Juggling two under two while taking on Crohn’s disease

November 5, 20185 Comments

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.

How a first-grader is taking her Crohn’s and turning it into a positive

October 29, 2018October 29, 2018Leave a comment

She’s a ball of energy and a sweet little chatter box, wise beyond her years. Seven-year-old Brooke, of Missouri, was diagnosed seven months ago with Crohn’s disease. She spiked a fever on New Year’s Eve 2017 that lasted for eight days, and from that point forward, life was never the same.

I had a chance to get dinner with Brooke and her mom, Tara, this past week. I couldn’t help but look at this little girl in awe. Despite already being hospitalized three times since March and starting on a biologic drug in August, it was as if she has dealt with the disease her entire life. She talked candidly about all the pokes of the needles and how she tells all the nurses they are her friend. She raved about the tater tots and pancakes at St. Louis Children’s Hospital. And laughed about how annoying it is when the lights go on in your hospital room in the middle of the night. She was more like a teenager, than a little girl.

Here’s how her Crohn’s diagnosis came about. After ruling out the flu, mono, strep and a UTI, doctors discovered she was anemic. The pattern of fevers continued for two months. Still no answers. As time passed, Brooke’s pediatrician started considering a GI issue. After an endoscopy and colonoscopy, Brooke and her family were told she had Crohn’s disease on March 2, 2018. In a matter of months, she went from being an outgoing, energetic kid to a hospital patient on a laundry list of medications. She developed her first fistula while on methotrexate and was on prednisone for more than three months.

Dealing with the diagnosis

Fast forward to this past summer and this sweet little girl received her first Remicade infusion four days before she started first grade. Brooke is the first person in her family to receive an IBD diagnosis. Her mom, Tara, says these past months have been the hardest she’s ever endured. Her mind races with the what ifs, as she navigates her family’s new normal.

“Were there signs we should’ve seen sooner? Did we do something to cause this? Were we making the right decisions for her treatment and care? Brooke has a HUGE personality. When she was first sick, and before her diagnosis, she just stopped talking. She would lie on the couch for hours and hours every day. This was not my Brooke. She normally can’t sit still for more than a few minutes! I was SO scared because I knew something wasn’t right. Watching her in pain and miserable for two months while we waited on this diagnosis was miserable. You just feel helpless…all we could do was love her and pray,” said Tara.

Juggling life and family from the hospital

Tara and her family have encountered many challenges along the way. Between the costs of the medications, the hospital stays, all the tests and trying to juggle work. To say it’s been a lot, is an understatement. Tara’s husband, Josh, works from home which helps, but Tara is a preschool special-education teacher. She was out of paid sick days by the end of January of this year. Although both employers have been understanding of Brooke’s health situation, the family has taken a big hit financially.

“When you’re going through this, you are spread so thin and it’s difficult to ask for help. We have another daughter, Haley, who is 10. Of course, when Brooke was in the hospital, either Josh or I were with her every minute. We live over an hour from Children’s Hospital in St. Louis, so it wasn’t possible to pop up for a quick visit. It was also hard for us to ask for support. We needed help mentally, financially, and logistically with many things. We have an AMAZING support system of family and friends who have helped us throughout this process.”

An advocate from the start

Brooke has been a true IBD warrior every step of the way. She doesn’t even cry anymore when she gets her IV. Brooke openly communicates about her diagnosis and is able to tell you which foods trigger symptoms, and which are safe for her to eat. She explained to me how she’ll have one strawberry at lunch at school, if it doesn’t “hurt her tummy” she has two strawberries the next day, and three the day after that. This little girl just gets it. Tara says in just a few short months, Brooke has already become a very good advocate for herself.

“Watching my baby go through this has changed me forever. Although I know she doesn’t know yet, what it really means to have Crohn’s, I am always so amazed by her strength. She talks about it very ‘matter-of-factly’. It doesn’t define her. I hope and pray constantly that anything that I encounter, I can deal with, the way she has dealt with this. It’s made our family stronger by seeing that we can face this together.”

A GoFundMe page has been created for Brooke and her family. Click here to submit a donation, every dollar helps!

The power of assuming positive intent with chronic illness

August 20, 2018August 20, 2018Leave a comment

When someone questions how you manage your illness, or seems to belittle your patient experience, it’s easy to get combative and think the worst. But, recently—while on Twitter, I saw a fellow patient advocate and friend of mine respond to a tweet by saying “Assume Positive Intent” (API). This is the first time I had ever heard of the concept. It intrigued me immediately. Like most people, sometimes when words are said or actions are made—I immediately jump to conclusions and internalize what I think the person meant. Part of this is being sensitive and part of this is life with a chronic illness. There aren’t a whole lot of “safe spaces” for those of us to feel understood and connected with.

