Dealing with Depression While Taking on IBD: Louise’s Story

No one feels their best when they are unwell, and this is no different for those with chronic illness. There is an ebb and flow to anything chronic – meaning there are good and bad days – but what happens when your bad days outweigh your good days?

In a Twitter poll I conducted this week asking fellow patients how IBD has impacted their mental health, 40% said they’ve experienced depression and it’s a struggle, while 60% said they’ve dealt with mental health issues from time to time. I found it telling that no one who responded to the poll said their mental health wasn’t impacted at all.

IMG_1807This week a guest post from 31-year-old Louise Helen Hunt from the United Kingdom. She was diagnosed with Crohn’s in 2011 and has undergone four surgeries in the last three years. Louise opens up about her struggles with mental health, while living with IBD and offers incredible perspective and words of wisdom that everyone in our community should be mindful of. I’ll let her take it away…

I hit rock bottom six months into my IBD diagnosis. I struggled to find a treatment plan that worked. This involved months of being in and out of hospital. I tried very hard to be positive, but I was sinking. I refused help, I didn’t want to talk about it and I certainly didn’t want any more medication.

Fast forward to 2018, six years since those first depressive episodes and I was still feeling depressed. I’d gone through two major surgeries very close together, came out with a stoma, struggled with my body image and was starting a new job. It was a stressful time and I was not coping. I needed help.

There are lots of emotions experienced by those who live with IBD, both positive and negative. Depression and anxiety come up often on patient surveys from various sources, rates of depression are higher among IBD patients as compared to the general population.Helen Blog

The balancing act of IBD and Depression

Depression is a serious mood disorder that causes feelings of sadness and loss of interest. Depression can make you feel exhausted, worthless, helpless, and hopeless. It can also make dealing with daily tasks difficult. Tasks associated with managing a chronic illness may even feel insurmountable.

Depression often gets worse if it is not treated. IBD specialists are encouraged to assess not just the physical symptoms, but also the emotional symptoms. These can be:

  • Persistent sad, anxious, or “empty” mood
  • Feelings of hopelessness, negativity
  • Feelings of guilt, worthlessness, helplessness
  • Loss of interest or pleasure in hobbies and activities that were once enjoyed, including sex
  • Decreased energy, fatigue, being “slowed down”
  • Difficulty concentrating, remembering or making decisions
  • Insomnia, early-morning awakening, or oversleeping
  • Loss of appetite, weight loss, or overeating and weight gain
  • Restlessness and irritability

Depression is treatable. It is important to seek out a counsellor who has experience in treating people who live with chronic illness. And while it can take some time for the symptoms of depression to go away, seeking treatment can help improve your mood, your quality of life, and your ability to cope with IBD.

This can be in the form of Cognitive behavioural therapy (CBT) – an evidence-based treatment for depression and anxiety, it works to identify and change negative thought patterns and behaviours which can contribute to depression – or medication management which can be used in addition to therapy.

How to handle depression when you’re chronically ill

  • Talk to like-minded people – this could be online, at a support group or your friends.
  • Keep a journal – getting your thoughts out of your head can be very taxing but ultimately therapeutic.
  • Take your prescribed medication regularly.
  • Remember there is no shame in needing or taking medication to cope with your symptoms.
  • Be active – whether this is running or going to the gym, even something as simple as a regular walk can help: being outside and feeling grounded – literally – can lessen some of the symptoms of depression.
  • If you are having a crisis, please seek medical attention. Be proactive and pick up the phone.
  • Don’t expect to “snap out of it.” Instead, expect to feel a little better each day.
  • Ask for and accept help from your family and friends.
  • Know that positive thinking will eventually replace negative thinking as your depression responds to treatment.

fullsizeoutput_1edfRemember that feeling better takes time, and that your mood will likely improve gradually, not immediately.

