Three years of Lights, Camera, Crohn’s: 10 Tips for Becoming an IBD Blogger

Tomorrow (July 23, 2019) marks three years since Lights, Camera, Crohn’s became a reality. Three years since I closed my eyes and took a major plunge, wondering if my words and effort would make a difference. Three years since I decided it was time to stop living my IBD life in the shadows, and instead bring my personal struggles and triumphs to the forefront. A31AD785-CDF7-43D5-BA1D-BFDDC69B493EI chose to blog and become a patient advocate for several reasons. I was tired of feeling isolated. I wanted to be a voice for the newly diagnosed, as well as the veteran patient. And, as a journalist, I’ve always had a love for the written word. For me—expressing myself through writing comes a lot easier than saying the words out loud.

July 23rd is a big day on the calendar each year for me—it’s the anniversary of my Crohn’s diagnosis (14 this year!), my dog Hamilton’s birthday (He’s turning 11) and it’s the day I met my husband online (6 years ago!). If that’s not a sign that things happen in threes, I don’t know what is! Knowing this, I had to launch my blog on this day. Rather than focus on how many years I’ve been riddled with a chronic illness, it’s a way to celebrate how far I’ve come on my patient journey.

I’m going to do a little humble brag right now. Since launching my blog in 2016, I have never missed a week of posting fresh content. Through two pregnancies and being a stay at home, IBD mama with a now 2-year-old and six-month-old, I found a way to stay true to my own personal deadlines, because this blog, and this community and IBD family are so important to me. 41113C90-2C99-4252-B69B-212DB2295A33In that time, I’ve shared 171 new articles (because some weeks I post on Mondays AND Wednesdays). Over the last three years, more than 105,000 people from around the world have checked out Lights, Camera, Crohn’s. Could the articles be organized better? Yes. Could the design be snazzier? Yes. But, my focus as an IBD blogger and advocate is to give you the nitty gritty. I’d rather spend my time and energy on content vs. design.

One of the most common questions I receive is, “How do you become a patient advocate?” or “How do you become a blogger?” It obviously takes time, passion, and commitment.

Here are my top 10 pieces of advice for you, that I wish I would have known before blogging.

