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. 
We 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. 
I 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! 
“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. 
She 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, 
it 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.
Everyone works together to watch me, the baby and the pregnancy every step of the way. We get an ultrasound once a month! I see that as a perk!
The app features tracking, curated learning, and expert Q&A. 
Oshi has the potential to significantly improve lives with smart tools to manage and control Crohn’s disease and ulcerative colitis,” said Daniel Weinstein, CEO, Oshi Health, Inc. “Oshi’s easy-to-use, best-in-class tracking and insights tool will allow patients to work with their physicians to uncover hidden patterns to figure out what triggers flares for their unique bodies.”
I specifically was interested in featuring Hope because she’s pregnant with baby #2!
complications, the doctors I saw were pretty sure I would have difficulty conceiving; however, I am so thankful that God has given me grace in that aspect of my life. I will say that my first pregnancy was a bit of an “oops”, BUT my body was in 100% remission and I believe that greatly contributed to my success. This time around—knowing that I wanted to get pregnant, I made appointments with my GI and had blood-work, a colonoscopy, and wound up having to have an MRI to rule out any potential flare up. Thankfully, I was flare free and my doctor gave us the “ok” to try and conceive. I attribute much of our success to my remission. A healthy mom has a much greater chance of conceiving successfully in terms of Crohn’s Disease.”
It definitely does, BUT I try to live my life with as much positivity as I can and a lot of laughter. I’ve found that Crohn’s has matured me far beyond my age in years and that has helped me navigate the endless responsibilities that come with being a young wife and a young mother. I never take health for granted and I am thankful every day for the opportunity to raise my child(ren) free of feeling sick. I get fatigued faster than the average person due to Crohn’s, but I am so used to it, it’s my normal. Also, have you ever met a mom who is full of endless energy?! Nope.”
We must surrender to Christ and let him lead us through the highs and the lows. If you aren’t a person of faith, my prayer for you is that you find peace in either the waiting of becoming a mom or peace in the journey of motherhood. It is not easy at all, but it is so worth it, and I pray for every woman who might be struggling to carry a baby because of this disease. It truly breaks my heart to think about that suffering. When I was pregnant with Evie, I joined a study called the PIANO study which stands for Pregnancy and Neonatal Outcomes in Women with Inflammatory Bowel Disease. I answered questions during pregnancy and at birth I brought in a lab kit where we sent off blood from me, from Evie, and from my umbilical cord, to study if any of my medications got to my baby. There was no trace of Cimzia in Evie’s blood or the umbilical cord which was wonderful and a big part of why I take Cimzia, as it does not pass the placenta. But, I mention this study to share my passion to help all women with IBD reach their dream of motherhood. I crave more information about this disease specifically for those moms struggling. Know that you’re not alone and you have many people rooting for you and your future babies!”
Evie was born, my blog kind of fizzled and after awhile I was missing that creative outlet. My sister was pregnant with her second at the time and we decided to join forces and it was so much fun for us! Recently, my sister has taken a step back from blogging and is pursuing different passion and focusing solely on her family, so the blog has evolved again into an outlet for me. I am an extrovert and love talking with new people/sharing recipes/getting advice/looking at the newest trends/home decor/etc. so blogging just seems like a good fit for my personality. I am a stay at home mommy first and foremost, but the blog has allowed me to have something else that’s just mine and just for me.”
As a patient advocate, you also become somewhat of a confidante and voice of reason for your peers in the community.
What I do want—is for people to recognize what compassion fatigue is…and how as chronic illness advocates and caretakers we need to be mindful of how we’re feeling and internalizing the struggles of those around us.
I offer support from the bottom of my heart, but as a mom and a wife, I do need to recognize when it’s time to unplug and take time for myself. When my baby naps each morning—I spend that “break” on my computer writing articles about IBD, participating in Twitter Chats, and talking on the phone with those who want to hear about my patient experience.
As part of my self-care and disease management I need to de-stress, so I don’t put my own health at risk. This article is painful for me to write—I can’t stand admitting that I am struggling to do it all. But, compassion fatigue has been something I’ve been feeling for a few months. I want to be the best advocate for others and do all I can to make a difference and show there’s so much life to be lived outside of your disease. I want you to see how much you can thrive with this disease and all that you can accomplish. I want to be the person I needed the day my world turned upside down when I was diagnosed. I want to be all the things. But it’s not possible. It’s not fair to me, it’s not fair to you.
Fast forward three years and her diagnosis changed to Crohn’s Colitis.
I’m thankful IBD has opened my eyes and given me the gift of true empathy. That empathy has led me to crave a deeper understanding and genuine connection with friends and loved ones. It has also shown me the true strength in others, and I am constantly humbled by the selflessness of my sweet husband and forever soulmate.”
Your new “normal” is going to look a little or a lot different; it will take some time to adjust to that. Try not to compare your new energy level to your old, your body is fighting a hard battle and you’re doing the best you can. If your energy/activity level is more limited, plan accordingly. Choose wisely who you want to spend your time with and what you want to do – soak in and cherish these times.”
Whenever I am having a really difficult day and see a fellow warrior saying they can relate, offering words of kindness, or that they are having a hard day as well, you can feel that genuine connection and know that they truly mean it.”
It was an awesome event that brought together writers and patient advocates from a variety of chronic illness communities. I was there as one of the inflammatory bowel disease representatives.
Instead of staying silent, remember that humans connect best at points of vulnerability. Illness gives our lives more meaning, we’ve discovered who really loves us and who our genuine relationships are.”
This was really eye-opening to me. You may wonder what I’m referring to. As a patient advocate and within any conversation you have—how quickly are you to relate to someone’s story and respond with your own similar experience? I think we’re all guilty of this. We aren’t malicious in our actions and maybe we’re trying to self-disclose to show we empathize. But, instead of responding with our own personal story—it’s imperative we listen, rather than tell. Let the storyteller guide the conversation.
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