The Patient Experience: What the IBD Community Says About Remicade

It was the first biologic created to treat Crohn’s disease (and later ulcerative colitis). Remicade (Infliximab) was approved by the FDA in 1998 for Crohn’s and 2005 for UC. The medication set the stage for a new way of treating and targeting IBD. A lot has changed in the last 23 years when it comes to treating IBD with biologics (Crohn’s and Colitis Foundation Biologic Fact Sheet). As patients we’re “lucky” that more options are available, and several medications are on the horizon. But Remicade remains a tried-and-true treatment option for IBD patients.

A few weeks back, I shared an article on my blog entitled, “The Patient Experience: What The IBD Community Says About Entyvio.” The article featured viewpoints, experiences, and tips/tricks from several people with IBD who are currently taking Entyvio or have in the past. That article and this one have NO affiliation or guidance from pharma. This is strictly created from the IBD patient experience.

The discussion on Entyvio was well-received and from there, I decided to do an exposé if you will, about other biologics, too. When I was told I needed to start a biologic while lying in a hospital bed in 2008, my mind was racing. I felt like I had nowhere to turn. There were only two options at the time. I didn’t know what resource to trust or where to go for information. My hope is that these articles help comfort you as you make these important, lifechanging health decisions, and alleviate a bit of the fear associated with being on a biologic drug long-term. Use these candid quotes to serve as your roadmap to navigate the unknown.

Before we dig deep into Remicade from the patient and caregiver perspective—a reminder that much like the way IBD presents and manifests in each of us, each person’s experience with biologics is unique to them. Remember that your experience could be better and could be worse.

What does anti-TNF mean?

Each biologic is associated as a class of drug. Remicade is an anti-TNF, meaning that the medication blocks a protein in your immune system called TNF-alpha. That protein can cause inflammation in your body. People with IBD produce too much TNF-alpha, which can cause our immune systems to mistakenly attack cells in the GI tract. Anti-TNF biologics work to regulate this protein in our bodies.

The Patient Voice

In this article you’ll hear from those who just started Remicade in the last week to someone who has been receiving infusions for 21 years! Thanks to each and every person who offered input, I wasn’t able to feature everyone’s perspective, but your narrative helped guide this piece.

Amanda Rowe started Remicade nine months ago. She was hesitant to start a biologic, but ever since taking the plunge, she hasn’t looked back.

“I haven’t had any issues. I get pre-meds of Benadryl and Solumedrol because I got slightly itchy during one infusion. It’s a nice quiet time to sleep or I bring my phone and earbuds and watch a show. It’s 2 hours where I get a break from hearing, “Mom, I need…” I currently have no active disease after being in a bad flare for two years. I flared that long because I was afraid of starting a biologic. My GI explained everything to me and calmed my fears about possible side effects and I finally agreed. I just wish I would have started Remicade sooner, so I could have felt the way I do now.”

Phylicia Petit has Crohn’s and has been receiving Remicade infusions since she was a teenager 11 years ago, she’s grateful the biologic has worked well for her.

I’ve had a dosage increase and have added mesalamine for better inflammation control. Other than those changes, I’ve been relatively symptom-free, which is a major blessing! I would highly recommend having home health do your infusions. I haven’t had to take off work for my infusions and it’s so nice to be in the comfort of my home…especially with COVID! It’s also cheaper for insurance. I use Janssen Care Path for financial help. It helps to cover your infusion costs. I fortunately have never had any side effects.”

IBD is a family affair for Kara Cady. She has ulcerative colitis; her dad was diagnosed with Crohn’s as a teen and her little sister was recently diagnosed with UC. She just started Remicade last week.

“I’m still on the loading doses. The infusion process is long! It’s about 3 hours for me. I am able to get mine at my GI’s office. I can bring my laptop and work from there. I was super nervous for my initial dose, but my main “issues” are feeling tired, and having a headache and sore throat after. I’m looking forward to getting on my regular Remicade schedule, as I’ve been in flare for about 6 months.”

Laura Steiner is a nurse practitioner with ulcerative colitis who has depended on Remicade for over seven years.

“I have had to increase my dosage and shorten the interval but continue to stay in remission while on it. I’m usually wiped out the day of and the day after. I get my infusions on Fridays, so I have the weekend to recover. The only downside is many major insurance companies are forcing patients to switch to biosimilars, so after 62 doses of Remicade, my next infusion in June will be Inflectra. I’m hoping it will work equally as well.”

