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.