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Need advice on helping 24 yr old son deal with this diseae

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Ulcerative Colitis
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Posted 9/23/2008 12:59 AM (GMT 0)

 I am the mother of a 24 yr old boy who was diagnosed earlier this yr and need some advice on how to help him. Thankfully he had just moved back home to try to finish college and only works part time. He currently has virtually no social life thanks to his condition and while he makes it to work and school most of the time that is about all he has the energy for. He is a very private person and really doesn't want his parents butting into his life. I know I am driving him crazy asking him about how he is feeling but it is driving me crazy not knowing how he is doing. He let things get so bad this summer  before he said anything that he spent a week in the hospital and his Dr. thought they would have to remove his colon.  He is currently on Lialda and pred. (i think)  Earlier this summer He quit taking all his meds for awhile- he really doesn't think they help that much. He is sick of Drs. and won't call them until he gets really bad. I have purchased probiotics and fish oil caps etc.. he will only take them for a few days and when he doesn't see an immediate improvement he stops. I know he is depressed and he did try some Lexapro for a day and quit that also due to side effects. His attitude is pretty bad and I can't say I blame him. This disease really sucks! anyone have any advice on how I should handle this situation? I would really appreciate it!

Posted 9/23/2008 1:27 AM (GMT 0)

You are in a tough position.  I am a mother of two sons - one who is 45 has had IBS, etc. for years.  He is pretty open with the problem but does not trust the doctors.

If your son is seeing a gastro doctor - clinic or group - ask him about talking with a nurse practicioner or physicians assistant about medication, food, anxiety - just dealing with this disease is very hard.  I am pretty new at it at 68 and still having problems talking about it with my family, etc.  I have two NP's I just love.  One is a young man and gastro NP is a young lady - she listens and helps me understand what is going on and what I have to do.  They are more compassionate and have more time to just "deal" with the patients - medically and emotionally.  Also, maybe a support group.

ElaineNY

Posted 9/23/2008 1:31 AM (GMT 0)
Thanks for the advice-I have asked him if he would like to toalk with anyone about it and he didn't see any point. I will just have to bide my time and pray a lot!
Posted 9/23/2008 2:31 AM (GMT 0)
Another thought!  How much has your son been educated about UC?  The videos on this website are excellent - lots of info - education may help him a lot!!  ElaineNY

Posted 9/23/2008 3:51 AM (GMT 0)
Hey I know the feeling your son is in. I was just diagnosed on my 22nd birthday, and it really does kill your social life. The trick is right now fiding which combo of meds works and gets you into "remission" or at least feeling like a normal person. All of us on the board know what it's like to worry about going out and have an "accident". The disease is treatable and there is light at the end of the tunnel. Have him talk with his GI, perhaps he could go on one of the newer drugs? What drugs is he on now? I was on Lialda but it made me a whole lot worse, currently the Prednisone is working it's magic.
Posted 9/23/2008 3:58 AM (GMT 0)
It is tough to help someone who doesn't want to help themself. It sounds like he is in denial about his condition, which makes it even harder to try and support him. Maybe tell him about this site. Unless he begins to show some interest in learning about UC himself, there really isn't much you can do. Eventually, he will figure out that meds help, and he will figure out that what does and doesn't make him feel better. For me, first two years were the roughest. Hopefully he'll start showing some interest. I wish you and him the best of luck.
Posted 9/23/2008 2:32 PM (GMT 0)
He does think the Lialda helps, but he only takes it if he is feeling really bad, then once he feels a better he stops taking it. I think it will take time for him to realize that his condition is chronic. I have mentioned this forum and he may be checking it out-it's hard for me to know, he does not want to talk about it with me. He is also on pred-but he reaaly hates it-makes him feel really bad,tremors,chest pains etc.. Hopefully with time he will adjust and I will too. Thanks for the advice!
Posted 9/23/2008 2:34 PM (GMT 0)
He'll eventually come around. What you could do is pick a good casual time to actually ask him how he feels about you doing the research on UC, meds..etc. Suggest to him that there are medical options, but it'll be a learnng process for both of you.

Tell him also that it hurts you as a mother to see her son in pain and have his live changed through it.

Ask him what you can do for him. Ask him what he wants to do for himself. Most of us have gotten to the point of knowing that meds do help.

Some people just don't want to take them. ever....

Allow yourselves the time to adjust.

quincy
Posted 9/23/2008 2:45 PM (GMT 0)

Yes, I am at the point where I would like to throw out themedication and the doctor.  I can't imagine how I would have handled this at age 26 or so.  I know the steroids can change his personality.  Seens that in my husband.  We have been married 47 years and he never yells at me except when on steroids for his COPD!  And then he cries (which he never does ) and says he is sorry!

Hang in there.

ElaineNY

Posted 9/23/2008 4:33 PM (GMT 0)
Maybe direct him to this website and see if he starts posting/asking questions etc on his own...
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