This blog article is sponsored by Portal Instruments. All opinions and experiences shared are my own.
I’ll always remember how I felt the moment I was told I needed to go on a biologic drug to try and manage and control my Crohn’s disease. It was Fourth of July weekend 2008. My gastroenterologist walked into my hospital room and told me it was time to “break out the big guns,” meaning starting to get medication through an infusion or through a self-injection. I was a morning news anchor at the time in Wisconsin, three years into my patient journey. I knew without a doubt, for privacy reasons, and keeping my chronic health issue under the radar, that doing an injection in the comfort of my apartment was the best choice. As I watched the fireworks reflect off the hospital room window with my mom, tears flowed down my face. I didn’t know how on God’s green Earth I was ever going to be able to give myself an injection for the rest of my life.
I was never a huge fan of needles prior to my diagnosis. Once you have Inflammatory Bowel Disease, needles unfortunately are all part of it. While we may get desensitized, patients would give anything to be able to treat their disease without needles. When I started on my biologic, my mom and I went to my gastroenterologist office and a nurse told me I needed to do four, painful injections in my thighs because at the time I didn’t have enough fat on my stomach. I was shaking like a leaf. I had no idea what to expect, I was about to inflict pain on myself, the injector felt so foreign in my sweaty palms, and I was scared about not only how much it was going to hurt, but also the long-term side effects the medication could cause to my body.
I did the first injection and it felt like liquid fire burning through my skin. I couldn’t believe I had to sit there and do three more, back…to back…to back. The experience was traumatizing. When I finally did all four, my mom and I walked into the hallway and I embraced her, crying because of my reality, and knowing that in two weeks I would need to inject two more needles into my thighs for the final loading dose. Since July 2008, I’ve done a self-injection every other Monday and for a short time weekly, while I was flaring. That’s more than 2,600 shots.
Dreading “shot day”
The first few years I would absolutely dread my “shot day” and deal with the looming dread each week. Early on I would get emotional during the process and feel bad for myself. I was only 25 years old. It made me feel like I was a sickly person. My peers couldn’t relate. It was isolating and overwhelming. Every time I open my fridge, the box of injections is staring back at me as a constant reminder of what’s to come.
Doing my injections as an IBD mom
Fast forward to present day, I’m now a 38-year-old mom of three. Luckily, the formula for the medication was changed in 2018, making the drug virtually “pain-free”, but there are times I still feel the needle. Even though I have my medication process down to a science, I still wish I didn’t have to do it and I usually wait until Monday nights to do it. The timing is moreso out of habit, because when I was a morning news anchor there was no way I was going to deal with an injection at 2 a.m. I started a tradition of doing my injection while watching the Bachelor/Bachelorette, and that’s carried over now that I have three young children, often waiting until after their bedtimes. Each time after I’m done with my shot, I text my mom to let her know how it went. She’s a nurse and has been my greatest support with my IBD since the day I was diagnosed.
Sometimes my 5-year-old and 3-year-old watch me do my injection and each time they are intrigued. I’m sure my 11-month-old will be the same once he starts to gain an understanding of what I’m doing. It makes me sad that they often witness me doing my injection, but they are also my greatest motivation to be strong and smile through it. Watching me doing injections has made my kids incredibly brave at the pediatrician when it’s time for them to get their immunizations. Because I have little ones, I have to be mindful of disposing of my medication properly and keeping the Sharps disposal container out of harm’s way. We keep Sharps Containers up high in a cubby hole in our laundry room and I dispose of the injector pen immediately.
As an IBD mom, my greatest fear is passing along my Crohn’s to my children. While the risk is low, it’s there. I hope and pray my children won’t ever need to receive a biologic medication whether it’s through self-injection or infusion. For me, there’s no end in sight, I’m expected to be on my medication (if it remains therapeutic) for the rest of my life. Thinking of my babies having to deal with needles and being forced to inflict pain on them would be difficult for me and only add to the guilt.
The future holds so much promise when it comes to drug delivery without a needle. My hope is that in the years to come, other people won’t have to succumb to the same anxiety, pain, and worry I’ve had to deal with for more than a decade.
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.
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.”
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.
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!”
This week, a look into her life and how she took on the disease as a preteen, went to college out of state and landed her dream job in California with Walt Disney, after growing up in Wisconsin. My hope is that Emily’s story of perseverance, brings comfort to parents and fellow children and teens experiencing IBD as their life story unfolds.
While I know that my parents were scared, confused and upset that I was going through this, they never let that show to me. They were and always have been the ones that lift me up when I am down, and never fail to stay by my side through all I have endured.
And there were times when I wished I would have decided to go to school closer to home, because that would have been easier. The biggest roadblock was the physical distance, because it meant a lot of back and forth travel. Especially, during flare ups. I found myself needing to make the 4-hour drive home more often than I wanted to, which resulted in the need to miss more classes. Additionally, learning to manage my symptoms completely on my own and having to adequately communicate with my medical team from so far away, was challenging at first.
My health took a drastic turn and it became clear that I would need an ostomy sooner rather than later. I initially was very scared and upset that this was happening. I didn’t know what an ostomy was or anyone that had one, so I had little idea of what to expect going into it. By the time I was a couple weeks away from surgery, I was honestly ready to have it done. I had been experiencing more symptoms and was ready to have the surgery behind me and be feeling better. I was doing my best to go into things with a positive outlook and think about it as a fresh start, but this was no easy task for me. It was an overwhelming and emotional couple of weeks following the surgery getting used to having and caring for an ostomy. I am not afraid to admit that I was scared to look at it and care for it myself after my surgery. But then I realized, this isn’t going to go away anytime soon, so I had to start doing things myself. The more familiar I became with everything, the more comfortable I was and began to realize that I was actually feeling better than before the surgery. This was hard for me to admit to myself, because I didn’t want to be put in the situation of having an ostomy or needing one for the rest of my life. While I am now on the road to needing a permanent ostomy, it still has not sunk in that it will actually happen yet. And I don’t think it is going to fully sink in until that surgery happens.
This is something that I never thought I would get to experience, and I think having Crohn’s has made me appreciate this opportunity more than I could ever imagine. The last year has been a wild roller coaster ride. I am just thankful to be here, because there were many times where I didn’t think I would even be able to graduate last year. My family and friends have been very supportive because they know how much this opportunity means for me personally and professionally. It is hard to be this far away from my main support system, but they are always just a text or phone call away. Additionally, my providers were very encouraging to me, pushing me to continue to live my life to the fullest and not let my disease slow me down. Hearing them say that to me, was really the last push that I needed to make this a reality. Knowing that my medical team wanted what was best for me, and was willing to work with me to get me where I am today, helped give me the confidence that I could do this.
It is important to trust their advice and recommendations, as scary as they can be sometimes. Additionally, try your best to not dwell on the negative things that are currently happening and think about what your future can hold. Always do your best to roll with the punches and keep moving forward, your best is all you can do.
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 Valentine’s Day approaches and love is in the air, I’m choosing to look at my disease with my whole heart and to share my feelings with you.
I may have ended up marrying a person who really wasn’t about being with someone in sickness and in health.
There’s no sense in wondering and wishing for something that is not possible. Once you take a deep breath and stop living in your healthy past you come to realize that you were given this hand of cards for a reason.
You take those steps to heal. You focus on getting better. You do all you can to make it through. Crohn’s and any chronic illness for that matter gives you this opportunity over and over. So, while we all tend to have negative feelings about our health and worry about what the next hour will bring, try and pause and stop for a moment. Think about all the beauty and insight it’s provided—and love yourself and your disease for a second.
lights camera crohn's 