Hello everyone,
My Name is Ed,and I have written before.I don't know if anyone is getting
this or not. the only person I have had any communication with was Carla,and
it was nice.Carla,I hope you find people your age to talk to about this.As
we all can tell,this illness has no age boundaries.It's only been 4 months
since my surgery,and I have made quite a few adjustments already,but am sure
there
are a lot more coming.

-----Original Message-----
From: ileostomy@yahoogroups.com [mailto:ileostomy@yahoogroups.com]
Sent: Sunday, March 23, 2003 4:06 AM
To: ileostomy@yahoogroups.com
Subject: The Ileostomy Group Digest Number 96



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There are 4 messages in this issue.

Topics in this digest:

1. my ileostomy story
From: "Kerry Piper" <crohnszone@...>
2. Re: my ileostomy story
From: carla terrone <star_ari1986@...>
3. Re: my ileostomy story
From: Darius <tigersharks66@...>
4. Re: FEEDBACK (Long)
From: "Kim" <coyoteridge@...>


________________________________________________________________________
________________________________________________________________________

Message: 1
Date: Sat, 22 Mar 2003 09:51:22 -0000
From: "Kerry Piper" <crohnszone@...>
Subject: my ileostomy story

I'm Kerry. I'm 24 and had my ileostomy last April 2nd ( it's nearly 1 !!!)
due to Crohn's-colitis (Crohn's of large and small bowel). My medications
weren't working and I was in real pain with a stricture, and going to the
toilet upwards of 20 times a day. They tried me on three steroids with two
immunosuppressants simultaneously as well as putting me on Total Parenteral
Nutrition but nothing worked as I was still in agony every time I ate, so
the decision to operate in two weeks was taken while I was already in the
hospital and I had to stay in to wait for it.

Despite the lack of emotional preparation and the resources to prepare, I
still got my head round it somehow. I had 6 and a half feet of bowel removed
and a temporary ileostomy made in a six hour operation. I retain some
sigmoid colon and my rectum, and reconnection surgery is theoretically
possible. However, my Crohn's is now acting up in that bypassed area and
they have postponed reconnection indefinitely. This isn't a problem though-
all is well on the stoma side of things and I'm happy enough to live with
it.

The ileostomy has allowed me to reclaim my life. I have been in remission in
the bowel I use since I had it, I've been able to return to work after 14
months off, and the job has funded my new degree course in History which I
am enjoying. I can go out and about without panicking about getting to the
toilet, and can eat out and generally enjoy life.

Kerry
Hampshire, UK


[Non-text portions of this message have been removed]



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Message: 2
Date: Sat, 22 Mar 2003 18:48:56 +0000 (GMT)
From: carla terrone <star_ari1986@...>
Subject: Re: my ileostomy story


Hello am i right in thinking im the baby of this group! Is there anyone out
there my age? im 17 please reply.
Kerry Piper <crohnszone@...> wrote:I'm Kerry. I'm 24 and had my
ileostomy last April 2nd ( it's nearly 1 !!!) due to Crohn's-colitis
(Crohn's of large and small bowel). My medications weren't working and I was
in real pain with a stricture, and going to the toilet upwards of 20 times a
day. They tried me on three steroids with two immunosuppressants
simultaneously as well as putting me on Total Parenteral Nutrition but
nothing worked as I was still in agony every time I ate, so the decision to
operate in two weeks was taken while I was already in the hospital and I had
to stay in to wait for it.

Despite the lack of emotional preparation and the resources to prepare, I
still got my head round it somehow. I had 6 and a half feet of bowel removed
and a temporary ileostomy made in a six hour operation. I retain some
sigmoid colon and my rectum, and reconnection surgery is theoretically
possible. However, my Crohn's is now acting up in that bypassed area and
they have postponed reconnection indefinitely. This isn't a problem though-
all is well on the stoma side of things and I'm happy enough to live with
it.

The ileostomy has allowed me to reclaim my life. I have been in remission in
the bowel I use since I had it, I've been able to return to work after 14
months off, and the job has funded my new degree course in History which I
am enjoying. I can go out and about without panicking about getting to the
toilet, and can eat out and generally enjoy life.

Kerry
Hampshire, UK


[Non-text portions of this message have been removed]


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________________________________________________________________________
________________________________________________________________________

Message: 3
Date: Sat, 22 Mar 2003 19:10:13 -0800 (PST)
From: Darius <tigersharks66@...>
Subject: Re: my ileostomy story

Congrats on your nearly having your first anniversary
(who would think we would celebrate something like
this.) I just know from experience that if you make it
a year past something big happening that things seem
to make a positive turn if they havent already. I'm
sorry that you have Crohns since that is the worst of
the two diseases, hopefully it will go into a full
remision for your sake. I myself didn't get but one
day to prepare for surgery, talk about an emotional
shock. But I did ok since I didn't have time to dwell
on it. I'm still getting used to my ileostomy and I
still have a bit of a mental block as far as seeing
how I am going to have a near normal life but if so
many have said they do then I know it is possible,
even tho I know I won't ever get to play hockey in any
real fashion like I have dreamed(we all have dreams
like this) I know I did get to enjoy some special
things (I have made 6 skydives)long before I had this
come about. At least now I go fishing and hunting
again since I couldn't before for lack of being able
to have a toilet nearby. So as spring comes along I
know I'm going to enjoy things that I couldn't before
and even gain a more positive outlook and I know I
will gain that from some of the people here in this
group. It's always good to have someone to talk to
who knows what you are going thru which helps beyond
measure.

