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

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.

Why I cried talking about Crohn’s at my friend’s rehearsal dinner

I stood before a room of strangers last week and shared some sentiments about my friend Jenna who was marrying the love of her life the next morning. Chances are—you’ve been at a rehearsal dinner and participated in the ‘open mic’ opportunities.

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Jenna’s birthday, 2009

As a former TV newsie, I always enjoy a chance to speak and articulate my feelings! I started out talking about how we knew one another and the type of friend she was—and then I went for it. I broke out the “C” card…the “Crohn’s” talk. Most of the people in the room were strangers to me until that night, some probably had no idea what Crohn’s was.

In that moment, I tearfully thanked my friend of more than 12 years in front of a roomful of people for always being present, always genuinely caring and for always being there not only in life’s amazing moments—but also through every flare up I’ve experienced along the way. When you are diagnosed with a chronic illness, you don’t stop and think twice about which friends are going to be there, you just expect it. Unfortunately, you’ll find many ‘friends’ tend to fade to the background and will continue to do so throughout your patient journey.IMG-0841

This friend—is the opposite. This friend has sent me countless snail mail letters on adorable stationary—some with Ryan Gosling’s face plastered all over it, others with an inspirational girl gang type quote. Each time I’ve been hospitalized, she’s been my constant ray of sunshine. Always texting. Always calling. Always checking in on me. Her efforts seem effortless. And that my friends, is priceless. Rather than feeling guilt for being “that friend” she makes me feel empowered and loved.

When you live with IBD (or any chronic illness for that matter)—seek out your Jenna(s). IMG-0838Find the people who lift you up. Trust in the bonds you create with those who are there for you because they want to be out of the goodness in their heart, not as an obligation. Hold on closely to the relationships that spark joy and don’t extinguish your flame. Lean on those who are willing to give you their hand to lift you up, even when you don’t ask for it.

At Jenna’s rehearsal dinner, I wanted her to know. I wanted her to know how her compassion and empathy meant the world to me. I wanted her to know how much I appreciate all the effort she continually puts into our friendship, despite living out of state from one another for the past decade. I wanted her friends and family members, and her now husband to see the impact she’s made on my life and how her efforts to be there, make her who she is.

My hope for the IBD family is friendships like this. The ones that stand the test of time. The ones that ground you. The ones that show you the beauty of another’s heart. The ones that remind you that you aren’t ever going into battle alone. The ones that serve as your light when the days are dark. They exist. They are possible. You just need to find them.

Wedding photo cred: Savannah Kay Photography

Writing for a reason: IBD Pen Pals

Who says snail mail is a thing of the past? For one 10-year-old in the Chicagoland area, connecting with fellow IBD pediatric patients is helping her cope, comfort and help others as she takes on Crohn’s disease herself. emily4Meet Emily. This past February she received her chronic illness diagnosis. Even though she’s brand new to IBD life, she’s taking all the pain and all the setbacks in stride.

Her mom, Michelle, says watching her young daughter go through Crohn’s has been a punch in the gut.

“It’s overwhelming, lonely, and mentally draining for everyone involved. Her little body has been put through so much in the last few months and she just goes along with it all. I wish I could’ve done all the horrible tests and take away every ounce of her pain. My heart breaks every time she gets poked, every time she takes medicine, every time she has to do a test, or when I send her to school, knowing she feels horrible.”

Emily’s courage and compassion for others has inspired Michelle. Her Crohn’s diagnosis has spurred an interest to connect with other IBD kids. Rather than take on the disease in silence, Emily finds there is strength in numbers, a purpose for her pain. Emily penpalHer mom was able to reach out to fellow parents on Facebook about a pen pal program.

“How cool to come home from school and have a couple letters waiting for you from kids all over the country?!? Emily has already made 12 new friends with IBD from the U.S. and the U.K. I never want Emily to feel alone on this journey nor do I want any other kids to feel alone. I want Emily to see that other kids who have IBD are living a “normal” life and that she can, too! There may be days when I won’t understand what she’s going through, but her new friends will.”

Emilyand michelleFrom a parenting perspective, the pen pal group has introduced Michelle to other mamas going through the same fears and experiences. The connections have brought her peace of mind as she navigates these new waters with her daughter.

“Emily and I are firm believers in spreading positivity and what you give out, you get back. It’s up to us to find the good in this situation and what better way than emilylettermaking new friends? Friends who understand and continually cheer you on, no matter how far they are. My hope is that Emily will make life long connections and that these letters will serve as a constant reminder that she is never alone.”

