As a new mom with Crohn’s, there are countless stories of postpartum flares that typically rear their ugly head around 2-3 months postpartum. You hear it from your doctors and from those on social media. Today marks two months since we welcomed our son Reid to the world. Navigating these first weeks as a new parent with a chronic illness has been interesting to say the least. 

Like all flare ups—they tend to happen when you least expect  it, coming out of nowhere to remind you that the disease is still very much a part of who you are. This time of the disease process is unique in that you are almost anticipating and wondering when symptoms are going to strike.

Out of the last eight weeks, I’d say I’ve had about 10-15 “bad” days. Meaning I felt that unwelcome gnawing pain or needed to take pain medication. While it hasn’t been ideal at times, I know it could be a lot worse. My symptoms are certainly not enough to need a hospitalization at this point. I’m hoping I can make it through these “postpartum” months and dodge that bullet.

Reid has offered up amazing inspiration to me when I give myself my Humira injections. For more than eight years, I’ve stared at something on the wall or a photo of a person who inspires me to “get in the zone” when the needle is in my leg. Now, I have my husband stand in front of me holding Reid and I stare into the eyes of my sweet little man. Looking at him eases my pain and is a reminder that I have to stay healthy and be strong so I don’t have to take a break in a hospital bed without him by my side.

The past week there have been countless occasions where I’ve been in the middle of feeding him and felt the urgent need to run to the bathroom. It’s been hard and it’s stressful. When I’m home alone and there’s no one around to swoop him up, I do all I can to muster up the strength to hold it. It’s not easy. Sometimes I don’t even know if I’m going to make it in time to the bathroom. Sure, I could interrupt his feeding and put him down…but, that’s easier said than done. My priority is to keep him happy and content.

Part of living with Crohn’s is dealing with extreme fatigue. Not the kind of tired where you didn’t get enough zzzs the night before. I’m talking about an exhaustion that consumes your whole body. It’s very similar to how it feels that first trimester of pregnancy, when there are days your legs feel like jello and you don’t know how you’re going to make it through a work day upright. The lack of sleep associated with having a newborn and battling Crohn’s can be downright difficult. I’ve combatted that with coffee… which is probably part of the reason why I’m having some “urgency” issues.

Like all change—it takes time, learning and patience. Being a mom and enduring pregnancy and childbirth makes you feel like somewhat of a superwoman. You look at this perfect little human that you created within yourself. So, while there may be some “bad” days along the way, they are completely overshadowed by the incredible ones. The magical moments when your baby smiles at you, stares up at you in the middle of the night while he eats or calms once he’s placed in your arms. While the Crohn’s symptoms are a reminder that I’m not a “typical” mom, they also remind me that despite my medical ailments, I was still able to bring a life into this world…and nothing will ever change that.

World IBD (Inflammatory Bowel Disease) Day was on May 19—it’s a day when patients and caregivers reflect on their health battles with Crohn’s and ulcerative colitis. It’s a day to educate and spread awareness. It’s a day to pause and think about how the disease has impacted your life. Just like many people, I too shared a post on Instagram that day. Without thinking, I instantly went to my camera roll and thumbed through to find pictures of myself in the hospital.

All the posts I saw that day were much like mine—photos of tough times coupled with inspiring and thought provoking words. One post in particular really stuck out to me. I randomly came across an Instagram account for Laura Scaviola. On World IBD day she shared three pictures of herself smiling from ear to ear, looking strong and healthy as a horse. At first glance, I never would have thought she battled ulcerative colitis.  The words that accompanied these photos struck a chord with me:

@mangiapaleo “Can you guess which picture was taken when my disease was flaring? Spoiler alert: ALL OF THEM. Inflammatory Bowel Disease (IBD) is often invisible. Sure I could show photos of me at my weakest, looking skinny in a hospital gown and needles in my arms. I have those photos, too. But the point here is the general public knows little of our struggles because they can not see them. Pictures don’t tell the true story and people with ulcerative colitis don’t always look or act sick. May 19 is World IBD Day—the perfect time to make our disease visible.”

This mindset and perspective really hit home. It made me stop and think of all the social events and work days I put a smile on my face while I was crying inside. It’s a fragile place to be—on one hand you don’t want to complain and come off like a sickly person. On the other hand, if you suffer in silence you create your own prison. No one can help you if you don’t speak up about what you’re feeling.

Here are some photos of me—that take me back and remind me of times I held my head high and kept my illness invisible to others. Here’s a quick backstory to correspond with each.

