Supporting from Pre-adolescence to beyond

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Regular Member

Date Joined Oct 2009
Total Posts : 32
   Posted 10/19/2009 11:15 PM (GMT -6)   
As all of you are knowledgable and seem to vary in age range, I thought it would be best to ask ppl who know what it is like to live with an Ostomy.
As my 12yr old matures into teenage then adult years, how do I support her self-confidence, self-esteem as she grows older? I'm anticipating that she will have some self-image issues as she goes into the stages of first love, going away to school (not that, that will happen for quite some time yet) and just every day general activities. She so far handles it fairly well. But with puberty coming, I think there will be some issues pertaining to how she feels about her Crohn's and ileostomy.
And what about supporting siblings of Crohn's patients? My other 4 (and 3 of them have their own issues) don't always understand how or why it seems Sami is always sick. Are there any good children's/teen books for them, that might help?
Thanks for any insight.
Mom to 5 special children
 14yr old- GAD, PTSD, ODD, LD
 12 yr old- Crohn's Disease-total Colectomy Feb 09, PTSD, Dystymia, JRA, Asthma
 11 yr old- Globally Developmentally Delayed, Low Cognitive Functioning, PTSD
 10 yr old(almost)- Epilepsy, Unspecified Social/Emotional Disorder, PTSD, LD
 32mth old-Bright and Happy

Regular Member

Date Joined Jun 2008
Total Posts : 221
   Posted 10/20/2009 9:49 PM (GMT -6)   
I don't know how much help I will be I am 21 and was diagnosed when I was 19 but sick for a two years before. I can tell you that it is important that she tells some of her close friends, if they are her true friends than they will understand and be there for her. When it comes to guys I am still dealing with that myself. I just recently got my colostomy and although I haven't been in a relationship with it yet I do know that I need to take things slow and when the time is right to tell him. If he can't handle that he wasn't the guy for me in the first place. There are times when she is going to hate the way she looks and there are going to be times when she loves the way she looks. Whether she has crohns or not the drama she will go through in life will be the same, just remember to be there for her and to let her complain about her life to you if she wants to just don't plan on her listening to any advice you give. Even though my mom was always right in the advice she gave a rarely listened to her. I hope that helped a little.
Diagnosed with Crohns Oct. '07.  Have had 9 abcess/ fistula surgeries.  Colostomy 20 March 2009.
Current Meds:
Imuran 200 mg                            Omeprazole 20mg                     Vitamin D 2000 i.u.          Remicade 10mg x8wks
Synthroid 112mg                          Lexapro 20mg                           Tylenol  50mg
Birth Control                                 Calcium  500mg                         Morphine 40mg
Sucralfate 1gm x4                         Multi Vit                                     Cyclizine   50mg

Equestrian Mom
Veteran Member

Date Joined Mar 2008
Total Posts : 3115
   Posted 10/21/2009 6:04 AM (GMT -6)   
try going to they have some really great support links including a forum for parents and one for teens

Veteran Member

Date Joined Feb 2006
Total Posts : 5698
   Posted 10/21/2009 8:09 AM (GMT -6)   
Shaz would be a great resource for you and your daughter. She has had her ostomy since she was a young girl. She even has a website for ostomates. I'm sure she will see your post and reply.

dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free

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