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.

Since before I found out I was pregnant in July I’ve heard that while pregnancy can be the best “medicine” for Crohn’s disease and many autoimmune diseases, it’s after the baby is here when problems are more apt to strike. At more than 39 weeks pregnant—what once felt like a worry for the future is quickly becoming a reality for right now. Will I go from the blissfulness feeling of being symptom-free, to ending up in a hospital bed tethered to IV drugs within weeks of delivering my miracle?!

Recently I received comments from readers saying everything from “I had a perfect pregnancy and then the worst flare of my life a week after delivering”…to “I have triplets and two out of three have Crohn’s.” I love hearing feedback and the whole point of this blog is to get the conversation going in the Crohn’s community and to serve as an advocate and voice for those who suffer in silence….but, I’d be lying if I said those comments haven’t stuck with me.

Crohn’s and pregnancy can be thought of as “the rule of thirds.” One third of women will get better, one third will stay the same and one third will worsen. I feel SO fortunate to have been in remission—even if it’s only for a short time. The biological mechanism of this finding has yet to be fully explained, but several studies have suggested that the immune disparity between mother and fetus might play a role in immune regulation, thereby altering immune function and pathology.

Every single doctor—from my regular OB to my GI has warned me that 2-4 months postpartum is when problems are most likely to arise. It’s thought that the hormone progesterone helps mask symptoms, slow down digestion and calm the illness. When the cord is cut and you lose those hormones your body crashes back to “normalcy”—and that’s when the disease tends to creep back up. This is why I’ve been kept on all my medication—from start to finish of my pregnancy. Much to my dismay—it did give me peace of mind to know I was keeping myself healthy, to ensure I could safely bring another life into this world.

As I prepare for delivery I can’t help but think what life with my disease will be like once I am no longer pregnant. It’s one thing to lay in a ball on the couch reeling in pain when you only need to care about yourself. I fear what it will be like if symptoms strike and I’m home alone with my baby, unable to take a break or get relief because my priority will no longer be taking care of myself, but rather my son.

There is a hopeful study that shows pregnancy may protect against future flare-ups and may reduce the need for surgery, thanks to the hormone Relaxin. Relaxin is the hormone that prevents the uterus from contracting prematurely; it’s also thought to prevent the future formation of scar tissue, which frequently causes Crohn’s disease patients to require surgery.

Heading to the ER and not knowing when you’re returning home is much different when it’s just you and your significant other—it’s a whole different ball game when there’s a child depending on you at home. It pains me to think about missing my little baby as I lay in a hospital bed. I’m hoping I don’t have to go through that experience for awhile. I can only imagine how much of a burden I will feel like leaving my husband and family to take care of everything while I’m unable to provide a helping a hand. I know it’s inevitable—but, hope it’s not for a long time.

The stress of being a new parent, the lack of sleep and all the change sounds like a recipe for disaster when it comes to Crohn’s…change is oftentimes the culprit. All I can do now is thank God for providing me with a pregnancy that’s been picture perfect in every way and find confidence in knowing that I’ve always risen above everything that’s come my way disease-wise over the last 11.5 years. I can’t think of a better reason to fight for the feel good days—then getting to live my life at home with my husband and my son.

 

Thanks to my brother, Peter, for his guest post this week about what it means to watch your sister who’s battled a chronic illness for nearly 12 years…become a mom:

It is common for people to imagine being a spouse or parent. This desire is understandable and probably dynamic, fluctuates as one ages without marriage or child. I have not been married and have no offspring, and am nearing my 33rd birthday, so I understand the desire, mostly, as it pertains to me. Most of my friends and family are in committed relationships and babies have followed. I pray that they find inexplicable joy in their relationships and serious purpose in their responsibilities.

With all this, though, I wonder how we should think of the journey. Loving is serious because it’s the most important thing we do and the most challenging. Often parents will say, “My life changed when I became a parent,” or perhaps, “You don’t know love until you’ve given yourself, wholly and unconditionally, to another,” and while I find substance here I also find shortsightedness; for, of course, a parent’s world will continue to change as their child grows and giving oneself to another is an investment or journey, not an immediate payoff or arrival.

