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Crohns for 25 Years & my son just diagnosed

Agent99

Agent99

Hi all... my name is Linda and I've had Crohn's disease for 25 years. A couple of years ago, I had a pretty bad flare and my doctor started me on Humira. I've been doing well since then; however, have recently noticed some symptoms indicating that I might be having a mild flare.... just not sure.

The sad news is that my 19 year old son was just diagnosed with Crohns. We had to take him to the ER on Christmas Eve (he was home for Holiday leave) and he was admitted for the next 5 days. Poor kid... he's just starting his military career and now this. He never showed any symptoms until just a couple of months ago. He went back to his base today and now we wait to see what the will happen. I'm thankful that he was home when the worst of it hit and that my GI doc of 25 yrs was on call. We were able to get him started on Humira right away and he's beginning to feel better.

I learned how to manage my Crohn's years ago, but I never thought I'd have to deal with it with one of my children. It's heartbreaking. I'm really interested in learning how this disease affects young males and what everyone knows about starting Humira at such a young age (they didn't have that drug when I was diagnosed).
 
SarahBear

SarahBear

Moderator
Location
Charleston,
Welcome to the forum, Linda!

What new symptoms have you been experiencing, if you don't mind sharing? What symptoms are normal for you?

I'm very sorry to hear about your son. If he taking any steroids, or just the Humira? You might want to have him check the forum out - there are quite a few members around his age, and at least one I can think of who is also in the military. It might help him to come talk about it.

Do you know the severity of his Crohn's and where it is located? As for your questions about Humira, I'm going to link you to the Humira subforum, here. If you don't see any threads answering your question, or don't get the answers you need in this thread, feel free to start one about it there.

You might also be interesting in the Parents of Kids with IBD section of the forum, here. I'm sure some of the regulars will be over to welcome you soon. They're quite a friendly lot. ;)
 
Agent99

Agent99

Thank you for the warm welcome, SarahBear!

My son is currently on Humira only. His Crohns is moderate to severe and involves his ascending and traversing colon and small intestine. He also has "ulcers" in his stomach but we don't know if they are Crohns or peptic ulcers since another doc (near military base) did that procedure. I will let my son know about this forum... he currently doesn't have much time to access the internet, so I'll likely have to relay info. And yes, we would love to talk to the person you know who is in the military. If you know who that is and have contact, would you please give them my userID?

I found the Humira sub-forum and the parents of children with IBD :) Thanks!

My new symptoms... I have a lot more grumbling in my gut and diarrhea, especially after eating. I don't have much pain, but there is some. I'm due for a colonoscopy (ugh) so I guess we'll see.
 
Earnellzwifey

Earnellzwifey

Hi agent 99 welcome to the forum. I am sorry to hear that your son has been diagnosed but I am glad that it happen while he was home. I know it's easier said than done but please try not to stress yourself out, as you probably already know stress can make a flare worse. I hope that the medication your son is on will send him into remission.

Feel free to ask, vent, or share an update anytime. Someone is here all the time ready to listen and help.
 
markybrown1989

markybrown1989

Its reassuring to know after 25 years you have found some way of managing crohns this gives me hope for the future and i wish you and your son the very very best. I'm of a similar age to your son (also recently diagnosed) and its not easy to hear your going to be Ill for the rest of your life.
 
Agent99

Agent99

No Markybrown, it's not. I remember when I was diagnosed in my low 20's. my initial thought was that I was going to die! I knew nothing about the disease but it sounded horrible and I had been SO sick for three months leading up to the diagnosis. I soon learned I'd survive and became sort of a renegade with my meds (much to my docs horror). 20 yrs later, I was again in trouble with a bad flare. That's when Humira and I became acquainted. I'm very fortunate that I have an excellent doc. I told him that when he retires, I get to interview potential replacements!!! :).

Keep your chin up, Marky! Staying mentally well and positive is as important as staying physically well. I'm very proud of myself and what I've accomplished with Crohn's disease. I'm even a runner.... Which is sometimes a challenge with Crohns!
 
markybrown1989

markybrown1989

Again those are very solid words indeed and i know what you mean about staying positive and trying not to think your going down and down forever, i like to snowboard and stay active so i think as long as i can get to a level where i'm working and enjoying the things i used to I should be ok even with flare ups and medication !

Much love Mark
 
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