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!

 

5 Helpful Day-to-Day Tips for IBD Moms

Hey IBD mamas and moms-to-be—this article is for you! With Mother’s Day this Sunday, I wanted to share 5 of my “life hacks” for taking on motherhood while living with IBD.
IMG-1309As a mom of a 2-year-old and an almost 4 month old, I’m in the thick of motherhood right now. While it’s an amazing season of life, it definitely has its challenges. A toddler, a baby, and a chronic illness. Ah, I’m exhausted just reading that myself! While it’s far from easy—I’ve found some ways to help embrace the ups and downs and everything in between.
Here are my 5 helpful tips for IBD moms: 
1.  Don’t be afraid to ask for help.
By verbalizing your pain and communicating openly with family and friends, you open yourself up to a network of support. Don’t try and be a martyr or a superhero. In the end the only person you are hurting is yourself. A few hours to yourself will do wonders for your psyche, you’ll feel rejuvenated and refreshed and you’ll be a better mom because of it.
2. Stay on top of daily disease maintenance: your medication, your doctor appointments, blood tests, and annual scopes. 
Moms have a reputation for putting themselves on the bottom of the totem pole. When it comes to chronic illness, lapse in taking medication and managing your illness can set you up for a flare up. IMG-7462No one wants to be hospitalized or deal with pain. Give yourself the best chance for having feel good days and make your disease management a priority. If you feel symptoms presenting and you’re concerned, alert your GI immediately. Be proactive, nip each flare in the bud as best you can.
3. Busy boxes for the win!
Once you have a toddler—or more than one child, these are lifesavers! Look up ideas on Pinterest and create boxes to keep your little one busy when your fatigue is overwhelming or when you’re in a lot of pain. I went to Hobby Lobby, Michaels and Target and created fun boxes for Reid filled with everything from puzzles to coloring books to sensory activities with noodles. I made a busy box for each day of the week. You can do so very economically!
4. Practice self care as often as possible.
IMG-9834Yes, I know. Self care. We hear it all the time. It’s something that’s constantly talked about, that seems unattainable. But try and do something each day for yourself, whether it’s taking a shower, eating a meal sitting down, going for a walk outdoors with your little one and keeping your phone on silent, reading a book before bed, you name it. Try and find the moments in your day when you can unplug and relax. Practice yoga and meditate during nap time instead of doing the dishes or laundry. You owe it to yourself!
5. Give yourself grace. 
Motherhood is an incredible experience, but it’s not easy. Add chronic illness to the mix and it becomes even more difficult. Don’t beat yourself up on the days you aren’t feeling well and need to stay indoors and lay low. Stop comparing yourself to the mom who seems to have it all together on social media. We all know we have hot mess moments, that’s life. Focus on all the happiness and joy you bring to your little ones life. You are their world. IMG-8890You were given this role and this family because you were meant to have it and you were destined to live this life.
Bonus Tip!: Wear your baby. Baby wearing will do wonders for your joints and your wellbeing. Not only does baby love being close to you, it helps give you a bit of a break whether you’re out and about or at home.
On this upcoming Mother’s Day and always, I commend every woman for their efforts. You are remarkable. You are a warrior. You are a guiding light for your loved ones. And you deserve to be celebrated for all that you do, day in and day out.

How it feels to be hospitalized as a mom with Crohn’s

It’s my greatest fear, having to be hospitalized with a Crohn’s flare as a mom of two little ones. It’s something I think about all too often. The thought alone scares me. It’s difficult to imagine the reality of the experience. Since becoming a mom, I’ve been fortunate enough to stay out of the hospital. Unfortunately, for a friend of mine in the IBD community—she’s had to face this reality all too often.

Her son, Beckham is two months older than Reid. Our little guys could pass for brothers. This week—a guest post from Brooke Retherford, a fellow IBD mama from Wisconsin. She shares the raw emotions she’s experienced since her diagnosis at age 13.

IMG_2014I’ve had my fair share of surprises and obstacles with Crohn’s disease. My patient journey includes numerous surgeries, multiple doctor appointments a week, sitting in hospitals getting Remicade infusions, switching up medications to tame a flare and my all-time favorite, hospitalizations for days at a time. Please note the sarcasm in that last sentence.

These instances are not by any means convenient or something I or anyone else with Crohn’s looks forward to. Hospitalizations are such an emotional time for someone fighting this disease. The uncertainty, the physical pain, being absent from work and home and causing those around you the inconvenience of throwing off schedules for a week at a time. But, the absolute worst part is adding an infant to the mix.

