As the weeks go by and the days get closer for baby girl to arrive, I can’t help but feel anxious and nervous about what it’s going to be like having two kids under two, while managing my Crohn’s disease. Throughout this pregnancy, I’ve quickly come to realize how my needs and health oftentimes take a backseat as I take care of my little guy. 
While I feel incredibly blessed to be in this position, it comes with its own unique set of worries.
Prior to becoming a mom, my sole focus could be taking care of myself. While hospitalizations and flare ups were always dreadful, looking back, I had no idea how much “easier” it was to go through sickness, when all I had to worry about was me. I think many IBD women are hesitant to become moms because they are fearful of being able to juggle it all. That’s a valid concern, but personally motherhood has always been something I’ve dreamed of and wanted. I wasn’t about to allow my disease to hold me back from experiencing it.
That being said—you have to find patience within yourself and a trust in listening to your body’s symptoms to know when you’re doing too much and need to slow down. You need to be willing to wave the white flag at times and surrender to your illness. You have to be willing to ask for help. You need to be confident in the fact that your children will grow up differently than others. 
They will live within a home that talks about chronic illness and experiences it each day. Your little ones will learn compassion and perspective before they are even able to truly communicate. If you have a child and chronic illness, you know what I mean.
So far, I’ve been a mom for 19 months. I’m still a rookie. I’m still in the trenches of learning how to navigate this new life. But, I’m proud of how I’ve taken on the role of motherhood and balanced my illness along with it. I finally feel like I’m in sort of a cruise control with my son. In January, everything will start anew as we welcome our daughter into the world. Reid simply can’t wait for “sissy” …he constantly kisses my belly and tries to pull up my shirt, so he can “see” her. While I can’t wait either, the fear of a postpartum flare once again weighs on my heart. There are so many what ifs as a chronic illness mom.
What if I’m hospitalized and have to leave TWO babies at home until I’m well? What if my disease spirals out of control and I’m home alone with nowhere to turn? What if the stress of taking care of two children with limited help sends me into a flare up? What if I’m not enough? I’m trying to be proactive now to prepare myself mentally for both the magical moments and the challenges that I’ll be presented with when we become a family of four. 
Whether it’s with motherhood or with living life with Crohn’s, it’s important to remind yourself that everything goes through stages. There are highs and lows, but each moment is fleeting.
One of the most amazing parts of pregnancy when you have chronic illness is witnessing your body create a miracle, right before your eyes, after years of letting you down. It’s a beautiful reminder that despite your illness and the parts of you internally that tend to malfunction, you are still able to carry a child and bring a life into this world. Pregnancy and motherhood have given me a renewed sense of self in my patient journey with Crohn’s. Motherhood has helped me love my body again, after years of damning it. It’s shown me that while IBD has shaken me to the core and blindsided me countless times, it hasn’t taken away one of the life’s most gracious gifts and experiences.
The featured image from the story is one of me smiling outside my home. The comment on the article: “Crohn’s sucks. Why don’t you show what a real sick person looks like, instead of a happy smiling one???? Just saying—nothing happy about this crap.” 
If you choose to smile and show Crohn’s who’s boss, than no matter what obstacles and setbacks come your way you’ll tackle them and fight through flares with a knowingness that better days are ahead.
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!
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.
It’s been a rough few days in the Hayden household—our almost 13-month-old son has been battling days of hives and an allergic reaction that we can’t seem to pinpoint.
As I feel burning sensations in my abdomen at the end of the day, the internal conversation of what could be happening within my own body consumes my thoughts. I can’t help but worry that I can’t go down. I can’t allow my disease to flare when my family needs me most.
So, the last thing I want to do is sound like I think I have it so bad—because trust me, I keep everything in perspective and know I’ve been blessed with a healthy baby. My goal is to provide insight into motherhood with IBD and the challenges it can present at times.
Each day is a learning experience. Much like my initial diagnosis of Crohn’s disease nearly 13 years ago, I know I’ll continue to grow and find comfort in my new role. Navigating unknown waters and experiencing illness within your child is all part of it. No matter how many years go by, as parents, we’ll never be experts, but we’ll continue to evolve and discover what works for us personally and as a family.
Throw in an unpredictable, often debilitating condition and tackling the role is even more challenging.
Becoming a mom has made every poke and prod, injection and procedure less of a pain, because now I have so much more to fight for.
As people we grow. Each chapter of our lives matters and is part of our story. Embrace the good and even the bad—because it brought you to where you are today. Pain and flares are fleeting and as we all know, so is youth. Our babies grow up so fast, we must hold the feel good moments close and not dwell on past hurt or what could happen tomorrow.
hope is he’ll realize what an integral role and life-changing impact he’s had on me since the moment I held him in my arms for the first time.
est to paint a picture for you. My legs feel like complete jelly. My brain feels in a fog. I feel so lethargic; the thought of showering seems overwhelming. I’m not in pain. My stomach feels fine. But, there’s something “off” and you feel it with every part of your being.
Living in the Midwest, I didn’t want two winter days with temps in the 80s to pass without enjoying them. I knew the fresh air and exercise would be a welcome excursion for my little man and me. Did those two walks with the stroller push me to my limits? What is too much? What is not enough? At 34, you feel lazy when you can’t keep up or have to admit you’re just too tired. You look perfectly fine on the outside, you feel like those around you wonder if you try and take advantage of your disease.
that stated, “Fatigue in IBD is experienced by up to 86 percent of patients with active disease and 41 percent in remission.” It’s crazy how common this is! For people with IBD, fatigue can be physical, mental or a combination of both.
We tried new medications, but after eight months of no change in my small bowel, my gastroenterologist thought it was time to say goodbye to the diseased portion of my intestines. I remember the phone call from her just saying “I’m going to give this to you bluntly, you need to get them out.” At first, I was shocked, then angry that my body was failing me. I brought my husband to my surgery consultation, and I’ll never forget the look on his face as the surgeon was asking me very detailed symptom questions and I was answering them honestly. It was a look as if I had by lying to him for years. Even my husband, the person I spend every waking hour with, have been with for almost six years and since I was diagnosed, didn’t fully understand how bad my disease had gotten in the last three years.
As a mom and a wife, I questioned how my family would make do without me… But as surgery drew closer and I was in so much pain that I could only eat liquids and was basically confined to the fetal position, I knew it was time.
Getting surgery has changed my life in just 12 weeks. I can’t even imagine how much it’s going to change my life in the next year or two. I know the statistics aren’t in my favor, but until then I will totally be living my best life with a foot less of intestine and a bigger smile on my face!
lights camera crohn's 