*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.
Time. Time moves fast and moments pass, even faster as we get older. We constantly feel like we are playing catch up. I sit here in my mid-30s, one baby down and contemplating another or two. But the ticking of the biological clock is screaming in my ear. My treatments change as my disease consistently evolves. And not just my disease, but my body, too. My body is constantly changing. It feels like I can’t keep up. I’m 10 years into my diagnosis and I still have so many questions and concerns. I want to grow my family, but the prospect of going down that path medically, emotionally and physically is exhausting in thought.
After the press event I attended for the IBD Parenthood Project, I found myself in the middle of extra intestinal manifestations (EIM) that put me in the hospital and in consultation for new therapy options. Before we began the new therapy conversation, I reached for my phone and pulled up the website. Even though I had been through the process before, and was not exactly in a place to work on expanding my family, I knew I needed to be on the path. I remember hearing patient advocate, Jess Caron say, “I needed to be prepared.” I felt after everything I had been through, I needed to be prepared. I know that my EIMs are strongly connected to my IBD and that decreasing inflammation in my body overall would be the ultimate goal. But could we get there while also keeping in mind that I have dreams and goals for my family? I scoured the website, went down to the bottom of the page, clicked on the featured links and found just what I was searching for: information about medication restrictions through the American Gastroenterological Association (AGA) info sheet. Being able to have that in my hand as I went into this conversation with my doctor was a great relief.
One of the features I love about this website is that it’s clear and to the point. Usually when I need to bring questions or websites into my doctor visits, I get a little flustered. I’m a little more fortunate than others in the sense that my GI, OBGYN, & Rheumatologist indulge me, are progressive, listen and engage. This means I have the time to pull up things that I’ve read, heard about at a conference or just wondered about. But most of us don’t have that kind of time. And sometimes our visits are exhausting, emotional or just too short. The IBD Parenthood Project website allows you to get exactly what you need in an efficient amount of time. I also love that they have involved specialists and patient advocates from the start.
Before this program, I didn’t even know what a maternal-fetal medicine (MFM) sub-specialist was, and why it was so important to have one (as opposed to a high-risk OBGYN). I had a high-risk OBGYN, and she was a great doctor. However, unfortunately, she didn’t understand IBD or its treatment. The IBD Parenthood Project is bringing the MFM & GI communities together to work on a single course of action to aid women on their maternal health and IBD health journeys. This bridge and connection could help connect so many dots and fill in so many gaps of care. As this program and website moves forward, it paves the way for communication bridges not just between patients and healthcare providers, but among the healthcare provider community, too. We complain about the healthcare system and wonder when it will get better. Programs like the IBD Parenthood Project are helping to slowly fix healthcare in a meaningful way.