Educating Like A Mother!
This post was created as part of my partnership with the American Gastroenterological Association (AGA); however, all opinions and personal experiences expressed are my own.
When you get to a certain age while living with inflammatory bowel disease (IBD), family dinners can begin with the question, “Should you be eating that?” and end with, “Have you started thinking about having children?” I know this because I am part of a Louisiana Creole family. If we aren’t talking about food or politics, we are talking about babies: when will I have them and how many will I have. But for women living with IBD, such as myself, those topics can bring anxiety and frustration, because both are believed to bring limitations.
Being a parent with IBD is attainable for me
One thing I’ve learned since my diagnosis is that my relationship with food will fluctuate depending on the evolution and stability of my disease. At one time, I believed the same about my chances for motherhood. What I have found since becoming a mother while living with ulcerative colitis, is that because I have knowledge about my disease, resources, and a health care team, my life as a parent is not as negatively affected by my IBD. What I thought was an impossibility is actually attainable.
When I started thinking about having children, I was given a long face with a sob story about how my IBD would more than likely get in the way of my having a healthy pregnancy and a healthy child. It was suggested that if motherhood was my wish, I should begin looking at other options, and that I should go on birth control to save myself the trauma. I was also told that women with ulcerative colitis don’t really have children. I took that information, buried it along with all my feelings and moved on with my life.
A year and a half later, I was pregnant.
The difficulties of finding proper care
Before the Affordable Care Act, I was still unable to get health insurance until an OB/GYN labeled me a “high risk pregnancy” and forced me into an emergency insurance plan. Unfortunately, I lost the care of this OB/GYN and the gastroenterologist who diagnosed me at the time. Thankfully, I met a really nice OB/GYN whom I bonded with and reminded me so much of my beloved cousin. Unfortunately, she was unfamiliar with ulcerative colitis. In fact, she had never had a patient with IBD before. She didn’t know that an IBD specialist was needed for my case, and instead she sent me to a gastroenterologist who told my son’s father that I was another hysterical pregnant woman with hemorrhoids (at only 18 weeks pregnant) and that pregnant women always got a little crazy. Yes, that’s exactly what he said.
Without the guidance of a proper gastroenterologist, my OB/GYN was doing her best to research my case or cases like mine. She decided that the safest thing to do while I was in her care was to pull me off all my ulcerative colitis medications. Why? Because she just couldn’t find enough definitive evidence to prove that it would be safer to have me on them. In her opinion, I was doing fine. I showed no evidence of having ulcerative colitis, so maybe my diet helped me or put me in remission. She monitored my low blood pressure and anemia, but that was it.
I was not prepared for pregnancy
I went into that pregnancy completely unprepared. Over time, as my work in IBD advocacy grew to include research, legislation, and patient experiences. I realized that everything I thought before, during, and after my pregnancy as it relates to living with IBD, was wrong. And that I wasn’t the only one. Even as I attempted to help people through their experiences, I found it very hard to seek out information that any woman with IBD could quickly access in order to discuss it with their health care providers, partners, and anyone else. Up until a month ago, I thought a high-risk OB/GYN was the proper doctor to see during pregnancy and while living with IBD. That was all before I was introduced to the IBD Parenthood Project, created by the American Gastroenterological Association (AGA).
The IBD Parenthood Project program
As part of this program, the IBD Parenthood Project launched a website designed to help women living with IBD map out their road to motherhood and plan for a family. It begins with step-by-step guides from starting the conversation about your possible plans, through the mysterious Fourth Trimester. The website is easy to navigate and allows you to print out fact sheets and helpful guides to take with you to an appointment or to share with others. In addition, the website links to fact-based articles on subjects like IBD medication safety considerations while pregnant, the importance of achieving remission, and fertility. This website not only helps bridge the gap of communication between you and your healthcare provider, but it’s an excellent educational tool for yourself.
Through the IBD Parenthood Project, I learned how to assemble a great team of specialists to get me through my next pregnancy. Of course, I already have an awesome gastroenterologist, rheumatologist, and OB/GYN. But now, thanks to the IBD Parenthood Project, I’ve learned that a maternal-fetal medicine (MFM) subspecialist should be added to my care team. Before reading about it on the website, I didn’t even know what an MFM subspecialist was, or how to find one! An MFM subspecialist is “an OB with an additional 3 years of formal education and is board-certified in maternal-fetal medicine, making them highly qualified experts and leaders the care of complicated pregnancies.” The MFM subspecialist will work alongside an OB/GYN to help make sure the woman has a healthy and successful delivery. You can find a link to locate an MFM nearest you on the IBD Parenthood Project website, along with additional resources.
Although I am currently treating and managing my disease while navigating motherhood, I feel that my family is not complete. I would love to add at least one more member to our little tribe, and I am trying to put myself on a road that will lead to accomplishing that. Having a resource like the IBD Parenthood Project not only eases my anxiety the second time around but will also ensure that I have access to the best health options in order to be the best mom for my family.
For more information on the IBD Parenthood Project, please visit: www.IBDParenthoodProject.org.
Do you keep a food diary to help manage symptoms?