Community Forum

Hi all~ this is my first time on the board.My 19 1/2 year old has been battling Crohn's since 16. At first, the usual: thought his frequent "stomach aches and nausea were a way to get out of school because he did not like it. After many diagnostic tests he was diagnosed with a pretty severe case of Crohns which was only found after the upper/lower GI scans as the conventional labs did not reflect any concerns. He has tried all the pills but tends to "forget", gets angry with me when I remind him. says "they don't help so why should I take them". I even prefilled a med box to give him freedom but he continues to "forget". He was not able to go to high school in spite of Remicade (10+ x on a good day, 20+ times on a bad day in the loo) so he finished on the Homebound Hospital Program in our county and then the computer Virtual school in our state to finish all the electives and made nearly all A's! (A change from the D's and F's when trying to stay in school, hurting, embarrassment of leaving class frequently, etc.  So here we are 3 years later, he never wants to leave the home, has anxiety issues, states he prefers to be alone and does not understand why all the fuss about getting out of the house if he is calm and prefers it this way. He refuses to get his driver's permit, will not go to a counselor to have someone outside of the family, and he hasn;t used this site as far as I know for support. How do I help him take charge of this disease instead of letting him make excuses from living because of the Crohn's?

 Reply posted for dbflrn.

Remember to take care of yourself, Mom.  I've got an 11 year old diagnosed with Chrohn's this past summer.  He's going through alot and takes me with him on the emotional roller coaster.  Consider talking to a counselor yourself.  It could help you see the path forward.  Good luck and take care.

 Reply posted for dbflrn.

Well, I was on Remicade for 2 1/2 years prior to my preganancy and it worked great for me.  It put me in remission.  No pain, not runs to the restroom, no nothing!  When it comes to treatment and remission, I think that it really depends on the person.  What symptoms does he have?  In general, it is important that you trust your doctor, but when you have a disease that affects so many aspects of your life it is even more important!  My doctor really believes that I am the best judge of my body so if I say something is not right then he trust me and we work together to get things going.  He really has to become more active in his own treatment.  The doctor will only be able to judge what we tell them because they have not been where we are.

 Reply posted for kawaiir.

Thanks for your reply kawaiir! I really did need to hear from someone around his age. And as much as I suspect the depression (as well as some fears developed as a result of the isolation) I just cannot get him to get out or go to a psych MD. He says he is not depressed, is happy to stay at home unlike other people. He is on Remicade 10mg/kg weight (165 lbs) every 4 weeks for the last 4 years. Though he never seems to get into a 'remission' long enough to plan any outings, he and the doc seem to think it is 'working'. Can't get her to consider Humira or anything elese. What is your (and all you other board members as well) thoughts on treatment? Thanks again for your reply. ~Deb

 Reply posted for dbflrn.

Hi,

I am 26 years old and I was 21 years old when I was diagnosed with RA and I was 23 years old when diagnosed Crohn's.  I can not begin to tell you all the emotions I felt.  At the time I was diagnosed with RA, I was in my first year of college and I had to stop going.  I Was so upset, I thought it was my fault, then I was upset with God, I hated my life.  When you are young and have so much going for yourself and then something like that happens, you feel like your life is gone.  I used to "forget" to take my meds as well.  I thought that the pills and my illness was who I was.  I let it define me.  All I could think was "this is going to be my life for the rest of my life."  It took me a while to get to a good mental place and realize who I was and to not let the disease beat me.  I will keep you all in my thoughts.  Things will get better.  You just have to know that all you can do is support him and give him the love he needs.  I wish he would take advantage of the resources he has because I can tell you that now even when I am at my worst, I feel so much better when I get out and just get some air.  He really does need to get out.  He may be in a state of depression. Like I said, I will keep you all close to my heart and just know that you are a wonderful mom 

 Reply posted for pasmax.

Pasmak~ Thanks so much for your informative reply. I will certainly take your reccomendation and read the book!. I guess since I too am in the medical profession is why I feel even more helpless to help my son. AND I blame myself because , as a medical professional, I possess the nuturing nature that many in this field have that may have hindered him by making life easier on him instead of making him face up to the challenges thus, hurting him more than helping him. Of course you know what they say about hindsight.... Thanks again

 Reply posted for dbflrn.