Re: Adhesions,Hirschbrungs Disease...Just so you know...

From: wilcoxon69@yahoo.com
Wed Jul 2 13:25:07 2003


What are the odds of finding a doctor that actually knows what he is doing with Hirschbrung's disease...?? We have had my son to a lot of them, and I have had this from the time I was born. So bad was mine, that I had extreme mega colon and almost died myself. Now, my 8 year old son is showing th same signs, and no one wants to do a darn thing because we have state insurance. Do I just sit by and wait for my son to die before any of these "practicing" physicians' do something for him, or is there REALLy someone out there that knows what they are doing with this disease...??

Morris Pierce

wilcoxon69@yahoo.com

At Fri, 31 Jan 2003, Helen Dynda wrote: >
>Just so you know...
>
>I have sent a lot of information directly to Jess' email address. I
>included information about: Adhesions -- SprayGel adhesion barrier --
>Dr. Kruschinski -- Kath Findlay's email address and the UK Adhesions
>website.
>
>There is HOPE for better days ahead for Jess' brother.
>
>Helen D.
>
>~ ~ ~ ~
>
>At Fri, 31 Jan 2003, jason h rachal wrote:
>>
>>HELLO JESS,
>>
>>WE ARE SO GLAD YOU FOUND THIS SITE. AND TO WATCH SOMEONE SO SMALL SUFFER
>>IS EVEN WORSE.. I AM A SUFFERER FOR ALMOST 8YRS.
>>YOU HAVE COME TO THE RIGHT PLACE FOR HELP. YOU NEED TO GET AS MUCH
>>INFORMATION ON ADHESIONS AND BOWEL OBSTRUCTIONS AND THIS IS THE PLACE TO
>>HELP..
>>
>>HELEN PLEASE GIVE JESS ALL THE INFO THAT YOU HAVE GIVEN TO EVERYONE
>>INCLUDING ME IN THE PAST TO HELP HER LEARN AS MUCH AS POSSIBLE..
>>
>>YOU AND YOUR BROTHER WILL BE IN MY PRAYERS AND LOTS OF HUGS NICKY
>>On Fri, 31 Jan 2003 05:39:12 -0600 X_GRRL_83@hotmail.com (jess) writes:
>>> hi
>>> i feel bad sending you a message because i don't suffer from your
>>> condition but my baby brother does.
>>> at the moment he's in a chicldrens hospital and has been there for
>>> the
>>> last three months(yeah all over christmas and everything) the
>>> problem is
>>> it just doesn't seem to be getting any better and i was wondering if
>>> you
>>> could enlighten me a bit. i really don't understand everything
>>> about
>>> his condition and especially not the problems that have happened
>>> prior
>>> to surgerys!
>>>
>>> to give you a summary on it all basically: dylan was born 17th sept
>>> 1999. he's just gone three and so far he's had at least a dozen
>>> major
>>> surgerys and at least two dozen minor.
>>> when he was born they couldn't diagnose what was wrong for 11 months
>>> and
>>> we only found out then because he got dehydrated while on holidays
>>> in
>>> magaluf and a specialist spotted it then. he was given a colostomy
>>> bag
>>> and had a large part of his intestines removed as well as part of
>>> his
>>> bowel. he was great with the colostomy for a year and then they
>>> tried
>>> to reverse it but that failed so we were back to the colostomy
>>> again. He
>>> was so healthy with the colostomy so the left it for another year
>>> to
>>> give him a chance to gain weight and strength etc etc. so that
>>> brings
>>> us up to last november, he was brought back in for a reversal and
>>> was
>>> only supposed to be in for 3 or 4 days. but two days after the
>>> surgery
>>> they did a scan on his stomach and discovered the part of the
>>> intestine
>>> they had reattatched to his bowel was affected by the disease as
>>> well so
>>> it hadn't joined properly therefore allowing all the waste in his
>>> system
>>> to leak into his stomach giving his septicimia. we nearly lost his
>>> that
>>> time but hte doctors tried so hard to give him every chance at a
>>> normal
>>> life but it wasn't to be unfortunatly. they had to give him the
>>> colostomy back but it's just been up and down since then. the
>>> mia damaged his stomach so badly he can't absorb anything he
>>> eats. i'm watching my little brother fade away to nothing day after
>>> day
>>> and it's killing my whole family and what makes it so much harder
>>> is
>>> that i don't understand why?
>>> apparantly all the problems now are caused by obstructions in his
>>> bowel
>>> and intestine from adhesions or scar tissue.
>>> please help me because it feels like we may lose him and i just
>>> can't
>>> seem to find anything positive at all on the net. nearly every
>>> outcome
>>> is either a colostomy for life or the patient suffers from vomiting
>>> severe constipation among other things.
>>> Is there any solution to this disease or will it just keep eating
>>> away
>>> at him untill theres nothing left?
>>>
>>> --
>>> jess (Dublin, ireland)
>>>
>>> http://www.adhesions.org/forums/listcmds.htm
>>>


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