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  #1  
Old 10-26-2003, 07:38 AM
rhiannastarfire rhiannastarfire is offline
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Default Please help!

Hello, I am new to this community and I hope it isn't like the others I've tried where nobody responds or people barely post because I really have quite a few concerns and need to talk to others like me. But first I suppose I should introduce myself lol. I am a 25 yr old female. My real name is Kimberli and I was diagnosed with Spina Bifida and hydrocephelus*when I was born, was shunted when I was 2 and have only had one revision when I was 14. I had a bladder augmentation at 12 and have been straight cathing since. I was in diapers*until I was 12 because of incontinence but got on a bowel program and *I wasn't having* problems really untill recently, all of the sudden I've had a few accidents, unfortunately they've been while out and about, not at home. It seems every time I leave the house my bowels decide to go into overdrive. It's getting so I don't want to go anywhere which causes problems between my fiancee and I because he gets upset*and says I can't live in a bottle all my life because of this.*I won't go back to diapers but I was wondering if anyone knew of an alternative method of preventing my bowels from becoming overly active whenever I leave the house. I tried Immodium A-D and it works sometimes but not always and I can't take it too often because my doctor warns me about getting my* bowels impacted which would require hospitalization to clean them out. Please help me if anyone has any ideas it would be appreciated so much...
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  #2  
Old 10-29-2003, 04:08 AM
rose rose is offline
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Default Please help!

hi

i have the same problems also, please e-mail me and maybe i can help and share my experiences.

my e-mail is <a target="_blank" href= "mailto:rosie_johnston23@yahoo.ca">rosie_johnston2 3@yahoo.ca</A>

hope to hear from you

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  #3  
Old 11-02-2003, 03:47 PM
A Mum
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Default Please help!

Hi rose and rhianna,

My child has the same unsettling bowel problem on school outings.** She has also had the problem on certain social functions where she is uncomfortable with the situation.** She is emotionally anxious and I think it is all tied into her anxiety.** She is only 14 but is already saying she doesn't want to participate in social outings in case she has an accident.** She is willing to go if I go and then still sometimes has an accident.** She also has tummy pain and cramps which I am putting down to anxiety.** I have been told this is common with children with spina bifida.** It sounds as if it is not something she will grow out of either - as you are both adults!

A mum

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  #4  
Old 11-02-2003, 03:59 PM
bill butler
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Default Please help!

Hi ladies:

My name is bill and my 9 year old son has spina bifida.* Within the last year Andrew began experiencing the same problem, accidents with his bowels.* Sometimes at home, but usually when at school. Andrew has a C-tube (cycostemy) and this helped with his bowel irrigation before his accidents began.*

We are concerned for Andrew as it is embarassing as well as an inconvenience for the school staff.* *We give him as much fibre as he will accept but because of arnold chiari he does not have a good history of eating fibrous foods.* We thought there might be a problem with*his bowels *functioning properly, so we had his bowels checked at Sick Kids Hospital in Toronto.*

My wife and I do his enemas every night although there are days when this cannot happen due to evening events.* We would like to correct the problem of bowel accidents but don't know what to do.*

With todays technology and medical advancements, one would think there is a solution.* We are in the same boat, so any helpful information would be appreciated.*

Our email address is:* <a target="_blank" href= "mailto:wmbutler@personainternet.com">wmbutler@per sonainternet.com</A>

Hang in there.

*Bill***********

*

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  #5  
Old 11-03-2003, 10:40 PM
rose rose is offline
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Default Please help!

hi everyone

i was wondering if anyone would like to talk about this subject, or if you were wondering how i cope then please e-mail me at <a target="_blank" href= "mailto:rosiejohnston@yahoo.ca">rosiejohnston@yaho o.ca</A>.* i would like to hear from you.

hang in there

*

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  #6  
Old 11-12-2003, 08:01 PM
Skyebandit Skyebandit is offline
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Join Date: Jun 2003
Posts: 1
Default Please help!

Bill

My daughter too had the cecostomy.* We traveled from Ottawa to Toronto to have the c-tube inserted then back again a few weeks later for the Trap Door.

I have found Helen Richards to be immensely helpful in solving any problems we experience from time to time and so far, my daughter is about 90% reliable.* I'd suggest calling Helen.

I also give my daughter a senokot pill (1/4 tablet which works for her) every morning.* Constipation can still be an issue with our children, even with the c-tube.

*

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  #7  
Old 02-27-2004, 03:55 AM
TaniaR TaniaR is offline
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Default Please help!

Hey. Just to let you all know I'm a 17 year old with Spina Bifida occulta and I've been dealing with accidents for the past few years that actually brought a lot of problems when in school, and a lot of social issues.

Right now I am on senecot and mineral oil everyday and a high fibre diet. I can't say it's corrected everything but it has helped. Unfortunately with me we found the problem was I was constipated for so long that I was unable to control my bowel movements when they did occur. It might just be a bad case of that.

Any questions, let me know and I'll tell you how I'm coping.

www.drama-queen@sympatico.ca

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  #8  
Old 03-18-2004, 11:47 PM
scoles scoles is offline
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Default Please help!

Hi. I'm a 31 year old with spina bifida who had the same bowel problems for many years. About 6 years ago I had a colostomy. It has improved my situation drastically. My husband and I have a much better relationship. If anyone wants to contact me about this, my e-mail is scoles5691@rogers.com.
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  #9  
Old 03-20-2004, 03:24 AM
rose rose is offline
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Default Please help!

hi again

i also have the c-tube that was done in toronto, i have it done when i was 16 years i am 25 now, it has made a big difference and has worked pretty well.* before the c-tube i wasn't useing much, i had to stop using the balloon emma because i reacted to the latex, it was a very tough time until i got the c-tube, but now things are better, i am able to do my bowel routine myself, and actually be able to do things normally.

a year and* a half ago, i started having problems with the bowel, having accidents, i ended up going through some tests, they didn't find anything, but by trial and error i found that i couldn't eat diary or foods that have high fibre - popcorn, and certain kind of beans.*

now everything seems to be ok, just need to watch what i eat, and also because of this, before this all happened, i was able to go an extra day without doing my bowel routine but now i can't seem to miss a day or i have problems.

so i know how all of you are feeling about the social and other problems they you might have.* if anyone of you want to chat, please let me know my e-mail is <a target="_blank" href= "mailto:rosie_johnston1@hotmail.com"> rosie_johnston1@hotmail.com</A>.* just to have some to listen is always nice, specially when they know how you feel.

hope to hear from you soon

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  #10  
Old 05-29-2004, 05:32 PM
scootergirl scootergirl is offline
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Join Date: May 2004
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Default Please help!

Hi, to all,

this is the first time I have been on this site.* I am a 46 yr old female with an ilioconduit.* i have always worked hard at maintaining bowel with many times having to readjust to routine and have fopund to work at the diet of what we eat or drink as we get older we try new foods develop new routines and its an ongoing thing.* I have over the past 10 years began to feel when when things were going to start to happen (don't know why). I can only really offer support at this time anyone please email me if you have any other questions.

<a target="_blank" href= "mailto:iclaeren@skynet.ca">iclaeren@skynet.ca </A>

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