Laura is not alone in this fear and dealing with barriers to care and insurance coverage is a reality for many. While working on this article, a social worker from an insurance company reached out to me and said in the last week alone she’s dealt with several cases of people who have had their Remicade denied. She’s helping them through appeals. Until you’re a person who is dependent on a medication for improved quality of life, where timing is of the essence for receiving it, it’s difficult to grasp the magnitude and the pressure of not being able to receive your medication when you need it and risking a flare spiraling out of control or losing your remission.

Meg Bender-Stephanski was on Remicade to treat her Crohn’s for about a year and half. It worked well for her, but she says the infusions were not only inconvenient but costly, so she ended up switching biologics.

I was going to college in Oregon while my main insurance was based in California, and the out of pocket costs the first few infusions in Oregon were around $18,000. It ended up being cheaper for me to fly home every 8 weeks for an infusion than it was to receive it in Oregon! I also really wanted to study abroad, and it was incredibly difficult to figure out the logistics. Remicade did work well for me and sometimes I have regrets for switching off it for personal reasons.”

Advice for Infusion Days

Kelly Dwyer was diagnosed with Crohn’s in 2018, but experienced symptoms for several years prior. She has great advice for gearing up for infusion day and beyond.

  • Take along a caregiver for your first infusion, if you can, just in case you have a reaction.
  • Make sure you make a plan for pre-meds or no pre-meds with your GI before you go to the infusion center, so you don’t get surprised by their policies. Kelly takes Zyrtec the night before, so she doesn’t get drowsy and Tylenol right before the infusion to alleviate the headaches she gets towards the end of an infusion.
  • The first few infusions should be slow infusions, to make sure you don’t have a reaction. Kelly has continued to receive hers at a slow rate (2-2.5 hours) because her blood pressure tends to bottom out when the Remicade is pushed to a higher rate. But for many, a higher rate works and helps the infusion go quicker.
  • Switch arms and spots for your IV. Kelly says she saves her “big veins” for times when the nurses need to do a blood draw before the infusion and have to use a larger gauge needle.
  • Hydrate well the morning of the infusion and bring along a heating pad, as it may help to wrap it around your arm if you’re dehydrated before the IV is started.
  • Openly communicate with your infusion nurses. Let them know if you feel weird or off in any way. Nurses have seen it all and can be very reassuring and helpful, but you need to give them feedback so they can help you and act right away if you’re starting to feel poorly.
  • Your reaction one day may be different the next. Kelly says she doesn’t have consistent reactions each time, so it’s important to be vigilant and always be prepared to expect the unexpected.
  • For Kelly, she doesn’t start to feel the effects of Remicade for a few hours after the infusion. She gradually starts to feel more and more grumpy and tired. She gets a very particular kind of fatigue the day of her infusion. She says it’s a very numbing, all-encompassing, tiring feeling.
  • Be aware of what dosage you’ve been prescribed. Understand there are several variables that your GI can change if the Remicade isn’t working immediately or enough. The interval time between infusions can be shortened, and/or the concentration of the medication can be increased.
  • Remicade is often given with other immunomodulators, like Methotrexate. Talk with your GI about scheduling and timing for the infusions with your other medications.
  • If you’re just getting started on a biologic, your GI will likely tell you to get vaccinated for Shingles and Pneumonia before starting. You’ll also need to do an annual TB test.

Kelly also advises patients to be aware of insurance companies in the United States. Like we touched on at the start of this article, she says many are requiring people to switch from the brand name Remicade to a biosimilar of Infliximab.

“I’m making the switch over at my next infusion in July and my GI and I agreed that we felt confident on the data out of Europe about the efficacy of biosimilars. I recommend everyone with IBD to do their own research and have this conversation with your GI. Be proactive and prepared to discuss options when the time comes with your insurance company.”

Balancing the Logistics of Infusions and Work/Life

Megan Alloway has counted on Remicade to keep her Crohn’s under control for 21 years. She prefers to get her infusions on Friday so she can use the weekends to recoup because it makes her so exhausted.

“While Remicade has been a blessing to me for over two decades, it feels like every time I turn around, it’s time for another infusion.”

An OBGYN with Crohn’s who wished to remain anonymous, has been on Remicade since she was 18. She’s now 35 and still receives her infusions every six weeks. She credits Remicade for giving her a full quality of life and enabling her to stay out of the hospital.

“Since starting Remicade, I have been able to finish college, med school, and residency with my symptoms under control. I’ve stayed out the hospital ever since I started Remicade. My main complaint is how long the infusions take. Different infusion centers have different protocols and requirements, but usually mine take over two hours. It’s annoying to find that kind of time on a weekday and be able to take care of my own patients, but I have to do it for my health.”

