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New Member

Date Joined Mar 2011
Total Posts : 13
   Posted 3/21/2011 3:45 PM (GMT -6)   
hi everyone
just had my 6 weeks check up after having sub total done , and was told i will need another op to remove the rectum piece they left in
can anyone tell me more ??????
went to hospital feeling really good and come home feeling here we go again, i understand they have to remove it ,but want to know more about the op...

many thanks

Veteran Member

Date Joined Oct 2009
Total Posts : 1054
   Posted 3/21/2011 3:53 PM (GMT -6)   
Many people have their rectum removed along with getting the ostomy. Some don't and never need it removed. Some don't and then need to have a second surgery. It all depends on your body and the reasoning for having your colon removed in the first place.

I had my rectum removed with the original surgery, and have had no complications from it. I know quite a few people who end up needing to have it removed in a second surgery as well.

Are you actually feeling ill? Why do they want to remove it now? Give us a little background and some more specific questions and we will help you as much as we can!
Stephanie, 29 years old

March 2000-Diagnosed Crohn's Colitis
(Tried every drug imaginable, but lived 10 years with daily diarrhea)
March 18, 2010-Total Proctocolectomy and Permanent Ileostomy! :)
(Now med free, 4 subsequent procedures to correct blockages at stoma site)

Stoma named Zoe...She's my best bud!! :)

New Member

Date Joined Mar 2011
Total Posts : 13
   Posted 3/21/2011 4:10 PM (GMT -6)   
thanks 80schick
i have had uc for 18 years had a bad attack last oct and they could not get it under control with meds, in feb i was rushed in to hospital and had sub total done and got apermanet ileostomy now, i am losing brown liquid along with blood and mucus and it smells bad, the surgen today said he would need to remove the rectum in case of cancer but not yet will talk more when i see him this is in 6 months, he has given me some pentasa suppositories what he hopes will help, i dont feel ill just get pains before i pass this.
all i want to know is how they remove it and will it be as bad as first op
it scares me
this is the first time in about 3 years that i have felt myself and now all this muck coming out of me and i didnt know if it was normal or not
sue 41
had uc for 18 years
tried all the different drugs last few months didnt go out because of diarrhea
feb 2011 had perm ileostomy

Veteran Member

Date Joined Feb 2010
Total Posts : 720
   Posted 3/21/2011 4:42 PM (GMT -6)   
Probably the reason they did not remove your's right away is because you had emergency surgery, and that area can be hard to heal if you are weak, sick or on large doses of steroids. I almost had to an emergency ileostomy and the surgeon said I would have to get my anus/rectum removed in a second operation because they thought I would have healing issues otherwise. Fortunately, I ended up not getting emergency surgery (thanks one dose of Remicade:), so a month later when I went in for my permanent ileostomy under better terms, they removed the anus and rectum during the same operation. Mine healed up wonderfully with no problems. It didn't even hurt that much... not even when the staples were still in, which surprised me because I thought it would certainly be painful to sit. My hubby even says it kinda looks the same, the opening is just shallow and doesn't lead anywhere:) I had way more problems with my abdominal incision healing.

I bet your's will heal well too since you won't be getting it done in an emergency situation 6 months from now. I don't know how involved the surgery is to have it removed separately, but it seems like it would heal more quickly and you already have the whole ileostomy part out of the way.

I am glad I had mine sewn shut because, knowing that my ileostomy was permanent, I didn't want to deal with the occasional mucus (which I have heard is pretty normal) or worry about that little bit of tissue being left to cause problems.
-Officially diagnosed with UC in 2006, though had symptoms since 1999.
-Had mild/moderate symptoms continuously until severe flare in autumn 2010 which required 2-week hospital stay
-Took Asacol, Rowasa, Canasa and Prednisone to manage flares but meds stopped working
-Tried 1 infusion of Remicade but had excruciating joint pain and discontinued
-Had permanent ileostomy surgery 11/8/2010

Veteran Member

Date Joined Feb 2011
Total Posts : 1059
   Posted 3/21/2011 6:06 PM (GMT -6)   
I had mine removed 7 years after my ileo was done and for same reasons as you're having now. I was having lots of discharge and it was getting to the stage I was running to the bathroom as nearly as often as before I had the ileo done just because of the discharge from rectum. Also after my ileo done my surgeon did say when it was decided that colon far too diseased to be reconnected and I had said I was happy to keep bag permanately that colon would need to be removed at some point due to risk of cancer. How my surgein out it was that if colon not doing what it should be doing because it was no longer connected then it may do other things instead, ie cancer. Sort of made sense to me.