Social media allows complete strangers and even those close to us to be keyboard warriors. People often feel like they can hide behind a screen and be hurtful. At the same time, just like with texting—posts on social media can be interpreted incorrectly. Rather than lash out or get defensive, take a moment to pause, gather your thoughts and remind yourself that most people wake up each day with a desire to live life in a positive way and do good in this world.

By not getting caught up in others’ actions and intent—we’re freeing ourselves of the stress that can be a key trigger to our inflammatory bowel disease and that has detrimental effects on our mental health. You will feel empowered simply by taking a moment to think about how you’re going to respond to someone else. You can’t control others, but you can control how you feel and how you react.

No one is perfect. We all make mistakes. At the end of the day, by giving others the benefit of the doubt—you’re able to change the way you approach conflict and you’re able to rid some negativity from your life. I’m not saying never stick up for yourself and let everyone treat you how they want, but use this strategy as a way to handle your personal relationships and how you respond to others. It will say a lot about your character and make you feel in the driver’s seat, at a time you normally may feel out of control.

So, here’s my challenge to you. The next time you feel a guard go up or when you feel disappointed by another person’s words or actions—assume positive intent. As someone who’s battled Crohn’s disease for over 13 years, I constantly find myself needing to take a step back and remember that the only person who’s lived my journey is me. It’s up for me to tell my story. It’s up for me to share it. It’s up to me to communicate to those when my feelings are hurt or I’m disappointed. But before I jump to conclusions, I need to assume the other person is trying to help me or learn more about my experience—rather than ruin my day or hurt my feelings. API all day, baby. Try it. Trust it. Live it.

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

August 13, 2018Leave a comment

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. 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.

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. 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.

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. 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.

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. 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.

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. 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.

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. 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.

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.

To the person who doesn’t want to see me smile as I battle Crohn’s

July 23, 2018July 23, 20188 Comments

Today marks my 13^th anniversary with Crohn’s disease. Lights, Camera, Crohn’s: An Unobstructed View, is two years old today! It’s a big day. Lots of reflection and bittersweet emotions. It’s always difficult to know how to handle an anniversary of a chronic illness diagnosis—is it a celebration? Is it a remembrance of what was? Is it all the above? For me, I like to think about how far I’ve come since July 23, 2005. How my perception of life, people and my own personal strength has grown, changed and evolved, thanks to my disease.

Since I started sharing my story in 2014 as a patient advocate, I’ve really put myself out there. I’ve been vulnerable, honest and haven’t minced my words. I’ve been fortunate to have speaking opportunities, videos, conferences and feature stories. While that is all wonderful—it also puts you in a space and a place where complete strangers—who have no idea what you’ve endured, can pass judgement and make claims about how you choose to take on your illness.

This past week—I was surprised by a comment on Facebook, written on an article by Health Central that highlighted my patient story. Like many people on social media, rather than read the article—they reply to the title or the pulled quote in the caption. 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.”

This really took me aback. This felt like a slap in the face. This comment hurt me. Obviously, she didn’t read the article or she would have known about all my hospitalizations, surgery, and rollercoaster of a journey. But to flat-out judge a fellow patient who lives with this debilitating disease and demean me for having a positive attitude…and smiling (God forbid!). If it weren’t for my attitude and the way I approach my Crohn’s disease, I never would have accomplished my dreams of being a television news anchor. I never would have trusted a man with my heart and gotten married. I never would have become a mother and gotten pregnant again.

If there’s anything I’ve wanted you to take away from my blog and my journey, it’s about finding the power of positivity in your experiences and seeking the good that still exists in your life, despite your disease. If you want to think woe is me and suffer all day long on the couch…that will be your life. 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.

As a patient advocate—I know I can’t please everyone. I know not everything I say will resonate with you. And that’s completely fine. All I ask is that you have an open mind and understand that each person chooses to take on this terrible disease how they want to and shouldn’t be called out for it. My life is not all about hospitals, IVs, pain and suffering. Yes, this past week my injection hurt so badly I was sobbing hysterically and yes my stomach was killing me while out to dinner. But you know what, those moments passed. Rather than allow my pain to rob me of a wonderful conversation with a friend—I stayed at the restaurant. Instead of wallowing in the pain of my injection and the bruise that remains days later, I had a bowl of ice cream and gave my 16-month-old a few extra high fives.

