Why IBD Forces You to Take Off the Rose-Colored Glasses and See Clearly

I remember the first time I put glasses on in fourth grade and no longer saw the world unclearly. I can still recall the first time I wore contacts sophomore year of high school and experienced how crisp life is supposed to look. Prior to glasses and corrective lenses, I thought my vision was how everyone else saw. I recently came across a discussion on Twitter by Jessica Caron (ChronicallyJess) about how you would describe your IBD journey at the beginning—in one word. One woman, Emily Morgan (@EmMorgan27) replied with the word blurry.

That response got me thinking. It’s spot on for so many reasons. Take yourself back in time to the first week you were diagnosed with Crohn’s or ulcerative colitis and the clarity you’ve gained and continue to gain with each year that passes.

When I was diagnosed with Crohn’s in July 2005 at age 21, I remember sitting almost stoically in my hospital bed because I was so overwhelmed by not only what the next day or week would bring, but the next hour. All my plans, all my goals, all my dreams that were once crystal clear became incredibly hazy. The thought of thinking beyond that moment almost made me feel dizzy with dread.

What does this new world of chronic illness look like?

What would be possible with IBD? Who am I now? How has my identity shifted? Where do I go from here? What will my friends think? What will future employers think? What’s it like to be on medication for the rest of my life? Will anyone ever love me? The list goes on. The vision that I had the first 21 years of my life was forever tainted.

But as the years rolled by, I came to realize the rose-colored glasses I wore prior to diagnosis didn’t give me that clear of a reality about not only my own life, but those around me. Prior to Crohn’s I just expected everything to go my way. Prior to Crohn’s I felt invincible. Prior to Crohn’s I didn’t think twice about my health and what a gift it was.

Now life is anything but blurry

Looking back over the past 15 years, my vision of life with Crohn’s is anything but blurry. As I grew older and more mature, this disease of mine made me see the world clearer than I had ever before. The darkest days have led me to the brightest, shining moments. Nothing is taken for granted. Nothing is expected, but rather overly appreciated. This disease forced me to see the strength inside myself and the resilience that I never knew existed. This disease has demanded a lot out of me and still does, but it’s enabled me to discover a newfound gratitude for life’s simplicities and provided me with superhero strength vision of who is genuinely in my life, and who is not.

It’s gotten to the point where I don’t even know if I would have been the same adult if I never got Crohn’s. My IBD is not my identity, it’s only a part of who I am. Now I credit not only my contacts, but my Crohn’s, for improving my vision.

Digging in the Archives: Emails I wrote following my Crohn’s diagnosis in 2005

When I started my blog, Lights, Camera, Crohn’s, four years ago, my main mission was to be the voice I desperately needed to hear upon diagnosis. As I reflect on my 15 year diagnosis anniversary, I thought it may be helpful to give you a behind the scenes look at some of my email archives from 2005…days after finding out I had Crohn’s disease. I’ve never shown these to anyone (other than the recipients, of course!)…but my hope is that in sharing private feelings, you’ll be able to see how my perspective about life with IBD has shifted and evolved since I was a 21-year-old girl feeling up against the wall with nowhere to turn.

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Photos taken in May 2005 (prior to diagnosis) and September 2005 (while on 60 mg of prednisone).

This article is dedicated to the newly diagnosed. We’ve all been in your shoes. What you’re thinking. What you’re feeling. What you’re struggling with. We get it. It’s not fair to compare where you are in coping to someone like me who has been dealing with Crohn’s for 15 years and been in remission for nearly five.

Here are snippets from my emails to friends. Reading the pain in my words and re-living this difficult time can be a trigger, but reflecting and seeing how far I’ve come is also incredibly empowering.

“I’m having a really hard time with this, harder than I ever could have imagined or dreamed…and I’m having a hard time trying to act like everything is great on the exterior. I feel like I’m on the brink of a breakdown…the drugs are getting to me so much. I woke up with visible shakes this morning and have been shaking all day. My moods aren’t me. I feel like I am a different person and that as much as I want to be the old Natalie, it’s just so hard to wake up smiling and happy. I’m getting tired of my family constantly asking me if I’m doing ok and feeling ok 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 that 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 try so hard to be strong and tough about this and it just all stays bottled up and I just started crying and am having a hard time stopping. It’s just so hard. I look at pictures and think back to even graduation time and it just freaks me out that I went from living a carefree, healthy life…to this. I know it is something that I will always have and that 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!”