Connect with Louise on social media:

Facebook: Louise Helen Hunt

Instagram: @louisehelenhunt

Twitter: @louisehelenhunt

 

The steps one IBD mom and teacher takes to stay healthy, while being immune suppressed

Biologic drugs have the ability to give many of us in the IBD community a chance to live a much fuller, and well-rounded life. But there are trade-offs, especially when it comes to our immunity and the ability to fight off infections. As a mom of a 2-year-old and 6-month-old whose been on Humira for more than 11 years, I’m extremely cognizant of protecting my kids from sickness to not only protect them, but myself. I often feel as though people may think I’m over the top with worrying about illness in my household, but quite honestly, unless you or someone you love is immune compromised, it can be a difficult concept to grasp.

This week–a special feature from a Maryland elementary school teacher with indeterminate colitis. Meet Lisa Lacritz. lisaShe’s a 38-year-old wife and mom who juggles two autoimmune diseases. She also has Hashimoto’s disease. Since she started on Remicade in 2018 following her IBD diagnosis, she’s experienced the difficulty of  warding off illness while being an elementary school teacher and a mom to a young child.

“Shoes off, hands washed!”  My son knows the routine by heart. Every time we come into the house, shoes come off and hands get washed. I like to think that all of my years spent worrying about germs when I didn’t need to be, were fantastic training for when I actually needed to be concerned.

When I was diagnosed with IBD, I was hesitant to get on a biologic because of my fear of being immunosuppressed. I’m an elementary school teacher and when I started on Remicade infusions, my son was only six. I basically spend my day in a Petri dish. fullsizeoutput_269aDealing with the symptoms of IBD was more than enough–how on Earth would I be able to handle that plus avoid picking up viruses at school and in public?

Taking steps to be proactive 

After I got sick on the second day of school last fall, I decided that washing my hands frequently wasn’t going to cut it. I have always been a frequent hand washer, especially at school, but I needed more protection. At first, I was nervous about how others would perceive me. There were a lot of confused looks by coworkers and students when I would politely decline to use someone else’s pen. I started carrying a pen with me everywhere to ensure I wouldn’t have to use a communal pen. Now people know that I always have “my” pen with me and that I don’t share it with others.

Another thing I’m very careful about is touching door handles and knobs, especially the door to the main office. The main office is where you can find the school’s health room, where every sick kid passes through. I either wait for someone else to come and open the door, or I use a barrier such as a paper towel to open it and then wash my hands right away.

I never touch my face and I keep my phone in a plastic bag (quart size bags work great!) so that I keep school germs at school. Kids are definitely puzzled by that last one, but I explain that I need to keep germs away as much as possible, and if I need to touch my phone then my phone gets the germs on it so I protect it with a plastic bag.

Worrying less what others thought and making my needs a priority

fullsizeoutput_3800I really needed to stop caring about what others think and prioritize my health. One of the most surprising things to me was that people really don’t understand what immunosuppression means. Some people think I’m just a paranoid germaphobe even after I’ve explained that I’m immunosuppressed. They don’t understand that a simple cold for them, can mean days of sick leave for me due to a secondary infection. Or a fun day swimming in the bay can mean a bacterial infection for me that lasts for weeks and causes symptoms similar to a bad flare.

Yes, it is mentally exhausting to worry about immunosuppression on top of all the other things chronic illness brings. Plus being a teacher. Plus being a mom.

As much as I hate getting sick, the worst part for me is missing out on doing fun things with my son. IMG_0580Somehow my body knows when we have something fun planned and chooses those times to conk out on me. When I’m lying on the couch at home feeling sorry for myself while my husband and son are at a friend’s New Year’s Eve party or Memorial Day BBQ (both events I missed this year), I try to remind myself that Remicade is what allows me to lead a relatively normal life and be able to do things like go sledding with my son on a snow day and take him Trick or Treating. I couldn’t do those things when I was in a bad flare before treatment and definitely can appreciate them more now. I just make sure shoes come off and hands are washed right when we get home.