It wasn’t long ago when my sister became a bride. Like many young girls, Natalie dreamed of her wedding day, surrounded by love and united by a sacred promise; she found Bobby and I gained a brother. As I write this, their first child and my first nephew will soon arrive. I am proud of Natalie for many reasons, especially for her commitment to helping others by sharing her story of medical suffering. When diagnosed at age 21 with Crohn’s disease, she was disheartened and baffled; to our knowledge, no person in our bloodline had the disease and we didn’t know what to expect. She was also very young and had dreams to pursue. She had surgery in the summer of 2015 to remove ten years of sickness from her body. One year later, she got married and became pregnant. Many months into her pregnancy I asked her if she felt any Crohn’s pain; she said no, in fact, the baby heals and relaxes her. It will be wonderful when she and Bobby tell him that.

I stood on the altar next to Bobby when my dad walked Natalie down the aisle. The scene was very symbolic and purposeful. This is what I’ve learned by witnessing their love:

1. Determine what is essential

Desires can and often do change, but the serious type keep coming back and nourish our souls. What is essential for you? Which dreams need loving attention and a vision? Who can help?

2. Keep making progress

Never relinquish that which is essential to your being. If you get stuck in place, do some thinking and feeling; if you get knocked down, get back up and celebrate; if your path is wrong, turn around and venture back to the right path and trust your decisions.

3. There is support

Do not journey alone for too long. It can be healthy to have alone time, but life is relational and meant to be shared with others. Whether you are battling a sickness or loneliness, know that you are deserving of love and support. Sometimes you need to find the love and support, other times it will find you. We must be compassionate enough to support others and humble enough to depend on others.

4. Life is dynamic

Change is constant and we need to embrace this. Our personal and professional roles evolve, people will come and go (this could be unfortunate), and we will have opportunity to redefine purpose. Let the past go, but keep the meaningful chapters for reflection and growth.

My cousins have had many children and it is magical to experience life with them. I want to be active in their lives and not just a family member they see at parties. Some are near and others far, but regardless of distance, I try to make the most of our time together and to learn of their development.

I wonder how Natalie and Bobby’s son will change me. I imagine it feeling a bit different, compared to my cousins, but the essential desire for active involvement will remain. I will be in St. Louis when he is born and by his side when he crawls, walks, talks, and learns about stories. I can imagine writing stories for him and taking him to Blackhawks games.

I will also tell him stories about Natalie and Bobby, as much as I know, and that he changes my world and I love him.

 

 

 

 

 

 

To my sweet son,

It’s hard to believe you could arrive any moment now—we are so excited and anxious to see your face and hold you in our arms. You’ve been a miracle since the moment you were created and words don’t do justice for how special you are to us already.

Feeling all your kicks and pokes and being on this journey with you has changed my perspective on life. I love knowing this is just the beginning and that you’ll continue to open my eyes about this world and always teach me so much. I find myself crying tears of joy anytime I hear certain songs or start thinking about how grateful I am to be at this point. I’ve waited my whole life for you.

For more than 11 years I’ve battled a disease that doesn’t always make me feel the best. It’s scary at times and puts me through a lot of pain and worry. You have been the best medicine for me—silencing my symptoms and making me feel like superwoman. You’ve shown me that everything leading up to this point has prepared me and given me the strength I’ll need to bring you into this world.

As hard as it is—I want you to know there will be days when mommy will be in pain on the couch, unable to play with you. There will be days I’ll be holed up in the bathroom—and may need you to be patient. Unfortunately, there will be days and nights where I may need to be away from you as I’m in the hospital. There will be times when you see mommy take medicine and give myself shots. Anytime I cry or seem like I am hurting—know that you and your dad are my reason to fight and you are my reason to overcome the tough days. No matter how scary it may be—mommy will always overcome and will always be there for you.

I will protect you and watch over you—keeping an extra close eye on your health to make sure you aren’t showing any signs of having Crohn’s. And if you do grow up and receive the same diagnosis—know that mommy will be your biggest cheerleader and advocate. As much as it will break my heart to know what you will endure, I will be able to empathize with you and know how to deal with what you’re going through. I will do everything in my power to calm your fears and navigate the unknown. I hope and pray we never have to share that bond together, but know if those are the cards you are dealt that mama has your back more than you know.

