From IVF to surrogacy: This IBD mom’s resilient journey

IBD and surrogacy. Those are loaded words. Both evoke emotions and opinions for unique reasons. For Jessie Magaro, 34 of Atlanta, the decision came after the unfathomable struggles she had with her Crohn’s during pregnancy and after. To provide you with the backstory, Jessie was diagnosed with Crohn’s and endometriosis when she was 15. She underwent an elective surgery her senior year of high school for her Crohn’s that put her into surgical remission for 15 years. IMG_7818

Jessie got married in 2016. While she was loving every second of newlywed life, she started feeling endometriosis pains. Less than a year after tying the knot, her doctor discovered her fallopian tubes were blocked. It was unclear if the blockage was due solely to endometriosis, or if it was a result of scar tissue from her bowel resection. Either way, IVF seemed to be the only option to get pregnant, and her fallopian tubes would need to be removed for that to be successful. In November 2017, Jessie underwent the surgery. When she woke up, she thought she would be stripped of the ability to conceive a baby naturally. But, her surgeon told her they were able to save and repair one of her tubes.

Jessie ended up getting pregnant right away, but unfortunately had an ectopic pregnancy that ended up severely rupturing her fallopian tube. During emergency surgery to remove the remaining tube, it was determined her endometriosis was severe and IVF needed to happen sooner than later. I had the chance to interview Jessie about her harrowing experience to bring a baby into this world, while living with IBD and endometriosis. IMG_7820

NH: How did IVF impact your IBD?

JM: “The moment we started IVF, I felt a shift in my body. A storm was brewing, and I could feel it. My completely dormant Crohn’s appeared to be waking up, but I didn’t want to believe it. I battled through the IVF process while experiencing my first flare in a decade in a half. The Reproductive Endocrinologist and GI were miffed. No one could say if this was an isolated reaction to the hormones, or if I was truly experiencing an active flare. After a lot of back and forth, and hard conversations with medical professionals and our families, we decided to proceed with implanting an embryo. The thought process was that most women tend to do better in pregnancy with Crohn’s, if they had been in remission prior. The hope was that this “flare” was an isolated incident from the IVF drugs/hormones, and that everything would calm down once I was pregnant. It was a risk, but one we decided we were willing to take. After a short round of prednisone, the flare subsided, and we proceeded with the transfer.”

NH: You now have a beautiful, healthy 13-month-old daughter to show for it. What was your pregnancy like?

JM: “My pregnancy was a terrifying whirlwind of trying to manage an awful flare while keeping the baby safe. IMG_7821I developed a new manifestation of the disease I never had before: Perianal Crohn’s. Not a pleasant situation and one that is very difficult to treat/manage while pregnant. Things got so bad at one point, I had to have surgery to drain an abscess and place a seton to help a fistula heal. No one wants to have surgery pregnant. It was one of the scariest moments of my life. The first trimester was spent hoping and praying the baby would make it with all the turmoil going on in my abdomen. The second trimester was spent hoping and praying we could keep her in there long enough to be viable outside of the womb. The third trimester was spent in an unbearable amount of pain fighting the urge to take the prescribed pain pills and being so scared about how the increased biologics, steroids and other new drugs being introduced into my system might affect her.”

NH: You must have been going through so many emotional struggles at this time, on top of all the physical.

JM: “The level of anguish and guilt I felt was unimaginable. I already felt like I was failing at my motherly duty to protect her and keep her safe. By 32 weeks it was clear I was rapidly deteriorating, and we had exhausted all treatment possibilities deemed “safe” while pregnant. I desperately needed more aggressive treatment, and that couldn’t happen until she was out. IMG_7823With the newly manifested, aggressive, perianal disease, a vaginal birth was out of the question. I held on until 36 weeks and on New Year’s Eve of 2018 we welcomed our baby girl. We were so incredibly relieved she was ok, and the focus quickly shifted to how not ok mom was.”

NH: As a fellow IBD mom, we all know how challenging the postpartum time is, along with chronic illness. How did you navigate that?

JM: “The first five months of her life were spent in and out of the hospital non-stop. At one point we were traveling down to the Mayo Clinic in Jacksonville for weeks at a time (without her) for testing and treatment. Leaving her the first few months was by far the hardest, most gut-wrenching thing I’ve ever experienced. I would sit in the hotel bathtub staring at the IV in my arm sobbing. The physical and emotional pain was unbearable. I remember agonizing over the decision to start the new meds, or continue breastfeeding her, and the doctor saying to me “you NEED these meds, Jessie. You HAVE to get better. She needs you to get better more than she needs you to breastfeed her right now …” cue the waterfall of tears again.”

NH: You started to turn the corner when your daughter was six months old. Tell us about that.

