Posted 1/12/2017 1:28 AM (GMT 0)
I have taken budesonide (Entocort) several times over the last ten years - probably about 4 or 5 times, each for about 3 months. It worked pretty well for me in terms of stopping diarrhea and crampy pain.
Being a steroid, budesonide is pretty good at helping a person feel better, especially if their Crohn's is located in their terminal ileum and/or colon. Steroids reduce inflammation, reduce symptoms, and make you feel better overall. But they aren't so good at actually healing ulcers. And they aren't a long-term solution.
If your scope showed some narrowing in the terminal ileum - and from what you describe, that seems to be the case - then budesonide might reduce that inflammation.
But since you aren't symptomatic, it probably won't feel like it's doing anything. The only way to know would be to do a scope again in 3 or 4 months. Ugh, right?
I know it's terrible to get a diagnosis like this. But in a way you're fortunate you caught it early. Some people get obvious symptoms and know they are sick before they get diagnosed. But others aren't diagnosed until they need an emergency surgery. You found out now and may be able to avoid that emergency surgery. Had you not had the scope and found out, it would keep simmering until one day in the future you had an obstruction, had horrible abdominal pains, vomiting, fever, chills, etc, and needed surgery immediately.
You will need to get on a long-term "maintenance" medication. The reason for these meds is to reduce the inflammation, heal the ulcers, and prevent the narrowing at the terminal ileum from getting worse. There is good data that a proper medication will reduce your likelihood of needing surgery there in the future.
It takes time, and unfortunately often multiple scopes, to find a medication(s) that works for you. But there are good reasons to be on one. Otherwise you're letting the Crohn's simmer away until you find yourself in an emergency.