 

Photo #1: Each year my Greek family hosts a huge New Year’s Day party. I spent the entire get together on the couch, in a ball… in horrific pain. I started a burst of prednisone that night. By the photo—Bobby and I just look like a couple sharing a moment in front of Christmas tree, enjoying the holidays.

 

Photo #2: I was training for a half marathon and had just completed a nine mile run. I felt fantastic. After my run, I drove from Springfield to St. Louis…and started feeling very sick. That night, I was hospitalized with a bowel obstruction.

Photo #3: Just a typical day on the news desk, but I remember having to loosen up the belt on my dress because my stomach was hurting so badly during the newscast.

Photo #4: What started as a fun night out watching the Cards play at Busch Stadium, resulted in us having to leave in the middle of the game due to my stabbing stomach pains. In this photo we had left the stadium and the only “cab” we could find was a guy on a bike with a carriage to take us to our car. I was in so much pain I couldn’t even walk to the car. Our smiles tell a whole different story.

 

 

 

Photo #5: The food tasting for our wedding was supposed to be such a fun experience. Yes, we loved trying out all the different entrees with our parents months before the wedding. But in between each course and taste test I was running to the bathroom in embarrassment. I cried in the stall as my mind frantically thought—how the hell am I am going to be able to eat at my wedding and get out of dress in time to use the bathroom? Lucky for me, I didn’t end up needing one bathroom break the day of my wedding.

 

 

 

 

Photo #6: This photo is from three weeks ago. Several of my close friends came to town for a surprise bachelorette party. While my friend opened gifts that all-too-familiar gnawing pain started…I knew we had a long night ahead. Rather than go home and miss out on quality time with my girls, I popped a Tylenol with codeine and powered through.

The moral of this story—while you may think those who battle IBD are weak or exaggerating their symptoms—think again. There’s a pretty good chance there are countless times when they too chose to stand tall and smile, despite the pain. This goes for any type of “invisible” illness, whether we’re talking about mental illness, diabetes, you name it…just because someone isn’t in a hospital bed or “looking sick” doesn’t mean they are free of health issues and concerns.

From this point forward on World IBD Day and all the days in between, thanks to Laura, I too will choose to share different pictures of myself when trying to educate and inform others about life with Crohn’s.

Close your eyes for a moment and think back to what life was like at age 13. Think about the highs, the lows and everything in between. Now imagine going through all that while battling an invisible illness that your peers in school, friends, family and teachers may not know about.

I recently received an email from a dad with a teenager who battles Crohn’s. They wish to remain anonymous—but their story is easy to relate to.

He was diagnosed with Crohn’s disease when he was 8 years old. Now, as a teenager he’s no stranger to how debilitating and exhausting the illness can be. Sadly, the disease has robbed him of the healthy and carefree childhood most kids are afforded.

“Children are God’s blessing, but we hurt when they hurt. I’m an ex Green Beret, but he’s the bravest, and toughest person I’ve ever met. My mom had autoimmune disease, so I thought I knew this drill, but I was just so stunned by this. I could never have imagined the pain and embarrassment and issues my son faces. But, he’s usually laughing and smiling,” said the father.

As an eighth grader, between dealing with side effects of medication and the need for frequent bathroom breaks, there’s a real struggle to find ‘normalcy’ in the classroom. He said it’s heartbreaking to see his son with a genius IQ struggle to be a part of school and extracurricular activities.

“This school year has been difficult. So much change, so much worry. One teacher was reporting him as tardy unexcused even when he had to run to the bathroom, and he was suddenly threatened with suspension. Imagine cleaning up after a bout, trying to knock down the nausea and pain, and to make it on time to school. It’s very difficult to make school practices, for him to ride a bus, and to endure the social issues (bathroom issues) in today’s zero tolerance school world. We found success in getting a medical letter in his file and working with the school front office. However, schools are just not set up to deal with this well.”

I’m told teachers and students seem to “get it” when prednisone causes his cheeks to become puffy or when he drops close to 20 pounds from his inability to eat and get nourishment, but what’s a person to do when they’re in remission and there are no physical signs that set you apart from the rest? THIS is when communicating with those around you is most important, because unless you speak up, educate others and make sure your voice is heard…you’ll be forced to suffer in silence.

As a new mom who has Crohn’s—here are five tips for families with kids battling IBD.

1. Share your story.

Rather than staying hush hush and worrying that people will think differently of you. Share your story with humor and positivity. Yes, everyone knows having a disease isn’t something to be taken lightly—but attitude is everything. If you come off honest and lighthearted, that’s how you will be received by others. Let those in your circle know when and how you were diagnosed and the challenges you face on a daily basis so it becomes clear that living with Crohn’s is not a walk in the park.