So, to whoever decided to try and belittle me on the article about my patient journey and look down on me for smiling, please know I am a real person…and I am sick. But sick doesn’t come first when I think of who I am. It’s a part of me. It’s not all of me. That’s how it will always be, no matter what. And one thing I can promise you—now and in the future, it will never stop me from smiling.

Taking on IBD one step at a time: Getting empowered through Team Challenge

June 25, 2018June 25, 20182 Comments

One of the many benefits of getting involved with the Crohn’s and Colitis Foundation is finding people locally who understand and live your reality. I became friends with a woman named Angie last year. She’s a resilient person with a positive attitude. Her energy is contagious. This week, a guest post about her involvement with Team Challenge and how it’s enabled her to find community not just in St. Louis, but throughout the United States. I’ll allow Angie to take it away…

My journey began with inflammatory bowel disease began in April 2011. For me, symptoms went from non-existent to emergency surgery within a month of first waking up with cramps and diarrhea. I had been a healthy active person up to that point and I was a month shy of my 46^th birthday.

I was first diagnosed with ulcerative colitis, but that diagnosis was later changed to Crohn’s disease. Due to reoccurring abscesses, my GI doctor ordered some additional tests that showed I have Crohn’s. When I was first diagnosed with IBD, I had never heard of Crohn’s disease. There was so much to learn and absorb, but I was so sick, it was hard to take it all in. My emergency surgery resulted in a total colectomy. I had a perforated bowel in 4 places. Once the surgeon opened me up, he discovered things were much worse than he expected and I had sepsis. Those early days in the hospital were hard, but I was committed to staying positive and hopeful.

One of my favorite ways to stay active had always been power walking. If I could walk somewhere vs getting in my car and driving there, that was my path of least resistance. So, getting to a point where I felt well enough to get back to exercising was a goal of mine. Ironically when I first asked my doctor when he thought I’d be well enough to power walk again, he recommend I not walk too far because he knew I’d probably need to use the restroom. In those first couple years living with Crohn’s, I was taking 20+ pills a day and probably using the restroom 30+ times a day. I was fragile and got short winded quickly, even walking to the corner in my neighborhood was a challenge. I stayed hopeful that brighter days were ahead. I was very fortunate to have a very supportive group of friends and family around me.

Fast forward to the fall of 2015. I was feeling much stronger since being on Humira for about a year. I saw a post on Facebook about Team Challenge and an upcoming Rock and Roll Marathon and Half Marathon that was taking place in February 2016 in New Orleans. I didn’t hesitate to sign up and commit to doing a Half Marathon and fundraising to find a cure for Crohn’s & Colitis. Almost immediately, one of my childhood girlfriends decided she was going to do the Half with me and she too joined Team Challenge. I’m not sure we knew what we were getting into, but we were 100 percent committed. Two ladies, soon to be 50, and neither had even done a 10K, let alone a Half Marathon! In full disclosure, we always knew we were going to walk, not run the Half. We might be crazy, but as they say, we were only “Half Crazy”!

Team Challenge has been one of the best decisions of my life. It has been a truly life changing experience. I am about to start training for my third Team Challenge race taking place in November in Savannah, GA. Team Challenge is a few hundred people who share one common goal, which is to find a cure for IBD. Once you sign up, you commit to a fundraising goal, but Team Challenge provides the coaching and training to not only complete the race, but to reach your goal and have fun along the way.

Race weekend is amazing! There are opportunities throughout the weekend to meet with your individual team, as well as the entire Team Challenge family. The night before the race there is an inspirational pasta dinner.

The evening is filled with tears of joy and we celebrate our combined mission of finding a cure. Some are parents running or walking for a child, some are friends and family running in memory of a loved one lost, and some are like me – a Crohn’s patient determined to not let Crohn’s hijack her life!

My advice to anyone looking to feel empowered against IBD would be to get involved with Team Challenge. I have made so many new friends and I’ve gained so much confidence through my involvement. I guarantee you’ll leave race weekend with a feeling of accomplishment and you’ll feel the love from the Team Challenge tribe that is now an extended family and support system of your own.

Click here to learn more about how you can get involved with Team Challenge.

An ode to Dads: A letter from a father of four with IBD

June 18, 2018Leave a comment

I’d like to give a shout out to all the dads out there who have inflammatory bowel disease, yet persistently persevere to make life happen. christian3

I have been dealing with UC/Crohn’s for 18 years now, and in that time, I have had seven surgeries, countless procedures, two near death experiences, my colon removed, a j-pouch, my ego scared, and my relationship with God strengthened. I’ve tried every prescription drug, had every side effect, and continue to fight the good fight on a daily basis. christian I’ve also been blessed with a beautiful wife and life partner, as well as four amazing children (10, 7, 3, and 9 months). This takes an already difficult situation, and adds more “life” responsibility as well.

