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-   -   Imperforated anus and vesicostomy? (http://www.diaperswappers.com/forum/showthread.php?t=1411301)

jessicap 06-24-2012 11:28 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 11:36 PM

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

mysticmomma1879 06-24-2012 11:38 PM

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

PoshPants 06-24-2012 11:39 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 02:30 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 02:55 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 03:11 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 03:28 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 www.spinabifidaconnection.com or go on Facebook and join United by Spina Bifida and get answers for sure!

mekat 06-30-2012 09:35 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 11:37 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.

DANIGURL 07-27-2012 11:39 PM

Re: Imperforated anus and vesicostomy?
 
I forgot to add that my daughter is now 20 months old. I hope your daughter is doing well.

DANIGURL 07-27-2012 11:56 PM

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.

rileykidmama 10-14-2012 10:19 AM

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.:goodvibes:

jessicap 10-14-2012 11:26 AM

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!!!

Louise C 01-04-2013 05:20 AM

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

jessicap 01-11-2013 10:58 PM

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 01-11-2013 11:02 PM

Re: Imperforated anus and vesicostomy?
 
Quote:

Originally Posted by Louise C (Post 16112689)
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. :)

katz4bratz 02-28-2013 02:29 PM

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!

Bellaroo 03-01-2013 08:54 AM

Re: Imperforated anus and vesicostomy?
 
Quote:

Originally Posted by jessicap (Post 16147047)
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.

808mamaof3 03-07-2013 11:00 PM

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. :)

:bighug: 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.

7mom7 03-07-2013 11:29 PM

Re: Imperforated anus and vesicostomy?
 
Just now reading through all of this...:hugs: to all the families struggling. My DS had a pull-through as a newborn and still has potty issues. I suspect we should have done dilations years ago but our surgeon didn't recommend it- we barely had any followup appointments with him. Sometimes it's a daily battle to release the past and know that God is in control and has a perfect plan for our son. We have plans to see a new pediatric GI in April. I'm not sure what I expect from the visit or if we are even willing to consider more invasive approaches at this point. He has what I believe to be pseudo incontinence. It's certainly been a learning process for our whole family.


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