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.

 

Navigating IBD from age 12 to 22: How Emily landed her dream job at Disney

Navigating inflammatory bowel disease as a pediatric patient brings on additional stresses, concerns and worries. For 22-year-old Emily Gavol, this was the case. At 12 years old, she was diagnosed with Crohn’s disease. EMILY2This 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.

What was it like to be diagnosed with Crohn’s disease when you were in seventh grade?

Initially it was a relief to know that there was finally an answer as to why I had been so sick for months. But it was also difficult to hear that I was diagnosed with a chronic illness that I had never heard of before. Being so young I didn’t really full grasp the severity of being diagnosed with a chronic illness.

How do you think the disease impacted your childhood and your perspective on life?

Getting diagnosed so young forced me to grow up very quickly. I had to learn to manage my symptoms while still attending school, doing homework and other normal activities. My perspective on life also changed, it became clear to me that health is something to never take for granted and appreciate it while you have it. Along with realizing quickly that the little things in life are not important. While most of my friends were worried about what to wear to school, I was just hoping I would feel well enough to make it to school. Additionally, this disease has taught me that there are many things that are out of our control and you just have roll with it sometimes.

How did your family and friends handle your diagnosis and how have they been there for you throughout your patient journey?

My family and friends were always there for me to lean on during my diagnosis and have been ever since. EMILY3While 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.

How did it feel to “fail” so many biologics?

Over my nearly 10 years with Crohn’s disease, I have struggled to find a medication that works for a continued period of time. When I first failed Remicade, it was frustrating because I had been getting better, then backtracked to experiencing more symptoms again. That frustration has continued and morphed into annoyance, as I have continued to fail more biologics. It is frustrating to feel like all these medications are being thrown at me to knock down this disease and nothing seems to work.

What inspired you to leave home and attend college in Minnesota, despite your illness?

Since I was nine years old, I knew that I wanted to become an Imagineer with the Walt Disney Company and work as an Interior Designer. As I got older, I knew I needed to attend a good school that would set me up for success. I researched the best programs in my area, and the University of Minnesota was the best fit for me.  Their program and campus seemed to be everything I was looking for, so I wasn’t going to let my Crohn’s disease stop me from trying to achieve my dream.

What’s it like to attend college away from home, while battling a chronic disease? What roadblocks/hard times did you face?

Attending a school so far from home without a doubt was a big challenge. EMILY4And 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.

How do you overcome the setbacks that come your way and not allow them to de-rail your goals and plans?

I have always been a very determined and strong headed individual. I will always do my best to achieve my goals and not let anything stand in my way. Despite, all the setbacks my disease has thrown my way, I have just rolled with the punches and kept pushing forward. I do my best and my best is all I can do.

Talk about what it was like going through the ileostomy and knowing you are getting a permanent ileostomy? How do you feel about it–why kind of emotions does it bring?

Going through my transition of getting an ileostomy was the most difficult thing I have gone through as a result of my Crohn’s disease. 20171123_182143002_1534121126326My 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.

You landed your dream job post college. Speak to what it’s like to live across the country, away from family and friends–while living out your dream job…with Crohn’s.

I am literally living out my biggest dream. EMILY5This 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.

Do your coworkers/did your college roommates know about your Crohn’s? How are people towards you when they hear?

In college I deliberately chose to live on my own with no roommates in order to give myself the best environment to thrive in.  Over the past few years of having different jobs, I have told my coworkers about my Crohn’s disease. I don’t usually share it right away, because I want people to get to know me for me and not just my disease.  When the time feels right, I do tell people about my Crohn’s disease. After I tell people about my Crohn’s, I always feel like a weight is lifted off me. Once people know my story, they have been as sympathetic as they can be.  There always seems to be the range of people who know a friend that has it, to the people that have never heard of it before. For those who have never heard of it before, it is a good opportunity to teach them about it.

What are your hopes for the future?

My biggest hope for the future is an easy one, a cure for this disease.  Aside from that, I hope I can continue to live my life and do my best to not let my disease stand in the way.

Advice for newly diagnosed patients?

My advice for newly diagnosed patients would be to find a good provider that you trust.  20130923_135906001_1534122952628It 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.

What would you tell yourself at 12 years old…looking back at what you know now?

I would go back and tell myself that this is only the beginning.  Life will be a never-ending roller coaster of ups and downs. Some of the downs will really take it out of you and knock you so far down you won’t think you will be able to find a way back up.  And the some of the ups will be achievements you never thought were obtainable. But things will get better and there is always something better to look forward to right around the corner.

 

Finding “Hope” and grace through motherhood and IBD

Connecting with women who battle inflammatory bowel disease and juggle it all is empowering. When I came across Hope (@hopeheartandhome) on Instagram, I was immediately impressed by her upbeat, real-life look at life as a stay at home, wife and as a blogger. Weeks passed by—and she mentioned she had Crohn’s disease in her in Insta-story. I sent her a direct message because there’s so much we can learn from one another as we navigate motherhood and life in general with inflammatory bowel disease. IMG_2070 (1)I specifically was interested in featuring Hope because she’s pregnant with baby #2!

Hope is 28 and lives in Charlotte, North Carolina with her husband and two-year-old daughter, Evie. She’s due with her second baby this October. August marks 10 years since she was diagnosed with Crohn’s disease. In getting to know Hope, her name fits her to a T. She is inspiring, driven, funny and focused on living her best life—despite her disease.

