Reply Hey Mom! Learn more about the Gerber Life Insurance Grow-Up Plan!
 
Thread Tools Display Modes
Old 07-27-2012, 10:39 PM   #11
DANIGURL
Registered Users
 
Join Date: Jul 2012
Location: Texas
Posts: 3
Re: Imperforated anus and vesicostomy?

I forgot to add that my daughter is now 20 months old. I hope your daughter is doing well.

Advertisement

DANIGURL is offline   Reply With Quote
Old 07-27-2012, 10:56 PM   #12
DANIGURL
Registered Users
 
Join Date: Jul 2012
Location: Texas
Posts: 3
Re: Imperforated anus and vesicostomy?

I forgot to add that with my daughter having a fistula/connection with only one opening, when she would urinate, internally her bladder would fill up and spill over into her vagina and her vagina would become distended and have to be cath through the one opening she had. The vagina becoming distended with urine is called hydrocolpos. They were able to confirm her anatomy and what was happening with ultrasound and MRI. My daughter was in the NICU for 11 months and will eventually have to have reconstruction and a pull thru. Please feel free to message me anytime.
DANIGURL is offline   Reply With Quote
Old 10-14-2012, 09:19 AM   #13
rileykidmama's Avatar
rileykidmama
Registered Users
seller
 
Join Date: Dec 2007
Location: Terre Haute, IN
Posts: 1,334
My Mood:
Re: Imperforated anus and vesicostomy?

Our dd was born with cloacal exstrophy (OEIS complex) in 2005; this includes imperforate anus and reproductive abnormalities. She still has her colostomy and will for the rest of her life; she had a pelvic MRI and her general surgeon said she doesn't have enough muscle to do a pull through. She'd either be chronically constipated or incontinent. She had a vaginoplasty at 9 months old. We recently discovered that she had a second internal set of organs that had to be removed. Please see our daughter's website in my signature; congrats on your new addition.
__________________
Kara, wife to college sweetheart J and SAHM to E, diagnosed with OEIS complex at birth. What is OEIS? See E's website! http://ww2.netnitco.net/users/zens
rileykidmama is offline   Reply With Quote
Old 10-14-2012, 10:26 AM   #14
jessicap
Registered Users
seller
 
Join Date: Dec 2006
Posts: 1,706
Re: Imperforated anus and vesicostomy?

WOW! Thanks so much for the support ladies! My computer broke, so I have not been able to check back to this thread for a long time. I so appreciate your support and advice.

So far life has been good. We had MASSIVE issues with her ostomy bags, I was going through 9 or more bags a day. It was ridiculous and frustrating and I was pretty sure I was not up to the task.

I met with some ostomy nurses in the area we live in, but as hard as they tried, they just couldn't help me and Shelby out. It was so frustrating, finally we went back to the children's hospital that her surgeries have been at and where her surgeons are located at, it is 3 hours south of me. And the ostomy nurse there is FABULOUS! ABSOLUTELY FABULOUS! and she fixed that problem for us. When I had asked back home here about a belt for her, I was told they don't make them small enough, but then down at the Childrens' Hospital, the nurse there told me that she uses Trach Ties for a belt for babes, and it fixed everything! It was a God send for sure!

We have since had a spine MRI and a Pelvic MRI, that went well. She is looking like a great canidate to have everything put back to where it needs to be and for anaplasty. She has everything she is supposed to have other than the anus I guess and so they are expecting her to respond well to the surgery.

Thank you again!!!
jessicap is offline   Reply With Quote
Old 01-04-2013, 04:20 AM   #15
Louise C
Registered Users
 
Join Date: Jan 2013
Posts: 1
Re: Imperforated anus and vesicostomy?

Hi, Ive only just seen this post so sorry for late reply. My daughter is also a cloacal baby, she is now 2. We have had a veisocostomy once before and are now going back to it again early this year. There is a group called cloacal OEIS/Cloacal Exstrophy on facebook. This group is full of support everyone asking questions, giving advice and feedback. I was so happy to find it, even just to rant!! Hope you are finding your answers, its a difficult road sometimes to follow but there is always light at the end of the tunnel
Louise C is offline   Reply With Quote
Old 01-11-2013, 09:58 PM   #16
jessicap
Registered Users
seller
 
Join Date: Dec 2006
Posts: 1,706
Re: Imperforated anus and vesicostomy?

Well ladies she had her pull thru on Dec. 10. Although we consider the surgery a success because they were able to create the holes necessary and she came off the table alive. BUT her anomalies were a lot higher up than originally thought, even though she had the MRI, xrays, etc....so we are not sure of continency. BUT praise God that He is in control and we know how to pray for her better now. We were also told that her 2 uteruses are half sized uteruses so for now it is not recommended for her to ever have children. BUT who know where medical technology/science will be in 18-20+ years.

She also had her vagiplasty and that went well as well. We are currently doing the anal dialations, and that has been wickedly emotional for me. I raelly really struggle through it all. But its okay because I know it is necessary.

She goes back to the hospital to be scoped to see how she is healing at the end of this month and then we will make the plan for closing down her ostomies at that time.

UFFDA! Lots and lots going on.
jessicap is offline   Reply With Quote
Old 01-11-2013, 10:02 PM   #17
jessicap
Registered Users
seller
 
Join Date: Dec 2006
Posts: 1,706
Re: Imperforated anus and vesicostomy?

