Overcoming the self-injection scaries

This article is sponsored by Health Beacon. All thoughts and opinions shared are my own.

When I think back about the scariest moments I’ve experienced since my Crohn’s disease diagnosis more than 17 years ago, doing self-injections and the loading dose process tops the list. To go from being someone who didn’t rely on a biologic medication to function and treat my chronic illness, to mustering up the strength to inflict pain on myself, it took getting used to, to say the least.

I’ll never forget what it was like when I was first told I would need to choose between a self-injection and an infusion while lying in a hospital bed with a hardcore flare. It felt like trying to pick the lesser of two evils at the time. I chose self-injection for privacy reasons because at the time I was a television news anchor and hadn’t shared that I had inflammatory bowel disease (IBD) publicly. I also have terrible veins and the thought of having to get IVs and be hooked up for hours to a medication seemed less convenient and like more of a reminder that I was unwell. During that hospital visit it took 8 tries to start my IV, so the trauma of that helped guide my choice to do injections instead.

Going the self-injection route

When I started my biologic in 2008, there were only two medications on the market to manage and treat Crohn’s disease – Humira and Remicade. The injection (I was prescribed) at the time had a reputation for being painful and the loading dose involved four injections, back-to-back in one sitting. When my mom and I walked into my gastroenterologist’s office so the nurse could instruct me on how to give myself shots, I was shaking like a leaf. In the moment I wasn’t sure how I was going to muster up the strength not knowing how it would feel. My palms felt sweaty holding the foreign injector pen in my hand. I wasn’t sure how badly it was going to hurt. I was fearful of the side effects and what the heavy-duty medication was going to make me feel like. I wanted the nurse to do the first injection for me, and she wouldn’t. In the moment that made me upset, but now I am so grateful she put the onus and trust on me. I’ve never had anyone do my injections but myself.

I pressed the button and instantly felt the liquid fire pain shoot into my leg. I couldn’t believe I was expected to do that three more times. But I did. When the appointment was over, my mom and I hugged in the hallway. I felt like I had been through battle. It was terrible. Knowing that I had to do another two injections in two weeks loomed over me. Unfortunately, my initial loading dose made me very sick. As my body got acclimated to the medication, I felt weak and could barely walk up 13 stairs to my apartment. I had to miss work and social functions as my body got used to medicine.

Going through another round of loading doses

Fast forward to 2015. I had bowel resection surgery that involved the removal of 18 inches of my small intestine, appendix, and Meckel’s diverticulum. My care team had me go off my medication for three months—prior to surgery and after. Because of that, I had to do another loading dose and re-start the process. Even though I was already more than 8 years into doing the same injection, when my GI told me I would need to do another loading dose, my mind immediately raced back to 2008 and what I went through. I was so emotional I had to call into work sick that day. Luckily, this time around was a lot less scary, and I had more confidence in the process and knew exactly what to expect. I didn’t have any side effects after this loading dose, and I was back on track to my normal injection routine.

The shift to “pain-free” injections

The first couple years I did my injection, I would count down the days until the next one was due with dread and worry. I spent more than a decade on the painful version of the medication. In 2018, the formula for the medication was changed for patients in the United States, taking out the sting and making the gauge of the needle smaller. The loading dose now “only” involves two injections versus the four.

The “pain-free” version of the medication has completely changed my patient experience for the better. I no longer dread my shot. The process feels simple and nearly effortless. Even though I’ve been lucky to be afforded the opportunity and access to this version of the medication, I can still remember how it used to feel. The anxiety and emotions the injection would cause, and what I dealt with for 10 years of my life every other Monday.

Self-injection through pregnancy and motherhood

I am an IBD mom with three young children. Ages 5, 3, and 15 months. When I was first pregnant in 2016, it took a lot of guts and felt like an emotional rollercoaster injecting a biologic knowing there was a life growing inside of me. As the weeks turned to months and my belly got bigger and bigger it became more emotional feeling kicks and movement in my stomach while I was pressing the button to give myself the shot. Until my son was 1.5 years old, he witnessed how upset the injection would make me at times and would hug me and watch with empathetic eyes from a very young age.