 

Three years of Lights, Camera, Crohn’s: 10 Tips for Becoming an IBD Blogger

Tomorrow (July 23, 2019) marks three years since Lights, Camera, Crohn’s became a reality. Three years since I closed my eyes and took a major plunge, wondering if my words and effort would make a difference. Three years since I decided it was time to stop living my IBD life in the shadows, and instead bring my personal struggles and triumphs to the forefront. A31AD785-CDF7-43D5-BA1D-BFDDC69B493EI chose to blog and become a patient advocate for several reasons. I was tired of feeling isolated. I wanted to be a voice for the newly diagnosed, as well as the veteran patient. And, as a journalist, I’ve always had a love for the written word. For me—expressing myself through writing comes a lot easier than saying the words out loud.

July 23rd is a big day on the calendar each year for me—it’s the anniversary of my Crohn’s diagnosis (14 this year!), my dog Hamilton’s birthday (He’s turning 11) and it’s the day I met my husband online (6 years ago!). If that’s not a sign that things happen in threes, I don’t know what is! Knowing this, I had to launch my blog on this day. Rather than focus on how many years I’ve been riddled with a chronic illness, it’s a way to celebrate how far I’ve come on my patient journey.

I’m going to do a little humble brag right now. Since launching my blog in 2016, I have never missed a week of posting fresh content. Through two pregnancies and being a stay at home, IBD mama with a now 2-year-old and six-month-old, I found a way to stay true to my own personal deadlines, because this blog, and this community and IBD family are so important to me. 41113C90-2C99-4252-B69B-212DB2295A33In that time, I’ve shared 171 new articles (because some weeks I post on Mondays AND Wednesdays). Over the last three years, more than 105,000 people from around the world have checked out Lights, Camera, Crohn’s. Could the articles be organized better? Yes. Could the design be snazzier? Yes. But, my focus as an IBD blogger and advocate is to give you the nitty gritty. I’d rather spend my time and energy on content vs. design.

One of the most common questions I receive is, “How do you become a patient advocate?” or “How do you become a blogger?” It obviously takes time, passion, and commitment.

Here are my top 10 pieces of advice for you, that I wish I would have known before blogging.

