Simple. I subscribe FIRMLY to the "if it ain't broke, don't fit it" mind set. As it turns out its quite likely removing the appendix did "protect" my ICV when I developed Crohn's disease some 5-6 years later as my Crohn's struck first in the mid-ileum, not at the ICV as is so common. I was blessed w/a 20 year remission of Crohn's disease after my resection of 18" that mid-ileum in 1978.
[b]Thank you[/b] for your suggestion of having an "advocate" standing by. But it isn't fear of "abuse", it is totally a lack of trust of the medical profession
. And those who would be able to advocate for me would all "cave in" to whatever the doctor decided anyway. To say nothing of the fact that no surgeon is gonna walk outta the operating room to tell the "advocate" we've gotta do x or y which we didn't expect or plan on doing.
I've already told this Mayo surgeon that it is "my" ICV and it is "my" choice to risk needing another resection in a year or so if needed for the ICV. Unfortunately, I can understand what he is saying about the blood supply to the area. It makes sense even to me. And despite such a low risk factor for that I am NOT at this point willing to take that risk. My body, my decision. No one to blame but me if I'm wrong. I can live w/that.
This surgeon made the mistake of telling me that's he's known so many crohnies who didn't remember or realize what it feels like to NOT be sick they've been sick so long. I KNOW what it feels like to feel "normal". I had a 20 year remission, remember? So far, the symptoms I've been encountering have been mild, intermittent and have not in anyway impacted my life style and activities or the things I want to do and do do.
I think part of it is that "they" didn't stop to think that my resection was 30 years ago this past February. It was a side to end resection w/the loop left in, the "Eisenhower surgery". That alone would account for the "distention" when filled w/barium or other "matter". In addition, this CTE I drank the 3 bottles of "barium" or whatever in 15 -20 minute intervals and then the CTE was done. Last year, locally, I had a much longer span between the barium, don't remember that I had to drink that many of them and then had to drink water before leaving home and immediately upon arriving at the imaging facility prior to the CTE. That also would account for less distension on those images than on the current images.
I'm still thinking this thru as I'm sure the "smartest" thing to do is to have the surgery now - but I'm not always known for doing the "smartest" thing. I've had 10 good years since they first recommended surgery - and I've not regretted a minute of it ... so ..... we shall see.