When you think of a role model, who comes to mind? By definition, a role model is ‘a person looked up to by others as an example to be imitated.’ One of the most well-known role models in the inflammatory bowel disease community is Texas Rangers pitcher, Jake Diekman. Jake has battled ulcerative colitis for more than 20 years. But, he didn’t let his daunting diagnosis derail his dreams of hitting the mound as a professional athlete.

Since January, Jake has endured three surgeries to remove and rebuild his colon. In the first surgery, Jake had his colon removed and was fitted with a temporary ostomy bag. Then, doctors looped a portion of his small intestine around itself to form an internal reservoir, called a J-Pouch. This essentially replaces the functionality of the colon. Jake had hopes of waiting for the surgeries until the offseason, but his disease had a different game plan in mind.

When this left-handed pitcher isn’t busy closing out games or battling his disease, he’s raising money and awareness for the cause. He has the term “Gut It Out” tattooed on the inside of his right wrist and created the “Gut It Out” Foundation. A non-for-profit organization that’s main mission is to support IBD patients. His t-shirt sales alone have raised more than $12,000 for the Crohn’s and Colitis Foundation. Jake makes a point of connecting with people of all ages who endure IBD. He goes above and beyond to meet with kids and teens across the United States and organizes fundraisers for the cause.

I had a chance to ask Jake some questions about his inspiring battle with ulcerative colitis. Here’s what he had to say:

NH: What’s is like to play professional baseball while battling a chronic illness?

JD: Some days are definitely harder than others, but you just push through. Surprisingly, my UC has never bothered me while I’m on the mound. Before and after yes, but for whatever reason, I was able to block it out while actually pitching in games. I do become more fatigued than my teammates and have to stay on top of my hydration on very hot days, but other than that, I try to not let it dictate my baseball career. 

NH: What advice do you have for kids who aspire to be like you, but face the unknown with their illness?

JD: Listen to your doctors. They know best and they are giving you instruction for a reason. When I was a kid, I used to think I knew better, but I always turned out to be wrong. Follow the plans they give you to the best of your ability, and be patient.Don’t let these diseases stop you from chasing any dream you have. I think I am a good testament to that. 

NH: What does the “Gut it Out” effort mean to you?

JD: Gut It Out means to just push through the tough times. Be as strong as you can and literally, gut it out with all your might. I wanted other people to be inspired by that mantra and to use it when they need it most, in any aspect of life. 

NH: How has your diagnosis and disease journey impacted the person you are?

JD: It has taught me how tough I am. It has taught me to be more patient in life (still working on that). It has made the little things not seem as stressful as they are, because there are bigger issues in life and bigger hurdles you might have to face. It’s taught me how to listen to my body and know my limits. 

NH: How has your fiancee, Amanda’s, support helped you overcome obstacles?

JD: Amanda has been my rock through all of this. Without her, I don’t know how I would have gotten through. She doesn’t let me mope, she pushes me to do the best I can and not let anything stop me. She’s been there for me through it all, and talked me off a lot of ledges. At the end of the day, knowing I have her by my side, makes everything better. 

NH: Are there any misconceptions about UC or Crohn’s that you want people to know about?

JD: That it doesn’t have to be embarrassing, and it’s not just all about going to the bathroom a lot. There doesn’t need to be a stigma behind having a bag, or having these diseases, because at the end of the day, we are all human. I want people to know how isolating and lonely it can be, how it can affect your social life and your relationships, and I want people to have a little compassion for those going through this. Be patient with your friend or family member, and let them know they aren’t alone. 

Jake made a triumphant return back to the mound against the Los Angeles Angels on September 1. He received a standing ovation from the crowd at Globe Life Park after retiring all three hitters and earning a big win. It’s amazing to think the same person who was hunched over in a hospital gown walking gingerly through the hallways months ago, is now sporting a Rangers uniform standing before thousands…pitching at the highest level.

Click here to learn more about the Gut It Out Foundation. A special thank you to Jake for taking the time to respond and share his incredible story. Words don’t do justice to explain how Jake’s efforts to spread awareness make a difference. From one IBD’er to another, thank you!

