Today I will give myself my 236^th Humira injection. This past week marked nine years since I began giving myself the biologic drug to help manage and control my Crohn’s disease. Ironically, this past week I also had the opportunity to give two speeches in Chicago about my patient journey and what it’s like to be on Humira.

During my speeches, I explained why I chose the injections vs. getting an IV infusion of a different biologic. I chose Humira because at the time I was a morning news anchor and I was private about my disease battle. I didn’t want to be sitting in a public place, hooked up to an IV in front of my viewers for hours at a time. I also chose Humira because of the convenience and the ability to give myself the medication in the comfort of my home. It’s a discreet way of treating my disease. A plain Styrofoam cooler box arrives to my doorstep, I put the injection pens right in the fridge and every other Monday night I go through the motions of administering the injection.

During the question and answer portion a man in the crowd asked me a question that perplexed me a bit…and still has me thinking. I had explained how painful the injection was, how the medication feels like liquid fire running through your leg for those 10 seconds you need to hold it in. It’s not like a typical vaccination or shot you receive at the doctor’s office. Humira sets the bar for me when it comes to pain. To give you an idea I thought my Humira was wayyy more painful than my epidural and spinal block before my scheduled C-section.

Knowing that—he wondered if God forbid my son was ever diagnosed with inflammatory bowel disease if I would prefer for him to go with Humira or one of the IV infusion drugs. I paused for a moment…the thought hadn’t even crossed my mind yet. It made me wince even thinking about my son having to endure such pain.

I told him if it was necessary I would much rather have my kids do the Humira injections, because rather than having to go to a hospital or doctor’s office and sit amongst others who are battling illnesses, I would be able to sit on the couch next to them and we could do our shots together. After that 10 seconds of pain Reid would be able to go back outside and play with his friends, he would be able to go back to playing with Legos on the floor. His medication wouldn’t need to be such a big part of his life. It would be our normal routine and we would face the disease head on together.

After the question and answer portion a young lady came up to me…she was probably about 20 years old. She said her mom has battled an auto immune disease her entire life and that she’s always been her hero and that I’ll be the same for my son. Another audience member took the elevator with me during the break. He told me that when he was 13 years old, his dad was diagnosed with Crohn’s disease and that he’d been in tears throughout my entire speech.

Having the chance to hear from young adults and people who are familiar with what inflammatory bowel disease does to loved ones once again provided great perspective. It gave me newfound hope that whatever flare ups or hiccups I have with my disease journey as a mom, will only make my children stronger.

People cross paths in our lives—whether in person or virtually, for a reason. I honestly believe this. Each relationship, friendship and interaction has meaning. In the past week, I’ve been intrigued and almost taken aback by a few interactions that I just had to share with you.

I was at a bridal shower with 15 women. Ironically, out of that group two of us battle Crohn’s disease and one woman’s husband has it. First off, scary how prevalent inflammatory bowel disease is becoming. Second, I was enamored by my lunchtime conversation with a woman who was diagnosed with the disease more than 40 years ago. She had heard about my blog and brought up the fact that she too has Crohn’s disease, and was diagnosed when she was only 17 years old. Now in her 60s, having raised four healthy children, I had a million questions I wanted to ask her.

Her attitude about Crohn’s inspired me. She acted almost flippant about the whole thing. She can’t remember how many bowel resection surgeries she had, she is on no medication, eats whatever she wants, didn’t pass on inflammatory bowel disease to any of her children and had a successful career in nursing. Damn, this woman is my new hero! Hearing her perspective and how casual and comfortable she was with sharing her story gave me hope that as I grow with my illness and get to be her age that I too can be like her someday.

A few days passed and I noticed on Instagram that I had four “unapproved” messages in my inbox. I hadn’t seen the notifications and just happened to come across them. Each of them was from a female with Crohn’s…each pulled at my heartstrings. Teens, prospective moms, pregnant women and newly diagnosed girls in their 20s…all asking ME for help. I was holding my son when I came across these messages. My eyes filled with tears. I felt a sense of accomplishment and heartache at the same time. I want to share one message with you from a 24 year old named Emma, from Spain:

“Hello…I don’t really know how to start or even if I will ever get a reply, but here it goes! I have just been diagnosed with Crohn’s disease and it’s turned me upside down and I’m really struggling to get my head around it all…24 years old with a lifelong illness.

