r there parents of uc kids out there?

klk

Regular Member

Joined : Apr 2006

Posts : 79

Posted 7/26/2008 5:42 PM (GMT -6)

hi all!

i have crohn's and have used this site so much. it's been very helpful - especially before my surgery! my 8 yr. old niece has been diagnosed w/ uc this yr & has had a horrible time - bleeding, complete bowel rest, tpn, lengthy hosp. stays, different meds to try, finally the md's began her on remicade and her 1st infusion went well. (she's currently in hospital). it's been a very difficult family year.

my brother and wife feel very "alone" in this, they haven't met anyone (parents w/ a uc child) and are looking for support. anyone out there who can relate? i will refer them to this site! thanks so much!

klk

jujub

Elite Member

Joined : Mar 2003

Posts : 10407

Posted 7/26/2008 6:52 PM (GMT -6)

Klk, we do have some parents of children with UC here, but your family may also want to check this board, which is exclusively for parents of children with IBD:

http://www.dragonpack.com/ibdsupport/parents/

Parents who use dragonpack rave about it.

I'm always so sorry to hear another child has UC. Give your niece a big hug for me.

Judy

Moderate to severe left-sided UC (21 cm) diagnosed 2001.

Avascular necrosis in both shoulders is my "forever" gift from Entocort.

Colazal, Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.

Co-Moderator UC Forum

Please remember to consult your health care provider when making health-related decisions.

ithurtsmom

Regular Member

Joined : Nov 2006

Posts : 289

Posted 7/26/2008 9:37 PM (GMT -6)

KLK, my DD was diagnosed at age 5. It's enought to make you out of your mind when you have a sick child. Please let me know they are not alone.

Joan

Daughter 5, UC

Pentasa 2X2 daily

Omega 3

Folic Acid 1000mcg.

Fiber

Probiotics

JewelsOK

Regular Member

Joined : Jun 2007

Posts : 364

Posted 7/26/2008 9:58 PM (GMT -6)

Definitely have them check out the dragonpack link above!

I have two kids with UC and enjoy both Healing Well and dragonpack, but dragonpack is where you get more info/support based on the issues that little ones face with this disease that isn't always talked about here like growth issues, school problems, and stuff.

Sorry to hear about another kiddo with this disease!!

Julie

Mom of Son 16 UC dx 07/02, Sulfasalazine, Imuran, folic acid, L. Reuteri, Zyrtec, Iron, Vit/Min

Daughter 9 UC dx 08/07 Colazal, 6MP, Iron, Vit/Min., Culturelle

klk

Regular Member

Joined : Apr 2006

Posts : 79

Posted 7/27/2008 4:23 PM (GMT -6)

thank you parents! will pass the info along!

Mark & Megan

Regular Member

Joined : Jun 2008

Posts : 89

Posted 7/28/2008 6:02 PM (GMT -6)

Visit Kimberly's site, she is the Mom of a 2 year old with UC who is headed into surgery soon, her blog is: sweetsliceoflife.wordpress.com I know she is member of dragonpack.com

Mark & Megan
7 yrs UC to 1 year J-Pouch

Surgery Photo & Journal below: http://ucstory.wordpress.com/

We are updating regularly it isn't just the surgery photos but info all about UC, Surgery and IBD!

~ChristieAnn67~

Regular Member

Joined : Dec 2007

Posts : 151

Posted 7/30/2008 12:36 AM (GMT -6)

OH , I"m so glad for this thread. Not for me, but for the parents of UC'ers. It must be soooooooo hard to be a parent and have to watch your child go through it. I can't (or don't even want to) imagine how hard it is....any support they can get is detrimental! So, in addition to the wonderful suggestions above, I'll add mine....I belong to this social networking site, http://www.wearecrohns.org and its a GREAT site where I"ve connected with wonderful people and great ideas, and resources, but there is a community on that site that is called "My child has Crohns" I do know there are alot of UCers on the site...maybe check it out....Or you could start a new community called "my child has UC"....who knows....but thought it would be good to mention.... the community can be found at http://www.wearecrohns.org/child

                                          ~Christie
41 yo RN, happily married, with 2 beautiful daughters, Tianna(14 yo) and Alyssa(10 yo).   Diagnosed L sided Ulcerative Colitis in Jan '04 and Diabetes type 2 in June '05. (Complete remission from Nov. 07 to July 08 d/t Remicade) hoping for remission again after this current flare.
                                         Medications
Remicade infusions ~ 11/6/07, 12/6/07, 12/20/07, 2/14/08, 4/10/08, 6/08, 6-MP 100mg daily, Pentasa 500mg twice a day, Lantus insulin 15 units daily, Amaryl 2mg daily, multi-vitamin daily, Calcium daily, B complex vit daily, and pro-biotics daily. http://www.wearecrohns.org/christie67

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r there parents of uc kids out there?

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