  1. Write for the reader and for yourself. As patient advocates and bloggers, it’s generally our own personal experiences that shape the content we share. That experience and viewpoint is invaluable, but remember—the reader isn’t here to check out your diary. They are here to learn ways to improve their patient journey, to educate themselves. When you write, write to the people reading. Don’t bore them with every.single.detail. of your doctor appointment. Use that experience as the foundation and springboard into a larger discussion that is easy for others to relate to. Think “news people can use”…otherwise, why read your stuff?
  1. Be bold. Be vulnerable. It can be very stressful and overwhelming to put your whole health story out there to the public. If you’re like me, I kept my disease to myself and close family and friends for a decade. Going from that—to sharing my story with thousands, is polar opposite. But, I can tell you, once you open up, you won’t regret it. The moment you break down your own barriers and show your true stripes, you open yourself up to endless support and quickly come to realize how many others understand your reality.
  1. It’s not a competition of the sick. Just because you haven’t started a biologic, just because you haven’t had surgery, just because you don’t have a bag, doesn’t mean your patient journey is any less significant or important. IBD impacts each and every one of us differently, but there are so many parallels along the way. Trust that what you are going through physically, mentally, and emotionally is something many people can relate to. I haven’t been hospitalized for my Crohn’s since August 2015 (before my blog went live!), but in my 14 years living with the disease I’ve experienced so many highs and so many lows, so many flare ups and so many feel good days. It all matters. And it’s all a part of it. People don’t just want to see you in the hospital or struggling, they want to see other aspects of your life, too.
  1. Be patient with yourself through the process. Writing about life with IBD can be emotional. It can be draining to bring up old memories that were the most difficult days of your life. It can also be cathartic. Write stream of consciousness-style. Rather than thinking about each word and constantly hitting the delete button, just let it flow. Edit yourself later, not in the moment.
  1. Have a thick skin. Being a patient advocate and a blogger isn’t always sunshine and rainbows. You are going to receive both public and private messages from naysayers. People may question why you aren’t “healing yourself with food” or “why you need a biologic”. The only person you need to answer to is the person looking back in the mirror, along with your physicians. No matter how much you share online, no one has the FULL story of your own personal experience. Let the judgers, judge…and keep on trucking. Keyboard warriors have a way with words, don’t allow others to bring you down or stress you out. That’s the last thing we need living with IBD. I’ve come across a few instances on Twitter, where banter got pretty heated. When my heart started racing and my stomach started hurting, I knew it was time to block them and move on. Don’t be afraid to block when needed.
  1. Remember you are a patient, not a medical professional (unless you are both!) It gets dangerous when patient advocates spout off medical advice to those desperately looking for answers. When people come to you for support or with questions about how to handle their care—always advise them to talk with their care team, and remind them you are not a doctor, but this is what has worked for you. Yada Yada Yada.
  1. Lean on others in the IBD family for guest posts/sharing your content on social media. Advocacy is not a competition. There is room at the IBD family dinner table for ALL of us. Interact with other people’s blog articles and social posts. Show them the love, chances are, that love will be reciprocated. Oftentimes, it can feel like everything you are doing is falling on deaf ears (thanks so much, Facebook algorithm)…that being said, don’t focus on the “likes” and the “comments”…if your article or your words help one person or one family, you’ve made a huge difference.
  1. Always be on the lookout for content. The former TV news anchor and reporter in me always has my eyes and ears open for the next story. Look at social media and see what’s trending in the IBD community. Ask your followers what topics they’d like to see more on. Set up Google Alerts in your email to see the latest about IBD research and news. Pay attention to people’s stories. When someone reaches out to me with a question, I often dig a little deeper and see if this is something that would make for a good article. Every single person has a story to share, it’s just a matter of discovering what that story is.
  1. Be authentic and true to who you are. Oftentimes businesses and companies will reach out to patient advocates looking for promotion or support. Don’t be a “yes-(wo)man”. Only promote causes and products that you genuinely believe in. Don’t sacrifice your hard-earned credibility for a few bucks, because your credibility is priceless.
  1. Stop selling yourself short. Your IBD life and story is valuable. Gone are the days when big pharma and businesses can tap into us as resources for free. We’ve all gotten smarter about this. Your painful journey hasn’t been easy. But, with that journey, you’ve gained a perspective that businesses are thirsty for. They NEED our insight. They NEED our input and perspective. Unless you live with IBD personally, you can’t fully grasp what it’s like. Sure, volunteer work for the Crohn’s and Colitis Foundation is one thing, but as soon as someone wants you to be an “influencer” or speak at an event, etc. know your worth and don’t ever be afraid to ask what the compensation is.

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I’m hopeful that three years from now on July 23, 2022, I’ll still be blogging and will still be a vocal voice for the IBD community. Thank you for sharing in my journey and for pushing me to be better. Thank you for reading and for caring. Thank you for being a listening ear and a watchful eye. Thank you for walking alongside me through pregnancies and motherhood as a woman with IBD. I promise to deliver more content that helps guide you through your journey and show you just how capable you are of being everything you ever hoped for. God bless.

XO,

Natalie

My Tribute to the IBD Family: You are visible

The theme of World IBD Day (which was yesterday, May 19) was to make the invisible, visible. Here’s my tribute to my fellow IBD warriors and their caregivers.

To the newly diagnosed…

To the person going through their first procedure whether it’s a CT scan or a colonoscopy…colonoscopy

To the parent of a child battling this disease…

To the person being wheeled in for their first surgery…

To the person taking their first steps out of the hospital bed while on the road to recovery…

To the person glancing at their incision for the first time…

To the person looking in the mirror and not recognizing the reflection looking back…

To the person on a liquid diet because it’s too painful to eat actual food…

To the person on a steroid feeling unattractive, irritable and high strung…

To the woman wondering if her body is strong enough to carry a baby…IMG_3723

To the man who’s concerned about being able to be a source of strength for his family…

To the pregnant woman worried about flaring and how it will impact her unborn child…

To the person beginning a biologic or a new medication, who’s petrified of the laundry list of side effects…

To the person crying themselves to sleep because they feel alone in their struggles…

To the mom who feels like she’s waging a never-ending war against her fatigue…

To the teen wondering if they’ll be able to go to college…

To the college student embarrassed of going to the bathroom in the dorms…

_F6B4724To the person nervous to open up in a relationship and disclose they have this disease…

To the person who had to get out of a relationship or was left because the support was lacking…

To the bride or the groom worried about having disease symptoms on their wedding day…

To the person shaking with fear in the parking lot of their doctor’s office, nervous to walk in and face the music…