 

How did you cope? What is everyday life now actually going to be like? How long did it take before you started feeling normal again? I just can’t seem to stop crying at the moment, I know I need to be strong…but, I don’t feel like I can. Anyways, sorry to bother you! I really do hope you reply. XX”

 

When I read that message. It brought me back. It brought me back to the day I heard the words “you have Crohn’s disease” at age 21 while in the ER at my hometown hospital. My mind raced back to being a young 20-something now carrying the burden of knowing that for the rest of my days, I would be fighting an invisible, chronic illness that would bring about a great deal of pain. Pain I had previously experienced without any answers, but pain that was only the tip of the iceberg.

I immediately wrote back to her and let her know that the diagnosis is the hardest part of the journey. When you’re told you have a disease—for which there is no cure, and you are so young…it feels like you are suffocating. You can’t even begin to gather your thoughts because there are so many unknowns. You feel so sick and so weak, the thought of having enough stamina to fight for feel good days seems nearly impossible.

While the disease will always be a part of you—who YOU are, changes. You will find an inner strength that is ignited. You will be able to gather perspective and find comfort in helping others. You will come to realize that while you have Crohn’s, it’s not your identity. It doesn’t need to dominate all your thoughts and all your being. Yes, it’s going to be a part of you for the rest of your life, but it’s in your hands to take all the good and all the bad and make it your own story.

I’m here to tell you—you can get married, you can have babies. You can travel. You can do it all. While the disease will hold you back at times, you don’t have to limit yourself from enjoying all the beauty that life has to offer. Ask anyone with inflammatory bowel disease and they will say the same thing. It’s an awful, debilitating disease that’s hard to handle—but, at the same time you will learn so much about yourself, those around you and how to overcome all of life’s hurdles. Having IBD isn’t a death sentence. Nobody wants it, it’s not fun…but you can live with it. You can thrive and be whoever you want to be, and do whatever you want to do.

The flare-ups, hospitalizations, pokes and prods, tests, side effects of medication, surgeries, etc. are going to be tough…but, in time those moments start to blur in your memory…and each time the disease brings you down, it’s nothing new. You learn what you can tolerate, when you’ve pushed too hard and when you need to take a break and slow down. You will be comfortable communicating with those around you and explaining how you are feeling and what can’t be seen with the naked eye.

And someday…maybe we all can be like that amazing woman I met at the bridal shower.

 

Hey there. I see you. Do you battle chronic illness in silence…and maybe even with a bit of shame? I feel your pain. I kept quiet about my fight with Crohn’s disease for 9.5 years. It wasn’t easy, but I just didn’t feel ready to share my story and be labeled as “Natalie… the girl with Crohn’s disease.” I know it’s overwhelming, I know what a burden it is to be in a crowd and have a secret that no one knows about. I was that person fighting an invisible illness and only sharing with those close to me from age 21-30.

Nobody wants pity or sympathy or to be thought of as different. But, let me tell you what it feels like when you finally make it known that a disease is part of your being. It’s freeing. It’s cathartic. It’s empowering and it’s powerful. Your experience as a patient and as a person is like no one else’s. You have the ability to inspire others by sharing your struggles and your triumphs. Just because you battle chronic illness doesn’t mean you can’t accomplish all you want to. The only person holding you back…is you.

By sharing your story you open yourself up to a network of online strangers on social media who quickly become friends and your most trusted cheerleaders. We lift each other up. Because even though we may be hundreds or even thousands of miles away, we can fathom what it’s like to battle a flare and face the unknown every hour of our lives. It takes some courage to spread the word and be an advocate, but once you do, you’ll wonder why you ever held it all back.

When it comes to motherhood, please know that you are not alone in your worries and concerns. There is a whole mama tribe online and in your community that gets what it’s like to have chronic illness as a parent. I find it so beneficial to reach out and talk to fellow moms and prospective moms on social media. It’s amazing how quickly you connect and how easy it is to relate to one another. Having a chronic illness like Crohn’s and having a baby pretty much makes you a bad ass (no pun intended). 😉 You got this! And when you look at that amazing miracle YOU created each day, you’ll feel an inner strength to push through the hard days that much more.

During my pregnancy and in the three months since delivering my son, I’ve quickly come to realize the power of patient expertise. If you’re reading this wondering if you should share your story, the answer is YES!!! Please do, because everyone…including myself, can benefit from your experiences, viewpoints and perspective.

