Fear of Losing My Current IBD Treatment

My road to Crohn’s disease diagnosis was lengthy and frustrating. Something that, unfortunately, I know many of you can relate to.

My pathway to finding the best treatment option for me was a bit more direct, but still took several rounds of trial and error. Every single day during that period, I felt afraid. I felt sad. I often felt hopeless.

My life was riddled with doctors' appointments, tests, procedures, and hospital stays, and when I was at home, I was too sick to function, to think straight, or to remember who I was before those days.

When you find an IBD treatment that works

Nearly 8.5 years after I began experiencing symptoms of IBD, I finally found the right medication to manage my disease. Then, it took another 9 months to find the right dosing and frequency of medication to get me into remission.

It felt like magic and also so much hard work to get to that place.

Managing my treatment carefully

For the last 3 years, I’ve literally managed my relationship with Remicade incredibly closely. Ensuring my infusion schedule is lined up several months in advance, never ever missing a dose, going in for regular, routine labs, monitoring the antibody levels in my bloodstream, watching my symptoms for increase or decrease, and communicating with my care team about any changes.

I’ve never ever taken for granted the way I feel on this medication, almost as if I have my pre-Crohn’s life back, and I’d do almost anything to continue in this space where routine infusions provide me the health and strength that allows me to function, parent, work and live out loud.

In addition, being on Remicade has given me the health, security, and opportunity to safely go through fertility treatments, have a healthy pregnancy, natural labor and delivery, and to breastfeed my daughter, without flaring or missing a single infusion. This has been, in my opinion, the greatest blessing, and one I hope I get to experience again one day soon.

With all of these advantages, my gratitude and hope sit beside my fear and worry. 

Fear my treatment would stop working

At the beginning of the COVID-19 pandemic, my Crohn’s disease symptoms increased. Labs and imaging helped my doctor to make the decision that we’d move my infusions from every 6 weeks to every 5, helping me to get through the end of my cycle without the fear of a flare-up. It has made a great difference, and I continue to be so thankful for my access to and response to this medication.

Recently, I’ve again noticed an increase in symptoms. From the gnawing pain in my upper abdomen to the increased urgency to run for the restroom, and the all-encompassing body sweats while my bowels evacuate over and over again into the toilet, my anxiety over both my remission status and my tenure with Remicade has been skyrocketing.

You see, as someone who currently receives 10mg/kg every 5 weeks, I only have a few adjustment options left on this medication before I will need a different option.

Discussing treatment fears with my doctor

I scheduled a telehealth appointment with my gastroenterologist to discuss all of this and more with her, to learn what my other options are to preserve my health and my relationship with Remicade. But I have to be honest. The fear and worry I feel are increasing exponentially.

I know there are other treatment options available, but some of the choices I have already tried and failed, and others don’t have the same safety or research for pregnancy and breastfeeding that I’d like to see.

If you’ve had a periodic series of increasing symptoms while you were in remission or well-managed with medication, what did you do? How did you counteract the daily challenges? Were you able to stay on your medication? I’d love to hear your experiences below!