‘My boyfriend who ‘loved me’ broke up with me over the phone once I was in the hospital. My health deteriorated at lightning speed.’: Woman details journey with Crohn’s Disease, ‘You can rise above and flourish’

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“The summer after college graduation was not what I expected. When I crossed the stage at Marquette University in Milwaukee and earned my journalism degree, I had dreams of working in television news. It was a dream I had for as long as I can remember, but in the weeks following that day, my body had other plans.

My health deteriorated at lightning speed. I went from being a perfectly healthy twenty-one-year-old with the world by the tail to a lethargic, weak, and sick person. Day after day I would have chills that would come and go and fevers that reached 105 degrees. Anytime I tried to eat or drink anything, I had excruciating abdominal pain moments after swallowing. I went from having a high energy, bubbly personality to not even being able to walk up the thirteen stairs in my parents’ house. We knew something was wrong, but couldn’t quite put our fingers on it.

Courtesy of Natalie Hayden

My general internist thought it was my appendix. Then she thought it was my gallbladder. But every test was coming up clean. I was one of those people who woke up and showered right away and did their hair and make-up. But it got to the point where I wasn’t even showering because it expended too much energy. My mom, who is a nurse, came home from work and saw me lying on the couch around dinner time in my pajamas from the night before. She told me it was time to go to the hospital and get to the bottom of what was going on.

Thank goodness we did, because after an abdominal CT-scan and a rectal exam, I was diagnosed in the emergency room with Crohn’s disease. To this day, I have no recollection of how I reacted when the doctor uttered the words, ‘You have Crohn’s disease.’ I blocked all emotion from that life changing moment. I don’t know if I cried. I don’t know if I stared forward in silence. I knew I was in for the fight of my life and from that day forward, I had a chronic illness for which there is no cure.

I was hospitalized immediately for dehydration, malnutrition, and to fight the flare up. I had a colonoscopy the next day and I can still remember rocking on the toilet in pain as I tried to drink the disgusting prep, listening to music on my iPod, wondering, ‘Why me?’ I stayed in the hospital for one week and felt completely blindsided and lost. Everyone from my siblings, to my aunts, and my cousins were so saddened to hear of what I was going through and I had countless visitors around the clock. I have a big Greek and Italian family, so you can imagine the support network I had around me at all times! My arms were constantly battered and bruised from all the pokes and prods. How would this disease change the course of my life? Would I ever work in TV news? Would I ever find someone who would love me now that I had a disease? Would I ever be able to have babies? My mind was racing as I tried to come to terms with my newfound identity and what this meant going forward.

Courtesy of Natalie Hayden

I left the hospital on twenty-two pills a day and with a disease that would riddle my body with illness for the remainder of my life. I was on sixty milligrams of prednisone. For anyone who has been on steroids, you understand how they affect everything from your moods, to your looks, to your bones. My boyfriend at the time who had previously told me he loved me never once visited me in the hospital or called to check in. Instead, he broke up with me over the phone, the day I left the hospital. I can still remember walking into my parents’ bedroom and telling my mom about the breakup and her saying, ‘Well Natalie, it’s because you aren’t perfect anymore to him.’ I felt as if my Crohn’s was a scarlet letter and I was unlovable from this point forward.

Here’s an excerpt from an email I wrote after diagnosis: ‘I’m getting tired of my family constantly asking me if I’m doing okay and feeling okay and everyone staring at me while I eat…I just feel like a pity case to so many people. I feel so alone in all this. I’m trying to be upbeat…and I know it is going to take time to get acclimated to the lifestyle changes and everything, but right now I’m just having a difficult time figuring out who I am and where I’m supposed to be in life. The insomnia has left me up every night just thinking and wondering what the future holds and if I am ever going to feel normal again.’