You see, as a father, you place the needs of your family and children above your own. A father doesn’t really get a day off. And when you’re dealing with health issues that can cause daily battles, it’s easy to find yourself in a place of self-pity, weakness, or doubt. That’s why I’m absolutely amazed to see the strength of all the dads out there that can deal with this struggle, but continue to be a dad first, push through, and ensure that “life” still happens. You see, Crohn’s doesn’t mean you can miss baseball practice, the soccer game, the anniversary dinner, or just “life” in general. Life will go on with or without you, so all those with chronic illness are heroes in my mind. In fact, being a father of four has been the most motivating and rewarding things we could have done as a family. christian2

I can remember when I was recovering from one of my more recent surgeries, my family came in to visit me in the hospital. Like most fathers, I felt the need to provide for my family, get back to work, I just had to get going. I just didn’t have time for this! There are MORE than enough reasons for everyone impacted by IBD to feel defeated, want to give up, or take an easy route. My family is a CONSTANT motivation for me to keep going and keep fighting the fight. I cannot and will not let them down. I think most fathers feel that way. We are here to help shape our children, and ultimately provide the ability to learn, have fun, be kids, and eventually mold them into productive members of society. It’s a tall order for us all, but I think men with IBD have learned to be persistent with their health battles, and that also helps us to persevere through the trials and tribulations of fatherhood.

So today and every day, I commend all of those fathers who refuse to let their disease dictate their life. christian4 Take the time to get to know a father with IBD, and you will meet one of the most courageous strong willed people in the community. As a man, we can sometimes let ourselves down because as an individual, it just impacts me. But as a father, that is not an option. We must persist, have faith, and fight the fights every single day, so that we can continue to mold and shape our children, and provide support and guidance for our families that mean absolutely everything to us.

We are motivated, we are strong, and we have IBD. Above everything else though, we are blessed to be a father, and if lucky enough, a dad.

Finding strength through your IBD tribe

June 11, 20182 Comments

Back in the fall, I had the privilege of sharing the stage with a fellow IBD advocate in the St. Louis area during a Crohn’s and Colitis event. Her name is Kelli Young. Kelli has battled Crohn’s disease for 28 years. She’s a veteran to the game, and has incredible perspective about how IBD not only shapes our lives, but dictates the kind of people we become. This week—a guest post from Kelli about why finding your tribe—an empathetic support system—makes a world of difference.

It took over a year and a half of being prodded and poked in every orifice of my body to receive the diagnosis of Crohn’s. I received the devastating news eight days before entering my sophomore year in college. The excitement of knowing “I’m not a hypochondriac” was overshadowed by the fear of having a “poop disease”. You see, my first year of college, I became best friends with my Suite mate. Ironically, she too battles Crohn’s. I was 20 years old, diagnosed with a disease that had no cause and therefore no cure…how can that be? Why me? What am I going to do? I didn’t even know how to swallow a pill. I was never the sick kid! Now, I had to take 24 pills a day, which sometimes would take me an entire hour to swallow one dose, throw up, re-swallow again. Three times a day. It was as if I had entered “hell”.

Six month after diagnosis, I came home from college for winter break. Tipping the scale at a whopping 75 pounds, my body was too weak to undergo surgery. For 45 long days, I received all my nutrition through an IV. This was so my bowel could rest as I prepared for a colon resection. The surgery was my only hope for living a more productive life.

What I’ve learned after nearly 30 years with IBD

Fast forward nearly three decades—and through the years, I’ve been labeled as “the complicated” patient. I’ve undergone multiple surgeries which include: three colon resections, gall bladder removal, appendectomy, countless ERCP’s and fistula repair. Can’t forget the life-saving blood transfusion I needed after my colon ruptured, causing me to lose half my blood volume. I dealt with TPN (Total parenteral nutrition)/bowel rest for each of the three surgeries. 45 days was my longest duration on NPO(no food). 30 days was my longest hospital visit. For the last 28 years, my body has had medication dumped in it.

My generation was taught differently. Which made my journey with the disease a little different than today. I was raised to think “only the weak complain!” “Someone always has it worse!” “Suck it up butter cup”. “If you want the job done right, do it yourself”. This made me look at the situation as this was “my” disease, “my” problem and I don’t want to make anyone worry about me or feel sorry for me! I became a master at hiding the disease and a master at hiding the byproducts of the disease.

