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jessicap 06-24-2012 10:28 PM

Imperforated anus and vesicostomy?
Does anyone here have any experience with either of these things? My newest DD is 7 days old, we have been in a Childrens hospital since she was a few hours old. (she had to be ambulanced to one 3 hours away) She had her first surgery to get the stool out of her bowels, so we have a colostomy bag. Now she is going in for surgery tomorrow at 11:30am for a vesicostomy because her urethra is too short. She also has 2 vaginas, 2 uteruses (uteri?) and 2 cervixs. When she pees without a cath, it comes out of hte urethra, but then flushes back up the 2 vaginas and then floods the 2 uteruses and falliopian tubes. So she needs a vesicostomy done in order to go home without a catheter.

I guess I am not sure what I am looking for necessarily by posting this, support mainly I suppose, but also maybe for experiences...I don't really know what to expect with this vesicostomy, I know it is draining all the time, what does this look like diaper wise? Am I going to be forever and ever changing diapers because they are going to be soaked all the time?

I kind of feel lost in this whole thing. We have a great medical team, but I am finding that much of this diagnosis is very individual to each child...soooo....I guess I am just shooting in the dark right now.

jaelynsmommy61607 06-24-2012 10:36 PM

I have no advise just hugs! I hope surgery goes well mama!

mysticmomma1879 06-24-2012 10:38 PM

Couldn't read and not post. Congrats on your little girl! Hugs and prayers for you!

PoshPants 06-24-2012 10:39 PM

Re: Imperforated anus and vesicostomy?
I have no idea about any of this, just big hugs to you, must be hard and I promise one day everything will be more relaxed!

jessicap 06-25-2012 01:30 AM

Re: Imperforated anus and vesicostomy?
Thanks ladies, it so bizarre to me to think that this is even possible to happen...but alas it did and so I appreciate all the prayers and thoughts!!

mekat 06-25-2012 01:55 AM

Re: Imperforated anus and vesicostomy?
My kiddo has had a sigmoid loop colostomy for 7 years. It is getting late and the stuff I am typing is making less and less sense due to lack of sleep so I am going to make this short. You can try the UOAA and the Pull-thru Network for info too tired right now to provide links but remember Google is your friend. There may be some Yahoo groups as well but to be honest I have been out of the loop for years because I really haven't needed advice now that my kiddo's ostomy is stable and decided not to do a reversal. Keeping an ostomy bag on a baby is very hard that much I do remember so you really need to tap into a group to get advice because you are going to need lots of ideas to help you troubleshoot ostomy care.

808mamaof3 06-25-2012 02:11 AM

Hi Mama! :hugs: DS1 who is now 4 1/2 was born with a lowered imperforate anus. He had a fissure that allowed him to poop (no ostomy bag), but he did have an analplasty done to reconstruct his anus.

I remember being overwhelmed and so scared for my baby, but take heart, your DD will get through this and thrive. I don't know about the uteri/vaginas/cervixes as I had a boy, but I can answer some questions about anal surgery, postcare, dilations (post surgery), and diet/laxatives as a baby/child.

Please feel free to PM me to chat or even if you just need a listening ear. :)

jveprek 06-29-2012 02:28 PM

Re: Imperforated anus and vesicostomy?
My daughter has spina bifida and both those procedures are very commong for kiddos with SB. My daughter hasn't had any, so I'm not help there, but you can join or go on Facebook and join United by Spina Bifida and get answers for sure!

mekat 06-30-2012 08:35 PM

Re: Imperforated anus and vesicostomy?
I wanted to add if your kiddo keeps one or both ostomies permanently or at least long term look into switching to adult bags as soon as her abdomen is big enough to handle an adult flange. Pediatric bags just don't stick as well.

We had to wait until DS was over 2 years old because his colostomy was too close to his gastrostomy but once we switched it was amazing how much more wear we could get out of his appliances and blow outs almost never happened like they do with pediatric products.

Please don't believe everything the nurses in the hospital tell you (unless they are a certified wound, ostomy, continence nurse). I will take the expertise of a fellow ostomy parent over a regular nurse any day of the week because parents have to deal with kids in real life situations not rigid controlled environments.

I got not so great advice from NICU nurses and every time he has been hospitalized since he always winds up with stool all over him when the nurses do try to care for his ostomy. Yuck! I have gotten to the point where I have to take care of the ostomy in the hospital because I have yet have a nurse handle it with competence.

Because selling ostomy supplies is big business. Ostomy companies will give out generous amounts of free samples take advantage of that and experiment. UOAA maintains a list of 1-800 numbers for all the ostomy companies. You have to call and give them a mailing address for the samples but they are usually pretty generous and will give you tons of stuff to try.

DANIGURL 07-27-2012 10:37 PM

Re: Imperforated anus and vesicostomy?
I know I'm a little late but I'd first like to congratulate you on the birth of your daughter. Secondly, I want to tell you that you're a very special mom with a very special little girl. I too have a daughter who was born with anomalies very similar to your daughter. My daughter was born at 27 weeks with what is called a cloaca meaning she only had one opening down below where it is normal to have 3. She has an imperforate anus and has a colostomy and she had to have an immediate vesicostomy because the one opening that she does have didn't allow her to urinate. She also has what is called a didelphys uterus which is basically two uterus as well. She also has a vaginostomy because her vagina, bowels and bladder are a fistula meaning they are all connected somehow and share a single channel. My daughter has a vesicostomy and we use regular diapers that are a little larger and use Select Kids Diaper Booster Pads that come in a pack of 30 that we purchase from Babies r us, fold it in half, put it on top of her vesicostomy, and secure it inside the diaper. We change the pad every 3 hours and can usually get away without changing the diaper. Her vesicostomy drains urine freely into the diaper pad. Again, you are a very special mom with a very special little girl. Do some research to make sure her doctors aren't eliminating the possibility of her having a cloaca as well. I hope this has helped you some.

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