I had just turned 9 when all of this happened.
If there had been an accurate way of diagnosing me right from the start, would that have changed my treatment course? Would I still have a colon? The answer in my case is, probably not. Treatments for Inflammatory Bowel Diseases tend to be the same no matter if you have Ulcerative Colitis or Crohn's. There are some medications which show more effectiveness at treating one or the other, but when it comes to the "BIG" treatments (Remicade, Humira, etc), they're used for both of them. My colon would have had to come out. It was so heavily diseased and damaged that it would have only meant more pain and hospitalizations until eventually it led to surgery anyway. By that time I had had 3 major hospitalizations greater than a month, so I was ready to try to be a kid again.
So why, if the treatments offered aren't going to change regardless of diagnosis, do we need an accurate way of diagnosing between these diseases? Because for other kids (and adults too!) it could make a difference to surgical plans. When a person has their colon removed for whatever reason, there is another surgical procedure that can be done once the person's health is restored, called a JPouch surgery. This involves taking the end of the terminal ileum/ileum (the last part of the small intestine before the colon) and creating a "pouch" that acts like a colon. The person than goes to the bathroom normally again. However, the key word to having this surgery is "healthy". For a person like me with Crohn's Disease, I could develop ulcerations at anytime, anywhere in my digestive tract. If I developed these lesions in my pouch, there is a very real possibility that I would have to have surgery to have the pouch taken out, and I would lose even more intestine. Not ideal. I've already consulted with a surgeon about this surgery and was told a very strong "NO" and basically to run from anyone who says that they would do it. Since I have been in a Crohn's flare for 3 years, I would not be a candidate for this surgery.
But, for other kids the type of surgery they do could be decided based upon which disease they have. For a kid with Crohn's but who has inflammation in the colon, they might just be able to do a resection of an area rather than a colectomy, which might help the child avoid an ostomy bag for life (not that there is anything at all wrong with an ostomy bag, but if it can at all be avoided why not take these steps?!).
Research is getting closer to finding out what is causing IBD to develop, but it's not quite there yet. I strongly believe that once we can find out what goes in to causing IBD, we can then find better treatments or a cure. In the meantime, it's important to inspire all people living with IBD (and other chronic illnesses) to keep up the hope even when hope seems slim. Keep fighting even when you feel like you don't have the strength. Keep focused on the light at the end of the tunnel, we will beat this.