Medication Crossroads: Somewhere Between Comfort and Change

Since being diagnosed with ulcerative colitis (UC) almost six years ago, I’ve taken mesalamine religiously. Whether it was two of the pills when things were good or four when things were not as good, I’ve gotten used to the ritual of those red pills each evening. In the worst of times, there have been steroids or suppositories to accompany the large red pills, but the pills themselves have always been there helping keep this disease in check.

Unfortunately, the worst of times have been more frequent lately, leaving me to question whether these red pills are doing enough or if I should move on to something new.

Symptoms increasing

I started questioning my faithful red pills when I noticed that the so-called maintenance dose was no longer maintaining things as well. After a round of steroids to calm a flare and the addition of mesalamine suppositories, I kept trying to get back to my standard dose of two pills a day. Unfortunately, my body wasn’t on board with this plan.

I would feel that my symptoms were well-controlled, reduce my dose, and then find that my symptoms slowly started to increase again. Even on four pills a day, a dose that had previously only been necessary during a flare-up, I sometimes needed the additional support of suppositories to keep my symptoms in check.

That’s when I began considering whether it was time to move on to another medication.

Discussing with my GI

I prepared for my next meeting with my GI doctor by typing up some notes on how my symptoms had been changing over time and the pattern I had noticed of experiencing more flare-ups in the last year or two. At my appointment, I shared these notes with my doctor who agreed that I could be a good candidate for starting a biologic.

We discussed my preferences for medication, and he shared information about a couple of medications that would likely be a good fit for me. My symptoms weren’t urgent enough to necessitate an immediate decision, so he agreed to let me have some time to think about my options. In the meantime, he wanted me to complete some tests so that he could get more data on how I was doing.

What is the right decision?

Since that appointment, my symptoms have continued to wax and wane. I’ve spent so much time reading about the two biologic medications my doctor had suggested. Unfortunately, despite all that time spent reading, there is no web search that can tell you what decision to make. My mind has been a swirl of thoughts. I worry about what side effects I might experience, whether a new drug would work for me (and for how long), and if I’ll make the right decision.

Mesalamine

I can’t explain the strange attachment I feel to mesalamine, even to myself. What I do know is that I’m not quite ready to move on. I can’t say whether this is the right decision, but it is the one I’m comfortable with for now.

In a follow-up appointment with my doctor, I voiced all my hesitations and current feelings. Together, we agreed to take a wait and see approach this year, unless my symptoms increase to the extent that a change becomes necessary.

Ultimately, I’ve realized that there isn’t always a clear answer to when to move on, and we all have different thresholds for that milestone. For now, I’ll keep clinging to my not-so-little red pills.