life story would unfold and if I would be able to accomplish the hopes and dreams I had thought were a given.

This week, a letter to my 21-year-old, newly diagnosed self—from my current 35-year-old self. With time and experience, comes perspective. Perspective that I wish I had back when my world came crashing down upon me after learning I would forever have a disease for which there is no cure.

For those embarking on this journey—whether you’re the patient or the parent—you may feel like you are drowning in worry of what is to come with your lives. I hope my words will bring you comfort and the knowingness that you have a lot of life to live, and you will do just that.

Dear Natalie (age 21),

I can still see you looking at yourself in the mirror—feeling like a skeleton of who you used to be. Cheeks sunken in, eyes tired, arms covered with bright purple bruises from all the IV sticks, pokes and prods. You’re sitting up in bed, popping big bubbles with your chewing gum, trying to deal with the insomnia and ravenous appetite that comes along with taking 60 mg of prednisone. You’re thinking about how easy and simplistic life was a matter of weeks ago, graduating from college—hoping to land your first television gig as a news reporter.

Everything feels like it’s in shambles. You are perplexed about why you were dealt this hand of cards and why the rug was completely pulled out from under you, when just a matter of months ago you had the world by the tail.

Here’s what I want you to know. Nothing comes before your health. No job, no relationship, no friendship. There are going to be difficult times ahead as you figure out which people in your life genuinely want to be by your side, and which are only around for the fun, healthy times. feb13blogmainphotoIt’s a path that will bring you heartache. Significant others will let you down—you’ll be disheartened when they fail to show up when you need them most…but, then it will happen. You will meet the person who was meant to fight this fight beside you. You’ll know. You’ll see how that person loves you unconditionally and even more so, because of your illness. They will see you as so much more—see yourself the way they see you. Not some sick person. A person who has a sickness that is part of them, but far from all of them.

Professionally—you may need to take a different path that better suits your needs. natalienews2Don’t allow this illness to make you think you aren’t capable—because you are. You will surprise yourself, if you continue to be positive and find alternative ways to make your dreams become your reality. I know you’re sitting there with your huge spreadsheet of 200 U.S. cities, wondering which TV station you’ll be able to work at…and if your journalism career will ever happen. Looking back—I’m so proud of you for continuing that job search amidst your very first flare. Looking for jobs across the country, as you swallowed 22 pills a day, grappled with a chronic illness diagnosis and dealt with all the side effects and pain that is Crohn’s. Work ethic and attitude will take you far with this disease. IMG_4248You will shine under those bright studio lights.

Stop with the timelines and deadlines in your mind. You don’t need to be married and have kids by age 30. I know you think you want that, but trust in God’s plan for you and know that your future will fall into place the way it is meant to. Don’t rush yourself. Don’t feel less than just because all your friends seem to be checking off those boxes. Your time will come.

When you attend doctor appointments and when you are hospitalized be vocal. Be your own best advocate. Don’t be intimidated by the people in white coats. You know your body better than anybody else. It’s ok to cry. It’s ok to be angry. It’s ok to lash out. Have patience with yourself as you navigate your new normal and trust that the temporary hardships and hurt are just that, scary. The first of anything can be scary. FullSizeRenderThat first CT scan, that first colonoscopy, that first surgery, that first injection…it’s a lot to deal with. You’ll shake like a leaf and then as time goes on—you won’t bat an eye. You will find a strength within yourself that you never knew was there. You’ll be a seasoned warrior in no time.

What seems so foreign to you now, will soon be something you understand and can decipher immediately. Those symptoms—the pain, it’s all new now. In the future, you’ll have a good idea of what’s happening. What triggered it. How to help yourself. You won’t be as alarmed. You’ll know exactly what you need to do and when a hospital visit is a must.

I want you to know that everything is going to be alright. It’s going to be more than alright. You will thrive. You’ll beat the odds. You’ll land multiple TV gigs. You’ll fall in love. You’ll meet the one. You’ll be a mommy. IMG_6401You’ll do all these things. All with your sidekick—your enemy, but also your ally, Crohn’s. The one thing that really sets you apart. In the future you won’t keep your disease a secret, rather it will come up in conversations almost immediately, with a sense of confidence. A badge of honor. Yes, I have Crohn’s. Yes, it’s not ideal. But, yes…it’s made me sort of a bad ass. I’ve been through a lot. I haven’t backed down. And there’s so much life left to live.

You are not broken. You are not less than. This disease will take you on a journey you never imagined. Hold on tight, hang in there through all the scares and celebrate all the wonderful feel good days when your quality of life feels untouchable. And smile. Smile on the good days, smile through the bad days. Trust me. You got this. _F6B6137

Love yourself—everything that makes you, you—

Natalie, age 35

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

Today marks my 13th 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. Reader CommentThe 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. image1 (13)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. _F6B3268

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.

 

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.