Until we meet—know that you’ve answered so many prayers and are loved beyond measure by so many people. I will forever be captivated by your existence. Thank you for being my ‘healing hands where it used to hurt’ and for showing me that despite all the uncertainty life brings that there will always be one constant—that you will always be our priority, our dream come true and the love of our lives.

See you soon,

Mommy

Photo courtesy: J. Elizabeth Photography

 

 

 

 

 

It always fascinates me how this blog has enabled me to connect with people across the world who fight the IBD battle, day in and day out. Last week—I received an email from Stephanie Horowitz, an actress in New York, gearing up to take the stage later this month to perform a cabaret show about life with Crohn’s. She randomly came across my blog and decided to reach out to me. This week—it’s her inspirational story that I’d like to share.

A Guest Post by: Stephanie Horowitz

“There’s just one life, it’s mine.

What comes next? I don’t know.

I’ve got confetti I’m ready to throw.

I’m gonna laugh all of my laughter,

Before I go.”

Those insightful lyrics are by Allan Sherman and they are featured prominently in my upcoming one woman show Flare: A Crohn’s Cabaret. 

Hello! My name is Stephanie Horowitz and I am a performer living with Crohn’s disease.  February 1st, 2015, Super Bowl Sunday, and the day we were supposed to move to our new apartment, was a bad day for the Seattle Seahawks and for me. The stress of moving and lack of sleep from performing and packing… proved to be the ‘perfect storm. That’s the moment I experienced my first flare of Crohn’s. I had recently (reluctantly) started Humira and it seemed to be working well, until that day.

What resulted was a solid year of flares mostly triggered by stress. Things like adjusting to a new town, problems relocating a business, losing a relative, people around me losing jobs, everything snowballed into a great deal of stress. I tried multiple medications (both traditional and non-traditional treatments), and underwent a colonoscopy. It seemed nothing could make a meaningful difference. At this point, it was difficult for me to eat and I dropped about 65 pounds. My body and quality of life were deteriorating right before my eyes. That’s when my GI doctor decided to put me on Prednisone.

There is always a love/hate reaction when I hear people talk about this. If you don’t know about Prednisone, it is a steroid that will quickly make you feel better… but can have devastating side effects if taken for a long time. For me, this time, thankfully, it was mostly good. I got my appetite back. I was eating again and loving it. Despite some acne, I was me again, but me at volume ten! It was sort of fun for me, though probably pretty annoying for everyone else!

During this time I felt energetic and fiercely creative.  I usually have a hard time shutting my brain up, but now it was on overdrive. One of the side effects of Prednisone is insomnia. I would shoot up in bed at in the middle of the night and think “This weird thing that happened to me today reminds me of this song!” Or “This is how I felt before and it reminds me of this song.”  I wrote these ideas down. I didn’t know why. Slowly when I had six or seven ideas I thought to myself… “So…I guess we are doing a cabaret show?” It was funny. It was sad. It was punchy. I knew damn well I was too sick to perform it, but something told me, “If I build it, they will come.”

I knew that this ‘show’ and these ideas were being given to me for a reason and I needed to honor it. I had never dreamed of doing my own show, just me, but I wanted to use it as a vehicle to process what was happening to me and to help people who might be going through the same thing.

I decided to contact a wonderful pianist I had worked with on prior cabaret projects.  I told him I had something that might be a show and I had no idea if it was any good or when, if ever, I would be able to perform it, but I wanted him to be a part of it.  He was game so I took my steroid-filled self to the city for a coaching session with him.

I told him the story of what was happening and I sang him the songs.  He said “Yes, this is a show.  Let’s get it on the books!” I told him I could start rehearsing and see what happened.

Fast forward a few months, still on steroids, after yet another treatment failed. Then I started Remicade. The heavens open up!  The treatment works and I told myself the show must go on.

What’s it like to walk in my sparkly heels? Is it possible to take on the world from your bathroom? Find out in this delightfully inappropriate 60 minute romp entitled, “Flare: A Crohn’s Cabaret.”  The show is Saturday, March 25 at 7 p.m. at the The Duplex (a Piano Bar and Cabaret Theater in New York).

