Rectum removal necessary?

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Nancy1
Regular Member


Date Joined Nov 2006
Total Posts : 125
   Posted 11/25/2007 7:51 PM (GMT -6)   
My husband had an ileostomy last June and they did not remove his rectum because he wasn't sure if he wanted to have a j-pouch. He now has decided not to have a j-pouch. We have an appointment in January at the Cleveland Clinic for a follow-up visit. Is rectum removal something that is necessary or are their individuals with an ileostomy that have never had their rectum removed. What are the pros and cons? If my husband doesn't have to have another surgery, he would welcome the idea since he is doing really well now after 34 years of UC.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 11/25/2007 11:18 PM (GMT -6)   
well it depends really on where the UC was, and such, mine was down pretty close to my rectum and they just took it out. I don't know if it is necessary or not, but i have this really hard time with grasping where it goes, and why it wouldn't be bad to have air and stuff just going up in there. That's dumb i know, but i just cannot understand that!
 
 
snaej ni tfel eht no cip


Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1245
   Posted 11/26/2007 2:53 AM (GMT -6)   
It really depends on the situation. In my case, I still had UC in my rectum and it wasn't getting any better so out it had to come (saves the problem of trying to get rid of the mucous too). Others retain their rectum for years and years without a problem.

One problem is that over time, Disuse colitis (aka Diversion Colitis) can set in because that part isn't being used anymore. "Most symptomatic patients in whom the ostomy is permanent can be treated successfully with steroid enemas, 5-aminosalicylic acid enemas or suppositories, or short-chain fatty acid enemas. If the ostomy is permanent, medical treatment is unsuccessful, and symptoms persist, acceptable surgical candidates should undergo resection of the excluded bowel."

I figure, if you're never going to use it again, you might as well get rid of it and save yourself the hassle of getting rid of the mucous all the time too. Mine was removed a year after my initial ileo surgery. BTW, no one can tell I'm all sewn up back there and don't have a rectum or anus unless you spread the butt cheeks apart and look. Otherwise, my backside just looks like anyone else's backside :)
I have had an ileostomy for 31 years now due to UC.
 
Moderator of the Ostomy Forum
_______________________________________________
 
I'm not a complete idiot - some parts of me are missing!


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5691
   Posted 11/26/2007 8:22 AM (GMT -6)   
If he had his surgery due to UC the rectum should come out as the UC may return to that area and your husband may suffer the same old UC symptoms and have to take all the UC meds to control it. However, you are going to one of the best places for UC/surgery, the Cleveland Clinic, and I am sure they will advise your husband on the best course of action.

Sue
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
 


sfgiantsjo
Regular Member


Date Joined Feb 2007
Total Posts : 420
   Posted 11/26/2007 10:52 AM (GMT -6)   
I also heard you can still develop cancer in the areas left that might still be affected by UC, so it was important to have them removed eventually. I'm no doctor, so I have no idea how true that is, but I have heard it many times.
UC diagnosed: December, 1999
Asacol: 1600 MG daily
Immuran: 150 MG daily
Prednisone: 4 MG daily (Woo-Hooo! Getting lower and lower!)
Remicade: Infusion every 7 weeks
Probiotics 4 billion CFU Daily
Glutamine 500 mg 2x Daily
 
OFF all meds!! Liver failure, and emergency surgery as soon as liver levels return to normal. ACK!
 
Surgery August 24, 2007. Home now!


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 11/26/2007 12:45 PM (GMT -6)   
Who is your surgeon at the Cleve Clinic? That is where I went for my surgery 23 years ago! They are excellent at what they do... tho, I agree with Shaz:

""I figure, if you're never going to use it again, you might as well get rid of it and save yourself the hassle of getting rid of the mucous all the time too. Mine was removed a year after my initial ileo surgery. BTW, no one can tell I'm all sewn up back there and don't have a rectum or anus unless you spread the butt cheeks apart and look. Otherwise, my backside just looks like anyone else's backside :)""

I have CD not UC. My rectum was involved. It came out - no choice. And my 'bum' looks normal - you'd never know. For me, it was not a good place to have an incision. (I was really malnourished & underweight at the time == no padding to sit on!) Now, I totally forget I don't have it... ride motorcyle with DH, have been horseback riding, etc. No problems.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 11/26/2007 10:00 PM (GMT -6)   
It's true that there's an increased risk of developing rectal cancer if your husband has active disease in his rectum, so it would be advisable for him to have it removed. I had my rectum removed at the same time as my colon, and I didn't think it was that painful, mainly because I was more focused on the 8 inch incision on my abdomen. I was out driving and grocery shopping 2 weeks after surgery. I would get tired easily, since my body was still healing.

One of our friends on here named Slice had his rectum removed last week, and he should be home from the hospital soon, so keep an eye open for his posts on what he has to say about the surgery.
Dx'd w/ Crohn's in '99 at age 28. Proctocolectomy and ileostomy in '06. In remission since surgery.
Pain-free, med-free, and very thankful to be healthy again :)


JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 11/28/2007 8:05 AM (GMT -6)   
I still have my rectum 17 years later, and have had many surgeries since. They keep deciding to take it out "next time," but they do biopsies and they always come back normal. It's possible to keep it if you have no disease activity, you just have to have it checked routinely as I do, usually when they do a colonoscopy (or Ileoscopy as the case may be).
Judy
Crohn's Disease   
Too many surgeries, ileostomy6MP for maintenance.
 
 

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