Jumping on the "each person is unique" bandwagon here. Although maybe one of those super expert ped IBD gi's might have a fairly good guess. But I am not one of those so I can't make a prediction.
I think we all agree that inflammation is bad and the results are unpredictable.
The spectrum of unpredictable results ranges from mild heartburn and maybe some cramps now and then or maybe even no symptoms at all to life threatening perforations, obstructions, fistulas and abscesses. Hopefully the really bad end of that spectrum will give you considerable warning so you can intervene but I have known two kids who developed significant perforations just "out of the blue" with few symptoms prior to the perforation. And none of the symptoms were severe until they started vomiting blood.
I have been on Parent support boards for 7 years. It's important to remember that the families and kids who participate on these boards are NOT representative of the general population of kids with Crohn's.
The kids with Crohn's who are doing great, who have mild disease that responded to 5ASA meds and diet changes, or who are doing great on other meds and their families are happy with their medical care - those kids we don't see. They exist but we don't see them because they don't need the support of this kind of board as a general rule.
Instead the kids/families on this board and others like it are usually the sickest ones, the ones who have gotten bad care for some reason, been misdiagnosed or have a complex case with mulitple diagnoses like Crohns and Celiacs. Often the families are frustrated with the medical team they are working with or have worked with. Many are seeking alternatives to existing treatment or at least information they feel they can trust because it comes from other parents.
So it's helpful to avoid making too many comparisons between your own child's situation and that of other kids on the board. Keep in mind that throwing every test in the book at a kid with Crohn's is not necessarily appropriate or even good for the kid or the family - even though it may often be necessary and appropriate for many of the children on this board and may be for your child.
If your biggest fear is surgery then you may find it helpful to learn more about surgical treatment options and the pros/cons.
If the surgery you are talking about is removal of the colon, I can tell you point blank that most people can live their life just fine without a colon. Really.
It's a little harder for people with Crohn's to do so but many do. You could go over to the adult boards and ask about it and find lots of folks who have had colectomies. But again keep in mind what is true here about the sickest being on the board is true there too.
If you are talking about small intestine surgery, well that is best avoided if at all possible. But it may not be possible. In that case the less removed the better because that is where digestion happens. The colon handles water removal while the small intestines do the heavy lifting.
Even so, unless you are talking such severe loss of bowel that you would be left TPN dependent or facing gut death - both very, very extreme and unlikely conditions - small intestine surgery is unpleasant, can leave you with disgestive issues you didn't have before but is still a better option than death from obstruction, perforation, etc. At least I think so.
Hugs. Things will get better. I promise.