I have some exciting projects, speeches, podcasts, and articles in the works that I can’t wait to share with you guys. This month marks my 12^th anniversary with the disease…I’m amazed at where the journey has taken me thus far, and I look forward to candidly sharing it all with you.

 

This weekend my friend’s daughter celebrated her 4^th birthday. Her brother and sister celebrated from above in heaven. Peyton, Parker and Abigail were born on June 23, 2013. It’s a phone call I’ll always remember—that my dear friend went into labor with her triplets at only 22.5 weeks gestation. In that moment, prior to meeting my husband and prior to becoming a mom myself, I thought I understood their pain, suffering and disbelief. Even four years later, those moments in the NICU, seeing Abby’s memory box in the hospital the first time I visited, saying goodbye to Parker, attending two baby funerals in two months…all seems so fresh.

Peyton has been a pillar of sunshine, sass and all that’s beautiful in the world since she decided to make her grand entrance. While living in Springfield, Illinois her mom and I bonded over our TV careers and love for watching the Bachelor with a glass of wine and some homemade brownies.

Week after week I watched Peyton surpass expectations and reach unthinkable milestones. One of my last nights in Springfield, prior to moving to St. Louis I went over to Stacey, Ryan and Peyton’s house to bid them farewell. Peyton crawled to the door.  I thought THAT was amazing. Little did I know what this darling little girl would be capable of four years down the road. I watched in amazement last summer as she walked down the aisle as my flower girl. To say she’s special to me, is an understatement.

I found it eerily ironic that Stacey and Peyton paid us a visit to meet Reid on May 27. Reid was 60 days old at that point. Stacey and Ryan’s son Parker only lived til he was 55 days old. Around that time, I would look at my son and think how unimaginable it would be to have to say goodbye at that point. How heart wrenching it would be to know that your little boy never got to experience fresh air on his cheeks or leave the hospital as most babies get to after a couple of days. The list goes on and on. While the visit with my dear friend and Peyton was sweet, Stacey and I shed some tears thinking about sweet Parker.

As my friends celebrate and honor Peyton, Parker and Abby’s 4^th birthday, they are also celebrating a year of their non-profit charity, Triple Heart Foundation. The foundation provides peace of mind to families who are in the trenches with little ones in the NICU. They just launched “55 Days of Summer.” It’s more than just a fundraiser, it’s a chance to see how random acts of kindness can help make our world a better place.

“While being a parent to children on earth and in heaven is difficult, all three of our children gave us new purpose in life. We were helped tremendously during the summer and fall of 2013. Strangers sent us gifts, cards and lifted us up in prayers. So, we want to pay it forward through Triple Heart Foundation,” said Stacey.

They have a huge goal—but, I know they will reach it…because that’s what this family does. They continue to beat the odds and inspire others. They are looking to raise $5,500 this summer. Donations can be sent through their website, you can send books, or simply spread the word. Every heartfelt effort counts. For a list of book suggestions or to donate, click here

At Peyton’s birthday party yesterday, as I held my son Reid…I looked at Stacey and Ryan with an even greater sense of respect and love. This family is the perfect example of overcoming obstacles, taking hardship and finding ways to turn that sadness and perspective around to help others. The flashbacks of Peyton fighting for her life in the NICU were overshadowed by watching her struct around with her friends in the backyard and laugh as she went down the bounce house water slide without a care in the world.

Going to Target. Not a big deal, right? For me, it took 11 weeks until I felt confident bringing my son to the store with me. That may sound crazy. But, I have my reasons. Throughout my entire pregnancy, in order to keep my Crohn’s disease in remission, I chose to follow doctor’s orders and continue taking my biologic drug, Humira…along with a pill called Lialda.

I’ve been giving myself Humira injections since 2008. Since I started the shots I’ve known that the drug suppresses your immune system. If someone is sick around me, I am much more susceptible to catching their illness.

So, as a first-time mom…you can imagine why I was a bit apprehensive to take my son out in public or allow just anybody to hold him. My pediatrician let me know at his 2-month appointment, that his immune system will be suppressed until he’s about 6 months old since Humira passes through the placenta. My gastroenterologist team agreed with my pediatrician that Reid should not receive live vaccines (aka the Rotovirus) and that until he was vaccinated at 2 months, he needed to keep a low profile for his own protection.