 

 

I recently came across the following quote, “It doesn’t get easier. You get stronger.” Those words made me pause and reflect on my personal patient journey and also think about how I give advice to those in the inflammatory bowel disease community. While I believe the diagnosis and the initial flare-up that hospitalizes you is probably the most earth-shattering to your world, maybe as time goes on we just become a bit desensitized to the worry and all the pain.

Each flare-up and rough patch has its own set of memories. Even after more than a decade of fighting an illness that’s become a big part of who you are…it’s still just as scary as they roll you down for the abdominal CT scan to see what’s brewing. It’s still just as worrisome when your significant other races to the hospital and you walk through those ER doors and know you won’t be going home.  Each of these moments builds up our strength, even if while they are happening we feel weak and out of control.

I’ve come to realize that all my hospitalizations are a bit of a blur. They are hazy in my memory. Maybe I’ve blocked them out. The clearest moments are those when I get to go to home.

That first walk at the park after being in a hospital for days on end. Getting to eat a full diet and saying ‘so long’ to the clear liquids. Staring out the window of the car while “Fight Song” played on the radio after my bowel resection. Looking in the mirror at my battle wounds and being proud of what I’ve endured to get to this place, rather than ashamed. Taking that final prednisone pill and surviving another wean-down process. THOSE are the times that make us all stronger. Because we come to a place where we’ve overcome our difficult present and gotten to those brighter days. You must not sell yourself short. You need to soak it up and give yourself credit—because no one around you truly knows what it’s like to be in your shoes. We can have similar experiences, medications, surgeries… but, each of us has a unique story to share.

Battling IBD is certainly not sunshine and unicorns, but it makes the feel good days much more beautiful.

We learn not to take anything for granted—whether it’s feeling good after a meal out with family and friends or getting to attend a wedding and not feel any pain while you’re on the dance floor. Those are the times we celebrate. It’s verbally getting to say to my husband, “I feel SO good today.” It’s finding joy in the times when your disease gives you a break and you can feel like everyone else. It’s having the energy to take my son on a long walk and breathe in the fresh air, pain free. It’s eating popcorn as I type this and not feeling any repercussions!

So while Crohn’s is a roller-coaster of emotions and experiences, there is one constant through it all. Not just for me, but for you, too. We are strong. We are resilient. The suffering and pain is fleeting, it will pass. Just as those amazing and happy days will. Live in the now—don’t stress about tomorrow and only look back to recognize how far you’ve come along the way. When I think of myself “BC” (before Crohn’s) it’s almost like a different person.

You never know who you’re going to meet along your patient journey. Once you feel comfortable sharing your story, there are so many opportunities to meet those battling inflammatory bowel disease. My mom recently discovered that her college roommate also had a daughter who battles Crohn’s. Naturally, I reached out immediately upon finding out the news. Britten and I connected on Facebook and then began emailing back and forth. This week, Britten shares a guest blog about what it was like to tell her boyfriend Chris that she had an ostomy bag. I’ll let her take it away…

The day I decided to tell my boyfriend Chris that I had an ileostomy, I was a nervous wreck. Swarms of butterflies raged in my stomach as I drove to his house. Purposely, I drove slowly to stall the inevitable talk. In my head, I rehearsed what I should say. I wanted the conversation to go perfectly, but I was worried about how the words would come out, and how he would take the news. The last time I attempted to have this talk, I got dumped. My ex-boyfriend of seven years broke up with me two days before having ostomy surgery because he couldn’t handle “me being sick all the time,” and I was terrified the same thing would happen again. After all, my current boyfriend and I had only been dating for a few weeks when I decided it was time to let him in on my little secret. I knew it was only fair to tell him.

Deep down, I knew I had nothing to be embarrassed about or ashamed of, everything that had happened that lead to me having an ileostomy was completely out of my control. It was just something I had to live with. But I still felt nervous and self-conscious about sharing my secret. All I could do was take a deep breath, and face my fears. Walking to Chris’ house, I knew there were only two outcomes to this situation. Either he would accept me as I am, or he wouldn’t be able to handle it and we would break up. Either way, there was no turning back now. Gathering all of my courage, I knocked on his door.