“I’m sorry if I talk about this too much. I’m sure it isn’t the most appealing or attractive thing to have to hear from your gf…but sometimes it becomes a little overbearing on me…and I can’t hide my fears when it does. I mean I refuse to let this change who I am and the life I will lead, it’s just at times it seems so much bigger than me, and so much larger than life. I know I have been complaining a lot about my puffy cheeks and stuff…and I know that prob gets old…I just get so self-conscious about it…and it just sucks that I have exactly 2 more months left on the steroid. As my dosage gets lower and lower the side effects should stop and start to go away…I’ll believe it when I see it!  I guess it’s just scary to me to see the effects of a drug that are helping me on the inside and hurting me on the outside. I just want to look the same to you as I did the last time you saw me.”

“What I won’t ever apologize for is this summer, because I was going through a living hell, and I saw which friends were there for me and which weren’t. I was ridiculously ill from June 5th-my bday (August 24) and you were angry with me for not keeping in touch. I couldn’t even stand to get myself a glass of water for weeks and was hospitalized for days. I never heard anything from you. I know that people handle those types of situations differently… but that was the hardest thing I’ve ever gone through in my life, and I really needed a strong support system. Battling with a disease and feeling like I completely lost myself has made me have to be a little selfish these past few months. I’m just coming to grips with it all now and thank God I’m feeling well…but it is still an adjustment and has given me a complete different perspective on life.”

You guys. I’m sitting here crying. I’m that girl. I wrote those words. That was 15 years ago and thinking about that time still feels like a knife in my chest. Even though this disease has enabled me to gain so much gratitude and perspective, it still robbed me of a lot. It still hurts…sometimes more emotionally than physically these days since I’m in remission. These diagnosis anniversaries stir up a lot of memories. While I choose to think of it as a time to celebrate another year of taking this disease on with all the strength I can muster, it’s also a time that takes me back to some of the most challenging and difficult moments in my life.

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I colored this in my hospital bed after being diagnosed with Crohn’s.

I wish I could hug that girl and tell her it was going to be alright. The career, the love, the family…it would all happen. If you’re in that difficult space right now coming to terms with your newfound identity following diagnosis or getting over a flare up, please know this disease ebbs and flows. It’s not a constant. The good and the bad moments are fleeting, but your resilience and your confidence in coping becomes so much a part of who you are, it’s hard to recognize who you were before.

The Chronically Honest: The Inspiration Behind the Illustrations

She’s the person behind the artwork that has helped connect thousands of chronic illness patients on Instagram. I’m talking about a 20-year-old woman named Julia who created “The Chronically Honest” in hopes of making others feel less alone. Diagnosed in November 2019 after struggling with symptoms for three years, Julia is coming to grips with her battle against IBD in the middle of a global pandemic.

The first in her family to take this disease on, her experiences thus far have felt a bit isolating. As a college student, she often feels out of place amongst her peers.

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“When I was first diagnosed I really searched for something, whether it be art, or blogs that portrayed all the feelings I was experiencing and let me know that it was okay to feel them,” says Julia. “I was met with countless stories of positivity and turning a bad situation into a good new perspective on life. While I definitely appreciate that and know positivity is vital when dealing with IBD I was searching for something that showed struggle and depicted the crappy side of living with this disease (pun intended)!”

Striving to dig beneath the surface

With The Chronically Honest, Julia strives to show both the ups and the down of living with IBD. She hopes that by showing the struggles, she can make fellow patients feel better understood. Image

“My inspiration to create my illustrations often comes from struggles or triumphs I’m experiencing in the moment. If I am not doing well and have had a bad day, I will create an illustration that reflects that, and vice versa. However, I also get inspiration from others. If I am scrolling through my Instagram feed and see a quote that really resonates with me and my experience and I think it could help others, I will make an illustration based off that.”

Creating art to cope

“My art honestly helps me cope with my IBD more than I could ever imagine. It’s the best distraction and it’s a wonderful outlet for exploring and sharing my feelings. Often when I’m super sick or have to stay home because I’m symptomatic, I will channel my frustration and sadness into making art.”

