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What are we in for?


Thu, August 06, 2015 3:23 PM

My 15 year old son was recently diagnosed with colitis a few weeks ago. We are just in the early stage of exploring this disease. There is so much information out there and most of the stories are scary to say the least. The two weeks of prednisone doesn't appear to be helping and he is already getting frustrated with the lack of results (as he's been very sick for months before diagnosis). He has an MRI tomorrow to explore further what the scopes couldn't see. I know that each situation is different so it's difficult to have a clear plan including dietary. He also is severely allergic to milk. Is it unrealistic to think he will be better enough to go to school in September? Are there any "positive" stories out there among all the horrid ones? Looking for support on this journey. Thanks! 

FPO chronic3
Joined Aug 5, 2015

Tue, August 11, 2015 1:01 PM

 Reply posted for chronic3.

There are success stories out there....my daughter is one of them!  She was dx w/Crohns @ 4 and we were terrified.  We felt like we were on a never ending roller coaster. Being in the same boat you are in, we googled too much and read horrific stories and became very overwhelmed.  

Once we met with a nutritionist who helped pinpoint many of her triggers, we were slowly starting to see improvement (that coupled with some mild medication).  Our little one started feeling good and began growing!!  She had suffered with "failure to thrive" earlier on, but the negative effects were beginning to fade.

The best advice I could give is to not allow this condition define who your son is......this is a small part of the whole. 

Hopefully by now you have more information from the MRI and are moving ahead accordingly.  School may very well be doable in Sept. and there are plenty of things you can do to assist him. You may want to look into a 504 Plan, there is a template in the resource center for you to use as a guide.  There you can request, unlimited restroom privledges, snacks, water @ desk, preferred seating in classroom, etc.

We also got involved with CCFA as a family by participating in their annual walks, fund raising and Camp Oasis.  Camp Oasis is a great way for your son to meet other kids who have similar dx. Our daughter has met two of her best friends there. They keep in touch during the year then spend a week at sleep away camp participating in zip lines, tubing on lake and making memories that will last a lifetime.  






FPO lizzies mom
Joined Sep 9, 2009

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