Imperforate Anus
ej...@pop.slkc.uswest.net
gotten a couple responses and thank you, but what I am
looking for is someone who has a child with an imperforate
anus or someone who had one.
Thank You,
Andrea Eddens
John P
>Hello all. I have posted some messages on here and I have
>gotten a couple responses and thank you, but what I am
>looking for is someone who has a child with an imperforate
>anus or someone who had one.
>
>
Hi Andrea
You didn't say what sort of advise you wanted so I've put down my life
history! :-)
I am a 32yo who was born with an imperforate anus, I had an op to
remove the skin, they checked my pipes and that was that.
All through my life (up until 1994) I was incontinent and suffered
with CHRONIC CONSTIPATION and had several blockages requiring an op.
I have had ALL kinds of laxatives and types of diets and diagnosed
with all sorts of complaints such as IBS (or IBD in the USA)
The last blockage was in 1993 and because I could not get anyone to
take me seriously, I was literally on deaths door as it was September
since my last BM and in December they decided to do something!!
The following March they gave me a temporary Ileostomy but 4 years
later I've told them that I want it to be made permanent because (not
wishing to scare you BUT) I have a phobia of rectal examinations as
when I was 7, two nurses held me down and another gave me a
suppository.
I hope the above helps and if you wish to ask any other questions,
post them here of e-mail me at jpr...@porthill.com
PattyPCLab
>I am a 32yo who was born with an imperforate anus, I had an op to
>remove the skin, they checked my pipes and that was that.
>
>All through my life (up until 1994) I was incontinent and suffered
>with CHRONIC CONSTIPATION and had several blockages requiring an op.
>I have had ALL kinds of laxatives and types of diets and diagnosed
>with all sorts of complaints such as IBS (or IBD in the USA)
I am 40 years old and was born with imperforate anus, Type III, which is a high
lesion. I had initial surgery to correct the problem, but like John, I was
incontinent until my colostomy surgery 25 yrs ago. My childhood was a
nightmare. They put me on all sorts of special diets, laxatives, enemas, etc.
and what seemed to be endless rectal exams and barium enemas.
The outcome basically depends on the type lesion, i.e., high or low. Low has a
much better prognosis. Also, delaying the surgery until a child is older
does seem to have an added benefit. When I was growing up, doctors wanted to
avoid ostomies at all costs. I was made to feel responsible for my
incontinence and told that all other children born with this affliction were
continent.
Actually, when I started researching this as an adult, I found that many others
born with this disorder have problems with continence, especially those with
high lesions. Also, the incidence of other birth defects, especially involving
the urinary tract, are very very common. I also have slight urine
incontinence, and had a vaginal fistula at birth. I am able to wear a small
pad to absorb the urine. Other commonly associated birth defects involve the
heart.
Andrea, you really need to talk to your doctor. My experience and John's
experience are partly due to our age. The medical community has made important
strides. In fact, you can do some research yourself about the most current
treatments, prognosis, and associated urinary tract defects. I found a very
good source from the National Institute of Health, Center for Rare Diseases.
Imperforate Anus has been classified as a rare disorder. One in which less
than 200,000 persons in the US are afflicted. Their website has references to
several hundred articles from medical journals around the world concerning this
disorder. You can get a brief synopsis of each article and order an article
you want for a very very samll fee. The articles have helped me a lot. I
understand my condition better and now know that I am not alone in my problems
with incontinence, etc. The website is:
http://cancernet.nci.nih.gov/ord/
Andrea, I have "spoken" to you by e-mail before. As John said, I'm not sure
what sort of advice you need. How familiar is you pediatrician with this
disorder? Do you live near a major medical center? What type of imperforate
anus does your son have? I know right now you have to deal with the ostomy,
but has your pediatrician talked about reversal and if so when? If there is
anything else I can tell you or help with let me know. As I said, that website
is superb!!!
John, I would really like to talk to you about your experiences. I have never
been able to talk to another person with this affliction since I could never
find anyone with it. Your difficulties, treatments, phobias, etc. sound much
like mine. If you would like to talk, please e-mail me at Patty...@aol.com
T & D
David
PattyPCLab wrote in message
<199809090313...@ladder03.news.aol.com>...
John P
>What is an imperforate anus???
>David
David
am imperforate anus is a rare congenital abnormality and at birth the
anus is covered with skin AND/OR the bowel stops short of the anus.
The sphincter muscles can be affected in which case anal dilation is
required (OUCH!). I personnaly suffered with chronic constipation and
after 27 years of hell, I had an ileostomy and life has never been
better.
I hope this answers your question.
T & D
sure!
David
John P wrote in message <35f6d028...@news.porthill.com>...
ej...@pop.slkc.uswest.net
My son has the lower lesion. We have to dilate my sons created anus to 3 cm
and then we can have him hooked back up. He also had a fistula, but his was his
bowel and bladder were connected but that has been repaired. His pediatrician is
very familiar with him and his disorder he has seen him from day one. Thank you
again.-----------Andrea
ej...@pop.slkc.uswest.net
have a bum hole when it was born. Does that help?:)-------------Andrea
T & D wrote:
> What is an imperforate anus???
> David
> PattyPCLab wrote in message
> <199809090313...@ladder03.news.aol.com>...
PattyPCLab
>My son has the lower lesion. We have to dilate my sons created anus to 3 cm
>and then we can have him hooked back up. He also had a fistula, but his was
>his
>bowel and bladder were connected but that has been repaired. His
>pediatrician is
>very familiar with him and his disorder he has seen him from day one.
I'm glad that he is doing so well. My mom also had to do the daily dilations
when I was an infant. It's a lot to deal with for a parent. It sounds
like you have a terrific doctor though.
Another website you might want to check out is:
Kerrypages.ro.com/Pouchclip/front.html
This site has more links than any other I have seen. There are links to
support and discussion groups for children's issues as well as links to all
types of medical information which is well categorized.
It sounds as if your son will have a really good outcome, especially now that
the fistula has been repaired. Keep in touch and let me know how things work
out. If I come across any more sites which I think might help you, I'll let
you know. Take care.
Patty
