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.

 

 

 

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.

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!