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.

 

How a first-grader is taking her Crohn’s and turning it into a positive

IMG_0029She’s a ball of energy and a sweet little chatter box, wise beyond her years. Seven-year-old Brooke, of Missouri, was diagnosed seven months ago with Crohn’s disease. She spiked a fever on New Year’s Eve 2017 that lasted for eight days, and from that point forward, life was never the same.

I had a chance to get dinner with Brooke and her mom, Tara, this past week. I couldn’t help but look at this little girl in awe. Despite already being hospitalized three times since March and starting on a biologic drug in August, it was as if she has dealt with the disease her entire life. She talked candidly about all the pokes of the needles and how she tells all the nurses they are her friend. She raved about the tater tots and pancakes at St. Louis Children’s Hospital. And laughed about how annoying it is when the lights go on in your hospital room in the middle of the night. She was more like a teenager, than a little girl.

Here’s how her Crohn’s diagnosis came about. After ruling out the flu, mono, strep and a UTI, doctors discovered she was anemic. The pattern of fevers continued for two months. Still no answers. As time passed, Brooke’s pediatrician started considering a GI issue. After an endoscopy and colonoscopy, IMG_0409Brooke and her family were told she had Crohn’s disease on March 2, 2018. In a matter of months, she went from being an outgoing, energetic kid to a hospital patient on a laundry list of medications. She developed her first fistula while on methotrexate and was on prednisone for more than three months.

Dealing with the diagnosis

Fast forward to this past summer and this sweet little girl received her first Remicade infusion four days before she started first grade. Brooke is the first person in her family to receive an IBD diagnosis. Her mom, Tara, says these past months have been the hardest she’s ever endured. Her mind races with the what ifs, as she navigates her family’s new normal.

“Were there signs we should’ve seen sooner? Ditarad we do something to cause this? Were we making the right decisions for her treatment and care? Brooke has a HUGE personality. When she was first sick, and before her diagnosis, she just stopped talking. She would lie on the couch for hours and hours every day. This was not my Brooke. She normally can’t sit still for more than a few minutes! I was SO scared because I knew something wasn’t right. Watching her in pain and miserable for two months while we waited on this diagnosis was miserable. You just feel helpless…all we could do was love her and pray,” said Tara.

Juggling life and family from the hospital

Tara and her family have encountered many challenges along the way. Between the costs of the medications, the hospital stays, all the tests and trying to juggle work. To say it’s been a lot, is an understatement. Tara’s husband, Josh, works from home which helps, but Tara is a preschool special-education teacher. She was out of paid sick days by the end of January of this year. Although both employers have been understanding of Brooke’s health situation, the family has taken a big hit financially.

remicadeWhen you’re going through this, you are spread so thin and it’s difficult to ask for help. We have another daughter, Haley, who is 10. Of course, when Brooke was in the hospital, either Josh or I were with her every minute. We live over an hour from Children’s Hospital in St. Louis, so it wasn’t possible to pop up for a quick visit. It was also hard for us to ask for support. We needed help mentally, financially, and logistically with many things. We have an AMAZING support system of family and friends who have helped us throughout this process.”

An advocate from the start

Brooke has been a true IBD warrior every step of the way. She doesn’t even cry anymore when she gets her IV. Brooke openly communicates about her diagnosis and is able to tell you which foods trigger symptoms, and which are safe for her to eat. She explained to me how she’ll have one strawberry at lunch at school, if it doesn’t “hurt her tummy” she has two strawberries the next day, and three the day after that. This little girl just gets it. Tara says in just a few short months, Brooke has already become a very good advocate for herself.

“Watching my baby go through this has changed me forever. IMG_2456Although I know she doesn’t know yet, what it really means to have Crohn’s, I am always so amazed by her strength. She talks about it very ‘matter-of-factly’. It doesn’t define her. I hope and pray constantly that anything that I encounter, I can deal with, the way she has dealt with this. It’s made our family stronger by seeing that we can face this together.”

A GoFundMe page has been created for Brooke and her family. Click here to submit a donation, every dollar helps!