To the person boarding an airplane nervous about symptoms and being around germs…remedy-nsmith-stlouis-1284

To the person who’s just been told another medication has failed them…

To the person lacking a genuine support system…

To the person who feels misunderstood, frustrated, and judged…

To the person sitting on the toilet contemplating whether a flare is starting to strike…

To the person in the passenger seat being rushed to the emergency room, yet again…

To the person getting their blood drawn staring at a focal point on the wall…

To the person who is constantly approached with the latest and greatest “fix”, “cure”, or way to “heal” …

natalie mothers dayTo the person worried about passing this dreadful disease onto their children…

To the person with the bad veins dealing with their eighth IV poke…

To the person who feels lost and misses who they were prior to being diagnosed…

To the person lying in the fetal position trying to get through this moment…

To the community who feels like home to me.

I see you. I hear you. I believe in you. I’m here for you. I love you.

We’ve all been these people. We all know this is the reality of life with IBD. It’s not easy. It’s scary. It can be overwhelming. The emotional pain can oftentimes be worse than the physical pain. Living with a chronic illness, no matter what your age or circumstance is tough. There’s no sugar coating it.

At the same time, I want you to whole-heartedly believe that while this disease can rob you of joy, it can also provide you with perspective, strength, empathy, understanding, gratitude, patience, and clarity. You my friends, are far from invisible.IMG_3434

I see you. I hear you. I believe in you. I’m here for you. I love you.

Thank you for helping me to see the light on the dark days, inspiring me when I need it most, and showing me that there’s much more to life than being a patient. I hope I do the same for you, always. Use your journey. Use your story. Use your setbacks. Use all that you are, to inform, educate, and implore others to want to better understand your reality. I promise, you won’t be disappointed.

XOXO-Natalie

Why I cried talking about Crohn’s at my friend’s rehearsal dinner

I stood before a room of strangers last week and shared some sentiments about my friend Jenna who was marrying the love of her life the next morning. Chances are—you’ve been at a rehearsal dinner and participated in the ‘open mic’ opportunities.

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Jenna’s birthday, 2009

As a former TV newsie, I always enjoy a chance to speak and articulate my feelings! I started out talking about how we knew one another and the type of friend she was—and then I went for it. I broke out the “C” card…the “Crohn’s” talk. Most of the people in the room were strangers to me until that night, some probably had no idea what Crohn’s was.

In that moment, I tearfully thanked my friend of more than 12 years in front of a roomful of people for always being present, always genuinely caring and for always being there not only in life’s amazing moments—but also through every flare up I’ve experienced along the way. When you are diagnosed with a chronic illness, you don’t stop and think twice about which friends are going to be there, you just expect it. Unfortunately, you’ll find many ‘friends’ tend to fade to the background and will continue to do so throughout your patient journey.IMG-0841

This friend—is the opposite. This friend has sent me countless snail mail letters on adorable stationary—some with Ryan Gosling’s face plastered all over it, others with an inspirational girl gang type quote. Each time I’ve been hospitalized, she’s been my constant ray of sunshine. Always texting. Always calling. Always checking in on me. Her efforts seem effortless. And that my friends, is priceless. Rather than feeling guilt for being “that friend” she makes me feel empowered and loved.

When you live with IBD (or any chronic illness for that matter)—seek out your Jenna(s). IMG-0838Find the people who lift you up. Trust in the bonds you create with those who are there for you because they want to be out of the goodness in their heart, not as an obligation. Hold on closely to the relationships that spark joy and don’t extinguish your flame. Lean on those who are willing to give you their hand to lift you up, even when you don’t ask for it.

At Jenna’s rehearsal dinner, I wanted her to know. I wanted her to know how her compassion and empathy meant the world to me. I wanted her to know how much I appreciate all the effort she continually puts into our friendship, despite living out of state from one another for the past decade. I wanted her friends and family members, and her now husband to see the impact she’s made on my life and how her efforts to be there, make her who she is.

My hope for the IBD family is friendships like this. The ones that stand the test of time. The ones that ground you. The ones that show you the beauty of another’s heart. The ones that remind you that you aren’t ever going into battle alone. The ones that serve as your light when the days are dark. They exist. They are possible. You just need to find them.

Wedding photo cred: Savannah Kay Photography

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.”

