Through life we come across certain people who we connect with effortlessly, understand completely and admire beyond measure. One of those people for me is my cousin Bill Coon. I’ve mentioned Bill in previous articles—and anyone who knows me is aware of his incredible back story. Bill was the eighth newborn transplant in the United States and the fourth in the Midwest. He received a second heart transplant, along with a kidney transplant at age 20 in October 2009. Bill has always done a remarkable job of honoring the life of his donors and has made it his life’s mission to educate, inform and inspire others about the importance of organ donation.

Today is Bill’s 28^th birthday. It just so happens he was born during Organ Donation Awareness month. Thanks to the unselfish hearts of complete strangers, my cousin, who is like a brother to me, is with us today.

“By being a donor, you don’t just save a life, you change a life forever and those lives go on to positively impact hundreds if not thousands of others for years to come. At the center of all that positivity is your single, selfless act of generosity,” said Bill.

Bill is a professional motivational speaker who travels across the country sharing his story. This year he’s embarking on a new journey—focusing all his efforts and energy on meeting with medical groups, nonprofits and corporations. There’s one audience in particular he’s targeting—and that’s students through something he calls “Your Legacy Tour.” 

“I realized I could do something unique. In recent years I have been asked by high schools in the Midwest to speak to their students about leadership, adversity, handling cyber-bullies and many other topics. I figured while I was traveling, I could very easily bring those same messages to students in different parts of the country. That’s essentially how Your Legacy Tour was created,” said Bill.

Here’s how the tour works—Bill is looking for 12 schools, ideally high schools, in select states. In his presentation, Bill uses his unique life story of overcoming extreme adversity to teach students the importance of leaving behind a lasting, positive legacy in high school. Bill achieves this through his humorous and conversational style that provides students with stories and lessons, which encourage them to care for one another, develop the characteristics of a leader, and strengthen the student body through acts of kindness. Click here to submit your school’s information and to learn more. Bill will provide the selected schools with a 60-minute presentation. There’s no catch—he just needs a large space, a working microphone, a projector and a laptop with PowerPoint. The 12 schools will be selected by June 30.

As someone who suffers from Crohn’s disease, words cannot begin to explain how Bill’s outlook on life, advice and perspective has pushed me to see the sunshine and rainbows even on the stormiest days. Through life—we all face challenges that put our strength and will to the test. Find “your Bill” and I promise it will help you get through whatever isn’t going your way.

Click here to learn more about organ donation.

 

 

19 days…that’s how long it’s been since my son Reid made his grand entrance into this world. Unfortunately, this past weekend my Crohn’s started acting up again and I needed to take pain pills not for my incisional pain from my C-section, but rather for my unbearable abdominal pain. Since we’ve been home from the hospital with our little bundle of joy I’ve slowly started to feel the symptoms creep up. Whether it’s running to the bathroom in the middle of a feeding or feeling the gnawing pain when I hear Reid cry…I’ve been reminded multiple times that I’m not in the clear from the dreaded postpartum flare.

I laid in bed after taking a Tylenol with codeine staring at the ceiling—taking in the silence of the early morning hours as my mind raced. The only sound I could hear was my eyelashes brushing across my pillowcase… tears rolling down…knowing that while I’ve been strong since the diagnosis…now I had to be even stronger. It’s not about me and my pain anymore, life is about my son and my family. I miss Reid when I run to the grocery store or head out on a quick errand, I can’t even begin to think how my heart would ache if I had to be hospitalized and kept away from him for days.

Is it discouraging and worrisome? Yes. Am I grateful for the timing? Yes. Throughout my pregnancy I hoped and prayed I wouldn’t go through a flare up that would harm my baby. I was blessed with nine months of freedom from the disease that’s been a part of me for nearly 12 years. While pregnancy had its fair share of discomforts, they paled in comparison to what a day of Crohn’s pain feels like. It was amazing to drink a little coffee and have a bowl of ice cream and not face any repercussions. I would go through a stressful day waiting for my stomach to carry the burden, and feel nothing. Now that my little Reid is in my arms and out of my belly, that whimsical feeling of being disease-free has disappeared before my eyes. The symptoms slowly started to return about a week after we got home from the hospital. It’s emotional and scary, but I’m so glad I was able to stay healthy when it mattered most.

My mom has been staying with us since Reid was born—taking the brunt of the night feedings and doing so much to help us get acclimated to our new life. When I’ve been experiencing stomach pains or had to run to the bathroom she’s been right there to swoop Reid into her arms and take care of him like I would. My mom heads back to Chicago tomorrow and my husband is back at work. I’m losing my safety net and the knowingness that if I’m sick they can step in and allow me to take care of myself. What’s a mom to do when her baby is screaming and she can’t even stand up straight to walk across the room? What’s a mom to do when she has to run to the bathroom and her baby needs to eat? What’s a mom to do when the fatigue from the illness is coupled with the exhaustion of sleep deprivation?

If you’ve followed my story or know me as a person, I pride myself on being positive and not focusing on the negative. Like many who battle a chronic illness so many days are spent with a smile on the outside while you’re suffering on the inside. Being a new mom is an adjustment in itself. Being a new mom, while healing from childbirth as your body morphs back to “normalcy” coupled with Crohn’s making a vengeance is a challenge. A challenge that I know I’m not alone in facing. If there’s one distraction or one reason to get up each day with a will to fight and be brave…it’s looking into the eyes of my son and knowing he counts on me for his existence. One day he’ll know how much I count on him, too.

Living life with a chronic illness has its fair share of challenges—coupled with pregnancy, life gets even more complicated and fragile. Every decision you make to handle your disease process not only impacts your own well-being, but also your child’s.

