OT- questions for surgery

[Guest guest]

So it is pretty unanimous that various docs agree I need surgery.. Being me, I

still have not made up my mind. It feels like the right thing to do but perhaps

I won't know or have that " complete " feeling until just before, the wee end or

when all of this is behind me.. It was explained to me that Crohn's strictures

really don't get any worse and they don't know how I am walking around

functioning! I am like screaming in my head " DIET PEOPLE WHAT IS SO FRIGGEN

HARD TO UNDERSTAND?!?!!? "

I met one surgeon that was very nice and also super supportive of my dietary

needs. I am meeting another tomorrow for a second opinion. Anyway the first

said they would remove about 2.5 feet of insides in total, he would not answer

my question about how much of my small bowel he would remove as he cannot answer

until he is inside which concerns me as I think I rather die than have Short

Bowel Syndrome. He actually said to me " Jodi, this is where you are going to

have to put your trust in me and my experience and let ME decide " He said he

would not want to compromise me or any patient's quality of life and out of

thousands of procedures for Crohn's and Ulcerative Colitis (he deals with CD and

UC %90 of the time, the other %10 is bad IBD and diverticulitis) Anyway out of

thousands he has only had 2 patients that had short bowel. He has done more

than a thousand procedures for what I need alone. This is apparently supposed

to be way impressive.

Anyway, I am concerned with the Anesthesia and Pain medicine care. So, he told

me I can talk to the anesthesiaologist and the pain medicine doctor.

I don't have the best track record when it comes to medical stuff. The

colonoscopy anesthesia went over well although right after I got a huge rash on

my left side that is still there. The propofol is in a soy base and I wonder if

that is what I reacted to?

Anyway, what kind of questions should I ask an anesthesiologist?

I wish I could get my own hospital room too. Is that even possible?

I hope the diseased part of my small bowel can heal on this diet. From what

they saw on the pictures the disease isn't a concern at this point. The

strictures are an immediate threat.

On a good note the surgeon thinks the mass might be tissue build up due to

stricturing but he cannot know for sure due to no picture or biopsy. He also

said that at the state I am in I am a breeding ground for Pre-Cancer regardless

of this mass. I wonder if " they " are using fear tactics to get me on the

operating table?

He answered all of my questions- he just went all vague about my small

intestine.

Sorry about all of this crazy saga- I rather not take up too much time about my

sob story. The good news is that even in my state the diet has been pretty

miraculous to keep me going pain free and functioning- none of them understand

how this is possible and dismiss it as yet " another one of those Crohn's

mysteries " WHATEVER!!!!!!!!!!! Amazing considering the mess my colon is in.

I really did not think it was this bad or that I would be here.. contemplating

this.. having all kinds of existential questions and also going to a lawyer so

if I don't wake up my wishes will be met.

Sigh.. Who knows if I am strong enough..

Jodi