No symptoms of ulcerative colitis during pregnancy
I was a fortunate pregnant mama who went into a form of remission during her pregnancy. Which meant I had no stereotypical symptoms of ulcerative colitis (UC). No urgency or bloody stool. And every bathroom visit didn’t feel like impending doom. Outside of some blood pressure issues, swelling and anemia—my pregnancy wasn’t too bad. It was a walk in the park compared to what I had been living with for a few years prior to becoming pregnant. What I didn’t expect was the mutated postpartum IBD.
Extra-intestinal manifestations and symptoms of UC
The start of my labor roused the sleeping monster. He grumbled for a while but seemed to go dormant again. What I hadn’t realized was that the aches and pains, hair loss, and irritations I was having for 8 weeks after delivery, were all extra intestinal manifestations (EIM) of having ulcerative colitis. Before I had my child, I hadn’t experienced any of these symptoms. In fact, I didn’t know they were related to my IBD.
No insurance and emergency care with a chronic condition
I thought and was told by my OB, that I was having some postpartum issues. That everyone experienced them, and things would go back to normal shortly. But the night before I was expected to fly out to Texas for my little Hippo’s first plane ride, at 9 weeks postpartum, I saw blood in the toilet. It was like a punch to the gut! UC was back. I searched for my medication, didn’t bother to ask the doctor if it was safe to go back on it, and I took them like they were aspirin. Praying that they would make me better by Christmas. Years of not being eligible for insurance and only having emergency care can be awful for a person with a chronic condition. I was painfully ignorant of your disease, with bare minimum treatment options and left on my own to survive.
Everything I was experiencing was because of UC
I went through the holidays bleeding, losing weight and hair rapidly. I woke up one morning to what I thought was pink eye. It lasted for 2 weeks. On the 14th day of wearing a mask, an eye patch to breastfeed my baby and sleeping on the couch so as to not infect baby and daddy, my SO made an executive decision to take me to a doctor. I was told I didn’t have pink eye. What I had was not contagious. He asked me if I had Crohn’s disease. I told him, that I had UC. He informed me that all the things I had been experiencing since having my baby; hair loss, jaw pain, joint pain, cysts, dry skin, weight loss, uveitis (not pink eye), insomnia, night sweats; could all be attributed to my IBD.
I was equally relieved and horrified. I thought this thing was going to live in my gut. And why was it happening right now as I was embarking on the early stages of the greatest moments of my life, brand new motherhood? At the time I couldn’t get insurance (this was pre-Affordable Care Act) and I still didn’t know much about IBD other than the awful things I read online and how to “cure” it with aloe vera juice. But as I’ve moved forward helping other moms navigate through their IBD motherhood, I picked up some great ideas along the way.
Tips to help you get through UC while postpartum
Communicate with your GI
Your GI may not be the one delivering this baby and teaching you the odds and ends about labor and delivery, but your GI should be involved in your family planning process. From pre-conception to post-partum. Track your IBD symptoms like before and keep visits current. If it is possible, connect your GI and OB/GYN. Make sure everyone is on the same page. Your body is going through a lot of changes, as it goes back to normal after delivery. Don’t be afraid to share every concern. There are no stupid questions. And even if you had children before, know that every pregnancy is different and your body is different. It’s important to keep the lines of communication wide open.
Don't be afraid to ask for help
Enlist your best friends, religious community, and family members to sign up for post-partum help. People will want to come over to see and hold the baby, so maybe they can do more. Perhaps someone can bring dinner or some groceries. Perhaps stay long enough for you to take a bath, sleep, and get some time to yourself. Ask a friend to delegate duties to others, create a sign-up sheet for the first few weeks. If someone is asking what they can give you, think outside of the box. Meal delivery service, housekeeping services, grocery delivery service, babysitting services (if you have more than one child) and other things that you will need outside of baby gear and clothes. Babylist is a service that will allow you to register for items like, babysitting, post-partum dinners, and more in addition to car seats, strollers, and diapers.
Organize and set yourself up with reminders
Don’t try and remember everything! It’s okay to make notes and set alarms. Set alarms to hydrate and to eat. To feed and change the baby. Create a shared family calendar. You can also create a schedule for when visitors come to visit so that you can make sure you are not overwhelmed with company or not receiving enough help and rest. Organizing will also help you keep track of new IBD symptoms and post-partum symptoms. Things will change and you may not notice in the haze of newborn baby life.
Make mom friends in the post-partum period
After weeks of being in the home feeding, changing and talking babble, you need to get some adult conversation. But it can be hard trying to get your childless friends to understand why it’s a Broadway musical number just to get to the shower. Finding friends who can relate to parenthood is a relief. Finding friends who can relate to parenting with IBD, is even better. These friends are not replacements for your current circle, just an expansion. When you are in the midst of flares, bottles, and whining, you will need your parental compadres on speed dial! Join Facebook IBD Mom groups and pages to reach out to online with quick questions, venting, and sharing. Social media can absolutely be your friend.
Your post-partum life will have so many changes, but it’s important to enjoy each moment. In order to do this, find ways to make life easier. It’s absolutely okay to ask for help, delegate and take shortcuts! That doesn’t make you any less of mother! It may, in fact, make you a better mother!
What is your comfort level disclosing your IBD to your employer?