Humira is “safe” for pregnancy …that’s the hope anyway, which is why I chose to only breastfeed Reid for three days. Gave him the colostrum (aka liquid gold) and then, as hard as it was (and much more emotional than I thought)… we started him on a bottle since there are no long-term pregnancy studies associated with the injection and breastfeeding.

This week, I decided to take Reid to Target on a whim. I was driving home from my mother in law’s house after a nice visit. Reid was asleep in the backseat. His next feeding wasn’t for an hour. I figured this was a good time to try this out. The experience of putting my son in the cart and bringing him into a store for the first time was empowering and exhilarating. I kept checking on him and smiled to myself as my new little shopping buddy had sweet dreams as I filled the cart around his car seat.

I know keeping him “in a bubble” isn’t going to be healthy for either of us. Staying out of public stores—whether it was a grocery store, the mall…or Target…for 11 weeks hasn’t been easy. But, my husband has been incredibly helpful and we take turns running errands when need be and leave Reid at home.

For those who haven’t walked in the shoes of someone with a chronic illness or someone whose child is immune suppressed (no matter what the reason), it may be difficult to understand the importance of this decision. When you live with an illness every day of your life for nearly 12 years (whether you’re in remission or not) it’s part of your daily life and you learn to make sacrifices to protect the healthy days you have. I know I’ll be on Humira for my future pregnancies and no matter how big my family is, we’ll find a way to keep a low profile when it matters most.

I’m inspired by my Godmother who raised three kids four doors down the street from me and spent YEARS without going in public since her middle son was the eighth newborn heart transplant in the United States. The slightest cold or infection could have taken his life. As cousins who grew up more like siblings, we entertained ourselves at home or outside in the backyard. We took every precaution to keep him healthy and safe. I wore masks for years as a little girl playing alongside them.

You make your situation doable and do what it takes, because nothing is more important than health and family. My cousin Bill was FIVE years old before he went to a movie theater. Him and his siblings saw Pocahontas with my siblings and it’s a moment we all remember to this day.

I’m glad my husband and I have waited as long as we have to bring Reid out in public. It will do my heart good to know when Reid’s 6 months, that his immune system will be like most other babies on the block.

Just like with chronic illness, with motherhood, it’s imperative to celebrate every small victory and accomplishment along the way, no matter how big or small it is. Now, for that first trip to the grocery store…

Sleep deprivation and coffee go hand in hand for most parents out there. But, for those with Crohn’s, it can be a recipe for disaster. My son is almost 11 weeks and has been spoiling us for the past four or five weeks, by sleeping through most the night. But there were plenty of nights along the way…and still every now and then, where getting a solid night’s rest is nearly impossible. Even when babies sleep, for mom and dad you’re practically sleeping with one eye open waiting for a sound or movement from your little one. I ran into the same issue while working as a morning news anchor for seven years. A 2 a.m. alarm clock for work is difficult to deal with…without caffeine.

For most—coffee is a must. Fire up the bottle warmer and the Keurig. Am I right? For me, it’s a game of Russian roulette. Do I want to risk the chance of feeling awake, but also feel stomach pains and the need to run to the bathroom? Some days, I feel like more of a “rebel” then others…and it feels like the only option if I’m going to be functional for myself and my son while my husband is at work.

Other days I do my best to use a shower and sunshine to feel awake. It seems like an easy decision for all the non-Crohnies out there…I hear it all the time from family members and friends (especially the days I complain about being in pain!). “Stay away from coffee”… “I wouldn’t drink that if I were you”… “Did you drink coffee today?” I feel like I’m surrounded by the coffee police. It almost makes me want to drink it even more to try and prove all the naysayers wrong.

This morning I enjoyed a nice mug of coffee. Of course, the minute I put the K-cup in Reid started crying. So, I grabbed my cup of joe and sat with my foot rocking his Rock N’Play while I soaked up the liquid energy. He quickly dosed off into his angelic little sleep state. A matter of minutes later I ran to the bathroom…of course, he starts screaming, again.

As I sat on the toilet with the door open, trying to calm him down and go as fast as I could…I felt guilty that I once again gave into the need for caffeine. I had been up since 4:30 a.m., it seemed like a necessity. But is it, really?

