How and when to tell your family

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Shimmer74
New Member


Date Joined Dec 2007
Total Posts : 4
   Posted 12/14/2007 4:03 PM (GMT -7)   
Hello all,
 
I am new to the forum. I recently went in for some testing because I have been having pains in my abdomen.  The results indicate that I have Crohn's disease.  I am going in on Monday to see a specialist and will probably get some additional testing.  I really know very little about Crohn's accept for what I have read on the web.  I am trying to figure out when and how to tell my dad and brother.  I don't know a whole lot yet, so I don't know if I should wait until next week.  The other big thing is my mom had ulcerative colitis and actually died at 50 because of complications related to the condition.  I don't want to worry them, but I think I would feel better if I told them.  How have other people handled this and how much and what do I tell them? 

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 12/14/2007 4:35 PM (GMT -7)   
I think it's best to be honest and upfront...since your family is already aware of IBD via your mom (sorry about the loss of your mom) they will of course be upset but probably more so if you keep them in the dark.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


dragonfly137927
Veteran Member


Date Joined Sep 2006
Total Posts : 2527
   Posted 12/14/2007 4:37 PM (GMT -7)   
Personally I would tell them as soon as possible. I was 8 when I was Dx so I have had it now for 20 years...diagnosed anyway had symptoms for 3 years before that. I have had complications this year. Prior to this year meds alone where keeping the CD controlled. This year I had to have emergency surgery in February, had complications with that surgery and ended up needing emergency surgery 1 week after the 1st one. I also had complications with this surgery one of them being a residents fault she got feces in my incision and when I asked her to flush it with sterile saline she proceeded to dab the poop up with non sterile gauze and said that will be okay...she made me have a wound infection and I had a wound vac and now I have a 1500 bill from the wound vac complany...had I stayed in the hospital the insurance would have payed 100% of it...but back to this yr for me. I ended up having a temp ostomy in that 2nd surgery in February. I had it reversed and removal of an abscess that wouldnt heal then adhesions removed, abd walls scraped from infection etc.

My Cd has already returned and now it seems as though it is now in my colon where b4 it was always in my ileum. I have had some tests already and am having a colonoscopy this week to determine how much of the colon is involved around the fistula area as well. I have to have another surgery.

I too had a relative pass away from complications with UC. His complications were durgically related he went in to Lahey clinic in boston to have the j pouch proceedure this was 16 years ago. The proceedure was done in 3 steps (not sure if it still done that way) he had severe sepisis mult complications etc and passed away at 29.

CD is different than UC in some aspects and the ccfa site has a lot of info but if you go to crohn's and me site they will send you 100 questions and answers about uc and cd just for registering on their site. I would tell your family so that they can be there for you as far as support explain to them the differences between UC and CD especially since all you really know about at this time is UC except as you say from what you have recently read.

I think it is a tough illness but the more support you have the easier it can be at times especially when in a flare it can make it easier. I find my family is supportive but esp my husband has a tough time with it since I lay down a lot at home he thinks well I can do a lot he doesnt understand how crummy we can feel and still look as if we feel fine.
Dx with Crohn's 1987, symptoms as early as 1984.
Temp iliostomy February 2007, reversed June 2007, Ovarian cysts, migraines, allergies (incl food allergies) , oral allergy syndrome (diff than true food allergies), Asthma, Gall Bladder removed 1999, Inguenal hernia 1987
 
 
 


stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 12/14/2007 5:03 PM (GMT -7)   

Hello Shimmer and Welcome to Healing Well.  I am Kitt.

Talking about Crohn’s disease can be difficult, especially when you are explaining your condition to people who may not fully understand what you are going through.

I agree that you should tell your family.  Perhaps you would like to check out our Resource Center:

http://www.healingwell.com/ibd/

Another thing I would suggest is to ask your physician for an educational pamphlet on Crohn's.  You could perhaps pick up a few and give your family members a pamphlet that usually answers questions in layman's terms.

My hubby has had Crohn's for 32 years and has had 3 major surgeries, in between he has done very well.  Each person is different but we will pray that your new Dx will be well controlled.

Again a warm welcome and keep posting.

Wishing you a Joyous Holiday Season,

Kitt


 
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Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 12/14/2007 5:45 PM (GMT -7)   
Welcome to HW
You have come to a great place for support and empathy as well as total understanding
The ppl here are fantastic

I agree tell them asap....and get info all handy to help explain just what this DD can and will do to you /us

The CCFA also has great info in it ..it is in resources.....

Stay with us plz.........LYN
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Shimmer74
New Member


Date Joined Dec 2007
Total Posts : 4
   Posted 12/17/2007 11:37 AM (GMT -7)   
Thanks all for your replies, ideas and support.

yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 12/17/2007 11:40 AM (GMT -7)   
welcome and so sorry about your mom. I agree, talk to them soon. be prepared for the first few months to be rocky with meds, tests, and appts. Let them know that even you don't know everything and you can all support each other. take care and keep coming here. yp
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. In December had adhesions cut through a laparoscopy. Now just taking Glycolax, metamucil and vicidin as needed.

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