Interested in joining this pediatric pen pal group? A Facebook page is in the works. In the meantime, you can get involved by emailing Emily’s mom, Michelle: positivelyshelly@gmail.com.

Breastfeeding with IBD: 5 tips for getting started  

You can think of us as ‘bosom buddies’—IBD moms trying to navigate life with chronic illness as we take care of our families.  Both of us battle Crohn’s. Both of us are on Humira. Both of us are bloggers and passionate chronic illness advocates. For Gutsy Girl blogger, Stacy Ransom, one of her main missions was to breastfeed her son. As a mom who chose to formula feed my son and who is currently breastfeeding my 12-week-old daughter, trust me—I get the guilt, I get the struggles, I am completely of the mindset that ‘fed is best’. The same can be said for our guest blogger, Stacy. This week she shares her insight on breastfeeding with IBD and offers up five helpful tips for navigating nursing. image1 (11)

Breastfeeding is a touchy subject. I’ve purposefully avoided discussing my experience for fear of offending others, because it seems that regardless of the stance you take, someone always gets upset. I’d like to start with abundant clarity that above all, fed is best and there is zero shaming here for mothers, regardless of the path they choose.

I was diagnosed with Crohn’s Disease in 2015 and spent years doubting my body’s ability to do anything right. When I became pregnant with my son in 2017, I wanted to do everything possible to prevent future gut issues for him.

We don’t know the cause of Inflammatory Bowel Disease, but someimage2 (1) studies suggest it may start with a bacterial imbalance in the gut, and several studies have shown that people with IBD were less likely to have been breastfed as infants. Furthermore, a study in Denmark showed that breastfed babies developed certain types of healthy bacteria in their digestive tract, which non-breastfed babies were lacking. A healthy amount of beneficial gut bacteria can promote a healthy immune system which fends off different diseases.

When I became pregnant with my son, I opted to deliver via cesarean due to my IBD, but I knew this would shift his first gut community. I read all the studies and learned all the digestive benefits of breastfeeding, so I wanted to do everything I could to set us up for breastfeeding success. My Crohn’s specialist also said she had noticed a decrease in postpartum flares among her patients who breastfed. I was really committed to giving this my best effort.

image3 (2)It wasn’t easy, but I’m so glad I stuck with it. We lasted 16-months until he self-weaned and he has a very healthy immune system so far, despite the cesarean and me being on Humira. Best of all? I didn’t have a postpartum flare, which my doctor attributed to the combination of staying on my medications, following my diet plan and breastfeeding.

I know not everyone has a positive nursing experience, but I’ve received countless messages from new mothers with issues that can easily be either resolved or prevented entirely. If you’re an expectant mother with IBD and think you want to try breastfeeding, here are some of my best tips for getting started:

  • Gather your supplies early. I stocked our fridge with easy, healthy, nursing-friendly snacks. I also made “nursing stations” in key areas around the house including a water bottle, snacks and lanolin cream. I bought a few very loose, button-down shirts to allow for easy nursing access and air flow throughout the day. I also got a few soft nursing bras in a full cup size bigger than my normal size (depending on your “normal” you may opt for two cup sizes bigger), and machine-washable, cotton nursing pads. They stick less than the disposable ones and cause less irritation, in my experience.
  • Find a Lactation Consultant. I can’t stress this enough. No matter how many YouTube videos you watch, nothing can compare to a real expert standing with you and guiding you through. Most hospitals will provide at least one consult before you are discharged. If yours does not, contact your local La Leche Foundation for support. Don’t listen to people who tell you it will just “come naturally,” because you BOTH are learning and the right latch from the beginning makes a world of difference! Some pain is normal in the beginning, but if it’s unbearable or if you start to bleed, something is wrong, and you should have a professional adjust your latch or check your baby for a lip or tongue tie.
  • Start off strong. Allow your newborn to latch as much image4as possible, especially in the first 24 hours, and provide plenty of skin-to-skin. After a c-section, the last thing I wanted to do was constantly get in and out of bed to pick up a newborn. Instead, I just spent my days with my son nestled on my chest so we could both sleep, heal, bond and get my milk flowing.
  • Stay positive. Stress won’t help either one of you (and it certainly don’t help your IBD). Relax and take deep breaths as your infant latches. Your milk may take a few days to fully come in, and it may take several weeks to get in a good rhythm. If you feel your supply is “low,” don’t panic. You are likely still producing enough to sustain your infant, as they don’t need much in the beginning. Continue to latch as much as possible (at least every two hours), and don’t supplement with formula unless your doctor advises you to. With that being said…
  • Trust your doctor. You and your baby will have regular check-ups to ensure he/she is gaining the appropriate weight. If they’re not despite your best efforts, it’s 100% okay to supplement. Fed is best and no one wins if your baby is hungry and you’re stressed. Trust your doctor in terms of gauging when to keep trying and when to supplement.