JM: “The pain had begun to subside enough for me to take care of her without help, I could finally leave the house and I was starting to feel a little more like myself again. I was, and still am a year later, in an active flare, but we’re making progress. IMG_7824After talking  to many medical professionals, we decided it was not safe for me to carry another child. We still don’t know if it was the IVF drugs/hormones that caused the flare going into pregnancy, or if hormones in general and my Crohn’s disease just don’t mix, but we’re not willing to put myself, or another baby at risk like that again.”

NH: I can only imagine what a difficult and complicated decision this has been for you and your husband.

JM: “This was not a decision that was made easily or lightly. As we go through the motions of finding a surrogate to carry baby number two, my days are filled with a roller coaster of emotions. We know we want another child, but at what price? I can’t take care of my family if I am unwell. If carrying another child myself leads me to be unwell again … is it worth it? Or, do I trust someone else, a safer vessel, to carry a precious sibling for our daughter. We’ve chosen to pursue a safer vessel. I am so unbelievably grateful that surrogacy is an option for us and will allow us to continue growing our family while keeping me safe.”

This story is not meant to scare anyone with IBD who is looking to start a family. Make sure you are in complete, clinical remission before you conceive, and know it is completely possible to have a happy, healthy pregnancy with IBD.

Taking on IBD, infertility and being a triplet mom: How my college roommate does it all

When it comes to life, I often say I don’t believe in happenstance. Meaning, I believe everything happens for a reason. This rings true with one of my closest friendships. Stephanie and I were random roommates freshman year of college and had an instant connection. photo by J Elizabeth Photography www.jelizabethphotos.comWe ended up living together throughout our entire college experience, stood up in each other’s weddings and have managed to stay very close, despite thousands of miles between us since graduation.

On college graduation day in May 2005, I aspired to be a TV journalist. She had dreams of being a Physician Assistant. Both of us accomplished those goals—what we didn’t see coming was that we would both be diagnosed with inflammatory bowel disease in the years ahead (the first and only people in both our families)—me with Crohn’s in July 2005, her with ulcerative colitis in February 2009. She was working as a Physician Assistant in Family Practice when her symptoms developed. She knew the pain and bathroom habits were not normal.

Stephanie recalls, “Once I admitted to myself these symptoms weren’t going to go away, I reached out to the doctor that I was working for at the time. He contacted the GI Doc we referred all of our IBD patients to, and he got the ball rolling toward a diagnosis pretty fast! When the GI walked in the room after my colonoscopy with a solemn look on his face and just shook his head, I was devastated. natandstephI teared up. I was so fearful of the unknown, as far as what this is going to mean for me for the rest of my life.  There is such a variation in the way patients with IBD can experience the disease… my mind immediately went to worst case scenario for myself.”

Stephanie’s journey with IBD and motherhood is one that is sure to inspire and provide hope to many. Along with juggling chronic illness, she also dealt with another devastating hurdle, infertility. Luckily, once she became pregnant through IVF, her ulcerative colitis symptoms were silenced.

“It was never far from my mind that while I was not pregnant, my uc was waiting quietly, like a ticking time bomb ready to go off, and that would then halt all the time, money and effort we were putting into getting pregnant. But, thankfully my uc behaved itself. We got pregnant on our first round of IVF with triplets (identical girls and a boy) who are happy, healthy and my entire world!”

Today, Stephanie and her husband have beautiful triplets who just started kindergarten. To take on IBD is one thing—add triplets to the mix… amazing! IMG_2885

“I’ve had IBD since day one of being a mom, so I don’t know any different! Just like when people ask me “What’s it like to have triplets?” my response is usually “It’s all I know, I didn’t have a singleton before my triplets, so this is the way I know how to be a mom!” For obvious reasons having IBD sometimes makes our mom responsibilities a little bit more challenging, but you have to figure it out and take the good days with the bad, because your kids need you!”

Stephanie says since having her kids, she’s noticed she’s much more willing to “wave the white flag” and reach out to her GI sooner when things start to go south. stephanieShe used to ride out the symptoms much longer before admitting there was a change that needed to be addressed, mostly because she was fearful of having to go back on steroids. I can attest to being the same way. Prior to becoming a mom, I waited until going to the emergency room was the only option. Now, I am more mindful of listening to my body and nipping flares in the bud, because my family needs me.

“Having a chronic disease definitely gives you a new perspective. It makes you appreciate the good days so much more! And when the not so good days creep up on you, having a good support system to help you physically and emotionally is crucial! Thank those in your life who lift you up and let them know you appreciate them! When you overcome each and every not so good day, nat and steph2it makes you feel just a little bit stronger and gives you the confidence that you can handle the curveballs life is bound to throw at you over and over!”

Beyond grateful to call this fellow IBD warrior mama one of my dearest friends. I’m sure after reading about her journey, you can see why.