The jury is still out when it comes to the topic of Crohn’s Disease and caffeine. In other words, there is not substantial research that shows the impact caffeine may have on individuals with inflammatory bowel disease. But, there’s common knowledge that caffeine has a laxative effect, so if diarrhea is already a problem, it could create even more of an issue. Caffeine is also highly acidic and acts as a diuretic, which can lead to dehydration. It’s also known to elevate stress hormones and divert blood from the stomach, which can worsen digestion.

While this seems like pretty solid evidence to stay away from caffeine,  it’s still tough to refrain because sometimes the 10 ounces makes no difference to how I feel at all. It’s either—phew, now I can conquer the world…or why did I do this to myself, again?

Yesterday marked my one year wedding anniversary. In the days leading up to the special milestone, I got to thinking about how daunting it can be to have a chronic illness and wonder if you’ll ever be able to find someone who loves you, despite your health imperfections. Since I was diagnosed with Crohn’s at age 21 in 2005, I’ve experienced how the disease impacts the way relationships play out. It’s not always pretty, but it does provide extreme clarity about people’s character.

Through social media I’ve come across many people and articles that express concern about ever being able to find a lifelong partner and worry about whether having a child is ever a possibility.

I’m here to tell you…you can have it all. Your disease does not need to limit you in this aspect of life. So, what does one look for when it comes to finding the perfect partner who also makes the perfect caretaker???

You need someone like my husband, Bobby. Prior to meeting me, Bobby did not know what Crohn’s was. When we went on our third date, I told him during lunch. It was my way of being transparent and laying it all out there. Was I nervous? Of course. Was it a relief to get it all out in the open? Absolutely. Has he been there for me every feel good and difficult day ever since? Yes.

Six months into our relationship I had a bowel obstruction that landed me in the hospital for five days. In the blink of an eye, I went from feeling fine to being rushed into the ER. Bobby quickly saw how debilitating, painful and scary Crohn’s can be. In that moment he went from being my long distance boyfriend to my lifelong rock.

The first time Bobby experienced a hospital stay with me was the toughest for him.  “I feel bad even saying anything is hard for me when I know your insides are twisting and torturing you,” he told me at the time. “But there is no better phrase than ‘it sucks’ to describe how I feel, knowing you’re going through hell and there’s nothing I can do.”

“I felt completely helpless,” he recounts. “I remember going to my car and just sitting there thinking about everything that had happened. My mind was going in a million different directions, and I was feeling every emotion. I was tired, anxious, and worried. Yet it wasn’t even 1 percent of how bad you were feeling. Part of me wanted to punch something out of pure frustration, while another part of me was ready to break down and just cry for a moment.” Fast forward more than three years later…I interviewed Bobby this week to get a better feel for what it’s like to be on the other side of things—as the constant caregiver.

NH: What advice do you have for those whose significant other has chronic illness?  BH: I don’t look at you as having a severe chronic illness. I don’t let that be the thing I think about with you. I find I almost reject the idea of you being sick until we’re dealing with a flare up or rough patch. My advice would be to treat the other person like everyone else, don’t make them feel like they are any different because of the health issues they face. Be by their side and think of anything and everything you can to take their mind off the current situation. Every person is different—but, when you love someone you know what takes their mind off things and what they like best.

NH: What have you learned since we met in summer 2013?
BH: At that time I just knew the word Crohn’s… I had no clue what it entailed or meant. When you first said it, I wondered if it was contagious and how it impacted your life. It’s been nearly four years and I’ve witnessed how devastating it can be. It’s hard to see the person you care about in so much pain. I always try to be supportive, but also keep our life in perspective and recognize that there are many people all over the world going through a whole lot worse. We’re both still breathing, both still living. You may be in pain, but we’ll push through. To this day, I’m fearful of emergency situations and complications that may arise.

NH: When I was wheeled away to surgery for my bowel resection in 2015… what crossed your mind?
BH: I felt sad and fearful. I envisioned you being nervous and scared, it sucked watching you be wheeled away because I wanted to be there with you. After surgery…I was relieved the procedure was over, but was still concerned because I know with Crohn’s you’re never entirely out of the woods since there is no cure. When you’re in the hospital whether it’s for Crohn’s flare ups or when you were delivering Reid there is a certain vulnerability about you that makes me want to do all I can to take care of you…and it’s easy, because I hate seeing you like that and just want to help you get back to feeling 100 percent.

NH: How has living with and loving someone with chronic illness inspired you or changed your perspective?
BH: It’s a constant reminder that this isn’t going away…when I see you give yourself shots and how painful they are for you it’s a reminder that you go through a lot to keep everything at bay. It inspires me that despite what you go through with the disease that you have so much energy all the time and are such a ray of sunshine through it all.

