Just short of two years ago, I found myself sitting in the emergency room with a fever of 102.5 degrees Fahrenheit, one hand clutching my stomach, the other gripping my now husband's hand. An intake nurse led me behind a curtain.
“How much pain are you in?” She pointed to the pain scale from zero to 10 with faces underneath the numbers ranging from smiling to crying.
“Ten,” I said, closing my eyes.
This excruciating abdominal pain sent me to the emergency room two more times within a few months before doctors figured out that I had sepsis due to a Crohn’s disease flare-up. At my first two visits, doctors concluded my Crohn’s symptoms were just acting up and sent me home once they’d brought my fever down. But in the end, after many tests, they realized I needed surgery to remove a part of my small intestine that Crohn’s had damaged beyond repair.
Crohn’s disease is a chronic inflammatory bowel disease that causes my body to attack my digestive system. Its symptoms can be agonizingly varied: abdominal pain, diarrhea, weight loss, anemia, fatigue, and more. The causes of Crohn’s are still unknown, though it’s thought that those of us with this condition may have malfunctioning immune systems that accidentally harm our digestive tracts. What’s much clearer is that Crohn’s can cause serious complications, like the hole mine whittled through my intestines. This fistula, as it’s known medically, led to the sepsis infection that landed me in the ER.
“You should have been in the ICU,” my ER doctor told me after I received my sepsis diagnosis. “You’re lucky you came in when you did.”
I felt like I’d come close to death, and I wondered why it had taken three ER visits to figure out exactly how my body was failing me. Up until then, my Crohn’s had seemed under control. I was fine—until I wasn’t.
The experience shook me to my core. I started to feel like my health and safety were not only out of my hands but out of my doctors’ as well.
I was diagnosed with Crohn’s disease when I was 17. At the time it wasn’t a huge deal. I had common symptoms like diarrhea and fatigue, but they were mild enough that I mainly struggled to adapt socially. My Crohn’s became this awkward thing I wanted to avoid talking about with anyone but my mom and my doctors.
Post-diagnosis, I adjusted my diet a little by eating fewer things that triggered my symptoms, like dairy and fried foods. I also took corticosteroids to keep my body’s inflammation at bay. For a while this worked so well that I didn’t really identify as a person who had Crohn’s. Then, when I spent my 27th birthday in the hospital because of my Crohn’s-induced sepsis 10 years after my diagnosis, I realized I could no longer shove Crohn’s to the back of my mind. I could have gone into septic shock, which can be life-threatening. How had I not realized my body was trying to warn me until my fever and pain got that severe?
After my surgery I was told the best way I could avoid future Crohn’s emergencies was to go on a type of immunosuppressant called a biologic to reduce the disease’s characteristic inflammation in my body. Now my husband injects me with my biologic on a strict timeline every other week. Thanks to this treatment, my Crohn’s is inactive. In Crohn’s parlance, this is also known as remission, meaning I’m lucky enough that my biologic has eradicated my symptoms. But even this has come at a cost.
My biologic inhibits my ability to fight tumors, including cancerous ones like melanoma, which is common in the Sunshine State, where I live. As a result I get blood work every three months on the dot to check for cancer markers, and I get frequent skin checks at the dermatologist too.
I have to be persistent about making sure I schedule those blood draws and dermatology appointments. Making sure I call my doctors when I have questions. Making sure I’m the polite but squeaky wheel so nothing is overlooked or left out. Making sure I have enough of my biologic in my refrigerator. Making sure I’m able to take it with me if I travel (and keep it cold enough if I do). Making sure I always have solid health insurance because there’s no way I could afford the drug without it. Double-checking. Triple-checking.
My Crohn’s emergencies and treatment have made me the type of preoccupied person I wasn’t before. Sometimes I worry that I may be perceived as a control freak or hypochondriac (yes, I worry about worrying). But I thought the only way to stay on top of my health as much as possible was to be the detail-oriented person who hauled around a heavy-duty planner, refusing to let anything about her health fall through the cracks.
Then I got pregnant.
I waited to conceive until my Crohn’s was inactive. “The key with patients with Crohn’s is you want them to be in remission [before] entering pregnancy,” Robert Atlas, M.D., ob/gyn and chair of obstetrics and gynecology at Mercy Medical Center in Baltimore, tells SELF. “We don’t want active flares of Crohn’s during pregnancy if we can help it.”
That's because being pregnant or giving birth when you have active Crohn’s can lead to complications. For example, due to symptoms like diarrhea or trouble absorbing nutrients, people with active Crohn’s can have deficiencies in iron, which is important for proper fetal growth and for avoiding anemia (a common Crohn’s disease complication). Active Crohn’s can also increase the risk of premature delivery and, if it shows up somewhere like the anus or rectum, lead to severe tearing during vaginal childbirth. Unlike so much of my experience with Crohn's, deciding to get pregnant when it was safest for me and my baby was something I could control.
After I became pregnant, my gastroenterologist recommended that I continue taking my biologic to manage the disease. Although current research is somewhat limited, there have been no reports of significant adverse outcomes in pregnant people who take these drugs. My gastroenterologist’s recommendation is also in line with the American College of Obstetricians and Gynecologists’ suggestion to continue this type of immune-suppressing drug during pregnancy if the benefits outweigh the risks. I know I’m doing everything my doctors recommend for my own health and my baby’s, but that’s not always enough to calm my mind.
I imagine that anyone worries to a certain extent when they get pregnant. But it’s been hard to juggle maintaining my remission while trying to do everything right for my baby, from taking daily prenatal vitamins to making it to each milestone doctor’s appointment (on top of the ones I already have to attend). I’m also scared of how childbirth might make me feel even more robbed of control. In the initial stages of my pregnancy, I thought a planned C-section might be the answer, but it turns out that’s not necessarily the simple and predictable option I hoped it might be.
While I’m excited to be welcoming our first baby soon, I can’t be purely ecstatic. Like many other people who have been through something traumatic, I’m always waiting for something to go wrong. Sometimes I’ve stayed up at night wondering, worrying. Will my baby be all right through this? Will we be okay?
At this point I’ve realized that Crohn’s will always be a part of my life, testing me along the way. But I’m also learning that, for my own sake, sometimes I need to let go of my urge for control, because it’s impossible for me to sway the outcome of every question mark in my future. Instead I’m trying to control what I can, like taking my medication and keeping all of my doctor’s appointments. And through therapy and embracing a yoga practice, I’m trying to let go of what I can’t.
The more I think about it, the more I realize that all of this has given me a glimpse into the sheer uncontrollable nature of birth and motherhood, along with a deeper understanding of the roller coaster that is living with chronic illness. Having to adjust my expectations of what my life and health look like will be challenges that resurface again and again.
At the beginning of my pregnancy, I sat in a prenatal yoga class in Reclining Queen pose with a lavender eye mask resting gently on my face. “Birth is surrender,” my teacher said. “How deeply can you surrender?” My yoga teacher’s question rings through my head with every day that passes, bringing me even closer to delivering my baby. Her words are a reminder that I’ve embarked upon a wild and beautiful journey that has so much to teach me. How deeply can I surrender?
I’m working on it, challenging myself every day to trust in my body and the medical community once again. That’s about all I can do.
- Why I Decided to Reveal My Crohn’s Disease on Social Media
- Giving Birth Made Me Question the Informed Consent Process During Childbirth
- The Long and Winding Road to Managing My Anxiety
Originally Appeared on Self