Darius
Okmulgee, Ok

BTW - I'm 36 for those wondering.
--- Kerry Piper <crohnszone@...> wrote:
> I'm Kerry. I'm 24 and had my ileostomy last April
> 2nd ( it's nearly 1 !!!) due to Crohn's-colitis
> (Crohn's of large and small bowel). My medications
> weren't working and I was in real pain with a
> stricture, and going to the toilet upwards of 20
> times a day. They tried me on three steroids with
> two immunosuppressants simultaneously as well as
> putting me on Total Parenteral Nutrition but nothing
> worked as I was still in agony every time I ate, so
> the decision to operate in two weeks was taken while
> I was already in the hospital and I had to stay in
> to wait for it.
>
> Despite the lack of emotional preparation and the
> resources to prepare, I still got my head round it
> somehow. I had 6 and a half feet of bowel removed
> and a temporary ileostomy made in a six hour
> operation. I retain some sigmoid colon and my
> rectum, and reconnection surgery is theoretically
> possible. However, my Crohn's is now acting up in
> that bypassed area and they have postponed
> reconnection indefinitely. This isn't a problem
> though- all is well on the stoma side of things and
> I'm happy enough to live with it.
>
> The ileostomy has allowed me to reclaim my life. I
> have been in remission in the bowel I use since I
> had it, I've been able to return to work after 14
> months off, and the job has funded my new degree
> course in History which I am enjoying. I can go out
> and about without panicking about getting to the
> toilet, and can eat out and generally enjoy life.
>
> Kerry
> Hampshire, UK
>
>
> [Non-text portions of this message have been
> removed]
>
>
> ------------------------ Yahoo! Groups Sponsor
>
> To add or reply to this newsletter, reply to this
> email. Remember to delete all the copied material!
>
> To unsubscribe from this group, send an email to:
> ileostomy-unsubscribe@yahoogroups.com
>
> Need technical help? Send an email to Kerry at
> crohnszone@...
>
>
>
> Your use of Yahoo! Groups is subject to
> http://docs.yahoo.com/info/terms/
>
>


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Message: 4
Date: Sat, 22 Mar 2003 21:16:05 -0700
From: "Kim" <coyoteridge@...>
Subject: Re: FEEDBACK (Long)

The first time I passed blood was in '94. I was afraid to go to the Dr., but
the pain eventually got to me and I went . They did a scope in a small town
hospital, and they really didn't know anything, so they set up an
appointment for a specialist which was for 3 months later. By the time I was
to have my specialist appointment everything was back to normal so I didn't
go. Through the years this happened off and on, but it would always go away
and was never as painful as the first time so I chose to ignore it .. it
would eventually go away. August 2002 it came back again. I waited for it
to leave, but by November I decided that I'd better go get it seriously
checked out. I seen my family Dr. and he run some tests. When I came back
for follow up appointment he called a specialist right then and there. It
was a Friday... I was in the specialist's office the following Tuesday (at
least I didn't have to wait 3 months this time!).
My family Dr put me on Salofalk. I was taking them before I seen the
specialist. I had a scope done on Nov 19th and everything after that was
kind of a blur. I ended up with a bowel infection due to the scope. A few
days later I was in the hospital with pleurisy caused from the Salofalk. I
was then put on Prednisone. That cleared up the pleurisy, but it didn't
touch the bleeding. I was released from the hospital in a week. I still felt
really terrible and spent another week or so camped out on the couch only
getting up to go to the bathroom. I went back to the hospital and had more
blood tests done which they found that my hemoglobin was pretty low. I went
back in the hospital again and they sent me to our closest major city
hospital. After a couple of days there I had a blood transfusion, and then a
few more days of torcher and being a guinea pig to their drugs that never
worked. They finally decided I needed my large intestine removed. I was so
sick at that point I didn't really care what they did as long as they got me
feeling better. It was bad enough that they were scared that it would
perferate.
My surgeon described it to me as it being the same as a wet paper bag.
So on Dec 24/02 I had my large intestine removed and an ileostomy put in.
It took a long time to recover (at least it seemed to me), but now I'm
feeling great. I go back to see the surgeon in April to see if it can be
reversed or not. I'm not sure if I want it reversed. I'm terrified that if I
have it reversed, the bleeding and pain will start again. Having the bag is
not as big a deal as I thought it would be in the beginning. Its really not
a big deal at all. I still intend on doing everything I did before. I have
mares to foal out this spring, I have mares to breed.
And I still very much intend to ride.
Someone mentioned that their hair fell out. Mine is doing that right now,
and I hope like heck mine comes back in curly too! That would be super.. no
more perms!!! YAY!

Kim



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