Grieving

[Mehita]

This article was primarily written for the loss of a loved one, but as I read it, I kept thinking about all the families and parents who come here for the first time grieving over Crohn's and Colitis.

http://identityrenewed.com/2013/11/21/15-things-i-wish-id-known-about-grief/

 

[Farmwife]

Thanks

 

[Gmama]

Thanks for this...I have lots of days where I do feel like I have lost my son. Our life and focus are so different now than a year ago, I long for the way our life was. I am so worked up everyday, that even if it is a "good day" I'm worried and waiting for something bad to happen. I'm not real sure what to do with it all

 

[CarolinAlaska]

You aren't alone Gmama.

 

[Wendles]

Hi guys, my son has been in remission for 10 weeks ( been on een for 8 ) slowly starting back on food and all was going great until he had tomato yesterday pain within a couple of hours and pain again today with nausea . So now I'm back to being anxious annoying worried mum again life was good hopefully this is just a hiccup and maybe we might have just found a trigger . I gave him no skin or seeds . God I hate this disease !!!!!!!!! It really does make your life a total misery seeing your child in pain . You do definitely grieve for the life you had before being diagnosed . Sorry a little down .

 

[my little penguin]

:hug: WEndles.

Typically symptoms do come back once food is reintroduced after EEN.
Does your child have another maintenance drug started?
MOst docs start a maintenance drug the same times as EEN so the when the EEN is done the drugs are ready to take over.

most kids with bid need at least an immunosupressant due to the severity of the disease in children.


It does get better and there is a process to it all.
AFter 2 years we have finally hit our new normal and things are mostly ok
still have bad days but there are more good than bad days.

:ghug:

 

[Wendles]

He is on aza and has been since may its all so worrying and you do wonder every day if it will b a good one . He was on entocort and has just finished that also wondering if that has anything to do with it. Will see what today brings .

 

[my little penguin]

It is hard - it took us over a year to find the right med for ds since no two ibd kids are the same
hope things calm down soon