My Cause My Cleats: How Chicago Bear Anthony Miller is Representing IBD

When Chicago Bear standout rookie wide receiver, Anthony Miller laces up his cleats to take on the Los Angeles Rams this Sunday, his cleats will tell a story. A story many may not be aware of. Anthony’s longtime girlfriend, Alexandra Pounders, has battled Crohn’s disease for nearly 10 years. She was diagnosed at age 14. IMG_4488

This Sunday (Dec. 9), Anthony will participate in the NFL’s My Cause My Cleats campaign, as a way to spread awareness for inflammatory bowel disease (IBD) and show support to his girlfriend. Anthony’s cleats will feature the Crohn’s and Colitis Foundation.

“Being able to bring awareness about IBD through football means a lot to me. When I wear these cleats against the Rams, I’m not only going to be representing my girlfriend Alexandra, but also the millions of people across the globe who suffer from this disease,” said Anthony.

This is the third year for the My Cause for Cleats effort. It’s a way for NFL players to take steps to visually show their support for causes near and dear to their hearts. Anthony and Alexandra have been together almost five years. Alexandra says Anthony has been there for her every step of the way, whether it’s attending doctor visits or motivating her to stay strong during setbacks.

“It feels amazing to know there is someone by my side who cares so much for me that they want to spread awareness about this illness. IMG_4487Anthony has seen me fight for so long. It makes me feel like I’m not going through this alone,” said Alexandra.

“We are thrilled to see several NFL players, including Anthony Miller, raise awareness of Crohn’s and colitis through this year’s My Cause My Cleats campaign,” said Michael Osso, President & CEO of the Crohn’s & Colitis Foundation. “More than 3 million Americans live with these diseases, and, like Anthony, even more are touched by them as loved ones of patients. Using their platform as professional athletes to speak out about Crohn’s and colitis not only helps educate the public about the seriousness of these diseases but also underscores how wide-reaching these diseases are and how important it is to have the support of loved ones.”

Alexandra’s advice to the IBD community is to put your personal needs first and try to keep stress to a minimum, while accepting support from others.

“Surround yourself amongst people who may not completely know what it feels like to be in your shoes, but people who are willing to be patient with you and love you on the days that aren’t so great. Focus on being the best possible you that you can be in every aspect…mentally, physically, emotionally and surround yourself amongst people who truly care about you, it’ll be so much easier to overcome the obstacles you face with this disease. Stay positive. Hold on tightly to your faith. And don’t let this disease define you,” said Alexandra.bears

Chicago is my hometown and where the majority of my family lives. As a Bears fan and as a Crohn’s disease patient advocate who was diagnosed in July 2005, seeing professional football players put causes like the Crohn’s and Colitis Foundation in the spotlight means a great deal. Check out the #mycausemycleats hashtag on social media to learn more about the cause.

Discovering Gratitude While Living with IBD

When you think about life with inflammatory bowel disease, are you able to think beyond the pain and suffering? Are you able to pause and take time to reflect on how your illness has shaped you into who you are today? Are you willing to look at something that continually challenges you, scares you and leaves you drained—and think…you know what, I wouldn’t have my life any other way? _F6B0037

It takes a lot of time and a lot of patience to come to this place of realization. Until recent years, I’m not sure I would have ever been able to say a positive word about what it’s like to live with Crohn’s disease. But now, more than 13 years later with this disease, I feel my vision has gone from black and white and changed to color. I have peripheral vision I never had before. I’m able to see how my past shaped me into who I am today. I’m able to recognize how the pain and hurt has altered my perspective and forced me to take the blinders off. I can see moments where I’ve risen above and shown courage and bravery. Some memories are painful, some make me feel sad, others make me feel proud.

There comes a time in a chronic illness patient journey that you stop thinking “why me” and instead “why not me.” I don’t like placing pity on myself. I don’t prefer to fantasize about the days before I was diagnosed. Instead—I enjoy reflecting on how I’ve evolved through the years, despite the setbacks and the scares. wedding1Chronic illness, while physically, mentally and emotionally taxing, also has the ability to show us the beauty of the world around us and all that we’re capable of. Instead of thinking how my Crohn’s holds me back—I think about how I’ve lived despite its restraints.

As the years go by, and the diagnosis “anniversary celebrations” roll on, I continue to grow and feel a renewed sense of self within my illness and within myself. As you experience procedures, self-injections, surgeries and the unknown, you get desensitized, but you also gain strength. The day-to-day management of an invisible chronic illness is exhausting and can be overwhelming, but there comes a time when you feel a sense of harmony with your body. You know what it’s trying to tell you. You know when you need to listen. You understand when you need to act.

