Child born w/imperforate anus

[mytwokids]

Has anyone else had a child born with a condition called imperforate anus? My son was born with this condition and had to have a colostomy when he was under 1 day old. The colostomy was closed and reconstructive surgery was done last december. My son is 20 months old and I know that potty training him will be a challenge due to the fact that he never will have the same "gotta go potty" sensation that everyone else has and the doc says that with training, he will be socially continent. Has anyone else had to potty train a child with this condition?

[SFerber]

OH MY GOSH!!!! YES My daughter was!!! She is 14 now.

I have only met one other person...and he is a grown man. Husband of a friend at church.

[buggy20]

I know this was posted a long time ago, but my son was born with an imperforated anus as well. There are lots of us out there! There is a yahoo group specifically for parents with children with this condition. My son is 3 1/2 and is just potty training now. Have you heard of Dr. Pena in Cincinatti? He is the expert in the field. The reconstructive surgery is actually called the Pena procedure! Anyways, we went to visit him last summer and have learned sooooo much. My son now has a daily enema to keep him clean and this summer we will be going back to try laxatives. I hope to have him fully trained on his own by the end of summer (with laxatives of course)

Oh well you may not ever read this since it was so long ago but just wanted you to know there is a lot of information and help out there that can help you deal with all of this.

[SFerber]

I have learned now how vital Pro-Biotics are for our kids too.

PS thanks Beki for the PM I look forward to getting to know you better.

[karthiksrao]

Hi ppl,

I was born with this condition. Now I'm 23.. attending graduate school.
I had to undergo colostomy in the first couple of days and a pull through was done later on.

I manage myself through daily enemas. I've been doing this for several years now and I'll have to continue for the rest of my life. '

Feel free to contact me for anything.

Best wishes

[cheermomma]

Hi! I have a few questions for you, if you don't mind.

My son was born with imperforate anus and did the entire colostomy until 5 months, and then reconstructive surgery. He's now 2 1/2 andI'm wondering if it's normal that he's never had solid stool. It's not diahrea, but has a thick, but soft consistency. Did you experience the same? I started potty training, but he's had a hard time with the defication aspect. Is this why you use the enemas? Should I regulate his diet. I know you're not a doctor, but I'd appreciate any information you could provide. Our local doctors are not experienced with the situation and I'm having a difficult time scheduling a follow-up with Children's Hospital.

Thanks,

Katie

[amangi06]

I have a three year old daughter with this same problem. She went through the usual colostomy, pull through surgeries. And now I am starting to think she may never be potty trained because she has the same soft stool. She was put on miralax a daily dose of laxative by her doctor. I was told I am to regulate how much she gets according to her eating and bowls. Also she has strange eating habbits. She still wants to eat jared baby food at 3 1/2. She almost has a fear of new foods. Her doctor at Rainbow Childrens hospital in cleveland, Ohio said as long as she gains weight and takes vitamins to just go with it. I assume this is a result of all the hospital stays and trying to force clear liquids on her. Her condition was missed at birth and I discovered it at 2 months. She had to have the pull through done twice do to an insufficiant doctor in Chicago. Needless to say we moved to find a more experienced one.I just can't seem to get her "normal" enough to potty train. She either gets extremely backed up or has soft stool. Have you had any luck with potty training? Is it possible to be permently incontinent with this condition? Any advice or experiences would be helpful.

[SFerber]

Hi everyone ~

I want to re-enter this conversation. Gosh...my kiddo is not 16. And yes it is still very much a problem. I wish I could tell you it is not for her...and I worry.

This may be too much to say...but I want her to enjoy a healthy sexual relationship with her mate. I wonder with the issue she has...and the cleanliness factor how that will be possible. She is a beautiful girl...but that is a big issue. Physiological and psychologically speaking.

I am so glad there is someone here who as endured the surgery and is a young adult

I would LOVE to have more information...I know this is a very private conversation I wonder if there would be possibility of having this thread protected somehow.

[maggie j]

YES! My grandson is 7 years old and he was born with an imperforate anus. I would like for him to know that he is not alone, but we live in Canada and are having a lot of difficulty connecting with other families and children. If anyone has any information on other forums and groups that we can become a part of (especially in Canada) we would greatly appreciate it! Thank you for sharing your stories and giving us hope.

[mich2002]

Hi,my daughter was born with the same problem (imperforate anus,given stoma at birth and had reconstruction at 3 months and stoma reversal by 6 months).She is now 3 1/2 and we are trying to do the potty training but feel like were getting no where.We are from England and i know of no one else who has had or has this condition.I feel like I'm at a dead end,it would be great to talk to someone else who has gone through this with there child or themselves.

Michelle