  1. Write for the reader and for yourself. As patient advocates and bloggers, it’s generally our own personal experiences that shape the content we share. That experience and viewpoint is invaluable, but remember—the reader isn’t here to check out your diary. They are here to learn ways to improve their patient journey, to educate themselves. When you write, write to the people reading. Don’t bore them with every.single.detail. of your doctor appointment. Use that experience as the foundation and springboard into a larger discussion that is easy for others to relate to. Think “news people can use”…otherwise, why read your stuff?
  1. Be bold. Be vulnerable. It can be very stressful and overwhelming to put your whole health story out there to the public. If you’re like me, I kept my disease to myself and close family and friends for a decade. Going from that—to sharing my story with thousands, is polar opposite. But, I can tell you, once you open up, you won’t regret it. The moment you break down your own barriers and show your true stripes, you open yourself up to endless support and quickly come to realize how many others understand your reality.
  1. It’s not a competition of the sick. Just because you haven’t started a biologic, just because you haven’t had surgery, just because you don’t have a bag, doesn’t mean your patient journey is any less significant or important. IBD impacts each and every one of us differently, but there are so many parallels along the way. Trust that what you are going through physically, mentally, and emotionally is something many people can relate to. I haven’t been hospitalized for my Crohn’s since August 2015 (before my blog went live!), but in my 14 years living with the disease I’ve experienced so many highs and so many lows, so many flare ups and so many feel good days. It all matters. And it’s all a part of it. People don’t just want to see you in the hospital or struggling, they want to see other aspects of your life, too.
  1. Be patient with yourself through the process. Writing about life with IBD can be emotional. It can be draining to bring up old memories that were the most difficult days of your life. It can also be cathartic. Write stream of consciousness-style. Rather than thinking about each word and constantly hitting the delete button, just let it flow. Edit yourself later, not in the moment.
  1. Have a thick skin. Being a patient advocate and a blogger isn’t always sunshine and rainbows. You are going to receive both public and private messages from naysayers. People may question why you aren’t “healing yourself with food” or “why you need a biologic”. The only person you need to answer to is the person looking back in the mirror, along with your physicians. No matter how much you share online, no one has the FULL story of your own personal experience. Let the judgers, judge…and keep on trucking. Keyboard warriors have a way with words, don’t allow others to bring you down or stress you out. That’s the last thing we need living with IBD. I’ve come across a few instances on Twitter, where banter got pretty heated. When my heart started racing and my stomach started hurting, I knew it was time to block them and move on. Don’t be afraid to block when needed.
  1. Remember you are a patient, not a medical professional (unless you are both!) It gets dangerous when patient advocates spout off medical advice to those desperately looking for answers. When people come to you for support or with questions about how to handle their care—always advise them to talk with their care team, and remind them you are not a doctor, but this is what has worked for you. Yada Yada Yada.
  1. Lean on others in the IBD family for guest posts/sharing your content on social media. Advocacy is not a competition. There is room at the IBD family dinner table for ALL of us. Interact with other people’s blog articles and social posts. Show them the love, chances are, that love will be reciprocated. Oftentimes, it can feel like everything you are doing is falling on deaf ears (thanks so much, Facebook algorithm)…that being said, don’t focus on the “likes” and the “comments”…if your article or your words help one person or one family, you’ve made a huge difference.
  1. Always be on the lookout for content. The former TV news anchor and reporter in me always has my eyes and ears open for the next story. Look at social media and see what’s trending in the IBD community. Ask your followers what topics they’d like to see more on. Set up Google Alerts in your email to see the latest about IBD research and news. Pay attention to people’s stories. When someone reaches out to me with a question, I often dig a little deeper and see if this is something that would make for a good article. Every single person has a story to share, it’s just a matter of discovering what that story is.
  1. Be authentic and true to who you are. Oftentimes businesses and companies will reach out to patient advocates looking for promotion or support. Don’t be a “yes-(wo)man”. Only promote causes and products that you genuinely believe in. Don’t sacrifice your hard-earned credibility for a few bucks, because your credibility is priceless.
  1. Stop selling yourself short. Your IBD life and story is valuable. Gone are the days when big pharma and businesses can tap into us as resources for free. We’ve all gotten smarter about this. Your painful journey hasn’t been easy. But, with that journey, you’ve gained a perspective that businesses are thirsty for. They NEED our insight. They NEED our input and perspective. Unless you live with IBD personally, you can’t fully grasp what it’s like. Sure, volunteer work for the Crohn’s and Colitis Foundation is one thing, but as soon as someone wants you to be an “influencer” or speak at an event, etc. know your worth and don’t ever be afraid to ask what the compensation is.

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I’m hopeful that three years from now on July 23, 2022, I’ll still be blogging and will still be a vocal voice for the IBD community. Thank you for sharing in my journey and for pushing me to be better. Thank you for reading and for caring. Thank you for being a listening ear and a watchful eye. Thank you for walking alongside me through pregnancies and motherhood as a woman with IBD. I promise to deliver more content that helps guide you through your journey and show you just how capable you are of being everything you ever hoped for. God bless.

XO,

Natalie

Why you shouldn’t put ‘self-heal’ and Crohn’s in the same sentence

This article was written earlier this month, while getting my hair done. 

I hear her cry. I glance at the clock that reads 4:55 a.m. I clutch my abdomen. The pain I went to bed with hours earlier is amplified. IMG_4409It feels like a fiery pain inside my rib cage that travels all the way down my stomach. The gnawing makes me feel raw internally and externally. I put my glasses on and as I’m standing up and rocking my daughter in her nursery, I try to think of her warm little body as a heating pad.

I wrestle with my thoughts about how to handle my pain. Last time I took pain medication I couldn’t breastfeed my daughter for 20 hours. I decide to take one 600 mg ibuprofen left over from my C-section recovery, with the understanding that as someone with IBD I shouldn’t be taking that. But I’m desperate. Desperate to get a reprieve from the pain and the inner monologue racing in my head as I lay back down. While at the same time, trying to keep my painful moans quiet so I don’t wake my husband.

I wake up and the pain is still there, but I have no choice but to take on the day. Thanks to my mom being in town, I’m able to head to the hair salon for a much needed hair cut and color. The stylist asks me questions and my Crohn’s comes up fairly quickly in the conversation. Her response—“one of my best friends has Crohn’s and she’s completely self-healed herself by eating very strictly”. She goes on to say her godmother has Crohn’s, too—and constantly posts pics on social media eating and drinking, so it’s no wonder she struggles, acting almost disgusted by her godmother’s lifestyle and patient journey.

