Posted 11/17/2022 6:19 PM (GMT -8)
Welcome to HW. You'll find this forum is a tremendous resource, with a lot of support and experience. I'll try to offer you some advice and attempt to answer some of your questions.
As with most parents, I'm sure when you heard the words "Crohn's Disease" you were pretty shocked and scared. You also likely went straight to the Internet to get some answers, which can get a whole lot scarier.
If your Son does in fact have Crohn's, then no it's not good news, but treatment options have taken huge strides over the last 5-10 years. A lot of the negatives that you might be reading about via the internet, will be from a long time ago, when treatment was very primitive
To answer your first question, it sounds to me like your Son could certainly have something other than Crohn's. Biopsies are the most difinitive in diagnosing for Crohn's. Not trying to give you false hope, if he is presenting with ulcers, than something is going on. There are many other digestive disorders. Celiac would be the first to come to mind, and he should be tested for gluten intolerance.
Elevated Calprotectin will indicate inflammation. Did they give you any other test results? Bloodwork? CRP and sedimentation rate?
As for diet, I would recommend you have him follow a low residue diet to help calm his symptoms down. Unfortunately, the Doctors are right in that diet will not be a treatment option for IBD. You'll read a lot of anecdotal evidence regarding dietary approaches like SCD, but I'm sure most of the the feedback you'll get on diet as a means, will be negative. Just my opinion.
Recommending a biologic like Remicade or Humira isn't abnormal, but before you consider either, I would press your GI for reasons on why the biopsies came back negative. If they have a definitive diagnosis, then going with a biologic, even at a young age isn't out of line. They often refer to this as a "top down" approach. Meaning, if they use minimally effective meds, the disease can progress and do considerable damage. Many feel it's best to use stronger meds and keep the disease in check and avoid other complications.
When biologics first came on the scene, there was a tremendous amount of fear, but they have proven to be very effective, and while still a risk, and I wouldn't be so bold to call them totally safe, I would say that most have tolerated them well. My Daughter was on Remicade for over 10 years, and it was very effective.
Good luck, I'm sure others will offer you some advice here. Keep posting you questions and updates.