IBD Parenthood Project
This post is sponsored by the American Gastroenterological Association (AGA). I am a paid program brand influencer; all opinions and personal experiences expressed are my own.
Pregnancy. Family Planning. Fertility.
These words can often ignite anxiety in women living with chronic conditions like inflammatory bowel disease (IBD). As a result, many women living with IBD will choose not to have children based on misinformation about how IBD and its treatments can affect pregnancy.
When I was diagnosed, I didn’t think about fertility or family planning. I was focused on managing my disease so that I could get back to work. Then, suddenly, I found myself faced with the hard questions. Questions about fertility, treatment options while pregnant, what to expect while expecting with ulcerative colitis. All my questions went unanswered. I couldn’t find a resource with current, fact-based information to answer my questions and settle my fears. I became pregnant when I was surrounded by misinformation given to me by a doctor not familiar with ulcerative colitis. I remained fearful, untreated and ignorant throughout my pregnancy because of a lack of resources for future mothers with IBD.
That was 10 years ago. Since then, the IBD community has grown immensely with strong bridges connecting patients to information directly from the medical community with the help of advocates and healthcare providers using their social media platforms to spread information. I began my advocacy journey because I didn’t want another mother to experience the same anxieties and receive the same misinformation I did. This is one reason I am partnering with the American Gastroenterological Association (AGA) to spread the word about their new project, the IBD Parenthood Project.
The IBD Parenthood Project launched an amazing online resource that addresses the myths and misperceptions of pregnancy and IBD throughout the entire family planning process. Through education, current studies, and consultation from healthcare providers, AGA has been able to create a home base of information that is easily accessible and easy to navigate. I can tell that a lot of thought was put behind the categories and execution of this website. For women with IBD who may feel overwhelmed by the thought of pregnancy, the website is a great, easy-to-understand resource to access factual information and share it with your healthcare provider and care team.
On January 17, 2019, I attended AGA’s IBD Parenthood Project media breakfast hosted by Drs. Uma Mahadevan, Rajeev Jain, Christopher Robinson and patient advocate, Jessica Caron. I knew Jess somewhat from online interactions and from being a part of the advocacy space. We also met last year at a medical convention and she helped co-host an IBDMoms twitter chat. I knew part of her story, but I hadn’t realized what an amazing force she was when it came to advocating for herself and her maternal health. Jessica was an empowered patient determined to get answers to her questions. It was reassuring to hear her story because I finally was able to understand that I was not alone in the hundreds of questions I had when I was starting my family. When it came to IBD and my past pregnancy, there were no clear answers. When I was starting a family, I encountered conflicting opinions from healthcare providers and didn’t have the latest information. As she was telling her story, I thought about just how amazing my pregnancy and postpartum experience would have been if I had had the tools that are now available to make decisions based on evidence.
One of my favorite parts about this project is that AGA is working on taking it one step further than a standalone website. Dr. Christopher Robinson stressed the importance of cross pollination of information among GIs, maternal-fetal medicine sub-specialists, OBGYNs, lactation consultants, nurses, and all other providers associated with guiding an IBD patient through her journey to motherhood. They are hoping to create enough awareness about the importance and accessibility of the patient website and clinical care pathway that these resources help shape the conversations providers have with their IBD patients. . That being said, share this site with more doctors than just your GI. This project should be well known and used with your entire medical team. These resources underscore the importance of shared decision-making, to not only ensure the right decisions are made, but to ensure everyone involved feels informed and confident in those decisions.
If you are looking to start your family planning or hoping to get on a path that may eventually lead you to a family, I would suggest taking a look at the site. Also check out the directory for GIs specializing in IBD, as well as the maternal-fetal medicine physician directory to get yourself comfortable with your future care team. And if you have a rock star team of physicians, share this website with them and start a plan for the future. If you are already pregnant or just recently had a baby, this website has resources for you as well. It covers us from “planning” to postpartum.
I know that starting the family planning process or finding yourself pleasantly surprised at starting a family can be overwhelming as you combine your IBD life with your new mom life. But you are luckily starting a family in an age of instant information, online advocates, tweeting gastroenterologists (GIs), IBDMoms, IBD non-profits & the IBD Parenthood Project. You, my dear, will be just fine!
For more information, please be sure to visit the IBD Parenthood Project at https://goo.gl/AtU1mw.
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