6 ways to get involved in the IBD community: Advice from a fellow Crohn’s advocate

September 10, 2018September 10, 2018Leave a comment

Social media often gets a bad rap. But, oftentimes in the advocacy and chronic illness space, it’s an incredible connector. A few years back over Facebook, I came to know Linde Parcels. Linde graduated from my high school and later moved to St. Louis. She currently resides in Atlanta, where she works for the CDC and does Policy work for the division of lab sciences.

We’re 11 years apart by age, but share many of the same experiences as women who battle Crohn’s disease. We’re both passionate about using our voice to show others they are not alone in their IBD journey. This week—Linde talks about the importance of standing tall, owning your illness and getting involved in your community to make a difference.

I was diagnosed with Crohn’s Disease at the age of six. Eighteen years ago, diagnosis was difficult for pediatric patients. After more than a year of tests and declining health, my family was given an answer and a lifelong commitment to caring for my Crohn’s Disease.

I’m 24 now. I just moved to a new city for my first full-time job. One of the first things I did when I moved was plug into the regional chapter of The Crohn’s and Colitis Foundation and see how I could get involved.

I wasn’t always an advocate for Crohn’s and Colitis though. In fact, I never attended Camp Oasis because I wanted to go to “normal” camp where I wouldn’t be surrounded by reminders of my disease. I regret not experiencing Camp Oasis and making friends who “got me” when I was that age.

It took years to realize that sharing my story and spending time with people with inflammatory bowel disease (and their caregivers) could bring me so much peace, confidence, and ownership of every part of who I am, including how I was made.

Some people receive their diagnosis and jump into headfirst. They advocate fiercely for a cure any way they can. I’ve seen others resolve to live “normally” and spend many years outside of the IBD community, attempting to absorb the struggle and live their life without leaving a trace of disease.

With over 1.6 million people in the United States with IBD, and as one of the estimated 1 in 200 who have IBD, I would argue that with this diagnosis comes with a responsibility to advocate. For everyone with IBD, and selfishly for myself, I want better research. Better treatments. Better services. Better health.

And it’s not a lost cause.

Here are 6 things I’ve done to get involved that you can do too!

Take Steps

These uplifting Crohn’s and Colitis Foundation charity walks happen throughout the year, all over the country. It’s a great way to rally your friends and family to take steps by your side to raise awareness and drive research.

2. Volunteer for fundraiser events through your regional Crohn’s and Colitis Foundation

I helped gather raffle baskets, advertise, and organize volunteers for the themed Trivia Night in St. Louis three years in a row with a great planning committee. I attended with my family and friends for the past three years!

3. Follow influencers on social media and leverage your own profiles to raise awareness!

Here are some of my favorite Instagram accounts to follow:

@CrohnsColitisFoundation (stay in the know)

@rockswithsass (crystals/mental wellness and proceeds go to The Foundation!)

@Natalieannhayden (of course!)–Thanks, Linde! 😉

@CrohnsCooking (recipes for IBD)

@ileostomy_crohn_princess (model and mom with an ileostomy)

4. You can be a listening ear or a venting pal –make your availability known if you’re comfortable with someone sharing your name with others who might want to talk.

Some parents have referred me to their high school aged children with IBD or a friend of a friend. You can sit with someone during their Remicade treatment or Humira injection. A lot of college students and young professionals may not have family in town and it’s more tolerable with company. Try to be vulnerable. I openly talk about the realities of office life, dating, and farting, (yes, I just said all three of those things in one sentence).

5. Team Challenge!

I’m training for a half marathon and taking on the biggest fitness and fundraising goal of my life! I run every Saturday with Team Challenge ATL, they are the best!

You don’t have to raise thousands of dollars for research or share your most traumatic digestive adventure on social media…but for the sake of this community and for yourself, please own it. Own your patient journey in a way that furthers science and connects people. Because as much as I want to be your Crohn’s friend, I’d rather just be your friend 10 years from now.

You can connect with Linde on Instagram here: @thelindecity.

Linde is running the 2018 Savannah Rock N’ Roll Half Marathon November 3, for the Crohn’s and Colitis Foundation. She’s looking to raise $2,800. Click here to help her reach her goal!

Taking on IBD, infertility and being a triplet mom: How my college roommate does it all

September 3, 2018Leave a comment

When it comes to life, I often say I don’t believe in happenstance. Meaning, I believe everything happens for a reason. This rings true with one of my closest friendships. Stephanie and I were random roommates freshman year of college and had an instant connection. We ended up living together throughout our entire college experience, stood up in each other’s weddings and have managed to stay very close, despite thousands of miles between us since graduation.

