Hi ash,
I'm sorry you've been given this diagnosis for your son. My son was diagnosed at 16, almost 10 years ago but I still remember the fear and disbelief when given the diagnosis. You're suddenly thrown into a 'new' life and it's overwhelming and scary. And, as MLP said the first year is rocky but it all settles... both your fears and the illness.
You'll find lots of support and guidance here, so I'm glad you found the forum! It truly was a lifesaver for me!!
My best advice for you is to learn as much as you can! There's lots to learn so it may feel a bit daunting but, the way I approached it was to learn bits and pieces and I looked at it like a jigsaw puzzle... every bit I learned was a new piece and, soon, the pieces began to fit together. You can't learn it overnight so give yourself time and deal with all of it one thing at a time, one day at a time. The members here are fantastic at answering questions!!
A mini crash course:
diagnosis - they will tell you where your son's crohns is located as this can affect treatments and symptoms.
Regardless of location, in layman's terms (please understand I am only a mom with absolutely no medical background, so some of what I share is just how I've come to understand it!) crohns is an immune response that causes inflammation. The inflammation is ongoing and will eventually cause scarring and other problems in the intestines. First goal is to get inflammation under control asap and second goal is to reach remission (when there is no inflammation on an ongoing basis).
tests -
bloodwork can show if there is inflammation but can't identify cause or location. The bloodtest indicators are CRP and ESR (sed rate). Stool samples can be tested for intestinal inflammation (fecal calprotectin FC) but this is also limited as it is more useful for certain areas of the intestines.
imaging and scopes - colonoscopy allows the GI to see as far as the terminal ileum (where the large and small bowel meet). Scopes can not reach very far into the small bowel. MRIs are used to view the small bowel. Pillcams (tiny cameras you swallow) are sometimes also used but also have limitations - can get stuck in one spot, camera may be pointing to the left and miss inflammation to the right, etc.
treatments -
Steroids or EEN (exclusive enteral nutrition) are used to get inflammation under control and get your son to remission. Steroids have risks and side effects but are necessary. EEN can be used in placed of steroids but require a diet of nutritional formula ONLY for approx. 6 weeks, no food (sometimes a very small amt is allowed). This is very hard to follow but has comparable success as steroids and has no side effects or risk.
Maintenance meds (which maintain remission) are usually started along with steroids/EEN as the maintenance meds often need some time to reach therapeutic levels. So you want them to be working by the time you finish the steroids/EEN.
Maintenance meds do have risks which sound scary, especially to a parent!! And, generally, these meds are for life - although there are exceptions. We've all struggled and cried over the thought of giving our kids these meds.
This is part of the 'new life' to which you'll need to adjust. Unfortunately, there really isn't any way around it.
But, one thing to remember is that there are risks every where that we allow our kids to take... my son played competitive hockey (the hits absolutely terrified me), we let them learn to drive and then to be in cars driven by other inexperienced drivers, we let them go swimming, go to cottages, ride in boats, go skiing, the list is endless... all this to allow them a better quality of life... the same for the meds. And, the risks from the meds really are small!!!
Some people have tried to use diet to control inflammation... I think only a few have had any success and I believe it would be very hard to maintain. My son was such a picky eater, a restrictive diet wasn't even a remote possibility so I have no experience with it.
And, then, most important... life goes on!!! My son graduated high school and university. He continued playing competitive hockey until 18 and still plays recreational hockey. He's travelled with friends a number of times. He's now working and living on his own. He's had two injuries (unrelated to crohns) that have required surgery... he's recovered just as he would have without crohns.
There have been adjustments made but really he's gone on with his life.
Something else to know... and it can create more frustration! Everyone responds differently to crohns - symptoms can vary greatly from person to person, response to meds can very greatly, response to testing can vary (some people have perfect bloodwork but have ongoing inflammation), etc. So, just a heads up so you are not discouraged if the first med doesn't work or the first test doesn't give unequivocal results.
I hope this helps... I hadn't meant to write quite so much but... hopefully, it'll get you started on your journey in as positive a way as possible.