This show is a valentine to patients and caretakers alike—anyone who has Crohn’s, Colitis, or a chronic illness. The show will also speak to anyone who has struggled with their weight, anyone who is loved, anyone who likes to dance, meditate, or sing, or anyone who just likes a bawdy night of cabaret theatre.  You can buy your ticket at www.purplepass.com/Flare .  Use code IBD for a discount!

 

“Raise your hand if you’ve ever had an IV.”…
I nonchalantly look around the room and notice I’m one of two women in the newborn class at the hospital who raises her hand. Then, I start thinking…about how scary it would be for all the completely healthy people who’ve never stepped foot in a hospital as the patient, who’ve never had pain medication or surgery, who’ve never experienced a hospital stay with their husband. That’s when it hits—battling Crohn’s disease for more than 11 years has prepped me for this journey and given me confidence going into delivery.
Here are my top 10 reasons why:
10. Packing the hospital bag—So many people stress over what to bring and what they’ll need. Normally with a flare, I’m bent over in pain rushing to throw together loose odds and ends in a bag, on a whim, with no rhyme or reason. You know what you’ll actually use (comfy pjs without a waistband, a phone charger, face wipes that allow you to wash your face without getting up, your own shampoo, etc.)—and what you’ll never touch.
9. Dealing with frequent bathroom breaks—In the first and third trimester you constantly need to take bathroom breaks. As a Crohnie, you’re used to scoping out where the bathrooms are in public places and know what it’s like to be woken up in the middle of the night when you need to use the bathroom.
8. Your condition is not invisible—Once you start showing—complete strangers, friends and family alike treat you like you’re a VIP. Everyone wants to help you, hold doors for you, give their seat up for you, bend over for you, help you reach for items at the store, you name it. When you’re in pain or uncomfortable, there’s no need to suffer in silence because everyone loves helping out a preggo woman. Whereas when you’re struggling with Crohn’s symptoms you look healthy to bystanders and can cover up symptoms if you want to.
7. Stretchy pants—Forget the days of having to worry about your skinny jeans or that belted dress restricting your stomach and giving you stomach pains, living in stretchy maternity leggings and dresses for months on end is heavenly. I’m keeping those bad boys post-baby to wear when my Crohn’s acts up!
6. Handling diet restrictions—If you’ve encountered a Crohn’s flare you expect a nutritionist at the hospital or at your GI’s office to talk with you about what to avoid and what you can eat. You’re used to a list of foods (fruits, veggies, anything fried, caffeine, nuts, popcorn, etc.) that hang over your head as possible kick-starters for inflammation. I swear since my Crohn’s diagnosis if I even try to have movie theater popcorn, I get the same look from my family as I would if I asked for an amaretto stone sour while pregnant! When you find out you’re pregnant and need to refrain from sushi, large doses of caffeine, lunch meat, alcohol, unpasteurized cheeses, etc…it’s a walk in the park because you’re used to having willpower when it comes to refraining from certain foods and drinks, even if they are your favorite.
5. Living with pain and discomfort—The back, hip, and rib pain that comes along with pregnancy as your joints and ligaments loosen up from the relaxin hormone and prepare for childbirth is eerily similar to what it feels like to be on 40-60 mg. of prednisone. As someone with chronic illness you’re used to tough days and not feeling 100 percent.
4. Needles are no big deal—From IVs, to blood draws, giving yourself Humira injections, etc…you become desensitized to needles and don’t stress over it. While an epidural or spinal block sounds daunting—it’s just another shot to you. You know how it feels to get pain medication and how your body responds to certain drugs. For instance, I know I’m not a fan of Morphine, and will ask for some Dilaudid and Zofran after my C-section if that’s the route I end up going.
3. Previous abdominal surgery—According to the Crohn’s and Colitis Foundation, 75 percent of Crohn’s patients will require surgery at some point in their life. If you’re like me—you’ve had a bowel resection and already have the “C-section scar,” you know what it’s like to heal from abdominal surgery. My doctors told me healing from a C-section will be much easier than the removal of 18 inches of intestine, along with my appendix. It’s sounding like I’ll be having a scheduled C-section at 39 weeks. If I hadn’t gone through my surgery in 2015, I feel as though I’d be very anxious and apprehensive about going under the knife to bring my baby into the world.
2. Comfort with your caretakers—Between multiple hospital stays with my husband by my side, along with my family and my in-laws, I know who I can count on and how those closest to me respond during health situations. During the newborn classes the instructor mentioned how many husbands have to stand in the corner of the room during delivery or can’t witness a C-section, many fainting or passing out…I’m comforted by the fact that my husband is my rock and his support, compassion and patience always gets me through everything. I know he’ll be holding my hand and keeping my eye on the prize til our son is born.
1. Going to the hospital for good—This is the best part of all!! Whether you were just diagnosed or if you’re a chronic illness vet, this is one of the few times in life when going to the hospital is for a GREAT reason. Whatever pain you endure is temporary and whatever recovery is needed is all a result of bringing a LIFE into this world—a child that you get to love and adore, a new member of your family. This is one of the few times your pain has purpose.

