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!