ok, this is reposted from the Ostomy forum, since I get a lot more reply's here, I wanted to post to both, sorry for taking extra space mods, but I need some today....
I think most of you know my background, I was diagnosed as a teenager with Crohn's, it has remained entirely in my lower digestive tract, with severe fistulas that simply won't go away, I have tried all the standard meds, and the biologicals. I go to Cedars-Sinai, to one of the most advanced Gastrointestinal medical centers in the world, i believe that my doctors are as good as they get. I now have an ileoostomy....but my fistulas haven't healed as hoped, so it's no longer a "temporary" ostomy.....
I am really on the fence now as to whether to just bite the bullet and have the surgery to remove my whole colon and rectum, or just keep it up with the setons.
The setons I recently had put in, came out a few weeks/month-or-so ago, (the thread that ties them together came undone).
So now, I am going to go back and see my colorectal surgeon.
The plan when he put in the last set of setons, was to let them help heal the area, then go ahead with the surgery to remove the colon and rectum. The doc thought logically that if the infection / irritiation in the perianla area was lessened, then my healing time would be less and I would need less skin graphing.
Now I am freaked out since I can't afford to lose even one week's pay, but then again, can i afford to let my body get worse?
Then I see specials on TV about
how they can grow replacement bladders and fingers now, and I wonder how far off they are with a replacement rectum/colon.
I just want my life back to how I felt when I was a strong, fearless, pain-free pre-teen (argghh, that's an eternity ago now, almost 17 years!) and I do get annoyed by my ostomy.
I now have a new fistula that is among the most painful I have ever had. This bums me out since after my ileostomy, i was slow to develop any new ones.
I wonder if i am just doing this to myself by refusing to try one or all of those boring and tasteless diets that is designed to kill the "rampant yeast infection" that causes like every health problem in the world (yes, I am slightly cynical, just slightly...ha!)
oh, and then there is the smoking.....i need to quit that too....
of course, I still deal with the b.s. all Crohnies do, comments like the one my brother made, he tells me after being angry at me this weekend, "I don't hold in my feelings, so that's why i never get sick!" brothers, love to hate em' sometimes, can't imagine life without them other times!
I had to tell him, "really? what's that skin irritation on your cheek there from, normal aging? no, since you work in the sun all day, it's probably an actual illness, like a pre-cancerous lesion!, but wait, you never get sick right?"
anyway, add to all of this, the fact that I if I weren't sick, I would have jumped right on a chance to move to Vegas, all expenses paid by my employer. Now that I am fairly sure I can't avoid surgery, I know it would be dishonest to my employer go ahead with the move (my Dad's one of the vice presidents, and it's a great company).
Then of course, I am single still, which I can deal with, but new fistulas, don't exactly make me eager to start things up with a new girl.
Ok, so I think I am done ranting. I really think I just needed to vent. I first tried to just offer helpful advice or thoughts to other posts here and on the Crohn's forum, which helped me feel better for a minute, but I need some kind words and encouragement since I am feeling beaten down these days.....
ok, please "raise me up" and "give me wings so I can fly"
sorry if I have depressed any of you! I think I am as good as cheering people up as I am at bumming them out!
"I am he as you are he as you are me and we are all together!" - The Beatles
doesn't that just sound cool when you sing it?