I bite my tongue. The pain from the night before and the worries weighing heavily on my mind and heart are still fresh. Self-healing and Crohn’s, if only it were that easy, that simplistic. But I don’t have the energy to get into that discussion. IMG-3099The fact that so many people without IBD are under the assumption that our pain and symptoms are self- imposed upsets me. We already beat ourselves up mentally as it is. My husband and I took our son for ice cream last night, so immediately I wonder if all of my pain is a result of the choice to have ice cream with my 2-year-old.

As a mom who’s battled Crohn’s for nearly 14 years, the background noise and ignorant comments about IBD tend to bounce off me. I have thick skin, now. But, it’s worrisome at the same time. What if the girl getting her hair done wasn’t me? What if she was newly diagnosed and struggling? What if she chose to go off all medications and “self-heal” because someone cutting her hair told her it was possible? This is what we’re up against as patients. Everyone tries to relate and thinks they are offering “words of wisdom” or assurance, when really they’re just contributing to the hurt and feelings of being less than. IMG-4410

Luckily, I’m not that girl. But—if you’re reading this, know that your patient journey is unique to you. What works for one person, will not necessarily work for you. Needing medication to manage symptoms and keep your disease from progressing is not a sign of laziness or weakness. You need to take the steps necessary to improve your quality of life and overall health. Living with IBD is not black and white. There is so much gray area. Trust in your physician. Trust in the support available both online and in your community from fellow patients. Be patient in discovering what works for you, be flexible, and do what you need to do to self-heal.

My Tribute to the IBD Family: You are visible

The theme of World IBD Day (which was yesterday, May 19) was to make the invisible, visible. Here’s my tribute to my fellow IBD warriors and their caregivers.

To the newly diagnosed…

To the person going through their first procedure whether it’s a CT scan or a colonoscopy…colonoscopy

To the parent of a child battling this disease…

To the person being wheeled in for their first surgery…

To the person taking their first steps out of the hospital bed while on the road to recovery…

To the person glancing at their incision for the first time…

To the person looking in the mirror and not recognizing the reflection looking back…

To the person on a liquid diet because it’s too painful to eat actual food…

To the person on a steroid feeling unattractive, irritable and high strung…

To the woman wondering if her body is strong enough to carry a baby…IMG_3723

To the man who’s concerned about being able to be a source of strength for his family…

To the pregnant woman worried about flaring and how it will impact her unborn child…

To the person beginning a biologic or a new medication, who’s petrified of the laundry list of side effects…

To the person crying themselves to sleep because they feel alone in their struggles…

To the mom who feels like she’s waging a never-ending war against her fatigue…

To the teen wondering if they’ll be able to go to college…

To the college student embarrassed of going to the bathroom in the dorms…

_F6B4724To the person nervous to open up in a relationship and disclose they have this disease…

To the person who had to get out of a relationship or was left because the support was lacking…

To the bride or the groom worried about having disease symptoms on their wedding day…

To the person shaking with fear in the parking lot of their doctor’s office, nervous to walk in and face the music…

To the person boarding an airplane nervous about symptoms and being around germs…remedy-nsmith-stlouis-1284

To the person who’s just been told another medication has failed them…

To the person lacking a genuine support system…

To the person who feels misunderstood, frustrated, and judged…

To the person sitting on the toilet contemplating whether a flare is starting to strike…

To the person in the passenger seat being rushed to the emergency room, yet again…

To the person getting their blood drawn staring at a focal point on the wall…

To the person who is constantly approached with the latest and greatest “fix”, “cure”, or way to “heal” …

natalie mothers dayTo the person worried about passing this dreadful disease onto their children…

To the person with the bad veins dealing with their eighth IV poke…

To the person who feels lost and misses who they were prior to being diagnosed…

To the person lying in the fetal position trying to get through this moment…

To the community who feels like home to me.