On college graduation day in May 2005, I aspired to be a TV journalist. She had dreams of being a Physician Assistant. Both of us accomplished those goals—what we didn’t see coming was that we would both be diagnosed with inflammatory bowel disease in the years ahead (the first and only people in both our families)—me with Crohn’s in July 2005, her with ulcerative colitis in February 2009. She was working as a Physician Assistant in Family Practice when her symptoms developed. She knew the pain and bathroom habits were not normal.

Stephanie recalls, “Once I admitted to myself these symptoms weren’t going to go away, I reached out to the doctor that I was working for at the time. He contacted the GI Doc we referred all of our IBD patients to, and he got the ball rolling toward a diagnosis pretty fast! When the GI walked in the room after my colonoscopy with a solemn look on his face and just shook his head, I was devastated. I teared up. I was so fearful of the unknown, as far as what this is going to mean for me for the rest of my life. There is such a variation in the way patients with IBD can experience the disease… my mind immediately went to worst case scenario for myself.”

Stephanie’s journey with IBD and motherhood is one that is sure to inspire and provide hope to many. Along with juggling chronic illness, she also dealt with another devastating hurdle, infertility. Luckily, once she became pregnant through IVF, her ulcerative colitis symptoms were silenced.

“It was never far from my mind that while I was not pregnant, my uc was waiting quietly, like a ticking time bomb ready to go off, and that would then halt all the time, money and effort we were putting into getting pregnant. But, thankfully my uc behaved itself. We got pregnant on our first round of IVF with triplets (identical girls and a boy) who are happy, healthy and my entire world!”

Today, Stephanie and her husband have beautiful triplets who just started kindergarten. To take on IBD is one thing—add triplets to the mix… amazing!

“I’ve had IBD since day one of being a mom, so I don’t know any different! Just like when people ask me “What’s it like to have triplets?” my response is usually “It’s all I know, I didn’t have a singleton before my triplets, so this is the way I know how to be a mom!” For obvious reasons having IBD sometimes makes our mom responsibilities a little bit more challenging, but you have to figure it out and take the good days with the bad, because your kids need you!”

Stephanie says since having her kids, she’s noticed she’s much more willing to “wave the white flag” and reach out to her GI sooner when things start to go south. She used to ride out the symptoms much longer before admitting there was a change that needed to be addressed, mostly because she was fearful of having to go back on steroids. I can attest to being the same way. Prior to becoming a mom, I waited until going to the emergency room was the only option. Now, I am more mindful of listening to my body and nipping flares in the bud, because my family needs me.

“Having a chronic disease definitely gives you a new perspective. It makes you appreciate the good days so much more! And when the not so good days creep up on you, having a good support system to help you physically and emotionally is crucial! Thank those in your life who lift you up and let them know you appreciate them! When you overcome each and every not so good day, it makes you feel just a little bit stronger and gives you the confidence that you can handle the curveballs life is bound to throw at you over and over!”

Beyond grateful to call this fellow IBD warrior mama one of my dearest friends. I’m sure after reading about her journey, you can see why.

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

August 27, 2018January 3, 20242 Comments

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. When I was diagnosed with Crohn’s disease at age 21, a month before my 22^nd 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. It’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. Don’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. You 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. That 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. You’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.

Love yourself—everything that makes you, you—

Natalie, age 35

Feature photo credit: Coffee Geek

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.

Navigating IBD from age 12 to 22: How Emily landed her dream job at Disney

August 13, 2018Leave a comment

Navigating inflammatory bowel disease as a pediatric patient brings on additional stresses, concerns and worries. For 22-year-old Emily Gavol, this was the case. At 12 years old, she was diagnosed with Crohn’s disease. This week, a look into her life and how she took on the disease as a preteen, went to college out of state and landed her dream job in California with Walt Disney, after growing up in Wisconsin. My hope is that Emily’s story of perseverance, brings comfort to parents and fellow children and teens experiencing IBD as their life story unfolds.

What was it like to be diagnosed with Crohn’s disease when you were in seventh grade?

Initially it was a relief to know that there was finally an answer as to why I had been so sick for months. But it was also difficult to hear that I was diagnosed with a chronic illness that I had never heard of before. Being so young I didn’t really full grasp the severity of being diagnosed with a chronic illness.

How do you think the disease impacted your childhood and your perspective on life?