We settled on the couch, sitting with his arm slung comfortably over my shoulders. I turned to face him, took one last deep breath, and suddenly burst into tears. Startled, he immediately pulled me into a hug and tried to calm me down. After a moment, I sat up, wiped my tears, and explained that I had something important to tell him, and that I was nervous to hear his reaction. Chris gave me another hug and reassured me that everything would be okay.

With a rush of words, I began telling him my story. It was like having an out of body experience. I could feel myself talking, but I felt like I was watching the scene happen from across the room. Once I started, I couldn’t stop. I started at the beginning, explaining that I was diagnosed with Crohn’s Disease in 2012, and between then and 2015 I had about 30 surgeries to drain an abscess that refused to heal. I explained that because the abscess wouldn’t close, we decided to try a temporary ileostomy to see if that would allow it to finally heal. I continued, explaining that essentially, I have a poop bag, who I named Sammy, attached to my stomach.  Trying to make light of the situation, I joked that thanks to Sammy, I’m the world’s most perfect girlfriend, I can’t poop or fart.

When I finished talking, I stopped and looked at him, expecting him to be grossed out or scared by what I had just told him. Instead, I was met with love, kindness, and acceptance. And a fair share of curiosity. Leaning in to wipe the tears from my face, he comforted me by saying how brave I was for sharing my story with him. He knew it took guts. He took my hands in his, and reassured me that having a bag didn’t matter to him, I was still me. Looking me in the eyes, he told me that I’m beautiful and that having a bag doesn’t change who I am.

Then, Chris shyly asked if he could see my bag. With slight hesitation, I had never done this before, I introduced him to Sammy. After seeing his reaction, I was overcome with happiness and relief. It was then that I realized that I didn’t have to hide my bag; it makes me who I am. I didn’t have to be embarrassed because I’m a fighter, a Crohn’s warrior, and I’m proud of that. I’m proud that I never gave up. Chris helped me realize that my scars make me unique, and help tell my story. Now that I had shared my secret with him, I knew that it would give me the strength I needed to be open and honest about Sammy for now on.

Be sure to check out Britten’s new blog entitled, “Babe With a Bag” and continue to follow her inspirational journey.

 

 

I recently came across a statistic from the Crohn’s and Colitis Foundation that struck a chord with me. That statistic being that each day, approximately 190 people hear the words “You have Crohn’s disease” or “You have ulcerative colitis.” Wow. Let that sink in for a moment. That means each year 69,350 people join our IBD family. Take a moment to think back to how you felt when you heard those words come out of the doctor’s mouth for the first time.

Those words are lifechanging. Those words shake you to your core. Those words forever change you. Once you are told this, there is no turning back. From that point forward it’s an uphill battle with unseen obstacles along the way. It’s heartbreaking to think of how many people wake up one day not having an answer, and how many then go to bed with a label that they will wear invisibly for the rest of their lives.

It seems for many who don’t battle inflammatory bowel disease or who don’t know much about it, that Crohn’s and ulcerative colitis aren’t that serious or that big of a deal. The majority of people I know never ask me how I’m feeling or inquire about how the battle is going. I have to bring it up 90 percent of the time. In some ways I welcome that, other times it’s a bit disconcerting.

Yes, my quality of life for the most part is similar to most people…but, I can tell you in the last week I had three rough days. Days where I couldn’t even stand up straight while I was home alone caring for my son. Days where I had to put my son down mid-feeding so I could make a run for the bathroom. Days where I turned to the bottle of Tylenol with Codeine on my nightstand and had to pop a pill so I could get some rest from the pain. By my outward appearance and what I share on social media you would never know this.