_F6B0340My disease has helped me take on motherhood. It’s made me soak in the feel-good moments, take mental snapshots of the happy days and celebrate the beauty of life. My disease has forced me to press pause when I’m doing too much, it’s reminded me of the importance of self-care and taking time for me. It’s shown me which people are meant to be in my life and which are meant to be in the backstory.

It’s a season of gratitude. A season of thanks. A season of family, friends and celebrations. This year—I’m choosing to celebrate how Crohn’s disease has guided me to the present. Beyond thankful for a husband who’s my rock, a son who is healthy as can be and a daughter on the way in January. My body may not be “healthy” …but, it’s still managed to create miracles.

It hasn’t always been a fun ride, it’s been brutal at times. But it’s my life and I wouldn’t have it any other way. Please do yourself a favor and give yourself time to reflect on how your disease has shaped you into the person you are today. By showing gratitude about living with IBD, it’s one of many moments where you can show your disease who is in the driver seat and continually rise above.

Operation “Good Health” with IBD through finding love, raising kids and building your dream

“Crohn’s isn’t what I’d call a “sexy disease” – it’s hard to invite the love of your life to share a bathroom with you. You are scared, embarrassed, worried and everything in between. However, my bathroom habits are out of my control. And, even though I’d give my arm for my incredible man, I don’t want him to know what goes on in the bathroom. I want to be sexy, a woman of mystery … and IBD sometimes isn’t… well, hot.”

If that didn’t get your attention, then I don’t know what will. Katy Love is an IBD warrior who recently tied the knot October 21 with the love of her life. Katy+Vince-12Sickness and health truly take on a whole different meaning when you live with a chronic illness. Katy witnessed her husband Vince’s compassion and character while they were dating.

She had a wound vac that was loud, smelled and made it impossible to shower. Vince loved her despite her health complications and Katy said her Crohn’s brought them closer throughout their courtship.

“I’m extremely blessed to have a supportive partner. As anyone with IBD knows, you have great days and horrible days, sometimes within the same week. I truly believe IBD has made me a better, more understanding partner. I value each day, especially days without pain. And I value Vince and his support. From day one, he’s wanted to be involved in my Crohn’s journey. Going to doctor appointments, infusions, participating in fundraisers and holding my hair when I get sick,” said Katy.

While Katy doesn’t allow her IBD to define her, it’s a huge part of her day-to-day existence. It impacts her as a mother, a business owner, a partner, a friend…and especially as a wife. Diagnosed with Crohn’s at age 17, more than 21 years ago, she’s endured 40-plus colonoscopies, multiple bowel surgeries and removal of more than 75 percent of her bowel.

Preparing for the big day

Leading up to her wedding day she instated Katy_Vince_Family_137“Operation: Good Health.” She made it a priority to get a minimum of eight hours of sleep a night, as lack of rest tends to be a trigger for her. She was on a mission to hydrate, hydrate and hydrate some more. To set herself up for success and limit any surprise flares, she planned out her meals the entire wedding weekend. For example, she does well with bland foods, like noodles, rice, chicken and (big one) avoiding alcohol. And finally, she delegated responsibilities (aka stress) to friends and family. Katy admits she’s pretty Type A and would much rather do things herself than hand them off. However, she wanted to enjoy her wedding and because of her proactive planning, she was able to do just that!

Katy is a shining example of living life to the fullest, despite her disease. She was blessed with three, beautiful, healthy children. Fall 2017 Family 1Reagan, Grayson and Carter may not understand why their mommy is in bed or why she needs to pull over on the side of the road when she gets sick, but Katy’s Crohn’s has taught her children a great deal of empathy at a young age. A few weeks ago, she was in debilitating pain and her nine-year-old offered to make dinner for her brothers. She poured them each a bowl of cereal and that was everything.

Along with motherhood, Katy has managed to have a successful career in public relations, including serving as Vice President of Global Communications for Crocs, Inc. Recently, she launched her own PR firm, Comm Oddities Inc. that specializes in food, fashion and footwear. There is nothing this woman can’t do.

Advice after living with Crohn’s for 21 years

As far as advice for the rest of us? Boulder_Headshots_043

“Be kind to yourself. I’m very guilty of getting frustrated with myself. I want to do it all, all the time. Give 100 percent to my job, my family, my friends … and some days just getting out of bed is challenging.

