What I Wish I Knew About Medication Years Ago
Last updated: July 2022
#1. Medication is not poison
I used to refuse to take my medicine, calling it “poison.” I suppose you could make the argument that it is depending on which angle you look at it from. But to me, medication is now a good chance at my best quality of life.
In my mind, I used to think that taking medication would make me even more diseased and "un-pure" inside compared to not taking it. I had this idea that if I just strictly controlled my diet and tried "natural" medicine that I would be OK and I wouldn’t be letting medicine destroy my body.
Years later I’ve seen firsthand what happens when you don’t have access to treatment due to not having health insurance or simply refusing available treatment. I’ve had long hospitalizations, 3 major emergency surgeries, and several complications that probably could have been avoided.
Science has proven that even if you’re feeling well that you still could have active intestinal inflammation, called a subclinical flare. It’s important to keep taking your medication even when you feel well and I wish I would have a long time ago.
#2. Medication can change the natural course of disease
IBD is a chronic progressive disease much like Rheumatoid arthritis, type 2 diabetes, and hypertension. The longer IBD goes untreated or under-treated the higher your risk for surgeries, hospitalizations, complications, and disability.
This is the natural course of disease for most patients over time. With newer and more effective treatments available today for the management of IBD we have learned that mucosal healing can be an effective target as a prognostic marker of long-term disease. Chronic inflammation is what causes the permanent damage in the bowel and effectively managing it with available therapies allows us to change the natural course of IBD. Your doctor should have evidence-based treatment targets for your best success and not rely solely on your symptoms.
#3. Prednisone should not be used long term
For a large portion of my time with Crohn’s disease prednisone was one of the only treatments I used. Part of that was because it was one of the only treatments available but that changed when I was a teenager and biologics were approved.
Prednisone works well and it works fast but it should not be used long term. Prednisone stops working after using it for a long time so it is not an effective maintenance medication and it has horrible and/or dangerous side-effects including cataracts, bone loss, moon face, severe acne, diabetes, sleep disturbance, and emotional stress.
Prednisone should be used as a “rescue medication” to induce remission while you transition to a maintenance medication. When your doctor prescribes prednisone they should prescribe it with an exit plan, which is a plan for stopping steroids. Prednisone can be a very helpful and necessary medication at times but it should definitely not be used long term.
What has been the most helpful for managing IBD symptoms?