Julia’s artwork can take her anywhere from five minutes to multiple hours. Some of her biggest fears lie in finding love, becoming a mom one day, and ultimately needing surgery. All aspects of living with IBD that many of us can relate to. Image (1)

The Chronically Honest is as beneficial to Julia as it is the rest of us. Her artwork exemplifies what so many of us feel throughout the rollercoaster ride that is life with IBD. As a 36-year-old, who has lived with Crohn’s for 15 years, I’m constantly amazed and inspired by the work Julia is doing to not only help herself, but others. Her art is raw and genuine—it will speak to you. You will feel seen. You will feel heard. If you don’t already, be sure to give The Chronically Honest a “follow” on Instagram.  She says if you want a custom illustration, you can send her a direct message!

 

Seeing the beauty through the struggle: IBD mom welcomes third child amidst COVID-19 pandemic

Welcoming a baby into the world brings so many emotions to the surface. For IBD mom, Suzy Burnett, of Madison, Wisconsin, it’s been a rollercoaster. She had her third baby, Guy Richard, February 29th. IMG_0146Right before COVID-19 started wreaking havoc in the States. Before Guy was born, Suzy’s biggest fear was a postpartum flare. After the birth of her second oldest daughter, Alice, she had the worst Crohn’s flare of her life and was hospitalized.

Now, as her and her family face the COVID-19 pandemic, she has a new set of concerns. Will Guy be able to stay healthy until his immune system matures a bit? How will her daughters adjust to the new addition? Will she be able to stay well despite being immunocompromised? COVID-19 added a whole new slew of uphill battles that she or anyone else for that matter hasn’t been prepared to deal with. This week Suzy shares her perspective as an IBD mom, doing all she can to protect herself and her family in the face of this viral war.

As anyone who has ever had a baby, you know those first two weeks, involve several doctor appointments. Guy still had high bilirubin levels when we brought him home, so this meant we needed to make extra trips to his pediatrician. Sounds easy, right? There was so much involved this time around. Babies don’t have that immunity built up yet, so we had to use a special entrance, and go straight to our room to avoid any contact with the public. I couldn’t help but glance at the waiting room and see all the long faces adorned with facial masks. It was swimming with sick kiddos. I felt incredibly lucky at that moment as we escaped the chesty coughs, and furniture that had been saturated in illness.IMG_0147

One week went by, and things quickly changed to Zoom and FaceTime appointments. Not only did the baby’s appointments change…but mine did as well. Those of us with Crohn’s disease can’t always get by with a virtual chat about our symptoms. But here we are.

Navigating health issues brought on by my IBD

Many people with IBD develop extra-intestinal manifestations. IMG_0144Unfortunately, when I was put on prednisone last summer, I developed extremely high eye pressures. I was diagnosed as “Glaucoma suspect” at 40 years old, meaning I have some risk of the disease, but no proven damage (yet), so my eyes are monitored often.

I’m also dealing with an external hemorrhoid, thanks to excessive diarrhea, along with an anal fissure, all while caring for three children—one being a newborn.

For those of you who don’t know, an anal fissure is a small tear in the thin, moist tissue (mucosa) that lines the anus. I’m treating the fissure with topical lidocaine and a suppository three times per day. I’ve had my fair share of pain, but this ranks right up there with my non-sedated sigmoidoscopy and childbirth. It feels like broken glass, or razor blades back there. There’s a chance this has progressed to a fistula, and I may require surgery in the weeks to come.

Normally, I would be seen right away, but due to the current COVID-19 crisis, it’s been several phone calls back and forth with the nurses triaging my symptoms. I’m confident the hemorrhoid will go away, but if the fissure doesn’t, I might be facing surgery, and right now a trip to the hospital could be life threatening.

Seeing the beauty through the struggle

Amidst this horrific event that is crippling our world, there is an unexpected beauty that has surfaced. Our wonderful party of five has become closer than close. Yes, there are times when we all go a bit loony, but we’re embracing this time together. My kids are my world, my everything. I need to be the best version of myself, and a huge part of that now and forever is not letting my IBD win. Even when my disease has a strong hold on me, I never let my kids see the struggle.

If you’re reading this and you’re unsure about whether you’ll be able to handle your IBD and motherhood, I’m here to tell you it’s possible. IMG_0148As a woman and a mom of three who has battled Crohn’s since 2008, I believe if it’s your dream to have children, or a family, you should most definitely pursue that. Consult with your GI and OB doctors prior to getting pregnant, and make sure you’re in remission. Pregnancy can be challenging, but if you’re also flaring, it’s that much harder.