One of my favorite quotes about living with a chronic illness (that’s most of the time invisible) is “Those with chronic illnesses aren’t faking being sick, they are faking being well.”  That really hits home. You don’t want to burden others, so you simply say, “I’m fine” and smile. But, asking for help isn’t a weakness. Those close to you want to help, they simply don’t know how.”

 

How living with Crohn’s inspires this medical student to make a difference

There’s never a good time to receive a diagnosis of inflammatory bowel disease. The earth shattering news tends to flip your world upside down. For 27-year-old Alyssa Alda Clements of New Jersey, her Crohn’s disease diagnosis could not have come at a worse time. Alyssa was in her first year of medical school and had recently lost three family members.

“The hardest part about my diagnosis was the time I spent in the hospital or being homebound, because it took me away from my schooling. Having to take medical leaves from my DREAM was so heart breaking. I had wanted to be a doctor since I was three. In time, I started to feel better when we got things under control and was able to go back to medical school and, knock on wood, I am still hanging in here,” Alyssa says.

Being sick never made her want to quit, if anything it made her realize how much we need doctors, especially ones who care. Alyssa says her patient perspective provides her with insight when it comes to the type of doctor she wants to be and the type of care she aspires to provide day in and day out to those who depend on her. alyssa7

“My first trip to the ER nearly killed me because the doctor didn’t believe my pain, told me it was in my head and that I was a crazy medical student, and didn’t even touch or listen to my abdomen. It turned out to be an obstruction and thankfully I listened to my gut and went to a different ER the next day,” Alyssa recalls.

Fast forward a week later, Alyssa woke up from her first colonoscopy to learn she has severe Crohn’s disease in her large intestine, small intestine and rectum. The GI spoke candidly and said her odds of ever becoming a doctor were slim, due to her health. But, Alyssa didn’t let the naysayers stop her from following her dreams.

Becoming a doctor while living with Crohn’s

As many know, working in the medical field is not for the faint of heart. alyssa6The profession entails a great deal of stress, both physically and mentally. Not only are the hours long, but you are exposed to a ton of people who are sick, while you are immunocompromised.

“I have learned so much about empathy and sympathy as a patient, the way some physicians made me feel pushed me to continue in medical school and be a better caregiver than they were to me at my worst moments. I have learned to listen to the patient because I have been ignored. I know just what being a patient feels like, how scary, uncomfortable, painful, that being sick can be, and I want to be there for others who are in that position. When I finally found my amazing care team that I have now, I became hopeful that I could be that person for someone someday,” Alyssa says.

As far as advice for fellow IBD’ers, Alyssa says be honest with yourself and what you can handle. Don’t let your disease limit you, but also know that it’s ok to be kind to your body and slow down when you need to. Alyssa says she’s modified her life so that she’s able to handle medical school and keep her well-being in mind at the same time. She relies heavily on the support of her family and boyfriend and makes self-care a part of her daily life.

Big city, bright lightsalyssa people

Alyssa was recently featured by People Magazine, that’s how her and I connected on Twitter! I saw her inspiring story and immediately wanted to share it with you. She went to New York City and was interviewed as a woman who is overcoming chronic illness. Talk about a great person to represent those of us in the thick of fighting this disease.

Her attitude is admirable, “I want to show anyone that they can be strong and resilient and still achieve their dreams after a diagnosis. I want to show young women and girls with illnesses that they are still beautiful, that their bodies might be constantly changing, but they are still themselves, they are still amazing.”

Bouncing back from difficult days

In her first year of diagnosis, Alyssa was in and out of the hospital. She endured more than 12 bowel obstructions, a PICC line, NG tube and tests galore. While at Disney World that November, Alyssa fell to the floor of her hotel room. She came to find out she had multiple abscesses and fistulas. After four weeks of total bowel rest, she had an ileocecectomy. A total of 13 inches of her intestine was removed. In her eyes, the surgery saved her life. Alyssa has been on Humira for almost five years. She says the new citrate free formula has changed her life (and I must agree!!)

“Days can be hard, filled with pain, fatigue, never ending symptoms, but always know that you are not alone. There is an army of us fighting diseases you can’t see.” You got that right, Alyssa!

The power of assuming positive intent with chronic illness

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. office-620822_1920There 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. say-yes-to-the-live-2121044_1920

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. bob_natalie_proposal_6615-107As 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.