"I Know A Little About Birthing Babies" NEW! #IBDParenthoodProject Surgery Factsheet
December 3, 2019
This post is sponsored by the American Gastroenterological Association (AGA)’s IBD Parenthood Project.
So, I met this guy. He was looking at some of my photos on social media and asked, “Are those your twins?” I said, “No, they are my nephews, but I’m obsessed with them!” He then replies, “So I assume you want kids someday?” and then he sent a smiley face. Uhhh… I wasn’t even sure how to answer that. As a matter of fact, I don’t think I answered him. I just didn’t know what to say. I simply didn’t have enough information at the time — did people with IBD, like me, have healthy pregnancies and healthy babies? I felt as if he was asking what, to him, seemed like a straightforward question. But I didn’t want to give an answer I wasn’t exactly sure of. Was a pregnancy even possible for me?
I know now, through my involvement with the American Gastroenterological Association (AGA) IBD Parenthood Project, that pregnancy while living with IBD is definitely a possibility. After learning more about pregnancy and IBD through the program’s resources, I feel empowered as a patient and empowered as a woman that I know and understand my options. I am definitely more hopeful that pregnancy may be a future possibility for me, but, I still have fears; fears associated with pregnancy and the surgeries that I’ve had related to IBD.
At the IBD Parenthood Project launch event, I learned that women with IBD are three times more likely to voluntarily choose to not have children, which makes a lot of sense to me, because I was one of them. I think it might take some time for me to unlearn the incredible fear that has been impressed upon me by my trusted physicians who didn’t always have accurate information regarding my ability to have children. I’ve been told that I would not be able to have children and/or that I shouldn’t have children. This is due entirely because of the severity of my disease and the surgeries I’ve had. IBD Parenthood Project has resources for you and your doctors from medical experts to give them accurate information on how to care for women during all stages of family planning. I think that is why it is incredibly important that the IBD Parenthood Project exists, so that the fear and misconceptions that women with IBD, such as myself, have surrounding pregnancy and childbirth will no longer exist.
I’ve had an opportunity to sit down and learn more about this family planning initiative with medical advisors, patient advocacy organizations, and other partners involved with this project. After learning more, I was so excited, but I definitely had more questions. Matter of fact, when I was first approached to participate in this project, one of my first questions was “will a colorectal surgeon be on the medical advisory team?” Because everything I’ve always known or been taught surrounding pregnancy and me, or patients like me, is that a colorectal surgeon will need to be involved in the planning process. I wondered, will the program talk about the possibility of having a vaginal birth with IBD? Is it possible for me, after surgery related to IBD, to physically carry a pregnancy to term, or does scar tissue affect that possibility? I wanted to know, does this great information even pertain to patients like me, who’ve undergone extensive surgery for IBD?
At first, I didn’t feel like this project was meant for me. I had so many questions; how could this program possibly address them? I do think it’s important to note, because I have friends who have had successful pregnancies and births while living with an ostomy, I knew it was very possible, but I was skeptical. IBD Parenthood Project led me to question what I thought I knew about my inability to conceive. I knew if I had these questions and misconceptions surrounding IBD, pregnancy, and surgery I probably wasn’t alone in feeling this way.
It was important to me that the IBD Parenthood Project was inclusive and provided information that was clearly defined as beneficial and useful for all patients with IBD, surgery or not. So, I shared my suggestions with AGA and they took my insight to heart and decided to make it abundantly clear! With my help and continued expertise from medical professionals, AGA developed a Pregnancy and IBD Surgery Fact Sheet! The fact sheet provides dedicated and specific information like, “what should I keep in mind for my pregnancy if I’ve undergone surgery?” and evidence-based information about pregnancy and prior IBD surgery. This project addresses my concerns. We’ve been working hard to develop this information and I hope that you find it valuable!
When the time comes to plan your family, it is important that you establish a team of experts that will work together and become your “care team” during the process. This team might include your GI, OB/GYN, maternal-fetal medicine (MFM) subspecialist, pediatrician and lactation specialist. Having a plan in place with your care team can help to ensure a healthy pregnancy, as women with IBD can and do have healthy pregnancies and healthy babies. Some of the resources on the IBD Parenthood Project website include a patient toolkit featuring easy-to-follow infographics, a flow diagram outlining your “care team” of physicians, a preconception checklist, and more for women with IBD, as it relates to family planning. Because of the IBD Parenthood Project, I feel confident that I can have educated, evidence-based conversations with my healthcare team on how to manage my disease, and maybe…. maybe one day, plan for a family.
I still can’t tell you when, for me, the conversation will begin. But at least now, I know I can have the conversation. The idea of pregnancy has crossed my mind more and that’s solely because of the IBD Parenthood Project. Yes, due to my disease severity I am still a little bit scared. However, I am not entirely opposed. I am less scared and more hopeful that having children may be a possibility for me in the future. I now know, the IBD Parenthood Project is most definitely for patients, like me, who have undergone extensive surgery, who have severe IBD, who live with an ostomy, or a J Pouch, or have fears and concerns surrounding IBD and pregnancy. When the time comes, because of the IBD Parenthood Project, I am more comfortable and confident that I can have an educated, evidence-based conversation with my healthcare team about family planning with my doctors. I will work with my HCPs early, because I know through the IBD Parenthood Project, with open and honest conversations, the reality is, with proper planning and care, women with IBD, like myself who’ve had multiple surgeries, can have healthy pregnancies and healthy babies!Because of the IBD Parenthood Project I am more optimistic for myself and other women living with IBD and their families.
In conclusion, for situational awareness, by the time I finished this blog, that same “guy” I mentioned who asked about me having kids? He is no longer of my concern, lol! Oh, what a world! ;) But! I am positive when (or if) my Mr. Right shows up, we can have an educated conversation about family planning.