When I tried the pain-free injection in 2018, I shot a video the first time I experienced it. This time around, I was pregnant with my second child. You can watch the emotional video here. As I express in the video, it was lifechanging to know that throughout future pregnancies and through motherhood, my children wouldn’t ever see their mom crying or scared while doing injections anymore. Now, when I do my shots, I have a big smile on my face and my children see their mom through a much different lens.

Keeping your eye on the prize

Whether you are gearing up for your loading dose or a veteran self-injector, it’s an experience that can be hard to put into words unless it’s your reality. It’s normal to grieve and be upset about your situation. Try to breathe. Go to your happy place. Get a focal point to focus on and know that you are doing all you can to help keep your disease under control and live the fullest life possible. Short term pain, long term gain in every sense of the word. Being scared no matter where you are in your patient journey is understandable, but like all pain and fearful experiences, they too shall pass.

Click here to learn more tips about self-injecting.

IBD on the College Campus: Getting the Medical Logistics in Check

Moving away from home and embarking on a college career is bittersweet. You’re excited. You’re anxious. You’re curious. So many emotions. The world is your oyster and you quickly discover what a small fish you are in this big world. For those entering college with an IBD diagnosis, life comes with many more challenges and fears. Medical concerns are a biggie. You are often forced to find an entirely new GI and care team that is local, in case you flare. You may have always counted on your parents to do your injections, now you may have to do them on your own. If you get infusions, you’ll need to find a new place to receive your medication, that may be out of your comfort zone and be complicated due to your course schedule.

That lack of comfort and consistency in care with a GI you know and have built trust with can be a scary chapter in your patient journey. IMG-0902Jennifer Badura’s son was diagnosed with Crohn’s while in high school. As a parent, she found her son’s transition to college challenging.

“It’s difficult to find a new place for getting lab work completed and a new place for infusions. Getting insurance, prior approvals, etc. along with the unknowns and anxiety about going to a new place for treatments and trying to get everything scheduled is tough.”

Dr Fu

Nancy Fu, BSc.(Pharm). MD. MHSc. FRCP(c), University of British Columbia

is a GI based in Vancouver, with research interests in IBD, infection and adolescent transition. She recommends making sure your primary GI connects you with a GI close to where you are attending school in case a flare requires urgent assessment.

“As a GI who sees adolescents, I make sure I am at least electronically available for my patients via texts or emails. Studies have shown young adults prefer to communicate via email as opposed to over the phone.”

Other recommendations that may be of help to you:

Get acclimated. Set up an appointment with a GI local to campus over the summer months or at the beginning of the school year, so you can build a solid relationship with a new physician. Keep your “hometown” GI’s number in your phone in case you’re flaring, hospitalized, or if your current GI has a question. hospital-840135_1920Use the patient portal to your advantage. Never hesitate to reach out if you have a question or medical issue going on. Listen to your body’s signals and don’t wait until it’s too late.

Make sure you remain compliant and manage your disease. Have enough medication on hand and have a game plan in place for how you’ll receive refills—whether it’s your parents bringing your prescriptions to you, mailing them to you, or you physically picking your medication up from a nearby pharmacy. laboratory-313864_1920Set reminders in your phone or utilize apps that track your symptoms and whether you’ve taken your medication.

Keep your prescriptions in a safe, undisclosed place. Let’s keep it real. Chances are there will be someone on your floor or even a roommate who may want to get their hands on your prescriptions, specifically your pain medications. Don’t flaunt them. Keep them hidden. Count your pills each day if you need to.

Discover local support and build a new support community. Being away from home and away from your personal support network is daunting. Check out the local Crohn’s and Colitis Foundation chapter near your campus and connect with local people who understand your reality. See if new friends from campus want to join you for a local IBD charity event. Not only will this be uplifting for you, but it will open their eyes and give them a bit of perspective about what life with IBD entails.

Click here to check out IBD on the College Campus: The Challenge of Academics.