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Breaking the Vicious Cycle

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BOWEL RESECTION - ONE SCDER'S EXPERIENCE

Bowel Resection - One SCDer's Experience


The decision to have surgery is a very personal one, requiring
extraordinarily careful consideration and a great deal of input from your
doctor(s). Unfortunately, it's not always the 'cure' we wish for. An SCD
list-member kindly gave permission me to post the following, in which she
describes her bowel resections surgery:

I've recently had a bowel resection ( 1 month ago) because I had a
stricture so severe that I had been on a liquid diet for about 4 months
and was losing weight like crazy. All of the X-rays and tests revealed that
the only opening from the stricture was at best about a hairline opening
and I was always in pain even from ingesting too much liquid at one time.
A short period on prednisone offered some relief, but no change in the
stricture. There was too much scar tissue built up. My stricture was
located approximately in the middle of my transversal colon, as well, the
whole ascending colon and part of the ileum was badly inflammed by Crohn's
from not being properly diagnosed with CD about 2-3 years ago until I had
a serious flare up in March of this year.

The result was a bowel resection, where the surgeon in his good intention
and expert opinion decided to remove ALL evident diseased sections of my
intestines, not only the stricture part. The result is that half of my
colon and a portion of my ileum were removed. Needless to say, knowing
what I know now, I feel violated but I'm glad and fortunate I didn't wake
up with a colostomy.

Everything happened so quickly from confirmed diagnosis and scheduling for
surgery. I didn't find out about SCD until after the surgery because I
couldn't accept that diet had nothing to do with ill bowels. I had,
though, gotten specific and categoric assurances by all the GIs I saw and
the surgeon that "diet has nothing to do with it" (we should definitely
invent a song about that one people!). I needed relief and had no other
choice at the time, so I went ahead with the operation.
Knowing what I know now, I would have probably opted for the removal of
the stricture only, followed with a course of medication with the SCD diet
to deal with the rest. I do NOT feel that I was properly informed of my
options, I had no option, the surgeon decided for me. I was still then in
the "old fashioned" zone that you don't question the experts, til now ...
No sense chastising myself for not being more agressive ... I didn't have
the knowledge or the strength.

Okay, setting the history of my resection aside, I am feeling great and my
bowels have recommenced their usual business. I am very lucky that I have
"trophies" starting about 3 weeks ago but then again, this could be
attributed to being on the SCD soon after my operation. The surgeon told
me that people with resections normally maintain some D, and visit the
bathroom 3-4 times daily. My surgeon prescribed Questran to regularize my
bowels but I haven't used it or needed it. I'm on the SCD to maintain
remission and to avoid further surgeries. I go to the bathroom once or
twice daily at the most and have formed stools. I intend to stay on the
SCD diet possibly forever as one surgery increases the risk of further
surgeries, it is not a cure.

I thought you might benefit from other's experiences and you should be
skeptical of surgical intervention unless you really trust your surgeon
and feel fully informed of all your options with some assurance that if
you opt for surgery, you can also decide what gets removed and what
doesn't. My surgeon also informed me that I will likely require further
surgeries in the future ... I want to prove him wrong, very, very badly.
So I'm taking control now.

We each have to decide what is best for us but having information from
others who have been in the same boat is so helpful to us, the doctors, I
find, don't have enough time to discuss everything with us and educate us
about our disease. I'm not even convinced that they know what to do with
IBDers yet, other than medicate and operate. This listsv has been a
godsend and I will be forever thankful for finding it and the people who
share so generously. I'm learning so much I hardly have time to absorb it
all but without it I'd be a bit more lost on the SCD and a little less
encouraged. Thank you everyone.

From the LI listserve

left quote
The book should be required reading for anyone with Crohn's disease and we wish gastroenterologists would read it as well. The diet is a real alternative to the drug based therapy from the medical community.
right quote
- Bruce Senn
Amazon customer

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