should my rear stay or should it go now, if it stays.....

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!

you know the answer buddy!! i was in the same boat as you, lots of fistulas blahblah. i opted to do the procto instead of going the "maybe it'll get better" route and don't regret it, it gave me back my life, it will for you too.

--matt

You know, as much as I hate to be bagged I would not have a life otherwise. It's been 2 1/2 years and now most days I regret not doing it sooner because I (finally!!) have a life. I know the 'hate' I feel for the bag is mostly vanity...sad but true...

well, jen, it's not like I would have no money, just some less money for a while, and I am on a thin budget....

good thing I won my poker game last night....hehe...guilty pleasure..

I am in much better spirits today, and have set an appt with the surgeon to get some more setons back in there, and talk about the potential bigger surgery...

Thanks for all your input and feedback guys...

Nat,

I was diagnosed with CD as a teenager and suffered thru many resections, a temp ileo, all the horrible drugs and side effects, fistulas, You Name It!!! I finally had no choice but to have a perm ileo as I was basically dying from malnourishment. That surgery was many years ago (july of '84) and I have been Disease Free since then. No more fistulas, no more CD. Yeh, I have a bag, and I will have it for life. No turning back. But life is so much better with it. So go for it - that's my opinion!!!! (for what's it's worth)

Like i've said before. I wasn't using it anyway. I don't miss my rectum.

Bottom line, in the end ( now theres a pun for ya ) you'll feel better after a while. I had the setons and all, and i'm still probably going to have surgery since the wound won't heal. But i feel better.

I have had my bag for 3 years and packed up the boxes of meds and showed them the door! Not having a hole down there is weird, and the bag in itself is strange, but I love not having to find bathrooms anymore, and when I go in one, I don't scream and cry in pain. It takes a while to get used to it. I took the time I took to check my options, but at my age I didn't want to waste any more time on being sick. I am doing fine and enjoying life outside of the bathroom. Thank God there is the surgery option.
Hopeso