Heather Richter agrees the time an infusion takes can be inconvenient, but she’s learned to make the most of the “me” time as an IBD mom with Crohn’s disease.

I’ve learned to embrace the “alone” time. Be persistent at your infusions and if something seems off to you, speak up and make sure you feel like you’re being listened to. My infusion nurse gives me Benadryl and Tylenol beforehand, so if I have the kids taken care of, I find it helpful to nap and rest afterwards.”

Kristi Reppel has been taking on Crohn’s for 18 years. She received Remicade from December 2005 until August 2011. She switched biologics for a lifestyle change and started Cimzia in September 2016. She ended up back on Remicade in December 2016. She currently received 7.5 mg/k every 4 weeks instead of the typical 6-8 weeks.

This biologic works for me. It gets me in remission and keeps me there. I am a lot less symptomatic, thanks to my medicine. The bad part of all this is my veins are scarring over because I only have a few good ones and those are almost gone. The post infusion exhaustion and headache can also be a lot. As an attorney, finding the time to sit through an infusion and schedule it around court room hearings can be rough. I cannot recommend enough about the importance of hydrating with water that has electrolytes like Smart Water around infusion day. It’s made a big difference for me!”

Linde Joy Parcels says Remicade allowed her to reach remission in high school. She had swollen and painful joints, and after starting the biologic, she experienced a complete transformation.

“Unfortunately, I metabolized Remicade too quickly and had to transition to Humira after one year. I loved getting to take a day off school while on Remicade and spent my infusions relaxing with my mom watching soap operas. That was the silver lining for me!”

The Caregiver Perspective—from a wife to moms of pediatric patients

Remicade has been a lifesaver for Rebecca Kaplan’s husband. Before starting a biologic, she says his Crohn’s was not well-controlled. He was on one medication, going to the bathroom 25-30 times a day. By the time her husband started Remicade, the damage had already been done and was irreversible, so they didn’t see the true impact of the biologic until after he had bowel resection surgery.

He’s been on Remicade for 11 years this summer and in that time, he’s been able to graduate with a master’s degree, work full time, work out, play softball, and attend family functions. He’s also put on close to 45 pounds and gone from malnourished and underweight to thriving.

“Remicade isn’t picture perfect – the few days after his infusion I like to say he becomes a toddler who can’t control their emotions. He’s extremely irritable and says it feels like his brain is on fire. He gets sinus infections more often than before (and apparently that’s not uncommon when you are on a biologic), and he still has some symptoms from time to time. But his last colonoscopy showed that he is in deep remission, and I know that he wouldn’t have achieved that without being on Remicade.”

Rebecca waiting in the car (thanks to COVID) while her husband receives his Remicade infusion.

Alexia Anastasia’s 11-year-old daughter started Remicade in February. The list of side effects and hearing a horror story from a friend who “had a friend who had a stroke” made her a nervous wreck. Ultimately, she looked at the research and the long history of pediatric use of Remicade and felt she was making the right decision alongside her daughter’s GI.

“It’s been a game changer. We learned quickly my daughter needs it every 4 weeks after trying to go for 6 weeks. I’m so grateful it seems to be working. Her fecal calprotectin is almost normal from originally being 3,460. Her inflammatory markers are back to normal. I just hope it keeps working and the side effects remain minimal. It’s been a challenging 5 months with this new diagnosis. Now that I can reflect, I’m grateful my daughter’s GI pushed for us to start a biologic immediately. My daughter was withering away before my eyes and now she is back on track.”

Beth Otto-Stapleton’s daughter Penny started on Remicade when she was diagnosed with Crohn’s disease in January 2017 at age four. She was given two infusions a few days apart while hospitalized during her first flare. Unfortunately, that is when Penny suffered heart damage and was diagnosed with heart failure because of the Remicade.

“She now does Vedolizumab infusions instead because it is a different class of biologic. We are thankful as a pediatric patient, Penny can go to a Children’s Hospital for treatments…it keeps the hard parts of the disease there and keeps our home a safe/comfy space. The great part about the infusions is that we also get blood work done and get instant feedback. I always ask the infusion nurse to give her an extra bag of fluids so she’s well hydrated.”

Dermatological Side Effects

While talking with patients about their Remicade experience, skin issues came up in a few conversations. 

Remicade was the first biologic Dana Drengler tried. She says it worked the best and the longest for her. She was in full remission and lived a normal life while on it. Unfortunately, after about 3 years in, she started to develop red spots on her lower legs. They looked like broken blood vessels at first, but then started to spread and get larger, eventually turning into deep and painful ulcers.