I see you. I hear you. I believe in you. I’m here for you. I love you.

We’ve all been these people. We all know this is the reality of life with IBD. It’s not easy. It’s scary. It can be overwhelming. The emotional pain can oftentimes be worse than the physical pain. Living with a chronic illness, no matter what your age or circumstance is tough. There’s no sugar coating it.

At the same time, I want you to whole-heartedly believe that while this disease can rob you of joy, it can also provide you with perspective, strength, empathy, understanding, gratitude, patience, and clarity. You my friends, are far from invisible.IMG_3434

I see you. I hear you. I believe in you. I’m here for you. I love you.

Thank you for helping me to see the light on the dark days, inspiring me when I need it most, and showing me that there’s much more to life than being a patient. I hope I do the same for you, always. Use your journey. Use your story. Use your setbacks. Use all that you are, to inform, educate, and implore others to want to better understand your reality. I promise, you won’t be disappointed.

XOXO-Natalie

From one IBD mom to another: An interview with Tekhni Wovens Founder, Alisa DeMarco

When a family member is diagnosed with IBD the same week as you, it can be sort of a saving grace.

Alisa

One month post diagnosis–dealing with the side effects of prednisone.

My cousin’s wife, Alisa DeMarco, was told she had Crohn’s disease a matter of days before I was in July 2005. At the time, she was one of the only people I knew who had the condition—one of the only people I could confide in who could genuinely understand my reality. At the time of diagnosis and throughout your patient journey—these bonds and relationships are the glue that keeps you together.

alisa3Now, nearly 14 years later—her and I have come a LONG way. She’s on Remicade. I’m on Humira. We are both mothers. We are both wives. Alisa didn’t allow her disease to stop her from following her personal or professional dreams. In 2013, she left corporate America and founded Tekhni Wovens. As an IBD mom and successful business owner, her perspective and ability to overcome the odds is something we can all admire and look up to. This week—an interview with a woman I’m lucky to call family.

NH: What inspired you to create Tekhni Wovens?

AD: As a full-time working mother who enjoyed caring for my children with the help of wraps and slings, I quickly found myself as part of the babywearing community.  Over time I shifted from consumer to manufacturer, designing textiles when I didn’t find what I was looking for— a fashion-forward aesthetic in easy-to-wear blends at accessible prices.

NH: As a woman with IBD, a mom of four, and a wife–how do you balance leading a successful business and keeping your disease symptoms under control?

AD: Balance is a hard ideal to maintain– and I am not always successful! Image-58 I multi-task everything, stay on top of my biologic infusions, rest when possible and, plan my diet loosely around a mix of SCD and low gluten eating. Getting help is difficult, but I feel lucky to have a supportive husband and local family network. My travel schedule wears me down– but thankfully most of my disease symptoms are well controlled.

NH: What advice do you have for fellow IBD’ers who have big dreams but are hesitant to go after them because of their disease?

AD: Your dreams don’t have to be an all or nothing pursuit!  Tekhni started as an idea to make a better product and help support my family… and evolved into multifaceted business with accounts worldwide.  However, it took years, and many winding paths to get there. Know that there’s no deadline or requirement for any passion you want to pursue.  Start with an idea, and break it down into bite-sized pieces. Your disease is only one small part of your identity, and cannot prevent you from planning and dreaming and accomplishing daily tasks on your own timeline. Image-56

NH: Why are you passionate about babywearing?

AD: Babywearing and attachment parenting are very close to my heart– they are natural extensions of our mothering instincts. They help me care for my young, closely-spaced children while working full-time and managing a household with a husband who is often away for work. Image-55Babywearing helps me effectively multi-task and meet my all children’s needs at the same time. It also helps address postpartum depression, by syncing mother and baby, and raising oxytocin levels.  I believe babywearing is a necessity that should be taught to every single expecting parent and caregiver!

NH: Why is babywearing so beneficial for those with IBD in particular?