When my son was just 4 weeks old my Crohn’s reared its ugly head and sent me and my disease packing to the hospital for a week. IMG_2015When the pain presented, I tried everything I could to avoid the trip. I just wanted to stay home and live my life with a newborn, enjoy the snuggles and oddly enough the 3 am feedings. Then, the time came when I couldn’t even get through a feeding without needing to set him down so I could run to the bathroom. I knew it was time.

It was no walk in the park having to be away from a little one. I cried. I was upset and mad at my situation. I felt like a terrible mom for letting the disease consume my life and take me away from my child. Luckily, I have a great support system that understands the emotions behind a hospitalization. My husband always brings our son Beckham to the hospital. I get to FaceTime my family to say goodnight and get pictures of my son throughout the day. Family (1)

Unfortunately, that wasn’t my last stint in the hospital for Crohn’s. Now that our son is two, I have officially lost count of my time spent away from him. Hospitalizations never get easier. Especially now when he knows I am physically absent from his life and he asks, ‘where did Mommy go?’ It’s heartbreaking and frustrating.

There are always tears involved, mostly mine, but I’ve come to terms with the fact that I am a better mom for realizing that I need to make myself healthy and not let this disease define what type of parent I am.

The IBD Parenthood Project: A Guiding Light for Family Planning

This post is sponsored by the American Gastroenterological Association (AGA). I am a paid program Brand Influencer; this post is sponsored and includes my own personal experiences.

When I was diagnosed with Crohn’s disease at age 21, finding out I had a chronic illness put my hopes and dreams on hold. I could barely think of the next day, let alone daydream about the future and the family I would one day hope to have. As the years went on, having a family was on my radar. I knew I wanted children, but wasn’t sure if my body already riddled with a chronic illness would be able to make that possible.IMG_6037

I had so many questions, so many worries. I wasn’t sure where to turn for accurate information. Advice from doctors tended to be conflicting. The internet was/is, well…the internet. I yearned for truthful, evidence-based information that would comfort me and guide me as I started my journey to motherhood.

The IBD Parenthood Project is just that. Rather than feeling like you’re wearing a blindfold and hoping for the best, moms-to-be in the IBD community can now feel at ease by having resources and a patient toolkit that answers all of those questions, and serves as a roadmap for family planning—from preconception to taking your baby home from the hospital and postnatal care.

IMG_6370One of the most helpful pieces of the toolkit is the FAQ, related to IBD and pregnancy. If I had this information readily available and at my fingertips prior to my previous pregnancies, I would have known about the importance of seeking care from a maternal-fetal-medicine (MFM) subspecialist at the start of my pregnancy. While I saw a high-risk OB, a “regular” OB and my gastroenterologist throughout my pregnancies, I wasn’t aware of what an MFM subspecialist was, or their role throughout pregnancy. After checking out the IBD Parenthood Project website, I found out there was an MFM subspecialist in my doctor’s practice, but I was never under his care. Moving forward, if I were to get pregnant again, I would want my care team to include him

The information in the FAQ about breastfeeding and medications is also extremely helpful. I felt a bit in the dark when I was pregnant with my son in 2016. I was nervous about breastfeeding while on a biologic. In the past two years, I’ve learned more and been able to educate myself on the benefits and the precautions associated with it. Now, my second child has been exclusively breastfed the first eight weeks of her life, despite my biologic injection, and I’ve been able to see how the benefits of breastfeeding far outweigh the risks for me and my family. It is resources like the IBD Parenthood Project that have helped guide my decisions. 09-untitled-9103

A common question I am often asked is “how likely it is for my son and daughter to have IBD in the future?” It’s a thought I hate to think about, but it’s always in the back of my mind. According to the IBD Parenthood Project and its Clinical Care Pathway recommendations, “up to 3% of children with one parent who has IBD will develop the disease (this means about 97% will not get IBD). If both parents have IBD, a child’s risk may be as high as 30 percent.” To me—since my husband does not have IBD, these odds are SO reassuring. While there’s a chance it can happen, it’s a reminder that IBD patients should not hold off on having a family out of fear of passing along the disease.

As a patient advocate and IBD mom, I hear from women around the world with questions relating to pregnancy, motherhood and life with Crohn’s.

The IBD Parenthood Project provides so many helpful tools. Whether it’s the IBD Checklist of Questions to ask your care team, the Myths vs. Facts Fact Sheet, or the After You Deliver Fact Sheet, The IBD Parenthood Project covers it all. From now on, women with IBD never need to feel alone as they take on their most important role of all—being a mom.

For more information, you can access more helpful resources by visiting: https://goo.gl/UY5r5r.