Son just diagnosed with Crohn's

My son was just diagnosed with Crohn's after a very lengthy process starting in January. He did not display the usual symptoms of cramping and diarrhea but he was plagued with a mouth full of canker sores going all the way down his throat. We thought at first it was simply stress related (he was studying for the MCAT), and in fact once the exam was over and we left for vacation his sores cleared up. However his doctor insisted that he have a colonoscopy and sure enough his small and large intestines are riddled with ulcers. And I have been in overdrive ever since trying to understand this terrible disease. I have googled and read a zillion articles, searched for possible drug trials and seriously considered taking out a loan and traveling to Australia to get my son treatment from Dr. Borody.

I am truly grateful for this treasure of a forum with unbelievably courageous people who are fantastic at finding and sharing excellent information.

I want my son to join, but he is so depressed, extremely tired, suffering once again with mouth sores and night sweats. He is also now having bouts with diarrhea. And the medicine he has been given (Balsalazide) is making him feel bloated. He basically stays in bed ... And he does not want to even talk about his condition, so I have stopped asking. But I haven't stopped researching and I want to thank everyone here for being here. I have a lot of questions that I hope someone here will be able to answer.

Hi and welcome. Sorry to hear about your sons dx. We have a fantastic parent group here.

What is the treatment plan going forward?

Try and take it a day at a time. There is a grieving process. Depression is very common.
There are some very good meds now. Many of us here were diagnosed young. We went on to college or got a trade and now live full active lives.

Keep in mind. You will find a disproportionate amount of horror stories on the web.

Sending you both my support.

Hello, welcome to the forum!

Im sorry to hear of your sons suffering and recent diagnosis. I'm not surprised he feels low at the moment, it can be such a lot to take in especially at such a young age. It can be quite overwhelming knowing that you'll have this condition for life.

However, there are good treatment options that can induce and sustain remission, which is where there is no active disease, and sufferers can live long, happy, successful lives. I'm not saying it will always be easy, but a crohns diagnosis doesn't mean your life is over, hopefully as the medications start to work your son will realise that it wont be like this forever, he will have bad days, but he will also have lots and lots of good days.

How old is your son? We have a teenagers only section which he might find helpful if he's in his teens, it could be good for him to connect with other people his own age.

If he is 20+ we also have a young adult support group which could be really helpful. Or if he has a facebook account, you are more than welcome to have my details via private message to see if he would like to connect with me there, I started getting crohns symptoms at 15 but wasn't diagnosed until I was 19, I'm 21 now.

The medication your son is on is one of the mildest ones used in treating crohns disease. It acts as an anti-inflammatory and calms the inflammation in the gut to allow it chance to heal. The difficulty with these medications is that they can be too mild to properly keep crohns at bay, so it might be that your son will need to change to a tougher medication such as an immunosuppresant like azathioprine at a later stage.

As DJW said, we have a great group of parents here, so please feel free to check out the parents forum where you will find lots of support and advice from other parents.

Please feel free to ask as many questions as you need to, we are all here to support each other and although we cannot promise to always have the answers to every question, we will at least try to point you in the right direction and can at least offer you our own experiences.

Thank you so much DJW and Valleysangel92!!!!! Just before going to bed last night he called me into his room and said, " mom, I think I have a fistula". I don't really know what that is ... Thank goodness for Google!

I'm sorry to hear her may have a fistula. Don't let this slide. The doctor needs to know.

Dr Borody is a shit doctor!!


.. Sorry I couldn't help my self. I have actually heard some good things about him. In fact, my psychologist sees him for treatment of his IBS (unrelated, but interesting). I haven't considered his transfusions yet, they jury's still out so I'll wait to see what comes of it.

Getting diagnosed with something like this as a young male is such a downer, and I'd definitely expect him to get down and hide under the covers.. I do it from time to time. The important thing to remember is that his mental health becomes just as important as his physical health. As Valleysangel said, he may benefit from a support group, or maybe a counselor, or he may simply benefit from doing as much research as he can. You said he was studying for his MCAT? I think that's a medical school type thing?

This could be right up his alley and hopefully he can adopt an approach of "knowledge is power" as apposed to becoming even more down and depressed as he reads more about it (consulting with Dr Google is fantastic, but also dangerous!) Also as DJW pointed out there is a disproportionate number of horror stories on the internet. It's mostly the sick ones who make the posts. The healthy ones are too busy being healthy and enjoying life to be posting - as they should be!!

All the best for you and your son! And welcome to the forum.