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From: cms on 30 Dec 2007 20:15
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


From: C. Berlin on 30 Dec 2007 22:46
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 important 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(a)hotmail.com> wrote in message
news:13nggm6b8ntnkad(a)corp.supernews.com...
> 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
>


From: cms on 31 Dec 2007 00:55
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(a)pitt.edu> wrote in message
news:fCZdj.7570$cq5.2213(a)trndny06...
> 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 important 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


From: cms on 31 Dec 2007 13:57
I apologise to CB.
Re-reading my initial response to you, I see that I was having a fit of
I'm-keeping-my-pat-solution-and-no-sound-advice-will-deter-me. I realise
that Crohn's is a complicated thing and that there are no pat solutions. I
really appreciate your input and I will keep it in mind when I speak to my
specialist.
--
cms

"cms" <cms763(a)hotmail.com> wrote in message
news:13nh13717jtp572(a)corp.supernews.com...
> 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


From: C. Berlin on 31 Dec 2007 16:08
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 cumulative 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(a)hotmail.com> wrote in message
news:13nh13717jtp572(a)corp.supernews.com...
> 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(a)pitt.edu> wrote in message
> news:fCZdj.7570$cq5.2213(a)trndny06...
>> 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 important 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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