During my pregnancy I noticed how common it was for people to ask questions regarding Crohn’s disease and having children, whether it was online or in person. Questions such as—can you get pregnant? Should you stay on your medicine? Should you deliver vaginally or have a c-section? Now that I’m a mom and my first pregnancy is behind me—I thought it would be helpful to reflect on some of the difficult decisions and experiences that come along with bringing a life into this world.

Here are my responses to the most commonly asked questions.

Can you and should you try to get pregnant?

The answer to this is YES! Just like with most things in life—timing is everything. Women with ulcerative colitis or Crohn’s disease that’s in remission can become pregnant just as easily as other women of the same age. However, if your IBD is active, you may have more difficulty getting pregnant. The key is getting pregnant when your symptoms are at bay and your disease is calm. That way you have a better likelihood of carrying over that remission throughout pregnancy. Luckily, my husband and I started trying for a family 10 months after my bowel resection surgery. I was feeling great and my disease was nonexistent during my entire pregnancy.

To stay on medication…or not to stay on medication.

This can be an emotional decision (especially if you’re feeling well) and one that you must discuss with your doctor(s). After my surgery in August 2015, I felt invincible. I had been taken off all medications for the first time in ten years to allow my body to heal. This newfound freedom made me believe that I could always cruise through life without needing to pop pills each evening or give myself injections. That November, during an appointment with my GI, I was told that would never be the case and that I’d be playing Russian roulette with my health. I’ll always remember being told that I had a “severe and aggressive form of Crohn’s” and that I would need to start up my Humira injections and add additional medications immediately, or else there was a big risk of my disease flares returning within a few years. I remember the tears flowing and how it felt like a punch to the stomach. As difficult as it was to put myself back on medication knowing that I wanted to start a family in seven months, following the doctor’s orders ended up being the best thing for me.

Having clear communication with your doctor is imperative. My GI put me on a prescription prenatal vitamin and folic acid to prepare me for pregnancy. I started back on Humira in November 2015 and haven’t stopped giving myself the injections since. Was it scary at times to inject myself with a medication when my baby bump was prominent and I could feel my son kicking? Yes. It was very emotional—but, it gave me peace of mind to know that this medication was preventing a major flare that could complicate Reid’s birth and cause pre-term labor. Every doctor has a different opinion on this—some say to get off biologics the final trimester, others say to stay on throughout. My OB, high risk OB and GI all agreed it was important for me to stay on Humira and Lialda from start to finish so that everything with my Crohn’s was managed properly.

Will I pass Crohn’s disease on to my children?

According to many health studies, there is a 4-10% chance of passing IBD on to your child if one parent is an IBD sufferer. This increases significantly if both parents suffer with IBD (up to 30%), plus if other members of the family are also sufferers. I personally, would not let your diagnosis hold you back from having a family. While you hope and pray your offspring don’t end up with Crohn’s or ulcerative colitis, what better person to advocate for them…than a parent who lives it–and gets it.

Should you deliver vaginally or get a c-section?

Once you find out you’re pregnant you’ll want to make sure you get a team of doctors in place—an OB, a high risk OB and your GI. Each case and situation is different and both types of deliveries are possible. I know women with IBD who have delivered both ways. The key indicator is where your disease is located. If it’s in the perianal region or if you’re apt to fistulas, you’re a candidate for a scheduled c-section.

The next is your size—my first appointment with the high risk doctor I was told it would be difficult for me to deliver a baby larger than seven pounds due to the size of my pelvis. After hearing that at 8 weeks pregnant, I felt pretty confident I would end up with a c-section.

Just like any pregnant woman—if the baby is breech, if you have placenta previa, etc…the decision is a clear one.

It ended up being a game time decision until my 39^th week. The doctors kept a close eye on me and once Reid showed no sign of coming on his own, we decided to schedule a c-section. The entire experience was extremely positive and I’m so grateful everything went smoothly for us both. Lucky for me—the incision from the c-section was able to be the same as my incision from my resection, I didn’t have any adhesions and the scar tissue from my previous abdominal surgery was nearly non-existent.

Becoming a mother is emotional and overwhelming—you’ll receive advice from anyone you’re willing to listen to. Take it all in stride and remind yourself that no matter how your baby gets here—whether you have a natural birth without medicine or a c-section, if you breastfeed or if you don’t…it’s your life, your journey and your family. Do what feels right in your heart and what you are most comfortable with. After nearly 12 years of battling Crohn’s, it’s truly remarkable to go through a pregnancy, bring a life into this world and see all that your body is capable of… despite the hardships its endured along the way. Have faith in your medical team and once that baby is in your arms and you lock eyes that first unbelievable moment—it will all be worth it.

It’s been an unforgettable week—on Wednesday, March 29 Reid Robert made his grand entrance into the world. As any parent can relate to, everything from the delivery to heading home for the first time, is an unbelievable whirlwind of excitement and emotion.

As a woman with Crohn’s disease I’ve encountered many people—both in person and complete strangers on social media who wonder if pregnancy is something that’s feasible, safe and possible. I hope hearing my story and seeing my son gives you the added hope to know that it is possible. Just as Crohn’s presents itself differently in everyone, the same goes for every pregnancy.  Trust in your team of doctors and have faith in your strength and ability to navigate the unknown.

Here are Reid’s stats:

Born March 29 at 11:12 a.m.

7 pounds 2 ounces

20 inches

In this short time, Reid has already given me newfound inspiration to be strong no matter what health battles come my way. Witnessing the miracle of his life and soaking in his snuggles each day has been a dream come true.

We just got home from the hospital yesterday—as a first time parent it’s a big adjustment, and we’re soaking in every minute! Stay tuned to the blog next Monday for tips regarding Crohn’s and pregnancy. In the meantime, if you have any questions or topics you’d like me to cover email lightscameracrohns@gmail.com.