For those who have just been told they too have inflammatory bowel disease, my heart goes out to you. The journey you are about to embark on is like nothing you’ve ever experienced. The really terrible times when you’re in the hospital fighting a dreadful flare will end up being the moments that make you stronger than you knew possible. The days when you are feeling fantastic and your disease seems to be in hibernation will be absolutely glorious. Celebrate those moments and know the next time you’re facing surgery or unable to eat without pain that those incredible feel-good days will visit you again.

Have patience with yourself every step of the way. It’s ok to feel angry and wonder why me…but there will come a point where you will think…why not me? You were given this disease because you are strong enough to handle it. Use your hardships to inspire and help others. Use your experiences to show compassion and empathy. And most of all, don’t be afraid to ask for help or seek out others who understand what it’s like to hear those words, “You have Crohn’s disease.”

Meet Penny. Penny is your typical sassy, feisty and vibrant four-year-old. Behind that big smile and those glittering eyes filled with mischief is so much more. She’s a little girl, fighting a big disease. A disease that flipped her young life upside down. A disease that she will battle for the rest of her life. Penny was diagnosed with Crohn’s in January 2017.

Penny’s mom Beth came across my blog and reached out. Reading the desperation and fear in her words, but also the appreciation for my patient advocacy brought tears to my eyes. I felt an immediate connection with this family and specifically this little girl.

It all started this past November when Penny had blood in her stool. At first, her parents and doctors thought it was merely constipation. Something common, that many children go through. On Thanksgiving Day, that all changed. Penny was at the Detroit Lions football game with her parents, a family tradition. When Beth took Penny to the bathroom the entire toilet was filled with blood. As you can imagine, it was horrifying to see. After several tests, Penny was referred to the Pediatric Gastroenterology department at University of Michigan-Mott Children’s Hospital in hopes of finding answers.

On January 11, 2017 Penny went in for an upper and lower scope. As soon as it was over, Beth and her husband were called in to meet with the medical team and were told that Penny had Crohn’s Disease. Let’s pause for a second. Imagine being told your four-year-old daughter, who was perfectly healthy up to this point, had a chronic disease, with no cure.

Beth says, “When we were initially given the diagnosis, I was numb.  And this wave of “mama bear” protection came over me. I went through the motions of gathering as much information as I could so that I could do everything I could to help her. After the initial shock passed, my heart broke and I also became angry.  I hate that she has to go through this and especially at such a young age. I cry…a lot. I am trying very hard to let go of the anger but it is really hard not to be angry at the world when your baby is handed such a huge, life-altering diagnosis.”

Since being diagnosed in January, Penny has spent more than four weeks in the hospital. She’s underwent MRIs, ultrasounds, countless blood draws, two Remicade infusions which were believed to induce heart failure, time in the cardiac ICU, two different PIC lines, a blood clot, an NG tube, physical and occupational therapy… you name it, Penny has endured it.

“This diagnosis has changed all of our lives.  Our lives have been consumed by it.  It makes my heart ache to think that there is no cure and that she will forever live with this.  She is four.  She has a lot of life left to live and a long time to live with Crohn’s.  The only positive thing is that she will not remember life without it and will know how to live life with it. She will learn early on how to take care of herself and also how to be her own best advocate.”

When Penny gets her infusions she’s happy as a clam once the IV and blood draw are behind her (can’t blame her!). She spends the rest of the time playing, watching movies and eating snacks. Penny has taken all the challenges in stride and hasn’t allowed the difficult days to take away from her happiness and magnetic charm.

Beth says her daughter inspires her every single day, “She inspires me to be more courageous. She inspires me to do hard things!  I find myself often saying, “If Penny can do it, I can do it.”  She inspires me to find happiness in my day.  Throughout the entire hospital stay, even on her hardest days, Penny would find something to laugh or smile about.”

Beth and Penny are an inspiration to the inflammatory bowel disease (IBD) community. In just 10 months they have sponsored “Kid Care Bags” for kids in the infusion center, sold “Penny Power” t-shirts and donated the money to the Crohn’s and Colitis Foundation and participated in the Take Steps Walk in Detroit. Beth and her husband teach at a local high school and this fall the volleyball team is doing a Crohn’s Awareness game. This family is doing everything they can to help and advocate for others. Penny is learning and witnessing at a young age that just because you have a chronic illness, doesn’t mean you can’t lead a full and beautiful life.

