A letter to my daughter, from your mom with Crohn’s disease

My sweet daughter,

In less than 30 days you will be safe in my arms. It’s felt like a long journey to get to this point with you. Much like your brother, you’ve made me feel a sense of health that I never knew was possible. Through the creation of you and your life, I’ve found a deeper appreciation for my own.

You’ve silenced a disease that has ravaged my body for more than 13 years. _F6B0473You’ve reminded me of what is possible and what I’m capable of. You’re already an inspiration to me and you don’t even know it.

For as long as I can remember, I’ve hoped and dreamed for you. A daughter. A best friend. A relationship so sacred, so unique. Words don’t do justice for how anxious and excited I am to bring you into this world.

Just like your brother, you will see me struggle some days. Not with being your mom, but with my Crohn’s disease. It pains me to think about making you worry about my health or question when my next flare up will be, as leaving you and Reid for an extended hospital stay will be so tough on me and on our family.

I never want you to feel scared or question my resilience. Instead, I want to show you how strong I am and instill a positive attitude in you from a young age. You will witness the highs, the lows and everything in between that comes with chronic illness, but trust that mama will always come out on top. _F6B0340You and your brother serve as my greatest motivation to push through the pain and be strong. You’ll see how your dad loves and nurtures unconditionally and rises to every challenge that comes my way.

Here are my hopes for you.

A kind, happy heart. Always try and see the best in others, rather than coming to quick judgement. Soak in the happiness bestowed upon you each day and light up the room with your smile, even when the going gets tough.

A confident attitude and demeanor. Stand tall and be proud of who is looking back at you in the mirror. Love yourself for all that you are and don’t let any person make you question your worth.

A compassionate, empathetic mind. Recognize the pain of those around you, and be supportive, thoughtful and caring. Be a positive light in the lives of others.

A patience with yourself and others. Understand that life has setbacks, disappointments and pain, but that God has a plan for you. Trust in it, even when the path seems daunting or overwhelming. Try and use each challenge that comes your way as a moment to learn and grow.

A strength to use your voice. Never be afraid to speak up, be heard and communicate your hopes, dreams and fears. Feel empowered by your voice and know that everything you say and think matters._F6B0313

A life without Crohn’s disease. While there are many qualities I would love to share with you—I hope and pray you stay healthy and never receive an IBD diagnosis. I will be there every step of the way, should that ever happen. I’ll be your best advocate and your closest confidant in sickness and in health, and always.

See you soon, my sweet girl. My rainbow baby. My darling. Someday you’ll know how you’ve made my heart fill with such joy and immense gratitude.

Mama

Operation “Good Health” with IBD through finding love, raising kids and building your dream

“Crohn’s isn’t what I’d call a “sexy disease” – it’s hard to invite the love of your life to share a bathroom with you. You are scared, embarrassed, worried and everything in between. However, my bathroom habits are out of my control. And, even though I’d give my arm for my incredible man, I don’t want him to know what goes on in the bathroom. I want to be sexy, a woman of mystery … and IBD sometimes isn’t… well, hot.”

If that didn’t get your attention, then I don’t know what will. Katy Love is an IBD warrior who recently tied the knot October 21 with the love of her life. Katy+Vince-12Sickness and health truly take on a whole different meaning when you live with a chronic illness. Katy witnessed her husband Vince’s compassion and character while they were dating.

She had a wound vac that was loud, smelled and made it impossible to shower. Vince loved her despite her health complications and Katy said her Crohn’s brought them closer throughout their courtship.

“I’m extremely blessed to have a supportive partner. As anyone with IBD knows, you have great days and horrible days, sometimes within the same week. I truly believe IBD has made me a better, more understanding partner. I value each day, especially days without pain. And I value Vince and his support. From day one, he’s wanted to be involved in my Crohn’s journey. Going to doctor appointments, infusions, participating in fundraisers and holding my hair when I get sick,” said Katy.

While Katy doesn’t allow her IBD to define her, it’s a huge part of her day-to-day existence. It impacts her as a mother, a business owner, a partner, a friend…and especially as a wife. Diagnosed with Crohn’s at age 17, more than 21 years ago, she’s endured 40-plus colonoscopies, multiple bowel surgeries and removal of more than 75 percent of her bowel.

Preparing for the big day

Leading up to her wedding day she instated Katy_Vince_Family_137“Operation: Good Health.” She made it a priority to get a minimum of eight hours of sleep a night, as lack of rest tends to be a trigger for her. She was on a mission to hydrate, hydrate and hydrate some more. To set herself up for success and limit any surprise flares, she planned out her meals the entire wedding weekend. For example, she does well with bland foods, like noodles, rice, chicken and (big one) avoiding alcohol. And finally, she delegated responsibilities (aka stress) to friends and family. Katy admits she’s pretty Type A and would much rather do things herself than hand them off. However, she wanted to enjoy her wedding and because of her proactive planning, she was able to do just that!

