Helping Family Members deal

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Becca-Boo
New Member


Date Joined Feb 2008
Total Posts : 11
   Posted 2/13/2008 2:21 PM (GMT -7)   
My daughter (3 yrs old in March) has been dealing with IBD for about a year.  I've been trying to stay really positive about things, but my husband is having a really tough time with it.  He won't read any books on it because he says he just "doesn't want to know."  Every time she poops and there is blood he gets depressed.  He has a lot of questions, but I think figures ignorance is bliss or else figures that if he reads about it, it will make him even more depressed.  He is really overprotective of her and if she gets hurt in any way, he is beside himself and is very extreme in his thinking(ex. she fell and bumped her head and he was worried that she would have a permanent bump and that it would never heal).  I know that he loves her so much and just wants her to be "normal" but I think that there could be an easier way to deal with what is happening.  Does anyone have any advice to give him or me?
Mother to daughter (3 yrs) who has either CD or UC (Ped GI hasn't officially diagnosed her yet because she's so young)
She has taken Prednisone (20 mg and lower)- successful, but we could never wean her without it reflaring
Asacol 3 times a day-unsuccessful
Colazal 3 times a day- unsuccessful (made it worse)
VSL, Flagyl, Xifaxin
No meds right now
Thinking about starting 6 MP


MikeB
Veteran Member


Date Joined Mar 2006
Total Posts : 1169
   Posted 2/13/2008 2:25 PM (GMT -7)   
Well a conference with her doctor might be a good place to start -- ask the GI to lay out the probable course of the disease, what she will need as she gets older, etc. Hubby needs a good dose of reality to jar him out of his denial. He also needs to know that a child having IBD is NOT as terrible as, for example, a childhood leukemia or a bad mental or physical disability, that she can live a relatively normal life with Crohns.

RedAdmin
Veteran Member


Date Joined Aug 2003
Total Posts : 1017
   Posted 2/13/2008 2:26 PM (GMT -7)   
My father cannot even talk to me when I am sick. I am over 40, so this is hard on me. But my husband talked to him. Turns out he thought it was his fault and that he had given me this problem. Also he is not a well educated man and reading is not something he does well at. But with my mothers, husbands and my help he is dealing better with me when I am not doing well. When I am well he does great. I am lucky he no longer lives close so he does not have to see the daily stuff. What I am trying to say is - could your husband be blaming himself.
Red (Lee Ann)
 Happy Bunny 
      When life gives you lemons, squirt juice in your enemy's eyes.


Becca-Boo
New Member


Date Joined Feb 2008
Total Posts : 11
   Posted 2/13/2008 2:32 PM (GMT -7)   
I think that my husband (like most husbands) feel the need to protect their children and family. I think that if he could, he would trade places with her. I guess the most frustrating thing for him is not knowing if a certain medicine is going to work etc. There are so many uncertainties with IBD. I think that is the hardest
Mother to daughter (3 yrs) who has either CD or UC (Ped GI hasn't officially diagnosed her yet because she's so young)
She has taken Prednisone (20 mg and lower)- successful, but we could never wean her without it reflaring
Asacol 3 times a day-unsuccessful
Colazal 3 times a day- unsuccessful (made it worse)
VSL, Flagyl, Xifaxin
No meds right now
Thinking about starting 6 MP


MaryS
Veteran Member


Date Joined Jan 2003
Total Posts : 1668
   Posted 2/13/2008 2:48 PM (GMT -7)   
Becca-Boo,

Oh my yes, Daddies want to protect to the hilt and when something goes wrong and they can't, Yikes!! My Daughter was diagnosed 8 years ago and still it is not a good subject for my Hubby. He does in a way feel responsible as both he and his departed Mom have had gut issues in the past, but nothing ever diagnosed as IBD.

Your Daughter is very young so I am sure that makes Daddy (and You) feel even worse. Once everything gets sorted out (diagnosis, meds, etc) and your Daughter feels healthy, then so will Dad. He just needs to be prepared for all the ups and downs that come with IBD though. Dad is going to have to learn that he is not the cause, he can't fix it, but will have to leave it to the hands of Medical Science and a higher being if he believes in one.

It does and will get better in time.

RedAdmin
Veteran Member


Date Joined Aug 2003
Total Posts : 1017
   Posted 2/13/2008 2:59 PM (GMT -7)   
You know, I know it is a pat answer, but counseling is a great idea. for all of you.
Red (Lee Ann)
 Happy Bunny 
      When life gives you lemons, squirt juice in your enemy's eyes.


stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 2/13/2008 3:04 PM (GMT -7)   

Becca,
There is something about Fathers and their daughters, that bond of wanting to protect them and then this happens and he is beside himself wanting to make it better and knowing he cannot.  He needs time and yes a talk with her Doctor.  He may need some counseling for himself too.

I know he is feeling the loss of dreams of how he thought things were going to be for your daughter and he is truly broken hearted so he is walling off his emotions.  Remember Mothers have that built in instinct to be the caregivers and we flood ourselves with all the info we can so we can get the job done.  This is all foreign to him.  He will come around but he needs some helping in getting there.  Never doubt that he loves you all.

Kitt


 
Kitt, Moderator: Anxiety ~ Panic  ~ Crohn's
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picklechic
Regular Member


Date Joined Feb 2008
Total Posts : 32
   Posted 2/13/2008 3:04 PM (GMT -7)   
We are going to be seeing a psychologist who deals with this very thing. Our first appointment is tomorrow so I'm not sure what she'll say, but she worked especially with GI patients and families. Our daughter has a chromosome disorder (Turner's Syndrome) that was discovered at birth that can cause a wide variety of health problems, so we've been been through a devastating diagnosis like this before. It's not any easier the second time around and we just hurt that she'll be dealing with this too, for the rest of her life. There were some really hard days in the hospital when she diagnosed with Crohn's. But now that she's home and having normal bowels (hopefully on her way to a long remission), we can see that it may not be horrible all the time, that she may have times, like now, which are totally normal. I think it also helped us being in the children's hospital, seeing other children who had it much, much worse. I know it is going to be a long road for her, but all we can do is hope for the best and enjoy each day that is a "good poop day". It might help your husband to meet other parents of kids with IBD. We are looking forward to that too and want to join the ccfa soon so we can meet others in te same situation.
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