When it comes to advice for parents with children who are battling IBD, Beth says you must learn everything you can and be your child’s number one advocate. Connect with parents and adults living with IBD, as they will be your greatest resources and provide hope and perspective. Most importantly, help your child learn about IBD and what is going on in their body. Why the doctors are checking them, why they are in the hospital, why they are in pain and why they need daily medication.

Penny is currently doing Vedolizumab (Entyvio) infusions. On a daily basis she takes Imuran and Vitamin D. She recently stopped taking Iron, Uceris and two antibiotics to help her fight infections she picked up earlier this summer. She also takes three medications for her heart: Coreg, Aldactone and Enalapril.

Like the rest of us, Beth hopes and prays for a cure someday, “My prayer every day is that my girl will see a cure in her lifetime.  But until they find that, my hope is that every patient finds the best way to manage his/her symptoms and learns to become an advocate for themselves.  I hope kids are able to manage their symptoms so they can just be kids who take medication and that IBD doesn’t consume their days.”

As a soon to be 34-year-old, who’s battled Crohn’s since I was 21, I have a few words for Penny and her amazing family and support system. While the journey won’t always be easy and your patience and strength will be tested time and time again, you will always rise above. Each flare up and tough moment is a setback, but this disease does not define who you are. You are not “Penny with Crohn’s disease.” You are so much more. You are a girl with a promising future, who can achieve and accomplish anything you put your mind to. In these past 10 months since diagnosis you’ve already grown and learned more than you realize. By the time you grow up you will be so strong and have a perspective that your peers will admire. So, keep being you. Don’t let this hold you back. And know that even though you may be small in stature, you have the ability to make a big difference in the lives of others. I know I already look up to you.

Click here for information on IBD. Research the best Pediatric Gastroenterology hospitals. And know that you are not alone in your worries, concerns and struggles.

 

 

 

I recently connected with a woman named Amanda Bate on Twitter. She’s a freelance copywriter, social media marketer, a Crohn’s warrior and a mom from the United Kingdom. Amanda was blindsided by the diagnosis of Crohn’s disease after giving birth to her son, Matthew. She sheds light on what it’s like to raise a child, while battling an invisible, chronic illness. This week, it’s all about Amanda’s story. I know it will inspire you, just like it’s inspired me:

School’s out for summer and we’re busy planning days out, trips to the cinema, walks in the park – you know the usual mum and son stuff.  Fourteen years ago I never imagined life returning to some kind of normal – so this is a big deal to me.

Parenthood is full of the unknown, mostly exciting, sometimes scary.  But the one thing every mum and dad have in common is the change in lifestyle.  We adapt to having a new person in our lives.  We learn new skills, learn we can love more, learn how to teach.  Life is never going to be the same.  It’s going to be wonderful.

Along Came Crohn’s

When Crohn’s came into my life it threw my plans for motherhood left, right and center – just like bowling a strike, only there were no whoops of joy.  During my pregnancy I grew ill, experiencing inexplicable pain. Steroids stabilized me until Matthew was born, then invasive tests confirmed that I was suffering from this chronic disease. I had to adapt to life with a new baby and an illness I knew nothing about.

My body struggled with the pregnancy and Matthew was born six weeks early September 25, 2003.  He spent his first weeks in an incubator in the neonatal department. My symptoms got worse and I was admitted to another ward. I was in the same hospital as Matthew, but to me it seemed I was 100 miles away. Someone else was watching over him – that wasn’t part of my plan.

Talk About Emotional

Crohn’s is stubborn and awkward when it comes to drugs – some work for a while, others don’t work at all. Getting the medication right took time. Oral drugs weren’t doing the trick, so I reluctantly turned into a pin cushion. My body was being treated, but what about the negative thoughts in my head? It became apparent that I needed counseling, I was spiraling into a dark place… all triggered by guilt.  I wasn’t the mum I wanted to be, I believed I wasn’t going to be good enough.

