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  #1  
Old 06-13-2007, 04:02 AM
flink3
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Default Bowel &/or Bladder Program & routines

Hi,* I have an (almost) 8yo daughter who was born with L5 S1 SB.* she walks with KAFOs & we were also able to convince ACSD that she needs AFOs, which although she cannot tolerate for long periods of time expands her abilities somewhat.* Hannah is still in diapers,* she is not catheterized & not on any bowel program.* MUMSE (Hamilton)* has not pushed us in any way as she has not had any infections of any sort that we have noticed.* I feel that the time is coming that we should start to make an effort to increase her independance.*

Right now I lift her from a chair on to the toilet, help her clean up, and then back on to a diaper.* she needs to be changed at least every 3 hours.* I would like to hear from others what they do to maximize their independance, what they feel most empowering, from every means (just an enema to surgical "enhancements")* are there any drawbacks? (eg leakage)* do the drawbacks outweigh the benefits?* what would you have done differently?* is 8 too young for surgical "enhancements"?

We would appreciate any & all opinions as we would like to do the best for our daughter without pushing her to something she is not ready for just so we can have our independance.* I hope that makes sense...

Thank-you

Sandra - <a target="_blank" href= "mailto:flink@golden.net">flink@golden.net</A>

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  #2  
Old 07-06-2007, 09:08 PM
tbalsillie tbalsillie is offline
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Default Bowel &/or Bladder Program & routines

Hi Sandra,

*

I can only speak to you from my experience, and I would in no way want to stop you from carring for your daughter in ways that you can handle, nor would I wish to mipose my views on you, but I had an implant put in for bladder control when I was 12, but it removed since it was not effective and made my life worse than it did, better. I am now 34, working with the SB&H of Ontario. I would say that if anyone can do less to themselves trying to be "perfect" or*"normal"*the better. However, that having been said, there are things such as enemas, and or cathing that can help make life easier, as long as you use the right options for your individual case.

*

Give the association a call at the toll free number, and find out what ideas our team can help you with.

*

Thomas

tbalsillie@yahoo.com

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  #3  
Old 07-09-2007, 03:04 PM
Skyebandit Skyebandit is offline
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Default Bowel &/or Bladder Program & routines

Hi Sandra (and Thomas)

My 11 year old daughter has the c-tube and it has made the world of difference concerning her bowel control.* I would highly recommend researching this option - we had it inserted when she was 6 years old at Sick Kids in Toronto.* We travel there from Ottawa each year to have the tube replaced.

She also has learned intermittent cathertization, which she started independantly doing just last year.

Pam

*

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  #4  
Old 01-31-2008, 02:59 AM
yeayea yeayea is offline
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Default Bowel &/or Bladder Program & routines

Hi Sandra and others.

This is my first time here and I look forward to sharing and receiving information, etc.

Sandra.* My daughter is 9.* She walks unassisted, but wears pullups.* She is cathetarized 4x daily and disempacted 2x daily.* I *thought* I wanted her to have surgeries, i.e. Mitrofanoff and MACE/cecostomy, but now I'm not so sure.* She was learning to cath. herself, but became *very* discouraged and right now has no interest in trying again.*

I personally feel that perhaps I am being led to explore different options for my daughter's bladder and bowel management.*

Pam.* I would be interested in knowing, if you don't mind sharing, how your daughter learned to cath. herself and also how she manages with the c-tube.

Thank you,

*

Tessa,* in Hamilton

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  #5  
Old 02-01-2008, 08:45 PM
Skyebandit Skyebandit is offline
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Default Bowel &/or Bladder Program & routines

Hi Tessa

It took a long time for my daughter to feel comfortable cathing herself.** She was not able to do this until she turned 10.* Before that, she felt it was yuky and much prefered that we took control of this part of her life.* I think age played a huge part in this.* We explained to her that she would have more freedom, be able to go away from us for more than 4 hours at a time, be able to go to sleep overs and parties.* At first, I helped guide her hand to where she should insert the catheter.* Once she figured out where the entry was, we never looked back.* The only thing we deal with is having to remind her to go to the bathroom.

