Newly diagnosed Son with Crohns

[Annerich0821]

Hi Ladies,

Sorry this my first time writing on a forum. My 15yr old was diagnosed 04/01/22 with Crohns.
Now that I know what he has I have been googling everything I can find, reading books and just trying to get as much information as possible, but my coping hasn’t been going very well.
I am wondering how you parents have dealt with your child’s diagnosis. Does the anxiety and fear for your child get any better. My son is very laid back and has dealt with his diagnosis very well, and just goes with the flow. His mother not so much.
He was just started on remicade a week ago and i wondering how did your child infusions go and did you notice anything right away with how they were feeling. I find his energy is still low but cramping has almost completely gone.

Thank you for listening,
Just a mom needing a little extra support

 

[Jo-mom]

Hi there, welcome to the forum. My son was diagnosed with Crohn's at 19 although he likely had it since he was 14-15. His first line of treatment was remicade. For him, we noticed a remarkable difference right away. He wasn''t able to eat anything and was quite underweight and when he walked out of his first infusion, he wanted to go out to eat. Everyone is different but it can take up to 6 weeks for Remicade to work. My son is also laid back about his diagnosis and makes jokes about it. He also has arthritis (part of the Crohn's package for him). I felt anxious and worried and googled everything as well, but this forum actually was the best learning tool for me. It gets better. My son is now 23 and still on Remicade (3 1/2 years now). We had to adjust the dosage and intervals a few times. That is one of the good things about Remicade is that it can be adjusted. My son is doing well - finished University and working full-time, living on his own and is leading a normal life as a young man should.

As a parent, you never stop worrying, but you will see that once you see that your child is feeling better, that you will worry less and less. It sounds to me that the Remicade is already helping your son, but give it a little more time.

There are a lot of parents on this forum. We are here for you.

 

[Annerich0821]

Thank you so much for your reply, it definitely helps to see I am not the only one when it feels like you are.

 

[Jo-mom]

Actually, it can take up to 3 months for Remicade to work but generally you should see some good results before that. You are definitely not alone! It can be overwhelming when you just find out and you feel so bad because you think your kid won't have a normal life. He will!

 

[my little penguin]

Ds was dx at 7
Started remicade at 8
His swim coach could tell when he got his infusions by his swim times
He is now 18 and on Stelara plus methotrexate (crohns and juvenile arthritis)
Meds work
You get your kid back
Expect worry for a while
Your in survival mode
Eventually things calm down and it’s just part of your new normal
In the room but barely there for most
The worry decreases
You stop googling
Life moves on
The meds do their job and your child moves forward
Blips happen but lot often
Sometimes meds change - but not often
We are here to answer questions as moms in the past did for us

hugs

 

[UKmum]

Hi, my son was diognosed with UC just over a year ago and I totally know how you feel.

Naturally we want to know as much about the disease as we possible can.. I have researched and researched and made myself very sick over it all as it's a frightening read .. but year on and I am turning a corner. I've stopped googling (for now) and realised that this is a very individual thing, everyone is different, has different symptoms etc so what I read isn't necessary going to happen to my son.

if you son is well and relaxed about it then you should try and be too - but as mentionrd I get the anxiety

 

[Jbungie]

Welcome! I am actually a dad . My son was diagnosed in Jan'21 at 5yo. Kinda happen out of the blue within a span of 3 weeks, and during covid. I read and researched probably 8 hours+ a day for a year. I 've just recently started backing off of that, as I believe I literally made myself sick. We are also on Remicade, but started out in the hospital for 19 days, and had other meds in addition for the first 7 months.

I still wake up in the middle of the night, and in the morning trying to backtrack what we did wrong, and why the vast majority dont have to deal with this. We are in remission, and I still get very bitter. My niece was diagnosed with ulcerative colitis 5 years ago, but before that we have no family history of any medical issues whatsoever...zero. I find myself saying why now..with our one and only kid!?!

The support and knowledge on this board is a tremendous help, but I also try to keep myself from reading it on a daily basis.

If your seeing improvement on Remicade alone, and they started that right off the bat, that's a good thing.