Whether you were diagnosed with IBD during childhood, college bound years, or later in life, chances are you've been on a slew of medications. When I was first diagnosed with Crohn's disease, I was prescribed asacol. This is a medication that is included in the 5-aminosalicylic acids (5-ASA). Patients are often started on one of these medications early in the diagnosis process because they're the most mild.
On the contrary, this tiny green pill made me throw up, lose my hair and a lot of other unpleasant side effects. It's now forever on my list of allergies. This prompted a switch to balsalazide, which also falls under the 5ASA umbrella. I was incredibly lucky that I only had to try a few medications before I found one that quelled my symptoms, and landed me in remission. That being said, Crohn's disease is progressive, so after being on balsalazide for 14 years, the 9 horse pills I had been taking each and every day, was no longer working. Enter Humira. HUMIRA is a biologic and a specialty medicine obtained from a specialty pharmacy. This injected medicine is a TNF-alpha blocker. HUMIRA targets and blocks TNF-alpha in your body. The hope and goal of starting Humira is to heal the inflammation, and obtain remission.
Humira had been on the table for discussion a few times, but I vehemently rejected the idea of taking it. I'm not scared of much, but this medication terrified me. You've seen the commercials. The long list of serious side effects completely overshadows the smiling faces showing you that your life can resume as normal. My feelings about biologics started to change though when I ended up in the hospital just before Christmas last year. My Calprotectin level was upwards of 8,000 (normal range is <49). Calprotectin is a protein manufactured by white blood cells in response to inflammation. When there’s inflammation in the intestines, white blood cells called neutrophils travel to that area of the body and release calprotectin in an effort to fight off disease or infection (Healthline).
My. intensities were inflamed, my colon was inflamed (see pictures of my colon on the right)......my medication stopped working and steroids weren't getting my flare under control. The GI team at the hospital all concurred that I needed to start Humira, and quickly. My opinion of biologics started shifting now that my life was on the line.
I suppose my main fear was starting an immunosuppressant during a global pandemic when 50% of the population still refuses to get vaccinated. What I realized is that it's okay to be scared. It's okay to feel all of the feels. I needed to be scared. I needed to cry. I needed to be angry. I needed to process all of these emotions to accept the progression of of my once mild to severe Crohn's. After many conversations (did I mention I ask A LOT of questions as a patient) on Humira with the highly educated UW doctors, I felt safe in trusting their knowledge and the science behind all of the research to guide me to a better quality of life.
When making a medication switch it's also important to have someone to talk to that has IBD experience (other than a doctor) who has walked in your shoes, or has already blazed the trail for you. I would be remiss if I didn't mention my mentor and friend, Natalie Hayden of Lights Camera Blog. She's a fellow Crohnie, mother of 3 littles as well, and an accomplished blogger. Natalie was sending me messages as I lay in my hospital bed. Her advice, continued support and encouragement has made my medication transition a little less scary, and a lot more exciting. Exciting because I've changed my attitude. I am getting my health back. I am getting my life back. Thank you Natalie for your sage advice.
I've compiled a short list of helpful tidbits if you're thinking of switching to biologics.
Do your own research on biologics. Your GI doctor will help in making the decision as to what biologic you should be taking, but it's helpful to know about all of the medications available to you. There are different biologics, and what works for one individual doesn't necessary work for the next. Knowing the side effects is important, but try not to go down the google rabbit hole. I feel it's more important to focus on the wonderful benefits of switching to a biologic, rather than get stuck on all of the "what ifs."
If you're also prescribed Humira, sign up as a member on their website. You will be assigned a personal nurse, your Ambvie Ambassador. It's different for everyone, but my nurse (we're on a first name basis, but she will remain anonymous) checks in with me weekly. This is a dedicated time for me to ask questions about Humira, talk about my challenges with Crohn's disease, and anything else I want to share.
Find yourself an IBD mentor. I can't stress this enough. Fear of the unknown is often the hardest part when making a difficult decision, but having someone to talk to who has been through it already, or has experienced everything you're going through is worth its weight in gold. The Crohn's and Colitis has a program called the Power of Two . If you have IBD, but don't have a support network, this is an excellent place to start.
Sign up for Humira Complete. This is a tool and resource available to you on Humira's website. Check it out HERE
Focus on the reasons why you might need to to make the switch. Keep your eyes on the prize baby. Mine are below.