AD: Babywearing is a perfect fit for people with autoimmune diseases– it helps you hold, carry, and comfort your baby while taking weight and strain off of your back and hips. For difficult days, it can literally be another set of hands.  And keeping baby in proximity leads to less crying, less stress, and more rest for both baby and mother. Image-60As a bonus, a variety of baby carriers can be adjusted to accommodate an ostomy or j-pouch.

Stay tuned to my Instagram account (@nataliannhayden) for a giveaway on Friday, May 17. We’ll be giving away a Studio Tekhni Ring Sling! The winner will be announced on World IBD Day (May 19). Good luck!

 

Self-Love: Learning to love your body despite your disease

Self-love. Self-care. These phrases tend to be thrown around quite often these days. At times they just sound like trendy buzzwords. But, they are important topics nonetheless.

Do you ever pause during your day-to-day routine and think about how you’re really doing—physically, psychologically and emotionally? When you live with a chronic illness like Crohn’s disease, taking time to honor all that you do to merely function and keep up with the general population is worth recognizing.

image8It’s not easy to be in constant battle with your body. It’s a challenge to feel pain often. It’s exhausting to always have a worry and a wonder in the back of your mind about how you’re going to navigate and overcome the next hurdle or setback thrown your way. This is why self-love is so important.

So, here’s my call of action to you. Rather than focus on all we’re unable to do or all that we struggle to do, it’s time we celebrate and recognize everything we CAN do. We are so much more than patients. We are people. It’s easy to wish about a life of perfect health, but despite how my disease has ravaged my small intestine and led to pain elsewhere in my body—whether it’s in my joints or from the osteoporosis in my back—I still manage to get up each day and live a very full life, with a perspective I never would have gained without this journey.

IMG_5494Since being diagnosed, this body of mine has still served me well. I managed to work full-time and live out my dream of working in television for the first ten years I had Crohn’s. I trained for and ran in 5ks, 10ks, 15ks and a half-marathon. I felt completely healthy and on top of the world on my wedding day (didn’t have one bathroom break!). My body was a safe haven for my children throughout pregnancy and allowed me to bring a healthy son and daughter into this world.

It’s those “accomplishments”, those big “wins” I choose to focus on. It’s the moments when I felt like my peers. It’s the times Crohn’s wasn’t top of mind and I felt like everyone else. halfmarathonIt’s when I felt invincible if only for a moment, whether it was crossing the finish line or holding my babies on my chest for the first time. It’s the victories along the way that help me push through on the difficult days and through the flares. Because while those times push me to the brink of breaking, I tell myself there’s only one option—and that’s to bounce back.

I’ve been that girl staring in the mirror wondering ‘why me’. I’ve been that girl with tears falling onto my thighs as I sat on the toilet hating that I had this dreadful disease. I’ve stood in the shower and watched the water hit my resection wounds and felt ashamed that my body was no longer scar-free. I’ve been all those things—but as the years go on and as my diagnosis days get further and further in the rearview mirror, that girl who wondered ‘why me’ is becoming a distant memory. That girl is now a woman, a mother, a wife and so much more. Crohn’s is a part of who I am, but it’s far from my identity.

By altering your outlook and your perspective and loving the person you are and the body you have—despite the physical and emotional scars left behind from past battles—you open yourself up to self-love. sophia40dayblessingPat yourself on the back for all the steps you’ve taken to rise up. Smile through the tears with the confidence in knowing you will get through this—one day, sometimes one hour at a time.

It’s ok to have bad days. It’s ok to struggle. That’s all part of it. Just make sure you give some extra care, love and attention to the person you see looking back in the mirror. You’ve been through a lot. And you’re still here. Fighting. Living. Breathing. Now all you have to do is believe in your strength and love yourself for your resilience.

 

 

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.

 

Merry Everything, from my family to yours

We hope the holiday season has been filled with love, joy, happiness and health for you. Thank you for your endless support and encouragement, kind words and feedback and interest in not only my patient journey, but also the well-being of my family. Whether we’ve connected on social media, through Lights, Camera, Crohn’s, by email or collaborations, I feel so grateful to have this platform to share my experience living with Inflammatory Bowel Disease every week of the year. You inspire me to be vulnerable. You inspire me to be strong.