My amazing counselor lifted me from that dark place and made me understand what really matters. So what if I didn’t have the strength to go to the park, to push the swing, to race to the top of the slide – all a child needs is fun, laughter, joy and love.

Growing 

As Matthew grew so did my understanding of Crohn’s. Matthew has been with me every step of the way. He is my reason to keep going, to fight, to get stronger. He came to every appointment with me, every blood test, visited me when I had to stay in hospital, and kissed my scars after surgery.

My doctor involved Matthew and gave him the same job to do at every appointment; he loved our visits – glad one of us did!  When I started to self-inject medication at home he would help prep the area and watch with fascination. To him, this was normal. I was normal.

On my bad days we’d invite teddies to a picnic on the lounge floor, snuggle and read together. We were incredibly happy.

Stronger

I never hid Crohn’s from Matthew, there was no point. It was important to me that he knew why we were a little different, why some days he had to be gentle with me and let me rest.  I explained as soon as I knew he could understand that my immune system is faulty and thinks my guts don’t belong to me – we make fun of it – silly immune system!

The more we learn about this disease, the less scary it becomes.

 

Together

So here I am 14 years later with a full-time job, hobbies, and lots of time for my family. Matthew, now a tall teenager, has watched me grow stronger. And there was me worrying I wasn’t going to be good enough – I’m a mum he’s proud of!

Matthew has run the Junior Tough Mudder and I’ve ran the Manchester 10k in scorching heat, both to raise money for Crohn’s and Colitis UK.  At the start of our journey we were both finding our feet … just look at us now!

Crohn’s Is Our Teacher

Together Crohn’s has taught us not to judge, to care, to listen, to understand, to be patient. But most of all to enjoy life!

 

If you had told me 12 years ago, when I was diagnosed with Crohn’s disease, that I would be able to make a living sharing my patient journey and being a patient advocate, I wouldn’t have believed you. That changed in the weeks leading up to delivering my son, Reid. That’s when I came across a website promoting WEGO Health Experts, an on-demand hiring platform. I was immediately intrigued and completed an online profile describing my background and areas of expertise.

WEGO Health Experts provides me and others with complex health conditions an avenue to participate in freelance consulting opportunities on my own terms. While my disease may be a big part of my identity, it does not define who I am or take away from my professional skills and talents. At first, I thought the platform seemed too good to be true.  Then, before Reid had even reached two months, WEGO Health’s director of marketing reached out to me about the possibility of doing media relations to help get the word out about the company’s mission and hiring platform. The opportunity was too good to pass up.

The WEGO Health Experts platform is empowering for all of us who are actively working as patient leaders in the chronic illness community. Since its launch in February, more than 400 patient experts have joined the network. Rather than feel isolated and alone in our experience, we have the ability to bring the patient perspective to healthcare innovators.

We have the added benefit of a flexible and comfortable work environment and the chance to bring our combined professional and patient experience to bear on big challenges in healthcare.

This platform is an enabler. It enables me to take a step back, reflect on everything I’ve encountered since the day I was diagnosed, and use that knowledge to inform and shape the future of healthcare. That’s powerful!

As a member of the chronic illness community, those of us with professional backgrounds are part of an untapped workforce. WEGO Health recognizes this and provides the tools to connect with forward-thinking companies who want to hire freelance consultants.  It does my heart good to know that I’m able to stay home with my son, while still working part-time and utilizing my talents. It’s an emotional and thought-provoking revelation that those dark, difficult days in your journey can help us and our families thrive down the road.

We all have a story to tell. Our insight and our personal connections within our chronic illness communities sets us apart, and it’s incredibly rewarding to know we can help influence research and conversations. We can be a voice for those in our own community and inspire others. Instead of worrying about the unknown and when my next flare up or hospitalization may occur, this platform allows me to hold the reins and take charge. I can decide which projects make the most sense for me given my story, my skills and my busy days as a new mom.