Above all, try to remember that while this is a totally natural experience, sometimes (especially for those with chronic illness) things don’t work like they’re “naturally” supposed to. image5Cut yourself some slack. Becoming a mother is stressful, but if you are feeling overwhelmed, talk to someone. Postpartum depression and anxiety are very real and as a mother with chronic illness, you may be more prone to those feelings. Seek out help from your spouse/partner, enlist nearby family/friends for support, and keep in close contact with your doctor to manage your symptoms.

And if nursing doesn’t work out for you, be kind to yourself. Your baby will still grow up to be healthy and loved, and that’s all that really matters.

Check out Stacy’s blog: https://gutsy-girlblog.com/

Connect with her on Instagram: @gutsygirlblog

 

 

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.

 

 

Silencing the Stigma: How one man is using his patient journey to empower others

This week—a guest post by IBD patient advocate Ziyad, from The Grumbling Gut. IMG_20181104_220957_401Ziyad shares how his experience taking on Crohn’s inspired his decision to become a radiographer and show fellow patients they are much more than just a number. I’ll let him take it away…

“Don’t let fear keep you quiet. You have a voice so use it. Speak up. Raise your hands. Shout your answers. Make yourself heard. Whatever it takes, just find your voice, and when you do, fill the damn silence.”

Those words were spoken in an episode of Grey’s Anatomy by Meredith Grey and I couldn’t have put it better myself. I was officially diagnosed with Crohn’s disease in 2007 having spent the previous year experiencing symptoms and not knowing what was going on. My absences from school – and to some extent my social life – didn’t go unnoticed and when asked where I was or if I had to cancel last minute, I’d just give my standard air tight excuse of “something came up last minute”.

Truth be told, I wasn’t ready to tell anyone outside of my family about my diagnosis, so I did the only thing I could – kept it a secret. IMG_20181122_171801_972I was afraid of what people might say, what they might think of me or if they might start treating me differently – I didn’t want to be anything other than the supposedly ‘healthy’ 17-year-old with a ‘normal’ life. As a result, I spent twelve years living with Crohn’s in silence. I was embarrassed, because let’s face it, talking about your bowel habits isn’t the most glamorous topic.

If we fast forward to now and having gone from being so secretive about my IBD to talking about it so openly and sharing my experiences through social media – you may ask “what’s changed?”.

The answer is simple – I’m not afraid anymore. I refuse to let fear keep me quiet.

Using my voice to beat the stigma

It took me a long time to realize that not only do I have voice, but I could use this voice and speak up to beat the stigma that held me back from sharing my story for so long. I also believe there’s no point of speaking up if my actions don’t match what I’m trying to achieve, which is why I started to volunteer for Crohn’s & Colitis UK, the charity giving a voice to people with Crohn’s or Colitis. IMG_20181129_204053_117

Anyone that has IBD knows the impact it can have on your daily life, but my IBD helped shape my career. Having spent a fair share of my time in hospitals being a patient, I got used to the hospital environment and now work as a diagnostic radiographer. My IBD exposed me to the radiography profession early on, having all my x-rays and MRI scans done to diagnose and monitor my disease. Shortly after being diagnosed and referred to a specialist I started the pleasant journey of getting treatment for my Crohn’s.

As everyone and their IBD is different, some medications may work for some and won’t for others so at the time there was a lot of trial and error and it felt like ‘let’s throw what we got at the wall and see what sticks’. Some of these treatments would make me feel even sicker due to the side effects and it really did feel like I was being treated as a list of symptoms and not as a person. Long story short, I changed specialists three times before finding one who treated me like a person.

How being a patient helped guide my career

Having experienced life with Crohn’s first hand has given me incredible insight as to how to provide better care for all the patients that I encounter on a day to day basis. I try to give my patients the opportunity to speak up, use their voice and be heard because of what I went through in the early stages of my IBD diagnosis. It can get busy in hospitals, especially with the increasing patient load and shortage of staff. IMG_20190210_202149_996It can be easy to fall into the ‘conveyor belt’ motion of one in, one out, to try and manage the workload. But it is in these busy moments, where taking a few extra seconds to ask a patient who looks upset, scared or frustrated if they’re OK, that can make all the difference.