Photo Courtesy: J. Elizabeth Photography

I recently came across an article on The Mighty, entitled “What it’s like to be diagnosed with a chronic illness in your 20s.” I was immediately drawn to the story since I too was diagnosed with Crohn’s disease when I was 21-years-old. The author, Catherine Emerson, who is 21, inspired me to reflect on that time in my life and also think about how my mindset and identity has changed over the last 11.5 years. It’s my hope that my words will bring people in her shoes solace in knowing that the best is yet to come.

When you’re a 21-year-old good health is expected. Between work, school and socializing you oftentimes feel invincible to anything going wrong. But when the tides suddenly change and you’re blindsided and told you have a lifelong illness, it can feel like you’re drowning in a state of unknown.

As if the prednisone giving you insomnia wasn’t enough to get your first flare up in check; that initial diagnosis leaves you up all night, gasping for air. There is so much fear and so much helplessness. When you’re told you have Crohn’s at age 21 it feels like that’s your newfound identity. “Hi, I’m Natalie. I have Crohn’s.” You begin to think and feel that everyone in your inner circle labels you that way and looks at you with sympathetic eyes as you take 22 pills a day to get by.

It’s difficult to go from being a completely healthy person… to your family staring at you during dinner—wondering if you should be eating that, or sighing with sadness when you run to the bathroom mid-meal, constantly asking you “how are you feeling?” It got to the point where I had to tell people to stop asking me that question.

During the time of my diagnosis I was actively searching for my first TV job—I went from being excited about reporting on camera to doing anything to dodge the mirror. I have very few pictures of myself from this time in my life because I felt so hideous and self-conscious. In the photo at the top of the article, I had been sick for weeks and struggled to attend a baseball game with my brother. I didn’t know what was wrong, for months I was unable to eat without pain and had fevers topping 104 degrees. The photos to the left are what months of steroids and medication caused post-diagnosis. While Crohn’s is an invisible illness for the most part—when you’re going through a flare, it begins to affect your outward appearance as well, whether it’s drastic weight loss when you’re too sick to eat anything other than liquids or weight gain and water retention from treatment. Finding that balance initially is so challenging.

In her article Catherine talks about how as a 21-year-old she was “excited by the prospect of fun and exciting experiences” and that when her health started to decline that her world was “completely shattered.” I can relate and I know the feeling—but, to all the Catherines out there—who’ve been told they have a chronic illness in their 20s, I’m here to tell you that while there will always be difficult days along the way that may break you temporarily, you will learn so much about yourself and so much about your body that it will be an ongoing experience that empowers you and only makes you stronger.

Now—as a 33 year old, married woman who is expecting her first child in less than six weeks—I can tell you firsthand—there are people out there who will love you unconditionally and embrace you for who you are. Your future is bright and you can experience all of life’s exciting milestones like the rest of society. Your disease will enable you to see people’s true colors and character in a way you never knew possible. It actually makes finding a spouse easier because you can see who has true heart. Your perspective about life and challenges along the way will shift. One day you’ll wake up and feel like despite the never-ending worry and wonder that looms with Crohn’s—you’ll come to a place where you feel confident that you are in control. Rather than your identity—your disease is a part of what makes you unique.