“The ulcers covered my lower legs and became super painful, to the point where I couldn’t walk some days. It stumped my doctors, and they only thing they could think of was that it was a reaction to Remicade. They had me stop taking it and within a few months, my legs started to heal. I still have scars 5 years later!”

Mia Frakes has been using Remicade to control her Crohn’s inflammation since 2017, overall, she feels the medication does the trick, but she has what she calls the “oddest side effect”.

“I’ve been dealing with extremely red, dry, and flaky skin in strange areas like behind my ears and my belly button. My GI says she has seen this dry skin in other patients, too. I have to go to the dermatologist, and they give me topical medication to put on the dry areas, which seems to help.”

Madelynn Jessberger was diagnosed with Crohn’s in 2008, she’s been on Remicade the last three years. She was receiving infusions prior to getting her colon removed and was put back on the biologic after. Aside from some aches and tiredness after infusions, she also developed a rash.

“I developed psoriasis all over my body and my GI is unsure if it’s a side effect, a separate autoimmune disease, or an extra intestinal manifestation of Crohn’s. I manage the rash with thick creams and topical medicine from my dermatologist. Everyone is different, this is just my experience.”

Pregnancy + Motherhood and Remicade

Alyssa Leggett started Remicade in August 2018. At first, she was getting infusions every 8 weeks. Then, in 2019, two weeks before an infusion she started feeling fatigued and was dealing with urgency, pain, and diarrhea. Because of those symptoms, her infusions were moved to every 6 weeks.

After I gave birth, my doctor wanted to switch me to the rapid rate infusion. I’ve been doing those since November 2020. They’re about an hour shorter and I don’t have any side effects from them. I feel like I can have a more stable life. I still get symptoms from time to time, but I attribute that to the food I eat. Thanks to Remicade, I reached remission and had a healthy, full-term pregnancy.”

Allie Heiman is grateful for how Remicade has helped prepare her body for motherhood.

I haven’t had any side effects from Remicade and have found the infusion to be easiest in my hand with only minor bruising the next day or two. I started in March 2020 and was cleared to start trying for pregnancy in December 2020. After 13 years of negative scope results and being told I was not healthy enough for pregnancy, I could not be more thrilled with the outcome. I am hopeful to be a mom in the future, and grateful that Remicade made that a possibility with Crohn’s.”

Tayler Jansen is an IBD mom of two. Remicade has been amazing! Remicade and Imuran have kept me in remission for the past 9 years and enabled me to have two healthy pregnancies.”

Shakila Almirantearena has identical 5-year-old twin girls. She was diagnosed with Crohn’s shortly after they were born and is currently in remission. Along with Remicade, she takes Methotrexate.

 “I take Tylenol and Claritin at the infusion center to prevent any rash, etc. I usually take the whole day off work and really allow my body to rest. I haven’t had any major side effects. I’m usually tired the next few days and sometimes get a headache the day after my infusion, but Tylenol helps alleviate any pain.”

Christine Renee has had Crohn’s for 20 years, she’s a mom of two teens and a teacher.

“Remicade was a game changer for me compared to the previous meds I was on. I eventually developed antibodies to it, and it wasn’t as effective. My tips for those getting started are to not be afraid. I was so nervous about starting a biologic, but after the way I was feeling and the tests that my doctor performed, I knew it was the right thing to do. I started Stelara a few days ago and I’m hoping for similar results.”

IBD Parenthood Project

IBD Moms

Mamas Facing Forward

Pregnancy in Inflammatory Bowel Disease and NeoNatal Outcomes (PIANO) Study

Remicade and Pregnancy (MotherToBaby)

Other Helpful Remicade “Hacks”

  • Bring a phone charger to your infusions.
  • Dress comfortably.
  • Hydrate well the day before, day of, and day after.
  • Remember your headphones or AirPods so you can drown out the noise and watch a movie or show. Noise canceling headphones for the win!
  • Pack games and books to pass the time or your laptop so you can work.
  • Have someone else drive you when possible, in case you are drowsy from the Benadryl.
  • Pack snacks and drinks. Many infusion centers will also have this available for you.
  • Have a sweater or blanket!
    • Lauren Hopkins has been on Remicade well over a decade and receives what’s considered a “double dose” every 5 weeks. She’s found her sweet spot and has been able to maintain remission. She says, “Refrigerated Remicade mixed with room temperature saline feels COLD pumping into your veins. It shouldn’t hurt, so if it does, say something to your nurse so they can fix your IV.”
  • Have the Infusion Nurse run saline before and after your infusion to help with headaches.
  • Be your own best advocate. Speak up to your care team if something feels off, if your symptoms are persisting, or if you’re dealing with side effects that make your life challenging.
  • Remember if a biologic fails—it’s not on you, you didn’t fail anything, the drug failed you.

