UC to J-Pouch Story

A Picture Speaks 1,002 Words

Posted by Megan on July 24, 2008

Emily, 2 yrs old, in Hospital - but she's Smilin'

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

IBDieses such as  Crohn’s and UC, do NOT discriminate by AGE.  Here is Emily, beautiful and happy, but in the hospital here for a bout of health issues from a yet undiagnosed reality of UC or CD.    Below Emily’s Mom explains what Emily may be suffering from, and what this would mean if she has surgery.  This is a young family living with a lot of reality, but they seem to have great support and are hanging in there.  For those of you parents out there living with a child of IBD, Emily’s Mom seems like a great contact for her parents of IBD support groups, etc…

 

Emily’s Mom Explains the possible UC Diagnosis and Surgery Option:   “Anyway the dr. we saw today was a new dr. that we hadn’t met before who is also part of the GI team here at TCH. She had the results of Em’s biopsies from her colonoscopy and it turns out that the findings are more in line with Ulcerative Colitis than Crohn’s disease. Ulcerative Colitis is basically the same thing as Crohn’s disease but it is only in your colon, while Crohn’s can be anywhere from you mouth to your anus. We are now faced withe dilemma of having her colon removed. If it is UC, having her colon removed should fix the problem. But I’m kind of weary of believing it’s UC vs. Crohn’s because her initial diagnosis is Crohn’s and something led her drs. to believe that it was Crohn’s before. And if we have her colon removed and her problems come back later we’ll know it’s Crohn’s and we may wish we had saved her colon. She has tried almost every medicine possible for her (at her age) to try and none of them have worked. She’s been in the hospital 3 times in the past 3 weeks for a total of 4 times this year. Her quality of life is not good right now. It does appear the Pentasa she is on right now is working, but it also appeared that the Remicade worked and the Humira worked (when both worked for 1-2 days before her blood returned). We just don’t know how long to keep trying other medicines and prolonging her misery, when she’s already tried the medicines most likely to work, the “big guns”. But Mark and I do understand having a colectomy is no small surgery and is a very permanent huge decision. It involves a c-section like surgery and a temporary ileostomy (a bag on your stomach to collect stool) for a few months, followed by another surgery to close of the ostomy. It can have many complications and can fail (including living with a stoma bag forever). Thankfully we can draw on the expertise and opinions of all the GIs at TCH (10+ drs.) to give us the guidance of what is the best thing to do.”

Update: Emily’s parents have scheduled her colectomy coming up in the next few weeks!  Be sure to send Emily and her family good healing vibes! And Emily’s Mom is updating her blog frequently at:  Sweet Slice of Life

Emily’s parents also told us that there is a great online support forum for parents of kids with UC/CD at www.dragonpack.com

Advertisements

4 Responses to “A Picture Speaks 1,002 Words”

  1. carter99 said

    I can’t imagine going through all that at 2 years old. Judging by the pictures though, Emily seems to be in pretty good spirits. Please keep us posted. I’ll be praying for yall.

    Carter

  2. paulette said

    has the specific carbohydrate diet been tried?

  3. enan said

    just like to offer some prayers to emily and your family, hope she recover fast.
    i know the pain as a parent my daughter was diagnosed a week before her 2nd birthday hospitalized twice, for 7 months the only thing that kept her close to normal is the combo of prednisone-pentasa. But there are blips from time to time until the start of the year 2008 thing were normal and getting better. She’s doing great now, she’s just taking sulfasalizine and been off pred since march. Im just letting you know that there is light at the end of the tunnel and i commend you for being brave.
    keep the faith

  4. Jen said

    Hang in there Emily! I am so glad you have such a strong family and friend support group 🙂

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

 
%d bloggers like this: