Waiting for a second opinion

[ragdoll]

apologies for the writing (my brain has turned to mush over the years)

the gi specialists have referred me for surgery, finally.
the surgeons want to do something along the lines of a sub-total colonectomy.
i believe that they are looking at removing everything after my first stricture, towards the end of the small bowel. there are a few other strictures, so as a proportion it's only a relatively small amount that is... um... junk
(the surgeon appeared to be willing to consider keeping the lower end of everything. erm is keeping this a cause for celebration, or just a "hood ornament"?)

their view appears to be:
1a. "best take it all" due to the risk of future recurrence (is this sensible? surely, to me, it makes as much sense to leave as much as possible for when IT returns, so at least there might be something left after another future round of surgery?)

2a. better get it done now than in 20 years time, when i'm old

3a. as they cannot use a scope on my colon (too strictured), they have the usual concerns about cancer

4a. the doctor who failed with the scopesaid you'll nedd some surgery

i am sure that probably "something needs to be done", and soon (i went begging for surgery in the fall of 2012, but didn't qualify. only a month later i had an aborted scope attempt - too strictured)
while there will be a benefit to me from the proposed solution, i don't want to jump for the first available chance regardless, only to find later that it was a poor choice
(recently, i have been getting minor symptoms that have had me - and the family doc - wondering whether i would beat the surgeon to the punch, via the ER because of a blockage. it's been close, but no prize... yet)

i am very troubled by what seems to be the processes behind their thinking

1b. cutting now means losing the chance of future developments (think of how things have changed in recent years)

2b. taking "more" to avoid future issues: why stop there?
isn't the logical conclusion remove everything from toenails to earwax - and everything between)

3b. cancer... previously, no interest has been shown whatsoever, despite a family history (including my brother having intestinal cancer at 35).
to go from "meh" to "hollowing out" in one step seems a huge leap.
is this current zeal an overraction, or wwas there previously another dropping the ball?
this smacks of convenience. having body parts hacked off as they are a real hazard is a different thing from "it was in the way of a clear view"...

4b. since then, i've had other tests, that found nothing new & spectacular. i feel that the information they are using is now bordering on ancient history, especially as my symptoms have changed significantly. there is a presumption here (that i fall into, as well) that nothing will have changed for the good

...and i hate the prospect of a stoma, too!

[/whinge]
thoughts, please

thank you for your time and forbearance

 

[Cosmojo]

This is really interesting, I can see both sides of the argument here, just because they haven't been interested in cancer before doesn't mean it isn't a real and valid concern, IBD patients have a higher risk of colon cancer than the general population.

I'm not sure I understand the "take it all" approach, I suppose that if your colon is so strictured you can't have a scope that it makes since they are concerned you will need more taken out anyways. You are right though, not too many people argue for removing more than is absolutely necessary. I guess you need to consider if you would be willing to undergo this surgery again in the future.

You should always be conservative when removing internal organs, but if it could really help you, or safe you the pain in the future then maybe they are right. I'm sure your surgeon has done this before so his opinion must have valid points. Also don't let the worry of a stoma bother you.....at this point I'm asking for one because of how bad my symptoms are....

anyways lots of good stuff to think about, best of luck!

 

[UnXmas]

Having a stoma isn't necessarily a bad thing, I love mine.

The sudden change of mind about cancer - have you passed a milestone birthday recently? They may be following guidelines that recommend that once someone has reach such and such an age, doctors must consider the possibility of cancer.

I think in some cases there is a benefit to taking more to avoid future problems. It would have mean one less surgery, one less general anaesthetic, one less hospital stay, and may prevent future problems from arising. However, sometimes it may be beneficial to make a surgery as minor as possible, and minimise the duration of the surgery and the recovery period by doing as little as possible and just fixing the immediate problems.

It's very individual. Clearly your doctors are working on the assumption that you're going to have more problems in the future and that your disease will worsen. It's impossible for anyone to know for certain if this will be the case, with this disease, so your doctors are going to have to be relying on guesswork to some extent. They do know you'll be getting older, of course, but they should also be taking into account things like your fitness relative to your age, and how you've responded in the past to other treatments - has medication proved unsuccessful, for example? What tests have you had recently, and how do they compare to past tests? Are there medications you've yet to try (though that's not to say that surgery should always be the last resort)?

Do you have specific fears about surgery?