NH: What advice do you have for those with chronic illness who are concerned about finding “the one?”
BH: Don’t let it limit you in anything that you do. Don’t feel like you need to share it until you are ready. I wouldn’t be fearful of it being a deal breaker. If the person is worth your time and is in it for the right reasons…and truly cares about you, it won’t matter. You are so much more than “Natalie with Crohn’s disease.” There’s no downside in sharing. There’s a good chance the person will feel closer to you for knowing that personal detail and they’ll probably be thankful you were willing to share. Try your best not to be wrapped up in worrying what people will think about having Crohn’s. Be with someone who makes you feel comfortable and at ease with what you are going through. When I knew I liked you, I wanted to be around you and taking care of you when you needed it was and is second nature to me. When you love someone and they are hurting…you
want to be the one who’s there for them.

NH: Aww thanks honey… any last thoughts?
BH: Remember that every moment in life is fleeting and temporary. In the good times and bad… you get through it. Try your best not to worry about things you can’t control…stress is a trigger with Crohn’s. It’s easier said than done…but know you can’t control everything. Stay away from things like corn on the cob and coffee…if you know it’s going to cause issues. I don’t look at myself as being a special person, babe. Anyone you love…you do what it’s going to take to help them. We learn together through each situation, experience and setback.

As a new mom with Crohn’s, there are countless stories of postpartum flares that typically rear their ugly head around 2-3 months postpartum. You hear it from your doctors and from those on social media. Today marks two months since we welcomed our son Reid to the world. Navigating these first weeks as a new parent with a chronic illness has been interesting to say the least. 

Like all flare ups—they tend to happen when you least expect  it, coming out of nowhere to remind you that the disease is still very much a part of who you are. This time of the disease process is unique in that you are almost anticipating and wondering when symptoms are going to strike.

Out of the last eight weeks, I’d say I’ve had about 10-15 “bad” days. Meaning I felt that unwelcome gnawing pain or needed to take pain medication. While it hasn’t been ideal at times, I know it could be a lot worse. My symptoms are certainly not enough to need a hospitalization at this point. I’m hoping I can make it through these “postpartum” months and dodge that bullet.

Reid has offered up amazing inspiration to me when I give myself my Humira injections. For more than eight years, I’ve stared at something on the wall or a photo of a person who inspires me to “get in the zone” when the needle is in my leg. Now, I have my husband stand in front of me holding Reid and I stare into the eyes of my sweet little man. Looking at him eases my pain and is a reminder that I have to stay healthy and be strong so I don’t have to take a break in a hospital bed without him by my side.

The past week there have been countless occasions where I’ve been in the middle of feeding him and felt the urgent need to run to the bathroom. It’s been hard and it’s stressful. When I’m home alone and there’s no one around to swoop him up, I do all I can to muster up the strength to hold it. It’s not easy. Sometimes I don’t even know if I’m going to make it in time to the bathroom. Sure, I could interrupt his feeding and put him down…but, that’s easier said than done. My priority is to keep him happy and content.

Part of living with Crohn’s is dealing with extreme fatigue. Not the kind of tired where you didn’t get enough zzzs the night before. I’m talking about an exhaustion that consumes your whole body. It’s very similar to how it feels that first trimester of pregnancy, when there are days your legs feel like jello and you don’t know how you’re going to make it through a work day upright. The lack of sleep associated with having a newborn and battling Crohn’s can be downright difficult. I’ve combatted that with coffee… which is probably part of the reason why I’m having some “urgency” issues.

Like all change—it takes time, learning and patience. Being a mom and enduring pregnancy and childbirth makes you feel like somewhat of a superwoman. You look at this perfect little human that you created within yourself. So, while there may be some “bad” days along the way, they are completely overshadowed by the incredible ones. The magical moments when your baby smiles at you, stares up at you in the middle of the night while he eats or calms once he’s placed in your arms. While the Crohn’s symptoms are a reminder that I’m not a “typical” mom, they also remind me that despite my medical ailments, I was still able to bring a life into this world…and nothing will ever change that.