Video: What to Expect at a Remicade infusion(Credit: Crohn’s and Colitis Young Adults Network)

Stuff That Works: Insights on Infliximab

Crohn’s and COVID: Hear one IBD mom’s experience battling both

Imagine having a fever for 31 days along with debilitating fatigue, a scratchy throat, cough, and trouble breathing. That was the case for Jessica I., age 34, of St. Louis. She is a COVID survivor, a Crohn’s warrior on immunosuppressant medications, a wife, a mom to two little ones, and an attorney.

Hindsight is 20-20 and of course we know a bit more about COVID-19 now than we did when quarantine and chaos ensued in mid-March, but let me take you back to how this all went down for Jessica and her family. DSC00747

Her daughters, age 4 and 19 months go to the same preschool and daycare. Their last day was March 11th. Jessica received an email from the director of the school saying a record number of teachers and students were out with the flu and strep. Except later it was determined the sickness going around the school was COVID-19. Two teachers landed in the ICU and multiple kids and parents tested positive in her older daughter’s class.

How the symptoms presented

“The first change was extreme fatigue and a scratchy throat, almost like cotton balls were stuck in my throat. Two days later I started with a low-grade fever. I felt pretty lousy for three days—fever, chills, and aches,” says Jessica. “I had one day where I felt better (March 26), but the following day I felt worse than before with a much higher fever and I had a dry cough. I felt constriction in my chest with every breath I took.”

Jessica’s husband was proactive and had ordered the family a pulse ox back in February, so she was able to monitor her oxygenation throughout her illness. She never dipped below 92, but the chills, painful aches, headaches, and fever from 99-101 stayed with her for over a month.

Still not 100%

“Though I no longer have a fever, I still have good days and bad days. I still have chills, aches, and extreme fatigue. It’s way more manageable, but I’m definitely not 100%,” says Jessica. “Luckily, I did not have the smell and taste issues, but because I felt so awful, I’ve lost 25 pounds.” 20190921_161434

Jessica is grateful her Crohn’s disease has not caused her problems in recent weeks. Diagnosed at age 12, IBD has been a part of her life for as long as she can remember.

She had two bad flares during her second pregnancy and most recently an eight-month flare last year. When her Remicade infusion was due this month, her GI was adamant she stay on schedule since she no longer had a fever. Jessica was terrified about getting a biologic on the heels of having COVID-19, so she chose to extend her medication schedule by one week. Her worries were justified.

“In 2006, I got my Remicade when I had mono (hadn’t known at the time) and got encephalitis and had to be in a UK hospital in the ICU for a month. I lost my ability to talk. I almost died. My GI doctor knows of this history, but insisted that I needed my Remicade because of my history of getting flares the last few years.”

Despite her apprehension, Jessica trusted her long-time physician’s recommendations and stayed on her Remicade and Imuran.

Balancing motherhood while fighting COVID-19

The first 12 days, Jessica isolated herself from her family in her master bedroom. Her husband worked a full-time job from home, while taking care of both girls on his own. Once Jessica’s fever persisted after two weeks, they decided as a family to have her come out of isolation because the burden was nearly impossible for her husband to continue to take on. Igielnik-8

“We knew almost for sure that my children were asymptomatic and gave me COVID-19. The next two weeks anytime I was out of my room I wore a mask and gloves. I didn’t make any food. This was so hard because I was still extremely sick and was just supervising play and TV watching for my girls. To this day, my husband and I are still sleeping in different rooms and not hugging and I’m not going anywhere near his food.”

Jessica’s husband is an avid news consumer and was following everything that was happening in China. He started to stockpile food and wipes back in January. Friends thought he was overreacting. His grandparents are Holocaust survivors. Jessica credits his “alertness” to that.

What Jessica wants people to know

Even though Jessica was able to fight the illness without being hospitalized, she says if we weren’t in the middle of a pandemic, she would have gone to the hospital in “normal” times.

“Mild COVID isn’t mild COVID. What I had was considered mild and I was so sick for so long…and I’m still not feeling completely better. I think people would change their mind about the severity of this if they knew someone who had COVID-19 or they themselves experienced it.”

To this day, Jessica still has chest pain and backaches. Her care team believe she has inflammation in her lungs because she was sick for so long.

 

 

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!