It has taken me decades to evolve. Six years ago, I realized, I had to create a better “village” for myself. And my voice was starting to be heard. I just wanted my peeps to treat me as an equal, no matter how many bowel movements I’ve had that day. And most importantly, yearning for support and compassion, not to be mistaken for pity or despair! During my evolution process, big sacrifices had to be made. As a mother of two, I had more than just myself to think about.

The power of transparency

Today, transparency has set me free. Free from the misconception that I’m “lazy”. Free from the labels placed on me because of my thin statured frame. Free from the worry of how others view me. And free to live my life.

Today, I am able to share my journey with an audience that might share a similar experience or with an audience that has a loved one with Crohn’s Disease. I share my story, with the hope of inspiring others and showing anything is possible.

My disease has made me who I am today. It has taught me that I am strong, determined, confident and secure. I’m a proud mother to two amazing children. I carried and gave birth to both of them with zero complications. I’m a business owner of a successful insurance agency, which I established 4 years after diagnosis. I didn’t allow my disease to derail my professional aspirations. I’m an active mother and manage to find time to be a room mother and Girl Scout cookie manager.

As a patient advocate, I serve on the board of the MidAmerica Chapter of the Crohn’s and Colitis Foundation, in addition to other professional boards. I value the good days! I reflect on my bad days and listen when my body tells me to slow down and get rest.

My advice to you

If you’re newly diagnosed or in the thick of the battle, it’s important that you realize… “this is your normal”. Embrace it! Accept it! Own it! Speak about it!! Get a “village” that gives you positive support, not to be mistaken for negative attention. If I can get thru this crazy game of life with Crohn’s disease, so can you! Don’t let the disease define you.

While I know my journey will include the daily struggles from the disease, it no longer is my hidden secret. My village knows and loves me for me. They understand the disease and ask questions to understand it better. This is not just my “problem” any more. As we all patiently wait for a cure, it is important we speak up, join together and help one another.

Reflecting on two years of marriage with IBD

June 4, 20181 Comment

Two years ago today, I married the love of my life. The man who has been by my side through multiple hospitalizations, flare-ups, surgery and day-to-day management of my Crohn’s disease. Prior to walking down the aisle, we shared vows during our “first look.” Here are a few lines from my vows:

“You’re an incredible partner—you’re my rock when I’m sick and you know how to lift my spirits when I’m down. You have a way of easing my worries and bringing me clarity when I’m uncertain. Each day spent with you—is an extraordinary blessing. I feel so incredibly lucky that God brought us together and chose you to be the one person among millions who lights up my soul.”

When you battle inflammatory bowel disease, it’s a big part of your relationships. As a family, Bobby and I focus on one another, our son and managing my disease. It’s a team effort. It’s comforting to know that when I’m not feeling well or going through a difficult part of my disease journey, that I can lean on my husband for strength and support. Just this week, I was struggling with symptoms. Countless bathroom breaks. Relentless gnawing cramps that bothered me for hours. My husband always checks in on me—lightly knocking on the bathroom door to make sure I’m ok. Texting me while I’m stuck in there, bringing a smile to my face with funny emoji’s and sweet talk.

It’s the little things. The day-to-day management that many do not see and that can be easy to take for granted. Our caretakers, our main sources of support and comfort do so much—effortlessly. At times, living with a chronic illness and being the one who doesn’t feel well, can bring about guilt. It also brings out the best in us. When I’m vulnerable and need a boost, I see my husband rise up to the challenge, time and time again. I’m constantly reminded I chose to live my life alongside someone who has more compassion in their heart than I knew imaginable.

Tonight, I’ll give myself a Humira injection. Tonight, my husband will stand in front of me like he always does, cheering me on and holding onto our son, so I have a focal point of inspiration. Each injection, as I stare intently at my guys, I tell myself I need to be strong for them. I tell myself I need to do all I can to stay healthy and out of the hospital. I tell myself anything is possible with them by my side.

So, as we celebrate two years of marriage and nearly five years together, I reflect on how far we’ve come as a couple, as a family and how our love has grown as a result of my illness.

Oftentimes it’s life’s hurdles that provide the greatest perspective, the strongest insight, and the clarity that you’re exactly where you need to be in this life and that your disease is a part of you, but you are so much more. IBD does not need to rob you of love. It does not need to prevent you from getting married. And it certainly does not need to stop you from finding your fairy tale ending.

Finding “Hope” and grace through motherhood and IBD

May 28, 2018Leave a comment

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. 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 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.”

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. 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.”

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. 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!”

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 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).

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