There are two major diseases that fall under the category of "IBD"
[inflammatory bowel disease], ulcerative colitis and Crohn's disease. For
ulcerative colitis, colectomy/ileostomy is generally curative, and after
surgery most individuals live happily ever after. Not necessarily the
case
for Crohn's disease. While Crohn's may affect only the colon, it may also
affect any other part of the digestive tract from the mouth on down. It
is
not at all uncommon for Crohn's to affect the small intestine, and a
colectomy/ileostomy will not help this. It is often with involvement of
the
small intestine that multiple later surgeries occurs over many years.
Thus
it's im****tant as part of any evaluation you have to determine whether
what
you have is UC or Crohn's (sometimes there is a gray zone in between) or
something else altogether, and if Crohn's, what part of your gut is
affected. I don't know what the practice is in Canada, but here in the
U.S., the standard of care for Crohn's now seems to be treament with the
drug Remicaid. This has a better track record than the older ASA/steroid
medications. I know a number of individuals who are on this medication
(an
I.V. infusion once every several months) who have achieved sustained
remissions. I also know some individuals in whom there has been a less
good
result. Reading the risks and side effects associated with this agent is
daunting, but most people here seem to opt for this before surgery, and
individuals who've had multiple surgeries sometimes break the surgical
cycle
when they go on this agent.
Best of luck with your situation.
CB
"cms" <cms763@[EMAIL PROTECTED]
> wrote in message
news:13nggm6b8ntnkad@[EMAIL PROTECTED]
> Hi all,
>
> I've been lurking on this group for a week or so. I've had major
digestive
> issues for a long time which are looking like probable Crohn's disease.
I
> am seeing a Gastroenterologist in a few weeks to get scoped all the way
> through for a conclusive diagnosis.
>
> If I do turn out to have an IBD, I am at the point of asking for a
> permanent ileostomy straight away. I am allergic to sulfa drugs, don't
> react well to Prednisone, and I have been sick, tired, dizzy, and
> miserable for so long that it would be sweet relief to just be able to
eat
> like a normal person and not carry immodium absolutely everywhere. I
know
> IBD sufferers with and without ostomies so I've seen both sides
> (second-hand), and been told what a blessing an ostomy can be for the
> right candidate.
>
> Does anybody have any advice or experiences asking for an elective
ostomy
> surgery? Will the doc think I'm a whack-job or refuse, even though
> ostomies typically improve quality of life for IBD sufferers
dramatically?
> Is he likely to counsel me about my options and accept my request? I've
> been told that it's considered a last option by many GIs and I'm
wondering
> if they tend to resist it or if it's usually the patient resisting.
>
> All of your input is greatly appreciated.
> Sincerely,
> cms
>
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