I write and advocate in hopes of being the voice I so desperately needed when I was given a lifelong chronic illness diagnosis at age 21. Being able to lean on the IBD family virtually and in person is the gift that keeps on giving. We can all serve as a wonderful resource for one another, not only during difficult days, but also when we’re feeling on top of the world.

IMG_4950I hope you take this week to enjoy time with loved ones, relax and find time to care for yourself!

If we haven’t already—let’s connect on social media:

Instagram: @natalieannhayden

Twitter: @nataliesparacio

Facebook: Natalie A. Sparacio

Cheers,

Natalie

How Hurricane Maria changed the path of my Crohn’s Disease: A Puerto Rican patient’s journey

I recently connected with a fellow IBD patient on Twitter named Jessica Pérez-Cámara. Aside from both of us battling Crohn’s disease and both of us taking Humira, we’re also both journalists. This week—Jessica shares an emotional piece about what it was like to take on inflammatory bowel disease, amidst a natural catastrophe, mid-flare. I’ll let her take it away.

Life with IBD is hard enough. IMG-5512Try having a flare during the worst natural disaster in the history of your country. It happened to me. I survived.

On September 20, 2017, Category 4 Hurricane Maria made landfall in Puerto Rico, causing a humanitarian crisis. Maria left nearly 95 percent of the island without communications, water, electricity and with limited medical access.

Many of the 3.4 million U.S. citizens living on the island had restricted access to resources like food, fuel, among many other essential needs. No communication, no cell phones, no internet. Nothing. I am a journalist who, at the time of the storm, was working as a communications assistant in the local Government. My job was to share news to the public before and after the hurricane. My country ended up getting hit with two hurricanes, and my beloved grandmother passed away a few weeks earlier. She died the day before Hurricane Irma. It was all such a whirlwind, as the stress mounted, so did my flare. IMG-5510

I was diagnosed with Crohn’s Disease in August 2015, even though I’ve lived with IBD for more than three years, I’m still learning to navigate my illness. Upon my diagnosis, I was put on Asacol and Budesonide. I had been fearful of going on a biologic and did all I could to avoid them. But, deep down I knew the moment would one day come.

Nonstop work after Hurricane Maria

I worked nonstop for months on the initial hurricane recovery efforts. As I took on this responsibility, I was flaring badly. Many hospitals were not working full capacity, running on generators and with shortages of basic medications like IV bags.

I was feeling terrible, exhausted, the fatigue and diarrhea were worsening, but I kept working through the pain. I was putting my duty for my country before my health. I was working long hours and when I got home, it did not get any easier, because life was not the same. Basic things like food, water, fuel for the generators, gas for the cars and even having a good meal or taking a shower were more difficult. My body ached from head to toe. The food was scarce and what was available was mostly junk food, fried food and canned food.

IMG-5513One morning I decided to stop in my GI’s office. He had lost the A/C unit and the office was flooded during the storm. He ordered some labs, an emergency colonoscopy and a few days of rest. I was anxious, exhausted, scared. After the colonoscopy, I was prescribed prednisone for a month and then started Humira.

Humira without electricity at home

I began using Humira in November 2017. My initial four loading dose shots were at my parent’s house, because they had two power generators and could have the refrigerator running 24/7. They kept my Humira for the rest of the blackout for us, which lasted 114 days.

It’s now a year later. I am back to normalcy – to my new normal- of giving myself painful shots. I’m in the process of receiving the Citrate-free (pain free) Humira and I can hardly wait! Unfortunately, I deal with some side effects from the medication (general body aches and joint pain, fatigue and weakness). That being said, the minor side effects I deal with are manageable and worth it to keep my disease under control.

An important conversation about chronic illness

As a Crohn’s patient and as a Puerto Rican, IMG-5514I hope my experience sheds light on what it’s like for those in the chronic illness community as they endure the repercussions of natural disasters. It’s a critical conversation that needs to happen—preparedness for the IBD community in the face of weather disasters. How can employers, government and society step up to the plate?

One year ago, I began walking the path of the Hurricane to the path of remission. I look forward with a sense of hope for the future both as a person and as a patient.