World IBD (Inflammatory Bowel Disease) Day was on May 19—it’s a day when patients and caregivers reflect on their health battles with Crohn’s and ulcerative colitis. It’s a day to educate and spread awareness. It’s a day to pause and think about how the disease has impacted your life. Just like many people, I too shared a post on Instagram that day. Without thinking, I instantly went to my camera roll and thumbed through to find pictures of myself in the hospital.

All the posts I saw that day were much like mine—photos of tough times coupled with inspiring and thought provoking words. One post in particular really stuck out to me. I randomly came across an Instagram account for Laura Scaviola. On World IBD day she shared three pictures of herself smiling from ear to ear, looking strong and healthy as a horse. At first glance, I never would have thought she battled ulcerative colitis.  The words that accompanied these photos struck a chord with me:

@mangiapaleo “Can you guess which picture was taken when my disease was flaring? Spoiler alert: ALL OF THEM. Inflammatory Bowel Disease (IBD) is often invisible. Sure I could show photos of me at my weakest, looking skinny in a hospital gown and needles in my arms. I have those photos, too. But the point here is the general public knows little of our struggles because they can not see them. Pictures don’t tell the true story and people with ulcerative colitis don’t always look or act sick. May 19 is World IBD Day—the perfect time to make our disease visible.”

This mindset and perspective really hit home. It made me stop and think of all the social events and work days I put a smile on my face while I was crying inside. It’s a fragile place to be—on one hand you don’t want to complain and come off like a sickly person. On the other hand, if you suffer in silence you create your own prison. No one can help you if you don’t speak up about what you’re feeling.

Here are some photos of me—that take me back and remind me of times I held my head high and kept my illness invisible to others. Here’s a quick backstory to correspond with each.

 

Photo #1: Each year my Greek family hosts a huge New Year’s Day party. I spent the entire get together on the couch, in a ball… in horrific pain. I started a burst of prednisone that night. By the photo—Bobby and I just look like a couple sharing a moment in front of Christmas tree, enjoying the holidays.

 

Photo #2: I was training for a half marathon and had just completed a nine mile run. I felt fantastic. After my run, I drove from Springfield to St. Louis…and started feeling very sick. That night, I was hospitalized with a bowel obstruction.

Photo #3: Just a typical day on the news desk, but I remember having to loosen up the belt on my dress because my stomach was hurting so badly during the newscast.

Photo #4: What started as a fun night out watching the Cards play at Busch Stadium, resulted in us having to leave in the middle of the game due to my stabbing stomach pains. In this photo we had left the stadium and the only “cab” we could find was a guy on a bike with a carriage to take us to our car. I was in so much pain I couldn’t even walk to the car. Our smiles tell a whole different story.

 

 

 

Photo #5: The food tasting for our wedding was supposed to be such a fun experience. Yes, we loved trying out all the different entrees with our parents months before the wedding. But in between each course and taste test I was running to the bathroom in embarrassment. I cried in the stall as my mind frantically thought—how the hell am I am going to be able to eat at my wedding and get out of dress in time to use the bathroom? Lucky for me, I didn’t end up needing one bathroom break the day of my wedding.

 

 

 

 

Photo #6: This photo is from three weeks ago. Several of my close friends came to town for a surprise bachelorette party. While my friend opened gifts that all-too-familiar gnawing pain started…I knew we had a long night ahead. Rather than go home and miss out on quality time with my girls, I popped a Tylenol with codeine and powered through.

The moral of this story—while you may think those who battle IBD are weak or exaggerating their symptoms—think again. There’s a pretty good chance there are countless times when they too chose to stand tall and smile, despite the pain. This goes for any type of “invisible” illness, whether we’re talking about mental illness, diabetes, you name it…just because someone isn’t in a hospital bed or “looking sick” doesn’t mean they are free of health issues and concerns.

From this point forward on World IBD Day and all the days in between, thanks to Laura, I too will choose to share different pictures of myself when trying to educate and inform others about life with Crohn’s.

Close your eyes for a moment and think back to what life was like at age 13. Think about the highs, the lows and everything in between. Now imagine going through all that while battling an invisible illness that your peers in school, friends, family and teachers may not know about.

I recently received an email from a dad with a teenager who battles Crohn’s. They wish to remain anonymous—but their story is easy to relate to.

He was diagnosed with Crohn’s disease when he was 8 years old. Now, as a teenager he’s no stranger to how debilitating and exhausting the illness can be. Sadly, the disease has robbed him of the healthy and carefree childhood most kids are afforded.