2. Educate the educators

At the beginning of the school year meet with teachers, the school nurse and the school psychologist to discuss setting up a 504 plan and explaining what your child endures on a daily basis. Since being diagnosed myself in 2005, I’ve found unless someone is a medical professional or has a family member or friend with Crohn’s, they have no idea what it is. Include the physical education teacher as there are days when the pain and fatigue may keep kids on the sidelines. You want an understanding in place, so your child isn’t reprimanded for no reason or stuck in an embarrassing situation.

3. Connect with other families who “get it.”

Reach out to your local CCFA chapter and find other local families who are going through the same journey as you are. There is nothing better than meeting those who understand what you are going through. There is a great network of people in the real world and the cyber world who are wanting to connect, share stories, discuss medications, etc. It’s reassuring and comforting to talk to someone about how their bowel resection surgery went or how Humira works for them as a management drug. Each year CCFA holds Camp Oasis around the country. The camp features counselors and kids who battle IBD. It’s the perfect way to see firsthand that you are not alone in your struggles as a youngster with the disease… and have fun at the same time!

4. Take time to be patient and listen.

IBD can be very isolating and daunting. It’s a big disease for little people to have to come to grips with. Instead of making them ‘feel sick’ by constantly asking them how they’re feeling and not allowing them to do certain activities or eat certain foods—let them spread their wings and try. Those with IBD quickly learn their limits. Be a motivator, rather than a hindrance. If your child says they are too sick to go to school, a family party or their soccer game—trust them and don’t question it. Chances are, they are doing all of that in pain many times without you even knowing it.

5. Learn from them.

While I can’t fathom what it would be like for my son to be diagnosed with Crohn’s, I can say that your little one who’s going up against a chronic disease with no cure is going to be wise beyond their years. Each set back and flare up will give your child a very mature perspective when it comes to not taking health for granted. As a parent, celebrate their strength. Commemorate their ‘diagnosis’ anniversary by doing something fun, rather than thinking of it as a terrible day in your family’s history. People with IBD (regardless of age) often feel a sense of guilt. That guilt stems from needing to be cared for (sometimes constantly), missing out on events and plans and the cost for receiving care and taking daily medication. Be mindful of your child’s strength, courage and resilience and recognize them for it.

Special thanks to this strong father and son for reaching out to me and inspiring this article. As a new mom, I can’t begin to imagine how difficult it is for all the IBD families out there. To those with other questions/concerns and story ideas, please email me at lightscameracrohns@gmail.com.

Being a new mom is a lot like navigating what life is like with a new diagnosis. It’s unchartered territory, you learn as you go…and there will be incredible high points and low points along the way. I had to laugh at myself the other day. The morning started with my newborn son, Reid, peeing in my mouth while I changed his diaper. For the most part my little guy is an absolute angel when it comes to eating every three to four hours and sleeping in between. But this day was different. I couldn’t get him to stop crying. He was inconsolable for hours. As I paced around the house doing a silly waltz and singing ridiculous lyrics to him on the fly, I had to pause and laugh at my appearance in the mirror. For a moment I felt unrecognizable to myself. While being a new mom is miraculous and the best gift—it’s a major adjustment, something all parents can attest to.

As the clock inched closer to the evening hours I realized I hadn’t eaten since breakfast. I desperately grabbed a leftover fortune cookie on the table from a night my girlfriends came over and brought dinner. The fortune read “Functioning superbly comes automatically to you.” I had to laugh. I kept the fortune as a reminder that no matter how difficult some days may be, whether it’s in the mom department or as a Crohn’s patient…it’s important to remember that we all have what it takes to overcome obstacles that come our way. Change in life is never easy—but attitude and finding the humor of it all are everything.

At this point the doorbell rang and I received a package from a friend in San Diego, a complete surprise and so thoughtful. When I texted her to say thank you, she wrote back and said… “One day at a time, some days one minute at a time.” Those words are so important. As a woman who battles chronic illness and is learning what it takes to be a mom…those words ring so true to me. If we all focus on what’s next and get consumed by fears and worries of the future, we’ll miss all the amazing moments along the way. It’s imperative to celebrate the mini victories—whether it’s having a feel good day or learning how to put your baby in the car seat and explore the outdoors on your own. Each day is a gift.

There are so many parallels between chronic illness and motherhood. Some days are going to be a breeze, while others challenge your patience and strength to the core. Take time to unwind and destress whenever possible and take advantage of the support around you. If friends or family members want to offer a helping hand to ease your burden don’t be afraid to take them up on it. There’s no telling what tomorrow will bring. Take advantage of today. Remember to breathe. Have faith that while there will be difficult and scary experiences, each will help you learn and grow.