With the uncertainty of healthcare and the expense of high cost medications, tests and hospital visits, this allows me to contribute to my rainy day fund and have confidence that when the going gets tough and I have the burden of getting healthy, I have some additional income to ease the burden of financial concerns.

Prior to Reid’s arrival, I worked full-time as a journalist and writer. I spent nearly 10 years at TV stations in Illinois, Minnesota, and Wisconsin as a news anchor, producer, and reporter. I then spent more than three years doing corporate communications and public relations. This meant countless days of putting a smile on my face, while my pain level escalated on the news desk or in the boardroom. Now, at this point in my life and career, as a new mom, I realize each experience, both at work and at home, brought me to where I am today as an independent freelance Patient Expert.

Interested in learning more? Check out the WEGO Health Expert platform, fill out an application and see where your valuable patient and professional experience takes you.

Podcasts are powerful in our digital world. According to studies, 57 million Americans now tune in each month to a podcast…that’s up 23 percent from last year. It’s a way to share your valuable patient journey and personal experience with the masses, simply with the click of a button. As someone who’s battled Crohn’s disease for more than 12 years, it’s empowering to be able to share my story not only through the written word…but also verbally. Podcasts literally give people like us a voice and a platform to share our impactful stories. It’s one thing to read someone else’s words… it’s another to hear them relive their diagnosis and talk about their battles.

One podcast in particular has been catching my eye. This summer, Bill Coon launched the “People You Should Know” podcast. As a two-time heart transplant and kidney recipient, Bill wanted to create a place for people to share their unique stories with the masses, raise awareness and do it all in an upbeat, fun and informative way. I was just featured on his podcast last week. Click here to check out the interview.

“If the person is interesting or has a great amount of knowledge on a topic that I think listeners will find to be interesting, I am open to exploring their story. To put the wide range of guests into perspective, the show has already featured advocates of three different illnesses, a lovely woman who moved to Sri Lanka to use her veterinarian skills to help the stray dog population and an individual who left his life behind to travel the globe on a bike. Future guests of the podcast will include a finance expert, a well-known sports reporter and a handful of people who are running interesting nonprofits,” said Bill.

Between social media, blogs and podcasts there are so many avenues and ways for those in the chronic illness community to connect and help one another. This past week I had the opportunity to video chat over Facebook with a young woman while she was in the hospital battling Crohn’s disease in Spain. I was able to start talking with a mom in Michigan who’s four-year-old daughter was recently diagnosed with Crohn’s.

As the network grows, we get stronger from one another. While chronic illness can be incredibly isolating, it’s also liberating to be able to find this invaluable network of people who feel what you feel and who understand your current reality. Give it a shot, you won’t be disappointed. Just because what we’re battling is invisible, doesn’t mean we need to be invisible to one another.

Podcast spots for Season 1 of “People You Should Know” are almost filled, but Season 2 is in the works. Reach out to Bill here if you believe you or someone you know is someone he should know.

It’s safe to say the month of July has been my least favorite month for the last 12 years. July 23, 2005 was my own personal “D-day”…the day I was diagnosed with Crohn’s disease. I managed to stay out of the hospital and control my disease with oral medication until JULY 2008…fast forward to JULY 2015 and I was hospitalized with my third bowel obstruction in 16 months and told I would need bowel resection surgery. The month of July is just not my friend! When I got engaged my mom and I looked at one another and knew the wedding would not be planned during that month. As August approaches, I always feel a bit of relief.

I can hardly believe yesterday marks 12 years since I was told I had a chronic illness, for which there is no cure and one year since I started this blog. Here’s a letter to my old friend, Crohn’s.

Dear Crohn’s,
You’ve been a part of me for so long now, it’s difficult for me to remember my life before you. You’ve challenged me, shaken me to the core, tested me and taught me. You’ve pushed me to my limits, but grounded me at the same time. You’ve caused me to think about health in a whole different light. The stigma of living with you and the lack of education out there about what you are surprises me to this day. You are so much more than a “bathroom” disease. You are so much more than a bad stomachache. You demand constant attention and don’t care who has plans, because you do things on your own watch.

