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I have always been underweight. Even before I was diagnosed with Crohn’s at age 16, I was underweight for my age and height. Since my diagnosis in 2006, my weight has been a constant concern for my GI doctors; starting with getting my diagnosis weight up from 98 pounds. Finally, in my early 20’s I reached a healthy weight and my family, my doctors, and myself all celebrated!

Then, in 2017, I lost 10 pounds within the short span of a week. At 5 feet 4 inches, I was weighing in at 109. I hadn’t been that thin since freshman year of college. I was scared. The last time I had seen such a drastic weight change was back in 2006, at my diagnosis. On my small frame, it was a drastic change, and the people around me noticed and commented on it frequently.

One day, shortly after the weight drop, I was in the work room trying to plan for the school week. It had been a long day and I was annoyed that my pants were too big, that my energy was low, and my stomach acid too high. A coworker came in and commented on my outfit and then said, “Girl, you are so skinny! How do you do it? I want to know your secret!” My normal answer is simply “genetics”. Its true; my family runs on the thin side, and my disease came from my father’s side of the family. But the day had been rough, and I was upset and scared; so without meaning to, I took it out on my coworker. So I responded, “Crohn’s. I’m not healthy, my body just doesn’t absorb nutrients and I have no energy.”

Needless to say my coworker had no response to that; so, after apologizing profusely, she left. I immediately felt horrible. It wasn’t her fault I was 6 months into what would be a year and a half long flare, it wasn’t her fault that I dropped 10 pounds in 7 days, and it wasn’t her fault that Humira had stopped working for me. But she had hit a nerve. One that didn’t normally bother me, but I was very aware that I was so skinny, and I was very upset. I wanted my body to be healthy so that I could have a baby.

My clearest memory of my diagnosis is my mom’s reaction. I was staring up at the painted ceiling of the children’s hospital after my first colonoscopy and after hearing I have a chronic illness, and my mom starts rattling of questions. The only one I remember is, “will she be able to have children?” I was floored. At 16 I knew I wanted a family someday, but that was years in the future. I remember my doctor responded, “yes, it will only affect her fertility if the disease is out of control.” Flash forward 11 years, and here I am, standing in a workroom, making coworkers uncomfortable because I am in an active flare and desperately wanting to be pregnant.

I did my research and found that Crohn’s and pregnancy follows the Law of Three. One third of Crohn’s patients see no change in symptoms during pregnancy, a second third go into remission, and then the last third have a flare in symptoms. I liked those odds, so after our wedding, my husband and I decided to wait two years before we started our family. Two years to be our little family of two plus our dog. To learn how to live together, how to disagree, to travel, and make plans. And all was well until 6 months before our 2-year anniversary.

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I went to see my GI doctor because my pain was increased, and my trouble spots were always pinching.

After some bloodwork it became apparent that Humira was no longer working. This started a year of tests, medication adjustments, side effects, and postponing plans. My GI team all told me pregnancy had to wait, that we wanted the flare controlled before conception since we didn’t know how my body would react to the hormones. So, I waited.

My coworkers had their first or second kids, my cousins had their third. I smiled and said the right things, and I waited. But when my best friend, my work wife, told me she was pregnant, I felt hollow. Putting that smile on my face and saying the right thing was gut wrenching. I played off the tears that formed as tears of joy, but inside my head I was screaming in pain. This invisible pain, this silent struggle is what no one understands.

For a year and a half, people have asked me when we will start a family, and my response has always been, “I’m not allowed yet.” This is theme for Crohn’s. With Crohn’s, I’m not allowed to eat whatever I want, to forget my medicine, to donate blood, to start a family on my schedule, and I won’t be allowed to breastfeed my babies. But I still fight for the future I want, the family I crave. I have learned not to wallow in despair, but to remind myself that I have a good team in place. Doctors who are proactive, family that is supportive, colleagues and bosses that are understanding, and a husband who is patient, kind, loving, and helps carry the burden. I am blessed, I am finally in remission, and soon we will have our family.


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Sarah O’Hara has been a Crohn’s Warrior for 14 years. She currently lives in Mississippi with her husband and dog, Luna. She teaches Special Education at the high school level and loves her job and school kids.

 

ICYMI: 2019 IBD Awareness Week Crohn’s and Colitis Awareness: My Journey to Diagnosis

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