Katy is a shining example of living life to the fullest, despite her disease. She was blessed with three, beautiful, healthy children. Fall 2017 Family 1Reagan, Grayson and Carter may not understand why their mommy is in bed or why she needs to pull over on the side of the road when she gets sick, but Katy’s Crohn’s has taught her children a great deal of empathy at a young age. A few weeks ago, she was in debilitating pain and her nine-year-old offered to make dinner for her brothers. She poured them each a bowl of cereal and that was everything.

Along with motherhood, Katy has managed to have a successful career in public relations, including serving as Vice President of Global Communications for Crocs, Inc. Recently, she launched her own PR firm, Comm Oddities Inc. that specializes in food, fashion and footwear. There is nothing this woman can’t do.

Advice after living with Crohn’s for 21 years

As far as advice for the rest of us? Boulder_Headshots_043

“Be kind to yourself. I’m very guilty of getting frustrated with myself. I want to do it all, all the time. Give 100 percent to my job, my family, my friends … and some days just getting out of bed is challenging.

One of my favorite quotes about living with a chronic illness (that’s most of the time invisible) is “Those with chronic illnesses aren’t faking being sick, they are faking being well.”  That really hits home. You don’t want to burden others, so you simply say, “I’m fine” and smile. But, asking for help isn’t a weakness. Those close to you want to help, they simply don’t know how.”

 

Taking on IBD, infertility and being a triplet mom: How my college roommate does it all

When it comes to life, I often say I don’t believe in happenstance. Meaning, I believe everything happens for a reason. This rings true with one of my closest friendships. Stephanie and I were random roommates freshman year of college and had an instant connection. photo by J Elizabeth Photography www.jelizabethphotos.comWe ended up living together throughout our entire college experience, stood up in each other’s weddings and have managed to stay very close, despite thousands of miles between us since graduation.

On college graduation day in May 2005, I aspired to be a TV journalist. She had dreams of being a Physician Assistant. Both of us accomplished those goals—what we didn’t see coming was that we would both be diagnosed with inflammatory bowel disease in the years ahead (the first and only people in both our families)—me with Crohn’s in July 2005, her with ulcerative colitis in February 2009. She was working as a Physician Assistant in Family Practice when her symptoms developed. She knew the pain and bathroom habits were not normal.

Stephanie recalls, “Once I admitted to myself these symptoms weren’t going to go away, I reached out to the doctor that I was working for at the time. He contacted the GI Doc we referred all of our IBD patients to, and he got the ball rolling toward a diagnosis pretty fast! When the GI walked in the room after my colonoscopy with a solemn look on his face and just shook his head, I was devastated. natandstephI teared up. I was so fearful of the unknown, as far as what this is going to mean for me for the rest of my life.  There is such a variation in the way patients with IBD can experience the disease… my mind immediately went to worst case scenario for myself.”

Stephanie’s journey with IBD and motherhood is one that is sure to inspire and provide hope to many. Along with juggling chronic illness, she also dealt with another devastating hurdle, infertility. Luckily, once she became pregnant through IVF, her ulcerative colitis symptoms were silenced.

“It was never far from my mind that while I was not pregnant, my uc was waiting quietly, like a ticking time bomb ready to go off, and that would then halt all the time, money and effort we were putting into getting pregnant. But, thankfully my uc behaved itself. We got pregnant on our first round of IVF with triplets (identical girls and a boy) who are happy, healthy and my entire world!”

Today, Stephanie and her husband have beautiful triplets who just started kindergarten. To take on IBD is one thing—add triplets to the mix… amazing! IMG_2885

“I’ve had IBD since day one of being a mom, so I don’t know any different! Just like when people ask me “What’s it like to have triplets?” my response is usually “It’s all I know, I didn’t have a singleton before my triplets, so this is the way I know how to be a mom!” For obvious reasons having IBD sometimes makes our mom responsibilities a little bit more challenging, but you have to figure it out and take the good days with the bad, because your kids need you!”

Stephanie says since having her kids, she’s noticed she’s much more willing to “wave the white flag” and reach out to her GI sooner when things start to go south. stephanieShe used to ride out the symptoms much longer before admitting there was a change that needed to be addressed, mostly because she was fearful of having to go back on steroids. I can attest to being the same way. Prior to becoming a mom, I waited until going to the emergency room was the only option. Now, I am more mindful of listening to my body and nipping flares in the bud, because my family needs me.

“Having a chronic disease definitely gives you a new perspective. It makes you appreciate the good days so much more! And when the not so good days creep up on you, having a good support system to help you physically and emotionally is crucial! Thank those in your life who lift you up and let them know you appreciate them! When you overcome each and every not so good day, nat and steph2it makes you feel just a little bit stronger and gives you the confidence that you can handle the curveballs life is bound to throw at you over and over!”

Beyond grateful to call this fellow IBD warrior mama one of my dearest friends. I’m sure after reading about her journey, you can see why.