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My PIANO Study Experience

From a young age, I knew that I wanted to be a mother. But, when I began experiencing symptoms of Crohn’s disease at age 21, I became worried about how my future may look. Knowing instinctively that I wanted to be well to have a child, I set out on a mission to heal the angry disease that was taking over my intestines. After struggling on lower-tiered medications, a hospitalization for an obstruction led me to realize that the deep healing that I desired would only come using biologic medications. But I wanted to have kids soon; would using these medications during a future pregnancy be safe? Research into the topic wasn’t as plentiful as I would have liked, and the message boards and mom blogs were full of more questions than answers. As it would turn out, I would need to participate in the research if I wanted to help answer this question.

Once on proper medication, and in confirmed remission, my husband and I got happy news: we were expecting. After congratulating us, my doctor brought up the possibility of taking part in a pregnancy study. Fueled by the lack of research available for women who wish to make informed decisions about their medications and expanding their family, I was eager to see

how I might help contribute. Luckily, the Pregnancy in Inflammatory Bowel Disease and Neonatal Outcomes (PIANO) study had been set up a few years prior; taking part would be the perfect opportunity to help get answers to the IBD community.

Throughout my first pregnancy, I would chat on the phone with the research coordinator, who asked questions about disease activity, medication use, infections, and overall health. Then, following my oldest son’s birth, and for 4 years after, I would answer questions about my health and breastfeeding status, as well as his overall health, following the Ages and Stages Questionnaire. It was such an important topic of research, that I was happy to start the process all over again when, almost two years later, I became pregnant a second time.

In the Spring of 2015, I welcomed my second, healthy, beautiful baby boy. This time, a progression in the study would now allow for more than just questionnaires. Moments after he was delivered, while I cradled him in my arms and mulled over names, my OBGYN dutifully took samples of his cord blood to test for any detectible drug presence. It was 4:00 am, and my tired delivery nurses carefully boxed the vials according to instructions, and left the room to oversee the cross-country mailing. My son’s blood and my breastmilk samples would follow suit a few days later, traveling all the way from my home state of New Hampshire to California. The contributions never felt bothersome to me, because I knew that the results of this study would help support parents and their children all over the world.

Both of my sons and I have taken part in this study since 2012, and it’s one of my proudest contributions to future moms who are faced with a hard decision, just as I was: is it safe for me to take my IBD medications while pregnant? Now that some of the results are being shared across the world, it’s amazing to know that moms will now have more information at their fingertips.

Contributing to research doesn’t always mean signing up for the latest drug trials. It may mean tackling an area of disease management that is not currently well researched, and contributing your experiences to further the medical community’s understanding of it. This type of research is vital and wouldn’t exist without support from organizations like the Crohn’s and Colitis Foundation, as well as full support from my doctors and nurses along the way. I was so thankful for the opportunity to provide others with greater knowledge into pregnancy outcomes with IBD, and I’ll probably be sad when my youngest ages out of the study!

This blog post can also be seen featured on the Crohn's and Colitis Foundation's website.

To read an article with the study author's insight, go here.

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