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Hello,

Our son, 18 years old, was diagnosed last month with Crohn's.    Does anybody have any thoughts for parents just starting  This is our first time on the Forum. 

 Reply posted for edwardvan.

Hi and welcome to this great forum.  My daughter was diagnosed with UC 4 years ago at 16.  She's now 20.  She is currently on 4 Lialda per day, 2 probiotics, 1 Women's One a Day, 1 Oscal vitamin.  I'm very glad your son sees an IBD specialist.  My daughter sees one also in Los Angeles.  She has been to many doctors and has been on many meds.  The thing about IBD is that what works for one may not work for all.  It's trial and error.  I think keeping a food diary really helps.  Here's something that has helped my daughter so much.  She has started eating very healthy.  I know it's hard as teens since they go out with their friends to eat but she really watches her diet:  no junk foods, no processed foods. For UC it's watching her diet so she won't get "bacteria overgrowth."  I wanted to mention that colleges have a GREAT disablity office and are there to help.  They get registered first so they get their classes. They will get housing too.  They can get notes from the professor if they are out.  All kinds of things like that in college.  My daughter refuses to go to the diability office since she is doing well now but I wanted to mention it to you so you'll know about it.  I've called them to tell them about my daughter and they told me to tell her that they are always there for her.

 Reply posted for antonyde.

Hello, thank you for your advice.  After reading your reply, I immediately went online to search for GI's in the area.  Thank goodness, the one we are seeing is a specialist.  It sounds like you have been able to control your flare-ups over the last 20 years.  Have you every  had any of the meds "not work" for you?  Have you ever had a food that is definately a "trigger" food?  Our son has a huge appetite and we don't know what that one "favorite" will be that triggers a flare-up.  Thanks -

 Reply posted for cougarmom.

Thank you so much for you story.  I'm sorry your son has had a difficult time recently.  Our son, also, missed a bit more school in Jan and Feb.  Not knowing what the reason was, it was very frustrating.  Now, looking back, I can't imagine sending him off to school feeling the way he did.  Reading books that we have gotten has been helpful for us to understand the "what it is" part, however, the "why" part of it is still a bit hard to grasp.  Reading about so many people having surgeries, sometimes more than one, is very undaunting.  Hopefully, we will not have to go through that.  We are in the same situation for the college aspect.  Graduating Senior this year, college in the fall.  I'm glad you mentioned the part about talking with the college staff regarding missed work, etc.  That is a great idea.  As far as the GI, I did check for specialists in the area and the one that we are currently seeing is one of them - thank goodness.  Right now, we are learning to take one day at a time.  Still trying to absorb the fact that it is here and will not ever go away.  We still aren't quite sure it has sunk in to our son that this is a lifelong thing he will have to deal with.   (We haven't even gotten our first dose of the Imuran yet - still waiting on the bloodwork.  He is currently taking the Asocol, Cipro and Flagyl).  If you have any more thoughts, stories or advice, or just need to "get it out there", we would like to hear/listen.  This is the first response we've posted.  We truly appreciate your thoughts.

 Reply posted for edwardvan.

also, YES, find a very good GI doctor who specializes in crohns and Colitis.  hopefully one faily close to home!!

 Reply posted for edwardvan.

My son, almost 18 has had crohns for several years now and has been on several different medications, MP6, asocol, prednisone, remicade, and lately humira.  Lately he has had a rough school year switching medications and getting a "flare" under control.  Thankfully it is under control, but he is very tired and hurts all over his body.  he is positive and keeping up with school, despite not being present at school much.  Remember, Chrons affects everyone differently and it depends where the crohns is at in the system.  many people control their chrons with medications.  This site is wonderful for those who have more severe problems as you will notice people with lots of surgury, etc.  not everyone has surgury!:)  I am now thinking ahead on how my son will handle college.  my advice for college is to see what the college says about people with health problems.  Do they let people makeup work, accomodate for testing?  Boy, I could talk about a lot of things.  I am trying to picutre my son being on his own and handling this disease at times when it is acting up.  Good luck with everything and pray his crohns srtays managable!

 Reply posted for edwardvan.

and my advice is to be sure you have the best doc in your area, find some who specializes in Cronh's and Colitis, not just a general GI.

I was diagnosed at age 15, I'm 35 now and have once child and one on the way, I can see now how tough it must have been on my folks.

stay strong and support your child, make sure they stay on there meds even after they start feeling better. 

You both need to be in this for the long haul

GOOD LUCK