As we all experience the change in our day-to-day lives during the COVID-19 pandemic, whether you have IBD or not, there has been a return to simplicity. A back to basics mentality that is exponentially refreshing. Take a walk outside and breathe in and out. Right now, we’re forced to take our time, dig deep, and focus on our inner beings. Much like the experience of dealing with the diagnosis of IBD, it’s a time to peel back those layers and re-discover YOU.

Follow Suzy’s journey by checking out her blog: Crohnie Mommy 

 

 

From remission to flaring in one week: What 2015 taught me about life with Crohn’s

I woke up from my colonoscopy five years ago and was told “You’re in remission”. Tears of happiness streamed down my cheeks. I was in disbelief. Was I dreaming?! It took a decade for me to hear those words, and one week to be robbed of the title.

One week later, I was hospitalized with a small bowel obstruction. The first of three that would happen that next year. So many of us in the chronic illness and IBD community specifically, are constantly chasing after “remission”. But what does remission really mean?

Remission is different for every person, much like IBD manifests differently in everybody. When I heard the word remission five years ago, it felt magical and exciting.

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Celebratory post-colonoscopy cheesecake after finding out I was in remission Feb. 2015.

Hell, my mom and boyfriend (now husband) and I went out and celebrated with a big meal at The Cheesecake Factory. When I flared days later, I started feeling skeptical of the term and came to realize how fleeting and elusive remission can be. I laid in the hospital bed, devastated and dumbfounded by what had just transpired.

It took three bowel obstruction and 18 inches of my small intestine to ultimately be removed in August 2015, for me to reach surgical remission. While surgery is not a cure, my bowel resection provided me with a new beginning. As I approach my five year “remission” anniversary this August,

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Hospitalized a week later with a bowel obstruction.

I remain on edge. I’ve been blessed to be on cruise control with my illness these past few years. My GI has me well-managed on my biologic and vitamins, I know how to read my body when it speaks to me through symptoms, and when I suspect something is going awry, my care team and I nip the disease activity in the bud.

To me, remission is waking up each morning with the expectation that I’m going to feel well and be able to take on the day as planned. Remission is having more ‘feel good’ days than painful ones. Remission is being confident to attend social outings, travel, and do all the things I set my heart out to do, without feeling suffocated by the fear of the ‘what ifs” of a flare. Remission is being able to focus on the part of me that is so much more than my disease. remission blog

Remission tends to the be the “goal” when it comes to IBD, but it’s not always feasible. It’s easy to see posts on social media and feel like you’re failing because your body is failing you, repeatedly. It took me a decade of living with Crohn’s and surgery to be in remission.

While I’m a compliant patient, I don’t take much credit for my remission. I know how at the drop of a hat I could be rushing to the ER, unable to breathe from my abdominal pain. I remember all the flares that blindsided me and I know my body can decide to flip the switch at any given moment. I feel lucky most the time—while my Crohn’s could be worse, it could be better, too. Remission doesn’t mean that symptoms are non-existent, moreso that the majority of the time I feel well with some not so great days sprinkled in the mix. While in this state of remission, I remind myself not to take this time for granted, not to become complacent, and to stay vigilant on managing my symptoms and overall well-being.

Rather than focusing on the big “R” word that’s loaded beyond belief and placing so much emphasis on it, let’s focus on feeling the best we can each day, communicating openly with our physicians, friends, and family, and taking this uphill battle one step and one day at a time.

“My mom has Crohn’s and I do, too”: Why Sam doesn’t allow IBD to take over her life

Motherhood provides perspective. Motherhood shapes us in a way we didn’t know possible. When you’re a mom with IBD, your past and current struggles make you look onward to the future in a different way. Meet Sam Zachrich. _ADP6012She’s a 30-year-old mom and wife from Utah, who works full-time outside the home. She’s battled Crohn’s disease since December 2011.  

Even though she was officially diagnosed a week before her wedding (imagine that!), Crohn’s is something that was a part of her life long before that. Her mom, also has the disease. This week–Sam shares her experience taking on motherhood and marriage, while juggling everything that comes along with a life of chronic illness.