It humanizes the experience for patients and gives them a chance to express themselves. I’ve learned it’s the little things that have the greatest impact in patient care.

My advice to anyone reading this—No matter how tough things get, always find the strength to speak up, because keeping all your pain and worry inside won’t do any good. The more you share your story, the more likely you will inspire someone else to share theirs.

Follow Ziyad on Instagram: @thegrumblinggut, Twitter: @thegrumblinggut, and Facebook: The Grumbling Gut.

 

 

 

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.

 

 

The IBD Parenthood Project: Creating a brighter tomorrow for IBD women

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.

IMG_6040Family planning is exciting, nerve-wracking, and daunting. Couple those emotions with battling inflammatory bowel disease (IBD) and the experience can be downright overwhelming. The tide is changing though when it comes to pregnancy and IBD, thanks to the IBD Parenthood Project. For current IBD moms, until now, there was never a one-stop-shop for factual information. The IBD Parenthood Project website is a resource dedicated to ensuring we have all the knowledge we need to feel comfortable and at ease, as we bring a life into this world.

As a mom of two under two, who’s lived with Crohn’s for nearly 14 years, I often felt as if it was a “learn as you go” and “trust what you’re told” type of experience during my pregnancies. As much as I worked hard to educate myself and advocate for my needs with my care team, there was always a part of me that wondered if my decisions were the best for both me and for my babies.

The same can be said for IBD Parenthood Project spokeswoman, Crohn’s warrior and mom of two, Jessica Caron. Mom and boysWith two sons, ages six and three, she felt even more in the dark during her preconception discussions and pregnancies.

“If I had the IBD Parenthood Project as a resource when I was having my children, it would have provided me with answers to questions that kept me up at night. I felt so alone and didn’t have much support,” said Jessica. “I never felt like those around me understood the decisions I was making regarding staying on my biologic medication throughout the pregnancies and breastfeeding while on it. I truly believe the concerns came from a kind place, but if I had this resource to educate my support system, I would have felt more at ease going through that experience.”

Jessica attributes her passion for patient advocacy to living life in the trenches with IBD and realizing how difficult it was to make plans for her future – plans that impacted not only herself, but also her spouse and family.

“When I was diagnosed at age 21, there wasn’t much information available that was easily understandable and digestible. It would have been great prior to having my sons if I had the information right at my fingertips. The accessibility of the IBD Parenthood Project makes the information available to patients, their partners and their family members,” said Jessica.

Launched in January 2019, the IBD Parenthood Project was created with the patient in mind. Jessica, along with other IBD advocates, had a seat at the table alongside physicians and helped inform the Clinical Care Pathway.

31959676668_65b104d1b7_o“The IBD Parenthood Project is a huge win for the IBD community. This resource is paving the way for how we work together with our clinical team. This is a proud moment for the IBD family. We’re showing the health community how to work collaboratively with patients,” explained Jessica. “I never want women to feel alone in the process. This initiative empowers IBD women and their support systems, and makes the experience of bringing a life into this world a whole lot more enjoyable and a lot less worrisome.”

Jessica had a flawless first pregnancy, but unfortunately, dealt with a difficult flare-up nine months after delivering her son. Before she got pregnant again, she made sure she was in remission. If she were to get pregnant today, she says she would start talking with her IBD specialist months ahead of time, while coordinating care with her ObGyn. Jessica would also add a Maternal-Fetal Medicine (MFM) specialist into the mix.

For those who don’t know, an MFM specialist is an ObGyn physician who has completed an additional two to three years of education in training. You can think of them as high-risk pregnancy experts. For pregnant women with chronic health conditions, such as IBD, an MFM specialist works to keep us as healthy as possible as our body changes and as the baby grows.

On a personal level, I went into both of my pregnancies in remission and my Crohn’s disease activity was silenced. IMG_6032Upon delivering both of my babies, I felt symptoms start to creep back into my life less than a week after they were born. I too would include an MFM specialist in the future, if I were to have another child.

“I’m so glad to know the IBD women of today who get pregnant will have the IBD Parenthood Project resources and have better access to our community,” said Jessica. “As IBD women, it’s key to be proactive by discussing preconception planning and waiting to get pregnant until you’re in a remission state. Work closely with your care team, make a plan that is specifically for you, and stick with it.”