I went from being someone who had aspirations of being on TV to not allowing anyone to take my picture because I was so self-conscious about my moon face from the steroids. I would stay up at night wide awake from the medication, blowing bubbles with my bubble gum and looking at my reflection in the mirror, feeling like I no longer knew who was looking back. In another email in the months following diagnosis I wrote, ‘I know it is something I will always have and I have to get used to it…but it’s hard for me to handle at times. I don’t mean to complain or worry you or anything, I just feel as though I need to get out some of this frustration before I go to bed. I’m scared of getting sick again and having to go in the hospital sometime again…and I just feel like I can’t go a day without a thinking about all the what ifs. You know I analyze so much…haha…it’s like a living nightmare!’

Courtesy of Natalie Hayden

The first few months following my Crohn’s diagnosis were incredibly overwhelming and daunting. But I didn’t allow my illness to rob me of my dreams of working as a TV journalist. Despite fighting a flare up and being on so much medication, I continued to apply for TV jobs around the United States. The search for my dream job was a great distraction and made me feel a bit like my old self. I ended up landing my first TV job in Minnesota that October, only three months after my diagnosis. I wasn’t going to let anything get between me and my career goals that I worked tirelessly to achieve. I got in the car and drove eight hours away from all family and friends to follow my dreams and I never looked back.

To this day, I’m proud of myself for having the guts and the drive to go after what I had worked so hard for, even when I was struggling to cope with my health issues. I went on to work at a TV station in Wisconsin and anchored the morning show, ‘Wake Up Wisconsin,’ for three and a half years. From there I moved to downtown Chicago and worked at a PR agency to be close to family, and then realized I missed working in TV. I moved to Springfield, Illinois and anchored ‘Sunrise This Morning,’ along with the midday show for two and a half years until I decided to leave the news desk and focus on my personal life over my professional one.

Courtesy of Natalie Hayden

While working in TV for nearly a decade, I had several setbacks, flareups, and hospitalizations along the way. Bowel obstructions and an abscess the size of a tennis ball to name a few. The hospitalization with the abscess is one still clear in my mind. It happened over Fourth of July weekend in 2008. I was home visiting family in Chicago when I couldn’t take the pain in my abdomen any longer. We rushed to the hospital where I had received my Crohn’s diagnosis three years prior and I was on the brink of needing surgery to remove an abscess in my small intestine. It took eight tries to get my IV started. Two nurses and a rapid response nurse couldn’t get it, finally they had to call an anesthesiologist to start an IV in my hand. To this day, I’m always apprehensive about getting IV’s and fear the worst. I have terrible veins and give each person two tries—then I force them to get someone else to try.

At the time, I was ‘only’ taking six Asacol (a strong anti-inflammatory for IBD) a day. My gastroenterologist walked into my hospital room and said, ‘The current medication you have been taking is like taking Flintstone vitamins. Your disease has progressed and it’s time to break out the big guns,’ the big gun meaning a biologic. The tears streamed down my face. I can still imagine myself looking out the hospital room window and seeing the fireworks line the sky, watching through tears and wondering what my future was going to hold. I had the choice between an IV infusion (Remicade) or an injection I would do at home (Humira). After a lot of Googling and talking over the pros and cons with my mom, we chose Humira because I could give myself the medication from the comfort of my home versus being in a public place and possibly having viewers see me. Luckily, I’m still taking Humira twelve-plus years later.

While my Crohn’s would sideline me for a few weeks here and there, I chose to suffer in silence and not to share my story with viewers or the public. I didn’t want to be looked at as less than. I didn’t want to be labeled. I wanted to be seen solely as Natalie, not Natalie the sick news anchor. I woke up at 1:30 a.m. for seven years anchoring morning news. The schedule was brutal, but I absolutely loved every minute of it. Part of me feels being able to put on a smile and ‘pretend’ to be someone else for a few hours in the studio each day helped me get through the pain and the worry.

