The steps one IBD mom and teacher takes to stay healthy, while being immune suppressed

Biologic drugs have the ability to give many of us in the IBD community a chance to live a much fuller, and well-rounded life. But there are trade-offs, especially when it comes to our immunity and the ability to fight off infections. As a mom of a 2-year-old and 6-month-old whose been on Humira for more than 11 years, I’m extremely cognizant of protecting my kids from sickness to not only protect them, but myself. I often feel as though people may think I’m over the top with worrying about illness in my household, but quite honestly, unless you or someone you love is immune compromised, it can be a difficult concept to grasp.

This week–a special feature from a Maryland elementary school teacher with indeterminate colitis. Meet Lisa Lacritz. lisaShe’s a 38-year-old wife and mom who juggles two autoimmune diseases. She also has Hashimoto’s disease. Since she started on Remicade in 2018 following her IBD diagnosis, she’s experienced the difficulty of  warding off illness while being an elementary school teacher and a mom to a young child.

“Shoes off, hands washed!”  My son knows the routine by heart. Every time we come into the house, shoes come off and hands get washed. I like to think that all of my years spent worrying about germs when I didn’t need to be, were fantastic training for when I actually needed to be concerned.

When I was diagnosed with IBD, I was hesitant to get on a biologic because of my fear of being immunosuppressed. I’m an elementary school teacher and when I started on Remicade infusions, my son was only six. I basically spend my day in a Petri dish. fullsizeoutput_269aDealing with the symptoms of IBD was more than enough–how on Earth would I be able to handle that plus avoid picking up viruses at school and in public?

Taking steps to be proactive 

After I got sick on the second day of school last fall, I decided that washing my hands frequently wasn’t going to cut it. I have always been a frequent hand washer, especially at school, but I needed more protection. At first, I was nervous about how others would perceive me. There were a lot of confused looks by coworkers and students when I would politely decline to use someone else’s pen. I started carrying a pen with me everywhere to ensure I wouldn’t have to use a communal pen. Now people know that I always have “my” pen with me and that I don’t share it with others.

Another thing I’m very careful about is touching door handles and knobs, especially the door to the main office. The main office is where you can find the school’s health room, where every sick kid passes through. I either wait for someone else to come and open the door, or I use a barrier such as a paper towel to open it and then wash my hands right away.

I never touch my face and I keep my phone in a plastic bag (quart size bags work great!) so that I keep school germs at school. Kids are definitely puzzled by that last one, but I explain that I need to keep germs away as much as possible, and if I need to touch my phone then my phone gets the germs on it so I protect it with a plastic bag.

Worrying less what others thought and making my needs a priority

fullsizeoutput_3800I really needed to stop caring about what others think and prioritize my health. One of the most surprising things to me was that people really don’t understand what immunosuppression means. Some people think I’m just a paranoid germaphobe even after I’ve explained that I’m immunosuppressed. They don’t understand that a simple cold for them, can mean days of sick leave for me due to a secondary infection. Or a fun day swimming in the bay can mean a bacterial infection for me that lasts for weeks and causes symptoms similar to a bad flare.

Yes, it is mentally exhausting to worry about immunosuppression on top of all the other things chronic illness brings. Plus being a teacher. Plus being a mom.

As much as I hate getting sick, the worst part for me is missing out on doing fun things with my son. IMG_0580Somehow my body knows when we have something fun planned and chooses those times to conk out on me. When I’m lying on the couch at home feeling sorry for myself while my husband and son are at a friend’s New Year’s Eve party or Memorial Day BBQ (both events I missed this year), I try to remind myself that Remicade is what allows me to lead a relatively normal life and be able to do things like go sledding with my son on a snow day and take him Trick or Treating. I couldn’t do those things when I was in a bad flare before treatment and definitely can appreciate them more now. I just make sure shoes come off and hands are washed right when we get home.

 

Taking care of yourself and your sick child, while battling IBD

It’s never easy to see your baby under the weather. It’s a hopeless feeling when the only way they can communicate is by crying or acting differently. It’s difficult to manage your own chronic illness and keep yourself from spiraling out of control, as you worry about the well-being of your little one. IMG_9473It’s been a rough few days in the Hayden household—our almost 13-month-old son has been battling days of hives and an allergic reaction that we can’t seem to pinpoint.

The perplexing nature of his health and the unknown of what the next hour will bring, is reminiscent of life with Crohn’s disease. Trying to manage symptoms to bring comfort, the mystery of what’s sparked the problem and the emotional rollercoaster that goes along with it.

As an IBD mom, my focus is solely on getting my son to feel better. But, it’s difficult to take this on as you battle your own disease that preys on stress and worry. A disease that tends to surface when you’re going through difficult times. A disease that tries to distract you from the task at hand. It’s been exhausting to carry my son back and forth with me to bathroom as he crawls around and pulls on the toilet paper. IMG_9522As I feel burning sensations in my abdomen at the end of the day, the internal conversation of what could be happening within my own body consumes my thoughts. I can’t help but worry that I can’t go down. I can’t allow my disease to flare when my family needs me most.

I’m going to pause now and say something to all the moms and dads who have children with a complex medical condition. A condition that requires daily care, attention and worry. I simply can not imagine all you endure. Reid has hives. We’ll get to the bottom of it. We’ve talked to the pediatrician, gone to urgent care and have plans to see an allergist. But this reality is NOTHING compared to what so many families face every day. IMG_9472So, the last thing I want to do is sound like I think I have it so bad—because trust me, I keep everything in perspective and know I’ve been blessed with a healthy baby. My goal is to provide insight into motherhood with IBD and the challenges it can present at times.

As we endure life’s unexpected ups and downs—it’s imperative we listen to our bodies, get as much rest as possible and stay on top of disease management. As most mothers do, we tend to put our needs to the wayside. But, in doing so, you set yourself up as an easier target for your disease. It’s a difficult balance, but managing your own illness still needs to be a priority. When you have a spouse and children, your IBD is not just about you, but your entire family. Ask for help when you need it. Take your daily medication and stay away from trigger foods that can ignite additional symptoms. Run an errand by yourself. Take a long shower. Give yourself time to process the stress you are going through and remember to breathe.

As an IBD mom, by taking care of myself, I know it’s part of how I take care of my son. He is completely dependent on my husband and me. If you lose sight of the importance of caring for yourself and doing all your can to control your disease, it will come back to bite you in the ass. Literally and figuratively.

I’m only 13 months into motherhood. IMG_9419Each day is a learning experience. Much like my initial diagnosis of Crohn’s disease nearly 13 years ago, I know I’ll continue to grow and find comfort in my new role. Navigating unknown waters and experiencing illness within your child is all part of it. No matter how many years go by, as parents, we’ll never be experts, but we’ll continue to evolve and discover what works for us personally and as a family.

Find the balance. Use your voice. Your journey as a patient has prepared you for motherhood in ways you never thought possible. Trust your mom gut. As women with IBD, there will be difficult days when the brain fog, fatigue and pain overwhelms you and you have to push through to care for your child. But, there will be many more days where you feel strong and happy—and your child will look up at you with love in their eyes and a smile on their face and remind you that you’re the best thing in their life. Hold on to the feel good days, the magical moments—and know that while the tough times in parenting and as a patient are draining, they are fleeting.