I think back to myself at age 21, frail in the hospital bed, trying to come to terms with the fact that I had a disease that would be part of me for the rest of my life. In that moment—I had no idea what the future would hold. While the disease has tested me and given me immense amounts of pain, it’s also made me strong, resilient and brave.

Now, as a new mom—almost six weeks in, I look in the mirror and may not recognize myself without my hair and make-up done, wearing yesterday’s pj’s…but, I know in my heart my baby boy has already shown me how deeply you can love another human being. He’s shown me what it’s like to know another person’s survival depends completely on you and that you have the ability to shape a life…and a family…and that my friends, is magic.

A week ago a college friend who’s battled Crohn’s since she was 11 called to tell me her disease was spiraling out of control and that she’s getting started on a biologic—my heart immediately sank. My friend Mary McCarthy and I have been Crohnies since we met at Marquette University in 2005. At that time I did not have Crohn’s and I wasn’t aware Mary suffered from it. A few months passed and I was diagnosed. That’s when I found out she too dealt with the same chronic illness. This week, Mary shares her story of having IBD since 1995, and finding out decades later that not only will she be starting Humira injections…but, her parents have IBD as well.

I have had Crohn’s for most of my life, but I’ve dealt with it by taking medication and pretending I don’t have it.

However, I recently learned that my Crohn’s is severe. I am going to start Humira soon, and I expect the shots to serve as a constant reminder of the disease.

I have since turned to the Crohn’s online community for support and wanted to thank Natalie and other Lights Camera Crohn’s contributors for helping me.

I know Natalie from college, so she was the first person I called when I learned about my severe Crohn’s. Until now, I read this blog to hear about how Natalie was doing. When my disease took a turn for the worse, I started paying closer attention to posts like the one about giving yourself Humira. It wasn’t something I needed until it applied to me, but thank God there’s a place to connect with people who are suffering from the same illness.

Natalie told me about how she gives herself shots in her legs, and I immediately thought about this picture. Look at those hot legs! She looks great. I’ll be fine.

As I dug further into the blog, I also felt downright jealous of Stephanie Horowitz, an actress in NYC who put on a show called Flare: A Crohn’s Cabaret. What a humorous, artsy way of dealing with Crohn’s.

Stephanie’s post got me thinking about the endless possibilities to be part of the Crohn’s community.

For now, that means sharing my story and finding humor in having Crohn’s.

A few weeks ago, when I was waiting to have a colonoscopy, the nurse at the University of Chicago told me that she thought I was in college (God love her). I’m really 34, and I’ve had Crohn’s since I was 11, which means I have more than 20 years of stories.

As a kid, my mom used to take me to a pediatric specialist at the University of Chicago, where we would wait for an average of five hours in the waiting room. I would then be examined by several different medical students. They would huddle around me and eagerly ask the head doctor questions about my case.

Over time, I started to be a bit sassy with my visitors.

They would look at me with pity, and I would have none of it.

They would ask me about my diet, and I’d tell them I felt fine and would continue eating whatever I wanted.

They would ask me how my medications were working, and I would tell them with full confidence which ones were working and which weren’t.

I’m still very much the same way with my doctors, but I’ve learned to temper my attitude over time. My parents and I still laugh about it. I refuse to be “sick.” I always will.

Mind, body, family connections.

My dad was diagnosed with ulcerative colitis in his 50s, and last year, my mom was diagnosed with Crohn’s at the age of 63. It’s a topic we discuss more frequently now, and I’m lucky to hear firsthand what their doctors have told them about managing IBD later in life.

My dad was part of a research study at Rush University a few years ago where he did yoga for several months while the researchers tracked his symptoms. I asked him for the results of the study for this blog post, but he has not received them. Instead, here is what he said:

My assumption—and I think it’s a safe one—is that there is some positive correlation between increased stress and flare-ups of UC, and that some mastery of stress management reduces the frequency and severity of flares. Regular physical exercise and regular meditation/visualization — and yoga is something of a combination of the two — do wonders, in my opinion.

That’s reason enough for me to commit to a daily practice of slowing down, meditating and visualizing the person I want to be—with and without Crohn’s.

If you currently meditate or you’d like to start, please leave a comment and let me know about your experience with it. If there is enough interest, I’d love to write a blog post more focused on the connection between managing a chronic illness and taking time to meditate.

Mary McCarthy is a consultant and career/life coach living in Chicago. She helps people with Crohn’s and Colitis thrive in their work and life in spite of their illness. Contact her at mary@clrtycoaching.com if you are interested in her one-on-one coaching program for people with IBD.