A surgical option sometimes used here in small intestine Crohn's blockages
is "strictureplasty" rather than resection, in an effort to avoid eventual
short-gut malabsorption problems resulting from the ***ulative effects of
years of multiple resections. This opens up the blockage without removing
any intestine, and is usually a relatively simple procedure. I don't know
if that has any bearing on your situation or not, but if so, a discussion
as
to the pros and cons with the surgeon might be useful.
I'm not entirely surprised that Remicaid is so restricted in
Saskatchewan,
given the unbridled greed of the pharmaceutical manufacturer's pricing of
this agent. This of course raises a whole other discussion about the
relative pros and cons of our two very imperfect health care systems,
which
is probably better left untouched here.
Incidently, while this used to be a very active newsgroup, activity on
it has dwindled to almost nothing. There are many other discussion sites
elsewhere on the the web that will probably give you much more feedback.
Getting lots of information ahead of time will be very useful to you. If
there is an ostomy organization in your area, speak with them. If not,
the
web is the right place to go.
Again, good luck with your upcoming surgery. If you go ahead with
resection of your colon, are you a candidate for an internal pouch, rather
than an ileostomy? It's my impression that the majority of patients here
who have colectomies for IBD are now having internal pouches constructed,
and many seem to be pleased with this. However, there are certainly lots
of
potential short and long term complications to this. Traditional
ileostomies are usually (but not always) more trouble-free from a
physiologic/anatomic standpoint, but mean dealing with pouching equipment
etc (which is not generally a big deal). I do know several individuals
who've needed repeated surgeries for abdominal or stomal hernias, or
stomal
constrictions, years after having ileostomy surgery, and it does take a
while to work out pouching systems that are low-maintenance, with rare
leaks
or accidents. I also know individuals with internal pouches who've had
enough difficulty with pouchitis, leakage/accidents, recurrent IBD, and
frequent diarrhea that they had their internal pouch eventually converted
to
an external ileostomy. On the whole, however, it's my impression that
most
patients with IBD do get substantial relief whatever procedure they have,
vs
struggling along for years if their illness does not respond adequately to
medications.
CB
"cms" <cms763@[EMAIL PROTECTED]
> wrote in message
news:13nh13717jtp572@[EMAIL PROTECTED]
> Hi CB,
> Thanks for your response.
> While I am aware that Crohn's is not curable, I would think that surgery
> (including resection of the worst-damaged parts of the small intestine)
> would allow for less aggressive drug treatment. AFAIK, Remicade is only
> available in my province as a last resort, and there are only 100
Crohn's
> patients in Saskatchewan who are currently allowed to receive it. This
> would leave me with the treatment options of surgery, 6-mp, imuran,
> short-term steroids, and symptomatic treatments for years before I'd
> likely be approved for Remicade. This, combined with the fact that I
will
> be having major abdominal surgery this year anyway, makes
resection/ostomy
> surgery look like a reasonable early option from where I sit.
> All of this, and stories from ostomates with major quality-of-life
> improvements, led me to this newsgroup.
> --
> cms
>
>
> "C. Berlin" <cberlin@[EMAIL PROTECTED]
> wrote in message
> news:fCZdj.7570$cq5.2213@[EMAIL PROTECTED]
>> 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
>
>
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