Getting diagnosed so young forced me to grow up very quickly. I had to learn to manage my symptoms while still attending school, doing homework and other normal activities. My perspective on life also changed, it became clear to me that health is something to never take for granted and appreciate it while you have it. Along with realizing quickly that the little things in life are not important. While most of my friends were worried about what to wear to school, I was just hoping I would feel well enough to make it to school. Additionally, this disease has taught me that there are many things that are out of our control and you just have roll with it sometimes.

How did your family and friends handle your diagnosis and how have they been there for you throughout your patient journey?

My family and friends were always there for me to lean on during my diagnosis and have been ever since. While I know that my parents were scared, confused and upset that I was going through this, they never let that show to me. They were and always have been the ones that lift me up when I am down, and never fail to stay by my side through all I have endured.

How did it feel to “fail” so many biologics?

Over my nearly 10 years with Crohn’s disease, I have struggled to find a medication that works for a continued period of time. When I first failed Remicade, it was frustrating because I had been getting better, then backtracked to experiencing more symptoms again. That frustration has continued and morphed into annoyance, as I have continued to fail more biologics. It is frustrating to feel like all these medications are being thrown at me to knock down this disease and nothing seems to work.

What inspired you to leave home and attend college in Minnesota, despite your illness?

Since I was nine years old, I knew that I wanted to become an Imagineer with the Walt Disney Company and work as an Interior Designer. As I got older, I knew I needed to attend a good school that would set me up for success. I researched the best programs in my area, and the University of Minnesota was the best fit for me. Their program and campus seemed to be everything I was looking for, so I wasn’t going to let my Crohn’s disease stop me from trying to achieve my dream.

What’s it like to attend college away from home, while battling a chronic disease? What roadblocks/hard times did you face?

Attending a school so far from home without a doubt was a big challenge. And there were times when I wished I would have decided to go to school closer to home, because that would have been easier. The biggest roadblock was the physical distance, because it meant a lot of back and forth travel. Especially, during flare ups. I found myself needing to make the 4-hour drive home more often than I wanted to, which resulted in the need to miss more classes. Additionally, learning to manage my symptoms completely on my own and having to adequately communicate with my medical team from so far away, was challenging at first.

How do you overcome the setbacks that come your way and not allow them to de-rail your goals and plans?

I have always been a very determined and strong headed individual. I will always do my best to achieve my goals and not let anything stand in my way. Despite, all the setbacks my disease has thrown my way, I have just rolled with the punches and kept pushing forward. I do my best and my best is all I can do.

Talk about what it was like going through the ileostomy and knowing you are getting a permanent ileostomy? How do you feel about it–why kind of emotions does it bring?

Going through my transition of getting an ileostomy was the most difficult thing I have gone through as a result of my Crohn’s disease. My health took a drastic turn and it became clear that I would need an ostomy sooner rather than later. I initially was very scared and upset that this was happening. I didn’t know what an ostomy was or anyone that had one, so I had little idea of what to expect going into it. By the time I was a couple weeks away from surgery, I was honestly ready to have it done. I had been experiencing more symptoms and was ready to have the surgery behind me and be feeling better. I was doing my best to go into things with a positive outlook and think about it as a fresh start, but this was no easy task for me. It was an overwhelming and emotional couple of weeks following the surgery getting used to having and caring for an ostomy. I am not afraid to admit that I was scared to look at it and care for it myself after my surgery. But then I realized, this isn’t going to go away anytime soon, so I had to start doing things myself. The more familiar I became with everything, the more comfortable I was and began to realize that I was actually feeling better than before the surgery. This was hard for me to admit to myself, because I didn’t want to be put in the situation of having an ostomy or needing one for the rest of my life. While I am now on the road to needing a permanent ostomy, it still has not sunk in that it will actually happen yet. And I don’t think it is going to fully sink in until that surgery happens.

You landed your dream job post college. Speak to what it’s like to live across the country, away from family and friends–while living out your dream job…with Crohn’s.

I am literally living out my biggest dream. This is something that I never thought I would get to experience, and I think having Crohn’s has made me appreciate this opportunity more than I could ever imagine. The last year has been a wild roller coaster ride. I am just thankful to be here, because there were many times where I didn’t think I would even be able to graduate last year. My family and friends have been very supportive because they know how much this opportunity means for me personally and professionally. It is hard to be this far away from my main support system, but they are always just a text or phone call away. Additionally, my providers were very encouraging to me, pushing me to continue to live my life to the fullest and not let my disease slow me down. Hearing them say that to me, was really the last push that I needed to make this a reality. Knowing that my medical team wanted what was best for me, and was willing to work with me to get me where I am today, helped give me the confidence that I could do this.