What felt like a scarlet letter in my 20s, now feels like a badge of honor in my 30s. Instead of shying away from admitting I have an illness, I’ve found it more helpful to be vocal and let others know that part of my life story. Living with Crohn’s doesn’t make you weak, it makes you tough—mentally, emotionally and physically.

Here are 5 tips for overcoming the initial shock of a chronic illness diagnosis.

1. Be patient with yourself and those around you.

Give yourself time to heal and process the news. Don’t blame anyone or anything for your diagnosis. Instead, tell yourself that God gives his toughest lessons to his greatest teachers.

2. Don’t suppress your emotions.

If you need to cry, let it out. No apologies needed. Writing in a journal is cathartic. If someone is negative or makes you feel less of person because of your disease, remove them from your inner circle. Focus on the positive people and experiences in your life.

3. Network and find people who are living your same reality.

The most helpful tool you’ll find is socializing, whether it’s in person or online with those who live with your same disease. As supportive as friends and family want to be—there is no way for someone who doesn’t have Crohn’s to truly grasp what it feels like. Use those friendships to lift your spirits; you’ll feel an instant connection with those who can relate.

4. Celebrate the small victories.

While the diagnosis will stop you in your tracks and change your daily life—whether it’s diet, sleep or exercise—give yourself credit for the milestones, even if they seem minuscule. When I was first diagnosed I went eight months without eating a fresh fruit or vegetable. To this day—I can still remember having a salad for the first time—and crying in the middle of a restaurant with my family… because I was so happy.

5. Don’t focus on the long term—focus on the now.

Thinking about having a disease for the rest of your life is overwhelming. There’s no telling what trials and tribulations are ahead, but in reality—that’s the case for everyone. Focus on each day and don’t let yourself get caught up in the worry of when your next flare up will be. You’ve encountered one before and overcome and you’ll do it again.

Catherine closes out her article by saying, “Please think before you make comments, and be understanding of the demons people like me battle every day. I am learning to live and love myself again, but it will take time and a hell of a lot of support.”

For those who do not have a chronic illness—please take Catherine’s words to heart and know that even on “feel good” days, there is a constant inner dialogue going on in the minds of Crohn’s patients. It starts the minute you wake up—and doesn’t stop. The best thing you can do is show compassion to all, because you never know what battles a person is fighting from within—if you only judge from the outside.

In the spirit of Valentine’s Day I thought it would be fitting to share my gratitude for the man who I’m lucky to call my husband and best friend. The man who’s stood by my side through so much—whether it was holding my hand for days on end as I laid in a hospital bed fighting a flare up…or stepping up throughout my pregnancy when I am too tired to take my socks off. Caregivers have a tough job. Of course it’s difficult to be the patient or the “sick one”…but, I think it’s the supporting cast who really deserve the credit.

As someone who’s battled chronic illness for nearly 12 years there are not enough words, cards or gestures to truly capture my heartfelt appreciation. I told my husband Bobby when we started dating that I had Crohn’s so that he’d have an out before he got too invested in getting to know me. Rather than run for the hills—he showed compassion and to this day constantly assures me that despite my struggles, I’m still a healthy person overall.

It’s the moments when I’ve been at my weakest that now shine as some of our best times as a couple. I can envision him resting his head on my bed in the ER, bent over in a chair for hours into the night…as I go through tests…never letting go of my hand or complaining. I think about when I’m NPO (not allowed anything by mouth) because of procedures and how he gently dipped sponges into a cup of water to wipe on my gums when I was thirsty. When I have trouble falling asleep now because of discomfort with the pregnancy I drift off by counting down from 200…something he taught me while fighting a flare in the middle of a dark hospital room years ago.

Now, as we gear up for the biggest adventure of our lives—becoming parents(!!!)… I’m comforted by  the fact that going into labor—whether I deliver vaginally or by c-section isn’t going to be so scary, because I’ll have my rock star teammate by my side through it all. This isn’t our first…and surely won’t be our last rodeo in the hospital. While I’m still anxious and nervous about delivery, it’s so comforting to know how he responds in medical situations. Bobby knows how to calm me down, he knows what to say, how to act, what to pack, the questions to ask, you name it. When he looks in my eyes when I’m going through something painful—we’re able to communicate in a way that makes it all ok.