Like someone with a bad knee before a rainstorm. I knew I was not feeling well and the results of my colonoscopy would reflect that. More medication and more doctors is all I heard from my GI. My husband Nate will tell you a different story. He is always my biggest supporter and remembers way more than I do after waking up from a scope. He heard “Sam things look better… your colon is healing… but there are some issues.” All I heard was “issues”. As a Crohnie, it’s easy to focus on the negative of our disease. It’s easy to forget to celebrate how far we’ve come and the milestones we’ve accomplished throughout our journey.

Growing up with a parent who has IBD

I knew my mom had Crohn’s from an early age, but I didn’t fully understand how much pain and hardship it caused her, until I was in college. I had a wonderful childhood, filled with amazing memories. I don’t remember my mom being sick very often. There were hospital visits here and there, I just always had faith that she would get better.

48397243_10213280363469781_8737081387036704768_oMy mom did an amazing job making sure our lives did not revolve around her disease. She did her best to stay healthy and support us. I want my daughter to have the same experience as I had growing up. I don’t want her to ever feel the burden of my disease. I want her to know that no matter how difficult life gets, there is always hope. My mom is the one person I can call who fully understands my struggles. To have another family member that has and is dealing with the same chronic health issues is a huge support. I am very grateful for her.

A mother’s love

My mom was with me for every scope and doctors appointment leading up to my diagnosis of Crohn’s. She was a shoulder to cry on and a listening ear because she completely understood. Feeling guilty is not something we do easily in our family. We try to stay the course and figure out next steps. I think to some degree she had guilt, but she wanted me to stay strong and knew I would be alright. She has always told me to focus on what I can change in the moment.

To this day, she reminds me: Crohn’s will always be apart of your life, it’s what you do with it that matters. 405889_2533476622399_548286302_n

I try not to focus on passing this disease to a third generation. I know that one day I might be in the doctor’s office with my daughter listening to the same talk I received December 2011. Hopefully we will never have to go there, but if we do, I know that the support and perspective that I’ll be able to provide my daughter can make or break a diagnosis.

In sickness and in health, literally

My husband, Nate, was there from the start of my Crohn’s journey. samI remember explaining to him at one point that this disease would be something I will deal with my whole life and it was okay for him to leave me. It’s really hard to put my relationship with my husband into words. When it comes to Crohn’s, the thought of all he does to support me, makes me tear up. He knew that after our wedding day he would take my mom’s place at all my appointments and be my sole caregiver. Nate never shied away from the challenge and it makes me love him more and more everyday. He is my number one and having support from him means the world to me.

Despite receiving the IBD diagnosis a week before getting married, our wedding day was amazing! I look back and don’t remember being sick (thanks to the steroids!). Throughout our lives there will be days we get to be “normal” and we try to embrace those times as a couple and as a family. Don’t allow for this disease to control all aspects of your life. Have that amazing wedding and find a spouse who loves you regardless of your illness. You deserve that and so much more!

Finding peace through support and letting go

Fast forward to this month. Following my scope, I had surgery to remove an abscess. My husband and I had planned a date night for that evening and already had a sitter. We traded our dinner and play tickets in for a night out at the hospital. This was my second surgery to remove an abscess. It doesn’t get any easier, but I have a different mindset now that I am a mom.  _ADP6466

It’s always hard to leave our daughter Kamryn. We are very blessed to have an amazing support system that we can rely on. It’s so helpful to know that when you are going through a medical procedure, the person taking care of your child loves them as much as you do.  We do not have any biological family in Utah. However, we have an amazing church family that really loves and takes care of us just as well.

My advice to fellow IBD parents is to find peace in knowing that your child will understand one day how much sacrifice you have made to fight this disease. There will come a day when they will ask you questions and you can share your experiences with them.  

I am healing well and my doctors are monitoring things to make sure my Crohn’s stays under control. I have had routine blood work since the surgery and it looks like I will be going in for an MRI this week to check on my liver. While these unexpected twists and turns in my patient journey don’t get easier, I’ve learned not to focus on what I can’t control.

The bright spot of my journey

I was blessed to be able to have a baby girl in January. After so many years of hating my body and being sick, my body finally showed me what it’s capable of. I know that my journey with Crohn’s has made me the best mom possible for my sweet Kamryn. Even though my body may be riddled with illness, it was still able to create a perfect miracle. sAM

I have learned to deal with life in a completely unorthodox way, because of my disease. I am a better mom, wife, daughter, sister, coworker, employee, and friend. Don’t get me wrong, there are days I wonder ‘God, why me, why this disease?’ But I know deep down I am stronger for it and He will see me through the tough times and setbacks. As someone who grew up with an IBD mom, it’s my hope Kamryn will someday look at me the same way I look at my mom.