“Children are God’s blessing, but we hurt when they hurt. I’m an ex Green Beret, but he’s the bravest, and toughest person I’ve ever met. My mom had autoimmune disease, so I thought I knew this drill, but I was just so stunned by this. I could never have imagined the pain and embarrassment and issues my son faces. But, he’s usually laughing and smiling,” said the father.

As an eighth grader, between dealing with side effects of medication and the need for frequent bathroom breaks, there’s a real struggle to find ‘normalcy’ in the classroom. He said it’s heartbreaking to see his son with a genius IQ struggle to be a part of school and extracurricular activities.

“This school year has been difficult. So much change, so much worry. One teacher was reporting him as tardy unexcused even when he had to run to the bathroom, and he was suddenly threatened with suspension. Imagine cleaning up after a bout, trying to knock down the nausea and pain, and to make it on time to school. It’s very difficult to make school practices, for him to ride a bus, and to endure the social issues (bathroom issues) in today’s zero tolerance school world. We found success in getting a medical letter in his file and working with the school front office. However, schools are just not set up to deal with this well.”

I’m told teachers and students seem to “get it” when prednisone causes his cheeks to become puffy or when he drops close to 20 pounds from his inability to eat and get nourishment, but what’s a person to do when they’re in remission and there are no physical signs that set you apart from the rest? THIS is when communicating with those around you is most important, because unless you speak up, educate others and make sure your voice is heard…you’ll be forced to suffer in silence.

As a new mom who has Crohn’s—here are five tips for families with kids battling IBD.

1. Share your story.

Rather than staying hush hush and worrying that people will think differently of you. Share your story with humor and positivity. Yes, everyone knows having a disease isn’t something to be taken lightly—but attitude is everything. If you come off honest and lighthearted, that’s how you will be received by others. Let those in your circle know when and how you were diagnosed and the challenges you face on a daily basis so it becomes clear that living with Crohn’s is not a walk in the park.

2. Educate the educators

At the beginning of the school year meet with teachers, the school nurse and the school psychologist to discuss setting up a 504 plan and explaining what your child endures on a daily basis. Since being diagnosed myself in 2005, I’ve found unless someone is a medical professional or has a family member or friend with Crohn’s, they have no idea what it is. Include the physical education teacher as there are days when the pain and fatigue may keep kids on the sidelines. You want an understanding in place, so your child isn’t reprimanded for no reason or stuck in an embarrassing situation.

3. Connect with other families who “get it.”

Reach out to your local CCFA chapter and find other local families who are going through the same journey as you are. There is nothing better than meeting those who understand what you are going through. There is a great network of people in the real world and the cyber world who are wanting to connect, share stories, discuss medications, etc. It’s reassuring and comforting to talk to someone about how their bowel resection surgery went or how Humira works for them as a management drug. Each year CCFA holds Camp Oasis around the country. The camp features counselors and kids who battle IBD. It’s the perfect way to see firsthand that you are not alone in your struggles as a youngster with the disease… and have fun at the same time!

4. Take time to be patient and listen.

IBD can be very isolating and daunting. It’s a big disease for little people to have to come to grips with. Instead of making them ‘feel sick’ by constantly asking them how they’re feeling and not allowing them to do certain activities or eat certain foods—let them spread their wings and try. Those with IBD quickly learn their limits. Be a motivator, rather than a hindrance. If your child says they are too sick to go to school, a family party or their soccer game—trust them and don’t question it. Chances are, they are doing all of that in pain many times without you even knowing it.

5. Learn from them.

While I can’t fathom what it would be like for my son to be diagnosed with Crohn’s, I can say that your little one who’s going up against a chronic disease with no cure is going to be wise beyond their years. Each set back and flare up will give your child a very mature perspective when it comes to not taking health for granted. As a parent, celebrate their strength. Commemorate their ‘diagnosis’ anniversary by doing something fun, rather than thinking of it as a terrible day in your family’s history. People with IBD (regardless of age) often feel a sense of guilt. That guilt stems from needing to be cared for (sometimes constantly), missing out on events and plans and the cost for receiving care and taking daily medication. Be mindful of your child’s strength, courage and resilience and recognize them for it.

Special thanks to this strong father and son for reaching out to me and inspiring this article. As a new mom, I can’t begin to imagine how difficult it is for all the IBD families out there. To those with other questions/concerns and story ideas, please email me at lightscameracrohns@gmail.com.