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  #1  
Old 08-12-2003, 02:01 PM
Katty Katty is offline
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Hello,

My name is Katty and I was born with spina-bifida myelomeningocel.* I am in my 30's, to be married and have a beautiful and healthy 5 year old daughter.* I can walk without help and I have had many successful surgeries rectifing my incontinence.*

If you are a parent, teen or adult and want some info let me know.

*

*

*

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  #2  
Old 08-17-2003, 03:56 AM
Pamm Pamm is offline
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I would like to hear more about your successful surguries regarding incontinence. I was born with the same condition as yourself with incontinence being my big concern. I find myself getting more isolated because of the incontinence and would be interested in getting info that my help this condition. Thanks!
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  #3  
Old 12-02-2003, 05:25 AM
ICTHUS ICTHUS is offline
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ditto here, Katty. I'm 18 years old and the continence issues, although I usually keep them under control, can be severely debilitating socially. So please shed some light on this issue for us. How has your continence been restored?

Grace and peace,

Ryan Hill

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  #4  
Old 12-02-2003, 03:04 PM
Skyebandit Skyebandit is offline
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Join Date: Jun 2003
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My daughter's incontinence is solved by

*

1) Intermittent cathertization along with medication (oxybutynin)

2) Cecostomy with Chait Trap Door, place at Sick Kids in Toronto in July 2002

*

Both have worked wonderfully getting her into underwear.

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  #5  
Old 06-08-2004, 02:45 PM
Lisa Harper Lisa Harper is offline
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Hi there:

I am also a 30'something individual who suffers from incontinence as a result of SB - I have had 5 different procedures done on my bladder with no success - I am totally incontinent - my urinary sphincter muscle is gone.* I currently wear a pad 24/7 and the costs are killing me!* I do work full time, but my pay goes directly to buying pads - anyone know of any organizations/companies that will help with this cost?

Looking forward to replies - thanks!

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  #6  
Old 06-11-2004, 06:26 AM
SapphiresDream SapphiresDream is offline
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Hi Lisa Dependant on where you live in canada, myself I am in ontario and get financial help for my son from the easter seal society

speak to your urologist or clinic and they have applications available...Its not much but upto 2000 dollars a year dependant on what type of cathertizations or undergarments your need...but anything helps

hope this helps

Linda

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  #7  
Old 06-27-2004, 04:17 PM
rose rose is offline
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HI

When i was younger i was having problems with my bladder.* they ended up doing surgery.* I had a artificial urinary sphineter put in and had my bladder made bigger.* These were done about 10 years ago and i haven't had a problems since, i don't get as many infections since the surgery either.* I also catherize myself.

For the bowel it was a awful time trying to figure what i can do, i ended up having an latex allergy so the emma tubing that i was using i had to stop using.* After a few years of doing this and that i had the c-tube done, i was 16 (i am 26 now)*when i had it done, and it was been doing great, it has made my life so much better.* i was having problems with the bowel last year, but it has been somewhat fixed, i have to watch what type of foods i eat dairy ect...

hope this helps

*

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  #8  
Old 07-06-2004, 03:17 AM
morningdove morningdove is offline
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Hi Skyebandit*** How did the Cecostomy* with the Chait Trap Door go?* My son is 10 now, and is to have this operation next summer.* He already has intermittent catheterization, but is still wet in*between changes.He doesn't have a lot of muscle strength in his hands to do a lot of the fine motor skills.* He still needs a nurse and us to do his catheter, because he can't do the insertion by himself.*** He is finding socialization hard to do.* Kids tend to tease him because he has to wear "a diaper", or "pull-ups".*

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  #9  
Old 07-11-2004, 12:26 AM
hunttwin1 hunttwin1 is offline
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Dear SBHAO Friends July 10,2004

My name is Colleen & I'm 31 years of age I have a fraternal twin sister who lives out being born with hydrocephalus or any other ailment or disability. I also have developmental disability as well & I used to have seizures. I'm looking for female friends who are between the ages of 31-40 to keep in touch within GTA area & around the world to keep in touch with me. I hope to hang out the females from Toronto,Ontario, Canada I look forward to hearing from you . Email me at <a target="_blank" href= "mailto:hunttwin1@yahoo.com">hunttwin1@yahoo.c om</A>*I also read a book by author Katherine Stone called OTHER TWIN about 2 pairs of twins who have disability & the twin is healthy. For my own knowledge I'm curious is hydrocephalus a disability as well as ailment or disability & ailment.

Colleen Hunt

*

*

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  #10  
Old 07-19-2004, 03:05 PM
sherry sherry is offline
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Hi there,

* I am the parent of a 7 year old boy with l2 sb and hydracephalus.Last year he had the chait trap door inserted and it has been an amazing help in regards to bowels.he does catheterization but i am wondering about any other procedures as even with meds he is still wet in between and is dealing with teasing issues like being called diaper by.we live in a small community and so it makes it even more difficult for him as there are no other kids like him here.

*thanks

sherry

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