Quote:
Originally Posted by Louise C View Post
Hi, Ive only just seen this post so sorry for late reply. My daughter is also a cloacal baby, she is now 2. We have had a veisocostomy once before and are now going back to it again early this year. There is a group called cloacal OEIS/Cloacal Exstrophy on facebook. This group is full of support everyone asking questions, giving advice and feedback. I was so happy to find it, even just to rant!! Hope you are finding your answers, its a difficult road sometimes to follow but there is always light at the end of the tunnel
Louise, thanks for the info. I asked for permission to join the facebook page, but so far have not heard anything. I think I asked for the rights later last week or early this week.

If you don't mind me asking, why back to the vesicostomy?

As far as finding the answers, I have learned there really are no "answers" that fit everyone...I am consistantly finding out something that she should have been born with because of her anomolies...or things that should be this way or not this way but they are aren't or are, if that makes sense. Our surgeon will not give us stats or anything because she is so unique and it is a really tough thing for me to have so many unknowns, BUT it is okay. Thanks for your support.
jessicap is offline   Reply With Quote
Old 02-28-2013, 01:29 PM   #18
katz4bratz
Registered Users
 
Join Date: Feb 2013
Posts: 1
Re: Imperforated anus and vesicostomy?

I am so excited that I found this site!! My dd was born at 28 weeks diagnosed with a sacrococcygeal teratoma. Basically, it was a tumor on her tail bone half the size of her body. It damaged the whole lower half of her body. The tumor was blocking her urethra and causing the urine to back up into her kidneys. After getting numerous UTI's they decided to perform the vesicostomy. She had her surgery last May when she was 11 months old. They say that they are gonna do surgery on her when she is older but im not exactly sure what they are gonna do. I think they are gonna make it where we can cath her instead of just letting it drain continuously. We are not sure about her bowels and I need to make the appointment to have them checked but im currently 3 weeks away from having baby #4. I don't think she can control her bowels. She is hard most of the time and I have to help her get it all out. sometimes I have to use miralax or i try to adjust her diet. She is in a size 6 diaper and Im starting to have problems with her leaking. Especially at night. Ive gotten her in the habit of taking water to bed and she most always wakes up soaked I look forward to talking with you all and getting advice and support and giving advice and support. Its so nice to be able to talk to other moms with similar problems. Can't wait to hear back from you all!
katz4bratz is offline   Reply With Quote
Old 03-01-2013, 07:54 AM   #19
Bellaroo
Registered Users
 
Join Date: Mar 2011
Posts: 1,553
Re: Imperforated anus and vesicostomy?

Quote:
Originally Posted by jessicap View Post
Well ladies she had her pull thru on Dec. 10. Although we consider the surgery a success because they were able to create the holes necessary and she came off the table alive. BUT her anomalies were a lot higher up than originally thought, even though she had the MRI, xrays, etc....so we are not sure of continency. BUT praise God that He is in control and we know how to pray for her better now. We were also told that her 2 uteruses are half sized uteruses so for now it is not recommended for her to ever have children. BUT who know where medical technology/science will be in 18-20+ years.

She also had her vagiplasty and that went well as well. We are currently doing the anal dialations, and that has been wickedly emotional for me. I raelly really struggle through it all. But its okay because I know it is necessary.

She goes back to the hospital to be scoped to see how she is healing at the end of this month and then we will make the plan for closing down her ostomies at that time.

UFFDA! Lots and lots going on.
I'm not sure if the doctors made this comment with just the size of her uteri in mind or if they were considering all the factors but if it was just due to the size than I can tell you that they are incorrect. Many women with uterine anomalies (including uterus didelphys - two halves of a whole uterus) go on to have healthy pregnancies and babies. I was initially thought to have a UD and no doctor ever tried to discourage me from having children. My diagnosis turned out to be wrong (I have a different type of anomaly that divides the uterus) but was still able to carry my son to term.

Just wanted to through that out there since I know you are dealing with a lot right now and wanted to give you a bit of encouragement.
Bellaroo is offline   Reply With Quote
Old 03-07-2013, 10:00 PM   #20
808mamaof3's Avatar
808mamaof3
Registered Users
seller
seller
 
Join Date: Mar 2010
Posts: 5,986
My Mood:
Quote:
Originally Posted by jessicap
Well ladies she had her pull thru on Dec. 10. Although we consider the surgery a success because they were able to create the holes necessary and she came off the table alive. BUT her anomalies were a lot higher up than originally thought, even though she had the MRI, xrays, etc....so we are not sure of continency. BUT praise God that He is in control and we know how to pray for her better now. We were also told that her 2 uteruses are half sized uteruses so for now it is not recommended for her to ever have children. BUT who know where medical technology/science will be in 18-20+ years.

She also had her vagiplasty and that went well as well. We are currently doing the anal dialations, and that has been wickedly emotional for me. I raelly really struggle through it all. But its okay because I know it is necessary.

She goes back to the hospital to be scoped to see how she is healing at the end of this month and then we will make the plan for closing down her ostomies at that time.

UFFDA! Lots and lots going on.
Those anal dilations were the hardest things I had to do in my life. Broke my heart, but hang in there. My DS just turned 5 and is able to poop and doesnt remember any procedures.
__________________
*** Wifey to my love and mommy to my two little men and my sweet baby girl ***
808mamaof3 is offline   Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump

Copyright 2005 - 2014 Escalate Media. All Rights Reserved.