Courtesy of Natalie Hayden

When I left the news desk in November 2014, I decided I would use my skill set of writing, speaking, and sharing stories as a patient advocate in hopes of being the voice I so desperately needed to hear upon diagnosis. I started talking about my hospitalizations and bimonthly injections openly on social media. I stopped trying to pretend my life was perfect and stopped making my social media a highlight reel. I wanted to paint a clear picture for friends and family so they could try and understand my reality. While I have several family members and friends who are extremely supportive, for the most part, unless I’m hospitalized, most people never ask how I’m feeling or how I’m doing, even though I deal with my Crohn’s on a daily basis. I tend to downplay my struggles because I don’t like to burden others with my pain or worries, but I’m working to communicate those better with my inner circle. Because Crohn’s is an invisible illness, if you don’t share what you’re going through, those around you don’t know you need help or a shoulder to cry on. By keeping everything bottled up inside, the only person you are ultimately hurting is yourself.

I’ve gained perspective. I’ve gained next-level resilience. I’ve gained gratitude for the simple things in life. I’ve gained empathy for others and the ability to connect with people around the world who live with chronic illness. I’ve gained a community of support within the IBD family that has shown me it’s okay to struggle, it’s okay to have hard days, and it’s okay to cry from the pain, but it’s also okay to rise above and flourish when you’re able and not feel guilty for it, either. I’m on a mission to educate the public and show them the challenges those with IBD face. While it’s a never-ending uphill battle, with time, you gain more than you lose.

While I was a news anchor in Springfield, I decided to join eHarmony. I was single and wanted to meet someone who I could ultimately spend the rest of my life with. I met my husband, Bobby, after three days on the website. He was my only date and meeting him changed the course of my patient journey exponentially. I told Bobby on our third date I had Crohn’s disease. We were out to lunch on a beautiful August afternoon in St. Louis at a boat park. I wanted to gauge how he’d respond, and if he reacted in a way that made me feel less than or a burden, I was ready to walk. Chronic illness has a way of being an incredible truth serum to see not only the character of potential significant others, but also of friends and family. He asked questions and showed interest but didn’t seem fazed by the fact that I had Crohn’s. It was such a relief once he knew that part of me.

Courtesy of Natalie Hayden

Six months into our relationship, I was blindsided with a terrible bowel obstruction. I can still remember the day perfectly; I anchored the morning news for more than four hours, came home and ran nine miles because I was training for a half marathon to support NICU babies, drove almost two hours to get Bobby’s house in St. Louis, and by dinner I was in the emergency room with an obstruction. In that moment Bobby showed me he was meant to be in my life forever. He never once left my side for the five days I was in the hospital. I wasn’t allowed to eat or drink, but would dip sponges into a cup of water and put them on my gums. He would put my hair up in ponytails and do laps around the hospital corridors with me, pushing my IV pole. He did it all and he never hesitated.

I later found out at one point during the hospitalization, Bobby went down to his car to get a little breather. He sat in the front seat and grabbed his steering wheel and cried in frustration because I had to take on such a painful and difficult disease. That hospitalization solidified the relationship for both of us. He never wanted anyone else to care for me, and I didn’t either.

Fast forward a year and a half, we were engaged and living in St. Louis. I had my third bowel obstruction in sixteen months, which required bowel obstruction surgery. In August 2015, I had eighteen inches of my small intestine removed, along with my appendix. Each hospitalization is unique but also very much the same. It’s extremely upsetting. It’s emotional because you feel helpless and unsure of what the future is going to hold. You look at yourself in the bathroom mirror of your hospital room and feel disgusted and saddened by the frail shell of yourself you see looking back. You feel haggard and like you are trying to function while running on empty.

Everyone wants to call and text and FaceTime, but you don’t feel like talking to anyone. It can be exhausting when people want to visit because you have try and put on your best face. But it’s the visits from friends and family that help break up the monotony of the tests, and the needles, and the scans, and the beeping machines. It’s not always the words shared you remember, because of the medications you’re receiving through your IV, but the actions. Bobby holding my hand and falling asleep on the side of my hospital bed. Bobby bringing wedding planning magazines so I could start to think about what our dream day would look like. Bobby getting the nurse if no one is responding to my call light. He’s always my advocate and my voice if I’m not able to or wanting to speak up on my own.

