IBD Treatments: A Love/Hate Story of Risk/Benefit Analysis

Pill bottle with side effect warning labels.It appears that there are only two possible responses to the fine print that comes with our prescriptions and IBD treatments. Either we’re put to sleep with the boring tedium of it all, or, if we’re paying attention, we could easily come to sheer panic.

We are bombarded with a frightening list of all the bad things that not only could happen as a result of these medications, but things that have actually happened to patients. We consider the probability of complication X or Y and wonder if we’re at risk. Often we find it difficult to imagine these bad things not happening to us. If it happened to someone else it could happen to me, we say to ourselves. At some point the calming effect of reason steps in and helps us realize that the chances are only one-in-so-many that we will experience those dreaded results.

We go on the internet for reassurance, to read what other people are saying. But often this doesn’t help; instead it only feeds our fears. We read some horror stories—maybe even a lot of them. This makes the risk seem more real as we confront the personal accounts. But the trouble is that these comments are typically written by a self-selecting subgroup of patients who had experiences bad enough to seek out a place to share the news. The people who have normal—or even good—experiences don’t generally preach their unremarkable stories, diminishing their presence in the big picture. This concentrates our exposure toward the dramatic tales and misleads us into paranoia.

That isn’t to say, however, that the risks aren’t real. It certainly is possible for bad things to happen. However, a critical piece of perspective is missing from most of what we hear and consider when making treatment decisions... by far, the largest risk to our health is uncontrolled disease. The likelihood of severe complications arising from lack of treatment is FAR higher than the probability of experiencing the potential harm of most medicines. Don’t underestimate the difference here; we are talking several hundred to several thousand times more likely.

For example, the risk of requiring surgery for untreated disease is roughly 20 percent for ulcerative colitis (or one in five cases) and 80 percent for Crohn’s disease (four out of five cases), which is extremely high—not to mention that the symptoms for these patients would likely be quite miserable. By comparison, the incidence of severe complications from some of the newer IBD medications is in the range of one to six out of ten-thousand cases. That’s a difference factor of more than three thousand. The key is to do your homework. Understand the risks for each medication, balance these against the dangers of going untreated, and make a well-informed decision.

While I can certainly appreciate the irony of medication that comes with troublesome side effects and (albeit unlikely) risks of scarier consequences, I have to realize that the best way to reduce my chance of dangerous complications is to keep my disease under control. With this in mind, it can be much easier to swallow that pill, take that shot, go in for that infusion, or even stick to that diet. And, of course, when the treatments make us feel better, as they should, we discover the most important motivation of all.

The CCFA has an excellent series of IBD-related educational webcasts, including a great program on the benefits and risks of treatments. They also publish a series of helpful brochures, including one on understanding medications and side effects

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About the Author

Andrew Tubesing is an acclaimed advocate and humorist on the subject of inflammatory bowel disease.