 

The days are long, but the years are short with chronic illness

The days are long, but the years are short. Oftentimes this ‘saying’ is commonly shared when talking about parenting. This past weekend my first born turned two. A rush of emotions came over me as we celebrated my son Reid’s special day. I got to thinking—the same is true for life with chronic illness. Reids second bday

The days are long, but the years are short. When you hear that life-sentence uttered from a doctor, your world comes to a standstill. Everything from your past and everything in your future seems to come to an abrupt halt. You feel like you’re suffocating and there’s no way you can go on. But you do.

The days are long, but the years are short. As I come up on 14 years this summer since my diagnosis of Crohn’s disease, I can hardly recall who I was before my IBD. That person, that identity—seems somewhat foreign to me. When you think “14 years”, it sounds like a long time—but, it feels like a blink of an eye. It’s a blur of experiences—some painful, some amazing. I choose to focus on the amazing.

The days are long, but the years are short. When you’re dealing with abdominal pain, when everything just hurts, when you experience nausea and vomiting moments after you try and eat, the days feel endless. IMG_8476When you’re in the thick of a flare and when feel good days feel far from ever being a possibility, try and remember how fleeting these moments are.

The days are long, but the years are short. When you’re being rolled in for another CT scan in the emergency room, when the nurse can’t seem to get an IV started on the fifth try, when you’re dreading your injection, when the colonoscopy prep is making you gag on your knees in the middle of the night in the bathroom, when you’re up counting the hours before surgery, feeling like the world is on your shoulders—remind yourself, this too shall pass.

The days are long, but the years are short. With children as they grow up, we can visually see the physical change going on. Two years ago, my son was a newborn, IMG_6459today he’s a rumbustious, adorable, little ball of energy. Sure, we age, too—but we also mature mentally when it comes to our illness. What felt like the biggest obstacle and scare of our life, evolves into something that is a part of who we are, an identity that while not ideal, helps to define us.

The days are long, but the years are short. Every year without needing to be hospitalized, every year where you feel like you have your disease under control, every year where your health doesn’t take you away from the life you are yearning for, hold on to those years.

The days are long, but the years are short. Rather than wish time away, I try and remind myself how each and every comeback is stronger than the setback. That every time I’ve been knocked to my knees by my disease in the past, I’ve come out of the storm stronger and with greater perspective about this life I’ve been given.

The days are long, but the years are short. You don’t always have to love your life. You can certainly mourn the loss of who you were prior to diagnosis, lord knows I did. remedy-nsmith-stlouis-1283But I can promise you, that as life goes on and as the years since that moment of diagnosis get further and further in the rear view mirror, you will find a comfort in this identity.

The days are long, but the years are short. You will garner a confidence in your strength that wasn’t there years before. And someday, you too will pause and think about where you’ve been and how far you’ve come to reach this moment. I hope you give yourself a proverbial pat on the back to honor your resilience and determination to live your life despite all the what if’s, despite all the pain, despite all the worry. Because you my friend, are a warrior—day in and day out—and you are so much more than your disease.

Why my husband is much more than a caregiver, Dr. Phil

I still remember the moment I told my husband I had Crohn’s disease. It was a beautiful August afternoon. We sat overlooking water at a boathouse in St. Louis on our third date. As we enjoyed casual conversation and a mutual interest in one another, I knew I had to tell him about my chronic illness.

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Photo from our third date, the day I told Bobby I had Crohn’s disease.

Nervous to rock the boat. Scared to be judged. Worried it would tarnish the image of who I was so far. I just wanted to rip off the band aid and get this conversation over with.

It was never easy to navigate dating and relationships with my disease. I was diagnosed with Crohn’s at age 21 in 2005. I met Bobby in August 2013 at age 29. Rather than seem put off by my disease, he inquired and showed empathy from that point forward. Never once did he make me feel less than or unworthy of love. In that moment, I knew I had found someone special and I felt a huge sense of relief.

Fast forward to this past month and all the conversation surrounding Dr. Phil’s heartless and ignorant comments about caregiving and relationships. I didn’t see the episode live, but have seen the countless posts on social media being shared to prove him wrong. I watched the interview clip after the segment aired and couldn’t believe my eyes or my ears. Dr. Phil told an interabled couple that “100 out of 100 relationships that involve caregiving fail.”

