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. 
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. 
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. 
I 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. 
With 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. 
After 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.
She’s a 38-year-old wife and mom who juggles two autoimmune diseases. She also has Hashimoto’s disease. Since she started on Remicade in 2018 following her IBD diagnosis, she’s experienced the difficulty of warding off illness while being an elementary school teacher and a mom to a young child.
Dealing with the symptoms of IBD was more than enough–how on Earth would I be able to handle that plus avoid picking up viruses at school and in public?
I really needed to stop caring about what others think and prioritize my health. One of the most surprising things to me was that people really don’t understand what immunosuppression means. Some people think I’m just a paranoid germaphobe even after I’ve explained that I’m immunosuppressed. They don’t understand that a simple cold for them, can mean days of sick leave for me due to a secondary infection. Or a fun day swimming in the bay can mean a bacterial infection for me that lasts for weeks and causes symptoms similar to a bad flare.
Somehow my body knows when we have something fun planned and chooses those times to conk out on me. When I’m lying on the couch at home feeling sorry for myself while my husband and son are at a friend’s New Year’s Eve party or Memorial Day BBQ (both events I missed this year), I try to remind myself that Remicade is what allows me to lead a relatively normal life and be able to do things like go sledding with my son on a snow day and take him Trick or Treating. I couldn’t do those things when I was in a bad flare before treatment and definitely can appreciate them more now. I just make sure shoes come off and hands are washed right when we get home.
The excitement of knowing “I’m not a hypochondriac” was overshadowed by the fear of having a “poop disease”. You see, my first year of college, I became best friends with my Suite mate. Ironically, she too battles Crohn’s. I was 20 years old, diagnosed with a disease that had no cause and therefore no cure…how can that be? Why me? What am I going to do? I didn’t even know how to swallow a pill. I was never the sick kid! Now, I had to take 24 pills a day, which sometimes would take me an entire hour to swallow one dose, throw up, re-swallow again. Three times a day. It was as if I had entered “hell”.
Which made my journey with the disease a little different than today. I was raised to think “only the weak complain!” “Someone always has it worse!” “Suck it up butter cup”. “If you want the job done right, do it yourself”. This made me look at the situation as this was “my” disease, “my” problem and I don’t want to make anyone worry about me or feel sorry for me! I became a master at hiding the disease and a master at hiding the byproducts of the disease.
I’m a proud mother to two amazing children. I carried and gave birth to both of them with zero complications. I’m a business owner of a successful insurance agency, which I established 4 years after diagnosis. I didn’t allow my disease to derail my professional aspirations. I’m an active mother and manage to find time to be a room mother and Girl Scout cookie manager.
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