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Parent with an older child w/Crohn's

Hi.

I'm the father of an older child that has Crohn's. He was diagnosed at 14, he's now 30.

I know a lot about the treatments, the steroids, Humira, the pain & suffering he goes through...

What I'd really like to know is: are there any other parents, siblings, friends, relatives out there that have been, effectively, abandoned by their Crohn's-affected loved one? My son has had severe mood swings with a lot of people and I've not been able to deal with it effectively, I guess. And recently, he completely stopped all contact with me.

The last time he spoke to me was at my granddaughter's birthday party (she and I are 3 days and 44 years apart)....almost 6 months ago today.

I sure do miss him. I don't know what to do other than just bide my time and hope he'll come around. He's been at this stage whereby he may or may not have to have surgery and has had to go back on higher doses of steroids, the Remicade stopped working - you know the drill.

I know he's suffering and I'm almost ashamed to admit it but this is the hardest thing I've ever been through. If there's anyone out there w/a similar story and any advice on how to deal w/it, I'd be very grateful for any advice.

Thanks!
 

SarahBear

Moderator
Welcome to the forum, zappy! I'm sorry to hear what you've been going through. :(

Your question might be better posed in the Parents section of our forum, found here, although I know most of the forum's parents have young children.

It's probably not much help, but I have had to remove my mother from my life, although there were many other unrelated factors there. It doesn't mean I don't love her, it's just not a healthy relationship right now.

Has he been on steroids lately? If so, they may be a contributing factor with the mood swings. It could be that things will settle out once his condition is under control.

I'm very, very sorry you're dealing with this. It definitely sounds tough, and I hope things get better for the both of you soon. :hug:
 

DustyKat

Super Moderator
I am so very sorry to hear of what you going through zappy. :(

My two aren’t as old as your son, they are 21 and 20, but dealing with this is much harder with my daughter than my son and to be honest I often feel that I am but a hair trigger away from dealing with what you are should I say the wrong thing!

As has been said, look back to the timeframe of this and see where Prednisone fits in. If it does coincide with this change of behaviour in him then as hard as it is i would step away and let it run its course. I think there can potentially be too many bridges burnt if you try and tackle if it is the Pred talking.
If the Pred doesn’t fit with this then I think biding your time anyway may be what you have to do for fear of pushing him even further away. I hope more than anything that given time he will move through this phase and reignite the contact again. :ghug:

I know he's suffering and I'm almost ashamed to admit it but this is the hardest thing I've ever been through.
A very dear friend that I met on this forum once said something that was so succinct and heartfelt to any parent that has a child with IBD:

The worst thing that happened in my life didn’t happen to me.

I think that says it all dad. :heart:

Dusty. xxx
 

Tesscorm

Moderator
Staff member
I agree that pred along with the crohns-related frustrations and struggles may be playing a large part in his actions. As has been said above, I would give him time to deal with his issues but, (and you may have done this already) I would keep the lines of communication open very casually/lightly without forcing a real 'conversation' (ie a small comment about something in the news or the weather if you pick-up your granddaughter, an excuse to quickly drop something off, etc.) and, hopefully, the short comments will eventually grow into conversations. I'm suggesting this only because, even once he is feeling better, he may have a tough time making that first move in reaching out to you if there has been no contact at all for a prolonged time... I think if you keep that line open, it will be easier for him to make that move.

My children are not as old as your son but old enough that it's sometimes very difficult to stand aside and watch them make decisions that I would not make! And, it so very often seems that we parents must be the ones tiptoeing around!

I'm going to tag in topperdoy - I believe they have had similar struggles and may be able to offer some support and insight as well.

:ghug:
 
zappy,

According to what your writing this has been going on for at least 6 months... thus, I'd say this is more than the effect of the pred. (event though it probably runs its course as well). As for myself, I always say the pred doesn't make me moody, but it amplifies my moods, makes them much stronger.

You saved few details about your son : does he live nearby your house ? is he a close person in general ? what are the relations with the rest of close family ( mother, siblings, gradpa/ma ...) ?

My best guess is that your son is hurting ... he may be ashamed in a way, maybe he feels like he disappoints you (even though it may sound strange to you)...
- Are you taking any active part in helping him deal with his condition ?
- Are you two able to openly talk about his disease ?
Maybe he feels that if he cannot talk to you (or anyone) about his condition, than he'd better not talk to you at all ??

Relationships with parents are so tricky; you can benefit from them so much when they are well, but it can hurt so much when they are not.


Hope your son feels better soon, and with that may your relationship become healthier, stronger. What else have we got on that planet if not each other ?!
 
worriedboy,

Those are all very good questions:

I think you hit the nail on the head with prednisone/meds amplifying moods - we've always had issues, but have been able to work through/around them. But not since this last episode.

He's been a lot sicker lately, and has had to go back on steroids to help heal the problem areas.

-if you bring up the crohn's issue, medical problems, current medical status: he gets angry way beyond the point of a normal response
-he won't let me help him, it's so bad that he drove himself to a colonoscopy, got the colonoscopy - then drove and went back to work the same day...that blew my mind.

Tesscorm,

I agree w/keeping the lines open - i'm trying various strategies...we shall see.

Thanks for all the kind words of support from everyone.
 
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