Do your coworkers/did your college roommates know about your Crohn’s? How are people towards you when they hear?

In college I deliberately chose to live on my own with no roommates in order to give myself the best environment to thrive in. Over the past few years of having different jobs, I have told my coworkers about my Crohn’s disease. I don’t usually share it right away, because I want people to get to know me for me and not just my disease. When the time feels right, I do tell people about my Crohn’s disease. After I tell people about my Crohn’s, I always feel like a weight is lifted off me. Once people know my story, they have been as sympathetic as they can be. There always seems to be the range of people who know a friend that has it, to the people that have never heard of it before. For those who have never heard of it before, it is a good opportunity to teach them about it.

What are your hopes for the future?

My biggest hope for the future is an easy one, a cure for this disease. Aside from that, I hope I can continue to live my life and do my best to not let my disease stand in the way.

Advice for newly diagnosed patients?

My advice for newly diagnosed patients would be to find a good provider that you trust. It is important to trust their advice and recommendations, as scary as they can be sometimes. Additionally, try your best to not dwell on the negative things that are currently happening and think about what your future can hold. Always do your best to roll with the punches and keep moving forward, your best is all you can do.

What would you tell yourself at 12 years old…looking back at what you know now?

I would go back and tell myself that this is only the beginning. Life will be a never-ending roller coaster of ups and downs. Some of the downs will really take it out of you and knock you so far down you won’t think you will be able to find a way back up. And the some of the ups will be achievements you never thought were obtainable. But things will get better and there is always something better to look forward to right around the corner.

When life hands you lemons: Brittany’s story of resilience while battling Crohn’s

August 6, 2018Leave a comment

Imagine being hospitalized with a Crohn’s disease flare. Now, close your eyes and picture yourself in Germany, surrounded by doctors and nurses who don’t speak English. You have your husband and children, but other than that…all your family and friends are thousands of miles overseas. That was the case for my college friend, Brittany Cable. Brittany was diagnosed with Crohn’s in 2007, about a year after she had her oldest son.

It’s one thing to take on IBD and be surrounded by family and friends who you can lean on for support, it’s an entirely different situation when you have to take on your disease in a foreign place, with nowhere to turn. Luckily, Brittany is now back in the States, with a strong support system nearby.

As an IBD mom, Brittany flared after all three of her pregnancies. While she was pregnant, her disease was well-controlled. She was able to bring three, beautiful, healthy babies into this world—despite her own health issues.

Throughout her patient journey these past 11 years, Brittany has been on Asacol, Lialda, Uceris, Humira and Entyvio. The prednisone bursts and tapers have been difficult—to say the least. At one point, she was on 80 mg a day! To anyone who has been on prednisone, you know that’s a monster amount. After my initial diagnosis, I was on 60 mg for three months, so I can attest firsthand about how much of a struggle that presents due to all the side effects.

Brittany is a super-mom in every sense of the word. She’s now a single mom, raising three children, as she takes on Crohn’s. She works full time and has full custody of her children. She does this all alone. I’ve known Brittany for 16 years. She’s always been a super strong person with a great sense of humor. Despite the hardships and heartbreak through her life, she’s never allowed the difficult moments to dull her spirit. She tells it like it is and isn’t ever shy when it comes to sharing her story. I’ve always admired that about her.

As Brittany says, the constant fatigue, body and joint aches are what she struggles with the most now. Every day after work, she is tired and wants to crawl in bed, but she knows her kids depend on her and need her. She knows dinner needs to be made and soccer, swimming and other activities have to be attended. It’s one thing to be a single mom and have your health—I can’t imagine living her reality and doing it all on her own. But she does. And her kids have thrived because of her herculean efforts to be there and be present, every single hour, of every single day.

So how does she do it? Brittany says, “When I think about my journey so far, I figure if I made it through having three kids, living in a foreign country and my husband leaving… all while managing Crohn’s disease, there isn’t any thing I can’t do. Every time I get a stomachache, I still fear that something horrible is about to happen, but I think that’s normal for all of us on this journey. So I take everything that comes my way one day at a time. My children will not suffer if I don’t make a home cooked meal every night. Sandwiches or pizza are okay!”

When Brittany’s husband left her and their children, she was sure the stress and drama of it all was going to throw her disease in a tailspin. But it didn’t! Instead, the hardship has empowered her to trust in her faith and seek counseling. She chooses to tell herself everyday that she is stronger than her disease and even if it attacks again, she knows she will get through it. And I know she will, too. Because that’s Brittany.

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.

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Tag: Crohn’s disease