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

Should I have the whole kit and kaboodle removed?
Nat, you know the answer, stop stalling. - 71.4%
Tough call - 0.0%
ignore it, how could things get worse, right? - 0.0%
yes, you will never regret it! - 14.3%
you will be better before you know it if you man up and get it done! - 14.3%

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Glad Bag
Veteran Member

Date Joined Mar 2007
Total Posts : 699
   Posted 8/12/2008 3:41 PM (GMT -6)   
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!

eyes eyes idea idea rolleyes rolleyes turn turn skull skull nono nono devil devil
"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?

Veteran Member

Date Joined Feb 2006
Total Posts : 5698
   Posted 8/12/2008 4:19 PM (GMT -6)   
You can get your life back immediately if you opt for surgery. There is no cure or remedy for UC or Crohn's in the near future (just confirmed from a IBD doctor). I lived in a chronic state of illness for over 2 years then finally opted for surgery. I am much happier without my colon and rectum.

dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free

Veteran Member

Date Joined Feb 2006
Total Posts : 629
   Posted 8/12/2008 5:10 PM (GMT -6)   
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.

Dec 2006: Proctocolectomy/permanent ileostomy
Since 1991: Indeterminate crohn's/ulserative colitis

Regular Member

Date Joined Jul 2007
Total Posts : 275
   Posted 8/13/2008 8:34 AM (GMT -6)   
Nat ... having an anus and rectum is not all it's 'cracked up to be' (sorry ... bad pun). You may not get a choice if it lasts too long!
Crohn's Disease, Colostomy due to cancer and I make darned good dill pickles.

Veteran Member

Date Joined Nov 2003
Total Posts : 518
   Posted 8/13/2008 3:23 PM (GMT -6)   
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...

Veteran Member

Date Joined Nov 2003
Total Posts : 518
   Posted 8/13/2008 3:29 PM (GMT -6)   
ps--this a major decision so take your time! It took me 6 years before I committed to a permanent!! Knock on wood...still drug free and in remission!!! Oh--and doesn't your work have some sort of Family Leave kinda thing (isn't it the law??)? Surely, there must be a way to figure out the financials of the matter...

Glad Bag
Veteran Member

Date Joined Mar 2007
Total Posts : 699
   Posted 8/13/2008 3:33 PM (GMT -6)   
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...
"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?

Veteran Member

Date Joined Dec 2007
Total Posts : 739
   Posted 8/13/2008 4:45 PM (GMT -6)   
im in the same position as u r, but im pretending it doesnt exist for the summer lol. i feel like theyl b a cure soon and i want to have something to work with....don't know tho, i feel ur dilema
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!
 Temp Ileostomy performed 1/29/08
Still Adusting has been my Godsend...Thank you

Veteran Member

Date Joined Aug 2007
Total Posts : 1998
   Posted 8/13/2008 5:47 PM (GMT -6)   

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)
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 

Regular Member

Date Joined May 2008
Total Posts : 60
   Posted 8/13/2008 6:34 PM (GMT -6)   
I,m w/ evetyone daughter who is 11,just got the rest of her colon,and her rectum out and got an illeostomy...the best thing we ever did!!!She is much happier,and almost med free...It is a big decision,but we are so glad we did this and did not waste any more time of her life being sick!! Good luck w/ your decision...
Krista & takera

Regular Member

Date Joined May 2004
Total Posts : 277
   Posted 8/13/2008 7:10 PM (GMT -6)   
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.
Bagged in Aug '06
@ssless since Nov '07
" Love that dirty water...Boston you're my home"

Veteran Member

Date Joined Jul 2007
Total Posts : 2765
   Posted 8/14/2008 7:06 PM (GMT -6)   

Nat - your story is just like mine. I had Crohn's in the large and rectum, too, and had fistulas and setons. I've been there, buddy, and I know how painful they are! I also had the temporary ileo done first to see if things would heal up, but like you, they didn't.

Here's how I looked at it, I tried all the drugs (Remi, Pred, Imuran, etc etc) and nothing worked. Then I found out that after having Crohn's for 8 years, my chances for developing colon or rectal cancer increased dramatically. That freaked me out, because I had a good friend die at age 44 of cancer. When you look at the big picture, what are you holding onto? A diseased colon that isn't doing you any favors? Pretty silly, isn't it?

I had my colon and rectum removed two years ago and have not regretted it for one minute. I was out driving and grocery shopping two weeks after surgery! I work full time and exercise and feel just as good as I did before I was ever sick with Crohn's. You will too, I promise!

You're an active guy and deserve to feel great. So what if you have an ostomy. It's so much better than being sick, and any girl who you loves you and hears your story will be so happy to know that you chose to be healthy and have the surgery. Do it for yourself and your future wife and kids. smilewinkgrin


Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again :)

Regular Member

Date Joined Jun 2004
Total Posts : 231
   Posted 8/15/2008 12:24 AM (GMT -6)   
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.
Les and DB from KC(Les is a member of UC and Ostomy forum also)
DB diagnosed 11-01-07
psa high for several years from 4 to 10, but last one before surgery was 8.6
Gleason 3+3
Da Vinci on 12-14-07

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