Like many of us, Hope was young when she received the life-changing diagnosis. At only 17—she had her entire future before her. In November 2012, after numerous hospital stays and an abscess that would not go away with IV meds, she had surgery to remove her ileum. Unfortunately, post-surgery she faced several complications ranging from a pinhole leak, surgery to repair the leak, as well as a serious case of MRSA. Hope says thanks to her faith in Christ and the support of family and friends, she came out stronger than ever with a 7-inch battle scar to prove it! Hope has been taking Cimzia injections ever since and has been able to maintain remission.

As a woman with IBD–did your Crohn’s present any complications or issues along the way with your first pregnancy?

Hope: “I answer this with an insanely grateful NO! I am extremely blessed that my body reacts so well to pregnancy. In fact, my gastro doctor often teases me that I need to have alllll the babies because my body loves being pregnant. I say this with sensitivity, as I know it is a struggle for many women and due to surgery IMG_1446complications, 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.”

How has Crohn’s impacted your role as a mom and a wife?

Hope: “Wow. This a big question! I’ve honestly never really thought about it impacting these roles of mine. I see Crohn’s as a little portion of who I am. It’s a very unglamorous and annoying part of me that I don’t like…but, it’s a part of me and therefore my story. Truthfully, I have been so blessed to have been in remission for about four solid years now, so my roles of wife/mom haven’t been altered by it, and for that I am extremely grateful. It was a long and bumpy road to get here and I would be lying if I said the thought of having a flare up doesn’t terrify me. IMG_1914It 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.”

Now you’re pregnant with baby #2, first of all HUGE congrats! How has this pregnancy compared to your first one–how are you feeling in comparison, etc.?

Hope: “Crohn’s-wise I feel wonderful and am experiencing zero symptoms. Pregnancy wise I am much more exhausted this time around thanks to my full of energy little two-year-old! Second pregnancies are very different… the “newness” is gone, and you know what to expect and I haven’t had a minute to daydream about this baby as often as I did with my daughter, but that’s because she keeps me busy! We’re excited to see if a little boy or another little girl will be joining us this fall!”

What advice do you have for women with chronic illness who aspire to be moms themselves?

Hope: “Patience and prayer. God hears our every thought and I truly believe He desires to give us the desires of our own hearts. The biggest thing I have learned in my life as a Crohn’s girl is that our timing is not our own. IMG_2023We 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!”

How do you find time to focus on self-care and combat the fatigue associated with not only motherhood, but IBD?

Hope: “I have not mastered this at all, but I am trying. Working out is something I do for me…my 45 minutes of endorphins, alone time, and knowing I am fueling my body. Open communication with my husband is another thing that helps me focus on self-care. If I am feeling exhausted or just needing some time, I tell him. We must communicate on how I am feeling to fully be a team. And hey, same goes for him! I’ve learned a lot about friendships/relationships and making sure that I set my time and energy on things and in people who are truly rooting for me and my family and vice versa. Life is too short to spend it stressed out or surrounded by people who are not life-giving. That’s been a hard lesson for my people pleasing self, but, being strong in my beliefs and in who I am and what I want to put out into this world has helped my mindset and overall health tremendously.”

Tell me about your blog Hope Heart and Home. With more than 11,200 Instagram followers you must keep busy! What inspired you to start the blog? 

Hope: “This blog was originally started by my sister and I actually had my own blog, but once image1 (10)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.”

Interested in connecting with Hope? You can do so by emailing her at: hopeheartandhome@gmail.com or following her on Instagram (@hopeheartandhome).

 

A Valentine letter for Crohn’s

Yes, you read that title correctly. I used the word ‘Valentine’ and Crohn’s in the same sentence. I’d be lying if I said I would have been able to do that years ago. Hate would have been a more relatable feeling and word. IMG_8476 (1)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.

If it weren’t for my Crohn’s I wouldn’t know my strength.

If it weren’t for my Crohn’s I wouldn’t have my perspective.

If it weren’t for my Crohn’s I wouldn’t know the meaning of a “feel good” day.

If it weren’t for my Crohn’s I wouldn’t be able to empathize with others on the same level.

If it weren’t for my Crohn’s I wouldn’t be able to see people’s true colors.

If it weren’t for my Crohn’s

photo by J Elizabeth Photography www.jelizabethphotos.comI may have ended up marrying a person who really wasn’t about being with someone in sickness and in health.

If it weren’t for my Crohn’s I’d feel invincible and take my health for granted.

If it weren’t for my Crohn’s I wouldn’t be me.

In life there are triumphs and there are challenges. There are stresses and there are successes. There are highs and there are lows. I find embracing the good, the bad and the ugly enables us to reach our potential. The painful, low points are difficult in the moment, but in hindsight they push us to our limits and show us all what we are capable of.

People often ask me if I wish I didn’t have Crohn’s disease. I find it to be a loaded question. I’ve gotten to the point in my patient journey where I wouldn’t change a thing. So much of taking on this chronic illness is your attitude. remedy-nsmith-stlouis-1212There’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.

Your voice, your experience, your journey has the power to inspire. You have the ability to change lives. You have the opportunity to show that invisible illness and everything that comes along with it doesn’t need to destroy your dreams.

While I know some days, weeks and months are going to be treacherous in this journey, do yourself a favor and stop being so hard on yourself. Love yourself. Love all of you. Even the part of you that is broken on the inside. I’ve been through the flare ups and the scares. I’ve overcome pain that causes me to pass out. I’ve weathered the storm of being wheeled into surgery. I’ve done hundreds of injections and blood draws and pokes and prods. At the end of the day, you rise. IMG_6282You 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.

XOXO,

Natalie