I’ve said it before and I’ll say it again—your support network, your caregivers… are your lifeline. Make sure you express your gratitude and realize how lucky you are to have them by your side. There is no reason you should ever feel like you need to take on anything alone. Whether you’re the patient or not—help is out there for you as you navigate the unknown. The Crohn’s and Colitis Foundation of America (CCFA) offers an online support network for caretakers, too! Click here to learn more.

Bobby—you’re an amazing husband, partner in crime and best friend…I can’t even begin to imagine what a phenomenal dad you are going to be. It brings me such joy to know that our little guy will grow up with YOU as a role model. As we get into the 34^th week of pregnancy and get ready for our lives to change forever, I’m so glad I have you by my side for each and every experience. Having a man who “gets it” and never makes me feel guilty for my condition, gives me the confidence to know that while Crohn’s can be debilitating, it’s not going to break my spirit…but only make US, stronger.

Wishing everyone a super sweet Valentine’s Day and  a life shared with someone as wonderful as my Bobby! XO

Life is a constant roller coaster of highs and lows, unknowns and welcome surprises. We all come across experiences that shape us, struggles that challenge us and moments that define us. We meet people who completely change our world and our perspectives. These people and these moments are important to keep close in thought. When you’re battling something tough they can serve as great sources of inspiration to provide clarity and the knowingness that no matter how awful something may seem…it too shall pass.

Living with a chronic illness has taught me that while life is far from butterflies and rainbows, it’s a beautiful compilation of encounters that gear us up to take on whatever may come our way. Whether it’s fighting a flare up or grieving the death of a loved one, we are constantly reminded of how quickly our current state of affairs can change.

All the recent political jibber jabber, harsh words and hate plastered on social media and making headlines is extremely disheartening and disturbing. While we’re all entitled to our opinions and to say what’s on our minds—to me, it’s more important to focus on being a good person, celebrating the blessings in my life and doing all I can to make a difference in the lives of others. Physically being a good person will do a lot more good in this world than spouting off on a Facebook status. If each person who’s taken the time to craft a social media post about their political opinion used that energy to volunteer or even connect with someone face to face or on the phone, think about how much more productive that would be.

While your current situation may feel grim—think of how many people would give anything to live a day in your shoes. Before you open your mouth to speak or act…pause and think.

Think of the thousands of people waiting for the gift of life through organ donation… staring at the clock from their hospital beds…wondering when that perfect stranger will give them a second chance. Think about that the brave babies fighting for their lives in NICUs across the country and their parents who are wondering if they’ll ever get to see their child grow up. Think about all the people who wake up and receive chemo so they can fight another day. The list goes on and on.

When you’re the person who’s going through something difficult—rather than thinking ‘woe is me’ have faith and confidence in yourself and when you look in the mirror try and find the strength to smile. If life was perfect and none of us ever faced any sort of trials or tribulations—the best, most beautiful moments would never shine as bright.

Rather than suffer in silence, share your greatest fears and struggles with those close to you. Communicating and making people aware of your pain will help you, as you won’t have to take on your struggles alone. It’s cathartic to be open—support networks (friends and family) ebb and flow… sometimes you need the boost…other times you need to give it. Depend on that, trust in it and utilize it.

I write this article as I prepare to go visit a baby in the hospital who has completely altered my perspective on what it means to be strong. Baby Jade has spent every day of her life—nearly a year (she turns one Feb. 25)—within four walls of a hospital room. Witnessing her steadfast bravery after each surgery, procedure, test and setback…and that of her parents, has shown me just how fragile life is.  Despite the hardships and unfathomable scares, Jade and her parents remain focused on the future and determined to one day go home as a family. As a soon to be mom, I can’t begin to grasp what it’s like to be in their shoes, but they constantly show me and inspire me to take on all of life’s setbacks, challenges and disappointments with a positive attitude and an unwavering faith.

My challenge to you–embrace the dark days… as it makes the sun-filled ones even more promising and brighter.