The cecostomy was done when she was 6 years old, just before she started grade 1.* I was adamant that she would start grade 1 in underwear.* We have problems with the c-tube with discharge around the entry and she is sensitive around that area.* Unfortunately for us, the opening is high so it does make buying pants a challenge.* We prepare the solution for her but am looking forward to the day when she is comfortable doing this herself.

*

Hope this helps

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  #6  
Old 02-01-2008, 10:49 PM
yeayea yeayea is offline
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Default Bowel &/or Bladder Program & routines

Hi Pam, again

I feel encouraged.* Because Jewelle has been unsuccessful in trying to self-cath., she has pretty much given up.* I tried really hard today to*get her to try again.* Nope!* I'll keep trying.* Maybe let her read your post?

I have seriously considered letting her have the Mitrofanoff surgery, but if she can learn to cath. herself, it would be one less surgery for her to have.* I think she should have the c-tube inserted.* Managing her bowels has proven difficult.* I sometimes give her PEG 3350, but I don't feel comfortable keeping her on it longterm.* She will eat a jar of pureed prunes,* My concern is that her bowels are/may never completely empty.* I don't believe that healthy.*

I met with her urologist about the surgeries and was somewhat disappointed with his suggestions.* He suggests cathing 5x/day instead of 4 and to prevent accidents, insert an OB tampon into her rectum!* Perhaps this is "normal", but at this point in time I really cannot see myself doing that to her.

What you have shared has definately been helpful and encouraging.* Thanks,

Tessa

*

*



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  #7  
Old 02-10-2008, 10:46 PM
Victoria Victoria is offline
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Default Bowel &/or Bladder Program & routines

Hello.* We are*parents of twin girls who are now 10.* Our one daughter was born with sb in the l2/l3 region.**She is in a wheelchair and*is paralyzed from*the pelvic area down.* She has had several surgeries in her life andit totally against*any future surgeries and we can't say that we blame her!* *Our daughter is very happy and*quite independent*so far.* She sees herself no different that any other children except that*she is in a wheelchair.* *It is coincidental that I come upon this forum today as we had a very difficult day with self-cathing.* Our daughter uses a cathing mirror that we purchased from our local home health supply store.* She wraps the arm of the mirror around her leg and positions it so she can see but it is still very difficult and she is very frustrated.* We have assisted her with most self care to this point and still do but we want her to be more independent as does she.** She self caths at school as well with her EA's assistance.* As far as her bowels are concerned I can't say that we have been successful at all.* It seems we have been* battling this for a long time.* We take her to Bloorview MacMillan Centre in TO and they have been very supportive.* We have thought long and hard about the C-tube but our daughter is against it.* On the other hand we just can't seem to manage avoiding accidents.* These accidents are really affecting her at school and always seem to happen when a friend is here or we are out.* So far her friends have been*very understanding but we are*awaiting*the day when they are not.

We have only tried diet and Miralax in juice to try and keep her going but with no success.** Our daughter did meet a little girl at Bloorview who had just had a c-tube and it looked very sore and our daughter was very upset by this.* We also received samples of the coloplast "tampons" for the bowel but she refuses that as well.* I only know one other child that has had the c-tube that has told his mother it was the best thing he ever did (he is also 10).* We have also discussed the Mitrofanoff but again, it seem so drastic.* Looking forward to any*comments or ideas you wish to share.** Thanks.

Vicky

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  #8  
Old 02-19-2008, 05:28 PM
yeayea yeayea is offline
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Default Bowel &/or Bladder Program & routines

Hi Vicky.