Surgery shouldn't have been too bad, make sure you ask for a PCA. I had epidural and it didn't work and I know quite a few other people on here have had probs with epidurals as well. Was back to work after 5 1/2 weeks and this would have been sooner but I had a hell of a lot of scar tissue in there and took long op to get all sorted. If my pain meds had been sorted correctly then it would have gone without any hitches.
Crohn's dx 1989, loop ileo 1992, end ileo 1992. Arthritis developed 1990 Stoma abcess 1995. Azathioprine started 1995. Panprocolorectomy 1999. Stillbirth 2000, antiphospholipid syndrome dx 2000. Flare up 2004, stoma abcess and strictoplasty 2004. Low blood pressure dx with impaired kidney function 2006, fludrocortisone pres. flare up 2010, steroids, Humira, codeine.

Veteran Member

Date Joined Dec 2010
Total Posts : 3332
   Posted 3/21/2011 7:23 PM (GMT -6)   
What Blueheron is saying makes sense to me. Three weeks ago I had a permanent ileo with rectum and anus removed. It wasn't an emergency, but I'd been pretty sick and on prednisone for a long time. My surgeon said I'm healing well, but at 50% the normal rate, due to the pred and generally having a compromised immune system. I had an abscess, which she said ordinarily would be an outpatient thing, but I spiked a fever and ended up back in the hospital for four days.

Still, it's a drag that this would be a surprise, and I get why you were upset..... but definitely better to start out healthier before the surgery. I still have about five centimeters of an open wound, just starting to be able to sit long enough on the pillow for a few minutes of dinner..... the nurse today said it'll probably be a month before it closes all the way....have to have a visiting nurse every day to dress the wound...

Hope you get more info and that things go well.

J's Mom
Regular Member

Date Joined Oct 2008
Total Posts : 109
   Posted 3/21/2011 7:59 PM (GMT -6)   
  • We just had a second opinion at Cleveland Clinic for my son for the exact thing. We were told at the time of his subtotal in 2008 that he would need to have his rectum removed in the next few years. He was scheduled to have surgery at another facility to have his rectum removed 3/3 and we cancelled to get this opinion. Here is what we were told in his case. (he has mucus drainage almost daily and some blood tinged drainage a few times a month). This is not as much an issue with him as he wears diapers so no worry with soiling or having to run to the bathroom.
    He said that the daily mucus and the bloody mucus that he has occasionally is ok. He explained that the blood is probably not the UC as normally the UC basically "burns itself out" once the diseased colon is gone. He only has approx 5" of rectum/colon or whatever remaining. He said the blood was likely caused because the stool that normally passes thru the rectum/colon nurishes the mucosa and since it no longer gets that nourishment it can become irriated from time to time. His said that they don't start watching for the increased risk of cancer until someone has had the disease for at least 5-8years. His recommendation was to return in 3 years (J was diagnosed with UC in 2007) and they will scope the remaining rectum and take biopsies. They will continue to do this every few years. The only reason he would need to have surgery would be if dysplasia (precancer) was present with the biopsies, if J seemed to not feel well or if the rectum started to stenosis off so they could not get the scope in. He said if the surgery would be needed anytime in the future that they would get all they could thru the outside and would get the remainder if needed laparoscopically.

Post Edited (J's Mom) : 3/21/2011 7:05:31 PM (GMT-6)

New Member

Date Joined Mar 2011
Total Posts : 13
   Posted 3/22/2011 1:18 PM (GMT -6)   
thank you all so much, im so glad i found you all ,

your replys are so helpful as i dont know anyone who has been through this and i feel very alone when thing bother me ,like what the drs say

im so greatful to you all for you info

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