Following my surgery, I was taken off all medications to treat my Crohn’s for three months to help my body heal. We were in the midst of wedding planning and so excited to start our family after tying the knot. I remember feeling so hopeful I would be able to stay off the biologic and other medications moving forward since I was feeling so fantastic and in surgical remission. I went in for a follow-up appointment with my GI three months post-op, expecting I’d be able to stay on cruise control. Bobby went with me for moral support. I told her about my hopes and she instantly acted like I was crazy. She said, ‘You have aggressive Crohn’s disease. You’ll always need to be on medication. If you don’t go back on your biologic now, you’ll be back getting surgery in less than five years.’ Hearing those words made me sob. I was almost inconsolable. It felt so bizarre to inject myself when I felt better than I had in a decade. I was so upset I had to call into work that day and Bobby did as well. We left the doctor’s office in downtown St. Louis on a gloomy November day and walked to get lunch at one of my favorite sushi spots.

Courtesy of Natalie Hayden

We talked everything over and I decided I would follow the doctor’s recommendations and get back on my medicine. The difficult thing about Crohn’s is the unpredictability. You never know when it’s going to rear its ugly head. After going through an intense surgery recovery, I wanted to do everything in my power to stay in remission for as long as possible and be the healthiest wife, and one day mom, that I could be.

While I was in the hospital following my bowel resection surgery, I vowed the following summer on my Crohn’s diagnosis anniversary (July 23, 2005), I would launch a blog. Just as I promised myself, one month after our wedding and the weekend I found out I was pregnant with our son, I shared my blog Lights, Camera, Crohn’s: An Unobstructed View, with the world. Since my blog launched July 23, 2016, I have shared fresh content every single Monday and some Wednesdays! I have written 232 articles for the website alone, along with working on the Patient Advisory Board for IBD Social Circle (#IBDSC), serving as a Patient Ambassador for Gali Health, a Patient Leader for WEGO Health, and a contributor to Everyday HealthHealthy Women, the IBD Healthline appMamas Facing Forward, and IBD Moms. I am also an active volunteer and spokesperson for the Crohn’s and Colitis Foundation, specifically the Mid-America Chapter.

Courtesy of Natalie Hayden

It’s my hope that by transparently showing how my fifteen-plus year journey with Crohn’s has shaped my life, people realize the diagnosis hasn’t stopped me from following my career goals, finding love, getting married, and having kids. There have been several high points and several low points. Now, I look at my son and my daughter and think about how going through pregnancies and bringing miracles into this world has given me a newfound respect and love for a body I had felt at odds with for so long. Remission doesn’t mean you are symptom free. When you have IBD you’re always on pins and needles wondering when the next flare will strike.

When the going gets tough my kids are my greatest motivation to stay strong, they distract me and comfort me. My three-year-old son often grabs a crayon or a toy and pretends to give himself an injection in his thigh. He says, ‘Look mama, I’m doing my shot so I can be all better!’ When I have to run to the bathroom countless times a day, my twenty-month-old daughter knows the drill and follows me there without hesitation. Their level of empathy and compassion from such a young age is a reminder to me that while my disease is nothing I would wish on anyone, it’s shaped me and my family into who we are today and continues to do so. I’ve been in remission for five years and I’m using this time to share my story with others to show it’s often the setbacks and the flares that lead to the greatest comebacks of all.”

Courtesy of Natalie Hayden
Courtesy of Natalie Hayden

This story was submitted to Love What Matters by Natalie Hayden of St. Louis, Missouri. You can follow her journey on her Instagram, Twitter, Facebook, and her website. Submit your own story here, and be sure to subscribeto our free email newsletter for our best stories, and YouTube for our best videos.

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