Thanks for sharing.*

While my daughter is not in a wheelchair, I can certainly appreciate the frustrations of yourself and your daughter.* My daughter tried a "knee-spreader mirror".* It was, to her, useless.* Very frustrating, and quite frankly, a waste of money.* My daughter is cathed at school by the EAs.* I am *very* appreciative of this.* However, I would like her to become more independent and learn to cath. herself.* She does try, sometimes, but* is very resistant.* Personally, I would really like her to learn to cath. herself, especially *before* she starts her period.*

We have also tried Miralax (PEG 3350?).* While this certainly has helped to keep her stools soft enough for her to push out herself, I don't feel comfortable giving it to her all the time, i.e. every day.* It really is hard to keep her bowels "regular".* Every day is so different.* She has become so aware of her bodily functions and is reluctant to participate in physical activties for fear of having an "accident".

I too thought that Mitrofanoff was an option for my daughter.* I have since had second thoughts.* However,*the c-tube is definately something I am considering for her.*

Her urologist suggested using an "OB tampon" in her rectum to prevent accidents.* Quite frankly, I'm not receptive to that.* Can you tell me more about the coloplast tampon?*

Sorry, I don't really have any words of advice for you.* It seems to me we are both pretty much in the same boat

Take care,

Tessa

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  #9  
Old 02-26-2008, 02:20 PM
Victoria Victoria is offline
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Default Bowel &/or Bladder Program & routines

Hi Tessa.* Nice to hear from you.* Our daughter will not use the coloplast*but I have a few samples that I got from our nurse at Bloorview MacMillan Centre.* I am hoping she will try them for swimming.* It seems whenever she gets in the water, it is time for a bm.* She too is reluctant given the fear of accidents.* She is totally against the C-tube*though but we hope to find out more info in the event she wants one in the future.

Anyway the packaging says "Conveen" by Coloplast and it looks like a tampon but is only about 1" long and has a piece of gauze attached to it, I suspect to put your finger in for insertion and to remove.* It doesn't look to invasive, at least not as much as a tampon.* I would also be unhappy with urologists suggestion of a tampon.***

My husband and I are also having mixed feelings about the mitranoff.* I want to find out more information.* The staff at our spina bifida clinic say many of the girls have the mitranoff so it is easier to cath.* I can see that given you wouldn't have to fully undress to self cath.**For now our daughter isn't* totally*independent in the washroom given the dressing*aspect.*

So, I guess like you, we will move forward and take each day as it comes.* Our daughter is very healthy otherwise so we are thankful but it has come to the time in her life where these issues are becoming more prevalent and interferring with her independence and to some degree her happiness and sense of frustration.

I look forward to taking advice and suggestions from other parents who face the same issues.* We are in a small community and we really don't have other parents to share with, especially dealing with spina bifida.

Take care Tessa.

Vicky

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  #10  
Old 02-26-2008, 05:44 PM
Skyebandit Skyebandit is offline
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Default Bowel &/or Bladder Program & routines

Hi Vicky

My daughter has a c-tube, which we had put in at Sick Kids in Toronto when she was 6.* While she isn't happy with it, it has still given her independance and almost free of bm accidents.* The Chait Trap door does stick out a bit and the entrance to the tube can get granulation.* As well, if we aren't on top of things she will get seapage around the site.* But she* swims without a swimmer and is free to go on sleep overs without worry.* She also self-caths - the mirror is useless, we tried.* So what clicked was that I helped her feel for where she should put the catheter and one day I told her to sit in the bathroom for a while, no rush and see if she could do it herself.* Didn't happen the first time, but no pressure we tried again and one day it clicked.

We were not given the option of the mitronoff because we were told that because she is ambulatory she can get on the toilet and self-cath.* I have heard good things about the mitronoff, but it is huge surgery compared to the c-tube.* As well, the c-tube is self-reversable meaning if one day she doesn't want it, you just pull the tube out yourself.* With the mitronoff, its not easily reversed and requires further hospitalization.

Pam

*

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