My dd is having a sub total colectomy next week

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Regular Member

Date Joined Aug 2009
Total Posts : 94
   Posted 11/7/2009 6:06 PM (GMT -6)   
Good afternoon all,

My husband and I have posted a few times on this board as well as the UC board. My 3 year old daughter will be going for a sub-total colectomy next week. She was diagnosed with UC in mid July. She went into a severe flare in September which had us go straight from steroids to Remicade. Unfortunately, she was allergic to sulpha based drugs, and we needed something to work quickly. While remicade provided some relief initially, it has failed to work for more than a few days. Right now she is scheduled for an ileostomy next week. Does anyone here have a young child with an ileostomy? I was wondering if anyone else has shared the same experience and can give me some advice on what to expect.

The nurses and surgeon say kids adapt very well, but we are worried. We have pretty much lived in the hospital for the last two months and hope this surgery allows her to be a happy little girl again. Can anyone shed light on how long it took to recover from this operation?

Thank you,

Equestrian Mom
Veteran Member

Date Joined Mar 2008
Total Posts : 3115
   Posted 11/7/2009 7:39 PM (GMT -6)   
I am sorry you have to go through this with your daugther shakehead I don't have any insight for you, but I did want to mention that at there is a discussion forum just for parents of children going through this surgery.

I am sure your darling daughter will handle this much better than Mommy and Daddy...hang in there, you will get through this!

Regular Member

Date Joined Jul 2009
Total Posts : 149
   Posted 11/7/2009 7:43 PM (GMT -6)   
Hi Katie's Mommy,

First of all, I am sorry to hear that your little girl is going through all of this at such a young age:( I am 31 years old, have 2 little girls of my own, and was suffering from UC since I was 21. I underwent j pouch surgery 1 month ago and am still recovering. I have a temporary ileostomy and am still adjusting. For me, the adjustment has more to do with what to wear and if it shows or not. For Katie, she won't have to worry about anything like that. I do not know how different it is for little ones to recover from this major surgery but typically it is 4-6 weeks. I recall reading posts from another mother of a 3 year old so if you want to look at older posts. Also, someone by the screen name "Lillysmom" posts on so that may be another place to post your question. Best of luck to Katie. My thoughts and prayers will be with you guys!

Darlene "Nutz"
Diagnosed with Ulcerative Proctitis 1999, changed to Ulcerative Colitis 2002.  J pouch surgery Oct 5, 2009

Veteran Member

Date Joined Feb 2003
Total Posts : 1251
   Posted 11/7/2009 9:45 PM (GMT -6)   
I was 10 when I had my ileostomy surgery due to UC, and I have to tell you, it's the best decision my parents ever made for me.

Their biggest fear was that one day I would turn around and say to them "why did you let them do this to me?' I never have. I grew up with my ileostomy and it's just a part of me. If somehow it became possible to reverse it, I'd think twice... no three times... cos an ileostomy is normal for me.

I was in the pool swimming a month after my surgery - kids do recover a lot quicker from this surgery than adults do.

I KNOW my parents worried about it a lot more than I did. My only question was 'will I still be able to go swimming?' When told I could, I said 'go for it'. All I cared about was getting well again. My parents did all the worrying about things like 'what will future partners think? " etc (for the record, none of my boyfriends have ever worried about it - well... one did, but it was his loss!).

My ileostomy turns 34 years old next January and I've never ever regretted having it :)
Ileostomy for 33 years due to UC

Moderator of the Ostomy and Psoriasis Forums


I'm not a complete idiot - some parts of me are missing!

Regular Member

Date Joined Sep 2009
Total Posts : 377
   Posted 11/8/2009 1:38 AM (GMT -6)   
cool  hello i would like to say BEST WISHES 4 KATIE!! I an 41yrs old and have had my ileostomy for 8yrs now. This surgery saved my life and i now have an ileostomy named rose-bud as that's what they look like. Anyway im also a mother and have a 3yr old grandaughter,and cant imagine what you are going through. Yes it's scary but i have known of children as young as 6mths old having this surgery and kid's are so resiliant when it comes to any type of operation. They seem to bounce back very quickly and the reason being is that they dont know any better and that's great. Usually it takes a couple of months to get back to "normal" activities and takes atleast 12mths for everything to completely settle down inside. Believe me you will see a remarkable change in Katie when this is over as she wont be suffering any longer,which is a positive on it;s own!!!!
Anyway if you ever need any advise pls dont hesitate to post to me as alway's willing to help if i can. GOOD LUCK KATIE UR IN MY THOUGHT'S ALWAY'S.................... smurf smurf smurf smurf smurf smurf smurf smurf smurf
best wishes to you to,
diagnosed with C in 2001.
colorectal anastamosis 2001.
surgery went horribly wrong,swab left inside,emergency surgery 2001.
total colectomy & ileostomy 2001.
surgical complication's-abcess,more surgery 2001.
more complication's-stitches come apart inside and ended up having more surgery and blood transfusion. 2001.
infection at lap site,another abcess. 2001.
i spent 12mths in Cabrini Private Hospital in Melbourne.
1993 diagnosed with endometriosis,then age 27yrs had radical hysterectomy then 2 mths later lost both ovaries.
2005. bi-lateral mastectomy,heart attack on the table,also contracted MRSA in coronary care unit,had staph for about 12mths. pic line for 6 mths for venus access,for daily antibiotics.
march 2009. op on a parastomal hernia & re-fashioning of stoma. Then complications,huge abcess in small bowel & peritinitus,emergency laparotomy to remove,icu for 5 day's. I think that's enough, no more.
Am taking AVANZA for my depression & ocd!!!!!!!!!!!

Veteran Member

Date Joined Aug 2006
Total Posts : 6571
   Posted 11/8/2009 6:51 PM (GMT -6)   
i will be thinking about her, and im sorry you are having to go through this.
But she will be healthy, and she will be fine.
When i had my surgery, one of CNAs knew a whole lot about ileos, and i later foudn out that she had a daughter that had one from birth to about 3 or 4 when she got a jpouch. She didnt have UC somethign was wrong with her intestines they werent all there or something.
But she said that her baby never really noticed, and that she just kept her in onesies so that she wouldnt mess with it, until she got older. But other than that she was fine, and she was healthy.
that would be the only thing i would worry abotu, was keeping a kid from messing with it, you know how they are, lol.
Anyway, good luck!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
-I have gone to find myself, if i get back before i return, keep me here-

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