Photo by J Elizabeth Photography www.jelizabethphotos.com

Helping me walk down stairs during our engagement photos–21 days post op from my bowel resection surgery. Photo cred: J. Elizabeth Photography

It pains me to even write the idiotic words that man said. Not only is it upsetting, but it breaks my heart to think of all the young, newly diagnosed chronic illness patients out there who were already wondering if they were worthy of love because of living with a disease.

IMG_0077I’m here to tell you that you are. I truly believe my vulnerability with my Crohn’s and how I deal with flare ups is a big part of why my husband fell in love with me. Chronic illness isn’t pretty. It forces you to see the world without rose-colored glasses. It makes you realize the importance of your health and how quickly it can be taken away from you.

There’s a reason why you say “in sickness and in health” in wedding vows. My husband chose to spend his life with me, because he loves all of me—even the part of me that is riddled with illness. People are cut out to be caregivers or they’re not. You’ll come across this in your life and know which family members and friends have a special way about them. Those who don’t have this trait and ability aren’t meant to marry people like you and me. And that’s fine.

But to say that 100 out of 100 couples will fail because caregiving is involved couldn’t be further from the truth. It’s through Bobby’s caregiving that I continue to fall more and more in love with him. It’s those moments when I need help to get through a pain-filled day that I’m reminded just how strong and unbreakable our love is.

IMG_9492Caregiving looks and means different things to everyone. It’s not just about being a caregiver in the hospital or at a nursing home. It’s taking care of the one(s) you love on a typical day at home. It can be something as simple as rubbing your back or taking care of the kids while you’re stuck in the bathroom. It can be dishing you out ice cream after you give yourself an injection. Or holding your hand on a walk outside following a hospitalization. It’s those caregiving moments in particular that remind me constantly of the everlasting love I’ve found and make me 100 percent positive we will make it through, for the rest of my life.

My words of advice for you—if you’re a caregiver, know how appreciated you are—for all the little things and the big things. photo by J Elizabeth Photography www.jelizabethphotos.comIf you’re someone dealing with a disability/disease—don’t allow Dr. Phil’s ridiculously inaccurate comments make you think you aren’t worthy of love, because you are and always will be.

 

 

How motherhood has helped me discover I’m so much more than my IBD

We walked out of the automatic rotating doors of the hospital and the cold air hit my face. I looked up to the sky in thanks, to show my gratitude and to take in the moment. We had our baby girl in tow, our Sophia Shea. img_5915It was a brisk January morning. Tears filled my eyes as I was overcome with emotion. Our rainbow baby is here, safe and sound. Another pregnancy behind me, a pregnancy that silenced my Crohn’s disease and provided sweet reprieve from my chronic illness. It was time to take Sophia home and start our life as a family of four.

When your health is taken from you and when you receive a diagnosis of inflammatory bowel disease, life prior to illness often feels like a distant memory. There’s something so sacred and so special about bringing a healthy life into this world, despite your own shortcomings.

My Sophia, much like my sweet son Reid, are my inspiration and motivation to push through the difficult days and find strength and perspective within myself. The creation of their lives has renewed my faith in my own body. img_5886Each time I have a procedure or deal with painful symptoms, I see their faces, I say their names in my head, and it brings me a sense of calm. My goal when Reid was born, was to stay out of the hospital until he could walk, luckily that’s been the case. He’ll be two in March. Now, I have that same goal following the arrival of my daughter.

Pregnancy and child birth bring about such an amazing, miraculous transformation. You see life created right before your eyes. You experience a shift in your own identity. There’s nothing like it. There are no words to capture the emotions and the overwhelming love you feel for your children.

Finding the balance: Motherhood and IBD

17-untitled-9166Motherhood and IBD can be a difficult and challenging balance. Some days the fatigue and symptoms are so debilitating you feel like you’re falling short. At the same time, the days where you’re feeling well, remind you that you are so much more than your disease. Just because you have a chronic illness, doesn’t mean you are robbed of experiencing the beauty of life and what it feels like to have your very own family.

Women often reach out to me with questions regarding fertility, conceiving, pregnancy and what it’s like to take on parenting while battling IBD. There are so many unknowns. I know it can be daunting. img_5751It all starts with recognizing where you are in your patient journey and then determining when your symptoms and body are in the best shape to get pregnant. While everyone’s disease experience is different—the worries, concerns and fears associated with parenting and chronic illness are often the same. Always know you are never alone. Communicating these feelings with those around you, makes all the difference. Lean on our patient community and all those who’ve lived your reality.

I treated my pregnancies the same. I had colonoscopies prior to trying, to ensure I did not have active disease. Once I received that green light, I discussed my game plan with my OB, high risk OB and my GI and had monthly and sometimes weekly appointments. Each time—I stayed on my medication and vitamins from start to finish, which includes the biologic drug, Humira. I had scheduled c-sections for both. It’s all about finding what works for you, what brings you comfort as you embark on this journey and being confident in your decisions. It’s your body. It’s your baby.

29-untitled-9292When Sophia Shea entered the world January 14, 2019, our family received a wonderful gift. Between our son Reid and our baby girl, we could not be more blessed. My chronic illness has given me such an appreciation for health and for life in general. With the pregnancies behind me, I often reflect on where I started back at age 21 in 2005. At that time, in my eyes, I was Natalie and I had Crohn’s disease. There was no telling what my future would hold. Now, nearly 14 years later, at age 35, I’m so much more. I’m a mom to two under two. I’m a wife. I’m a daughter. I’m a sister. I’m an aunt. I’m a friend. And I also have Crohn’s.

 

My top 5 wishes for those with IBD

As we bid farewell to 2018 there is much to reflect on. Each year brings new experiences, relationships and opportunities. Some years leave more of an imprint on our memory and on our heart, than others. When you think back on the past 365 days what were the highlights? What were the low points?

IMG_4926For me—the past nine months I’ve been incredibly grateful to have another healthy pregnancy, that silenced my Crohn’s symptoms. I’m also celebrating 3.5 years of no IBD-related hospitalizations or ER visits! The cherry on top was the release of Citrate-free (pain-free) Humira this year! After more than a decade of giving myself the painful injection, the new formula has greatly improved my patient experience.

Here are my 5 wishes for you in the days ahead:

  1. Strength through difficult days

There’s no telling when the next flare will strike. We all know it’s not a matter of if, but when. When the going gets tough, take it one hour, one moment at a time. Try not to overwhelm yourself with worry. Go to your happy place and think back to past flares and all the hurt and pain you’ve overcome. Use the moments of your journey from the past that have tested you the most, to serve as your greatest source of empowerment. As the years go by, and your diagnosis seems like a different lifetime, use that to your advantage.

  1. Management of your symptoms

Remission is something that is possible, but there’s no telling how long it will last or for some, if it will ever become a reality. By getting your symptoms under control and well managed, whether that’s through medication, diet or both—your quality of life improves vastly. IMG_4768Celebrate the feel-good days and soak up the moments where your IBD isn’t top of mind. You have an innate sense of when your body is giving you warning signs that rough waters are ahead. Be mindful of the inner conversation going on in your head and listen to your gut. Although it tends to be our nemesis, it has a way of alerting us when things are about to get out of our control.

  1. Perspective about your experience

Use your patient journey and that of others to give you perspective. Empathize with friends and family members going through health struggles, whatever they may be. Sure, many people have it better than us, but many have it a lot worse. It’s not a competition to see who is the sickest, but rather a way of shifting our mindset and understanding that many people have struggles and we are not alone in our experiences. Like the saying goes, until you “get” a chronic illness, you don’t really “get” it.

  1. Support from those around you

Having a network of close family and friends to lean on at a moments notice plays a major role in how we take on IBD. Don’t be afraid to ask for help. Communicate the good and the bad, without fear of being judged or ridiculed. nyeblogTrust that those close to you love you and appreciate you for everything that makes you, you—including your disease. Show appreciation for your caretakers—those who live with you and are in the trenches by your side, day in and day out. Find comfort in those who allow you to be vulnerable when you need to be. Stop putting effort into relationships and friendships that don’t add joy to your life—eliminate the negativity, cut the fat, there’s no need for people who bring you down or belittle what it’s like to live with Crohn’s or ulcerative colitis.

  1. A health care team who listens

Find IBD specialists and gastroenterologists who enable you to be your own best advocate, who listen when you’re worried and address your concerns without making you feel less than or like a number. By trusting in your doctors and the care they provide you, you’ll feel much less stress about the path you are on as a patient.