You perplex me just when I think we’re in a good place and I have you figured out. You love to play hard to get and rarely take my feelings or worries into consideration. You test my patience and have created a constant inner dialogue in my head since the moment the doctor opened up his mouth and uttered the words… “You have Crohn’s disease.”

I will give you credit though, for the most part you’ve responded well to medication and allowed me to keep my drug regimen in check the last nine years. I’m thankful you’ve enabled me to stay on Humira and that I have yet to build an antibody to the drug, even though I went off of it for three months while healing from my bowel resection surgery.

You obviously love when I’m pregnant…you tempt me to want a huge family! Even though you’ve stricken me with several hospital stays, surgery, scary ER visits, tests, pokes and prods…you stayed silent on my wedding day and enabled me to become a mom without causing one complication or issue. For that, I am eternally grateful.

You’ve also empowered me and brought clarity to my life about what’s important and how far a compassionate heart can go. While most the time I think of you as my greatest enemy, at times you’re also my greatest ally. You show me people’s true character, and who is a true friend. You shed light on who I can lean on when I’m too weak to stand on my own. You helped me navigate relationships and realize that Bobby was the best person and caretaker a woman could ask for.

When you decided to strike I was a frail 21-year-old girl, fresh out of college, wondering how I was ever going to live a normal life and work full time. In the last dozen years, you’ve been with my every step of the way and witnessed firsthand how I’ve overcome each setback, each flare up, all the scares and all the daily worries. I hope you’re scared of me now.

Here’s to many more years,
Natalie

Bullying. Think of it however you want. What do you envision? Has it happened to you? This morning while feeding my son I was casually looking at Twitter. I was absolutely flabbergasted and appalled by tweets made by a “journalist” with 46,500 followers about a woman with an ostomy bag. I personally do not have a bag, but I know many people who do. And the hateful, hurtful and shocking words made me feel sick. In my twelve years battling Crohn’s I personally haven’t been targeted by hateful banter, but it’s so sad to think others with chronic illness are targeted. Here are some of the tweets (that have now been taken down-excuse the language)…

“She can’t help but talk shit. She has such a problem w/ shit in her body she has to wear an ostomy. Being full of shit is her actual illness.”

“I could care less about her or her illness. She doesn’t deserve my sympathy or respect. Sucks for her.”

“I’m not the one w/ a shitty hole in my stomach virtue signaling about how my stomach hole is cute. Why lie to her & tell her it looks good?”

“I’m not making fun of her. I am making a factual statement. She is actually full of shit. Ppl who are walking toilets shouldn’t throw shit.”

“Your friends are lying to you. It isn’t attractive. When you post pics like that you’re just asking for a confidence boost.”

I think you get the idea. I’m not one to instigate or enjoy confrontation. As a journalist…and just a decent person, I’ve always done my best to steer clear of putting anything out on social media or my blog that could create anger, seem biased or one-sided. But, as a member of the inflammatory bowel community, as a voice for the millions who suffer in silence and as a new mom…I just can’t let this go.

I commend each and every IBD patient who proudly shows their ostomy bag like a badge of honor. You know what, you deserve to. What you have endured to get to that point and what you experience physically, mentally and emotionally each day is difficult for someone like me to comprehend.

When I scroll through social media and see men, women and kids in bathing suits or work out clothes and not hiding their bag in shame, it’s empowering. It makes me smile to know these people aren’t letting their disease or their personal situations hold them back from living a full life. Rather than hiding their bag or being embarrased, they are showing people all over the world that your quality of life doesn’t have to be destroyed or hindered because you go to the bathroom differently than everyone else.

Is having a bag ideal? No. Is choosing to rise above your struggle and not let it hold you down incredibly inspiring. Yes. So when you see tweets like the ones above, brush your shoulder off…drown out that noise and know there are millions of others who look to you as a hero. Shame on anybody who thinks otherwise and shame on the keyboard warriors who can spew such hate.