Ileostomy for Crohn's - Remove Anus or NOT?

Dunno the surgical advantages and disadvantages but if I go back to having an ileostomy I'm having everything removed - rectum, anus and kitchen sink and all. Just reading Christine1946's posts alone have convinced me it's a good idea to remove the anus: I just never want to be dealing with problems in that area again, particularly after surgery.

NCOT, thanks for the quick response. I have the same inclination as you in regards to removing everything in the bottom.

cupcakespinkgal said...
If the diagnosis is Crohns I think it is a huge risk to leave the anus. I know I'm not a doctor but I simply can't understand why you would. It just leaves you open for future pain, complications, cancer, inflammation, additional doctor appoints, and continued rectal exams.

The couple people I know of on here that still have their anus have had additional problems. Part of what makes my ostomy worth it is I live a pain free and issue free life. I can't imagine having my ostomy plus rectal pain and inflammation to contend with.

Did the the surgeon that says leave it say why?

When I asked my surgeon about leaving it he said no. He wouldn't do the surgery if he didn't remove everything, rectum And anus. Of course I did have severe rectal disease so maybe that had to do with it.

cupcakespinkgal, thanks to you too. I haven't talked to them again yet. I'll ask the reasons when I talk again.

Two possible reasons for leaving the anus might be:
1- Less complications from the resection surgery.
2- Removing the anus can damage prostate nerves, which, in turn, can cause male sexual dysfunction. Removing the anus specifically increases this kind of problem majorly.
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Although, from your post, I'm thinking you may be mixing rectum and anus. They are not interconnected.

A person can have an inflamed rectum but still can have a healthy anus. You can have your rectum removed, and live healthily. Although you're right that Crohn's can act up on the anus in the future.

After my colon sugery, my surgeon insisted on removing the rectal stump and anus in a second operation. He said there was a cancer risk and wouldn't even consider annual biopsies. He said I didn't have to rush into the second operation, but I had so much discomfort following the first surgery that I was willing to get the rest done ASAP. As it turned out, the rectal stump and anus were diseased and had fused to my vaginal wall, so the surgery was longer and more complicated. But once I healed, the pain and discomfort were gone! If your rectum is gone, you don't need the anus and rectal cuff, so it's best to get it removed. I am glad I did.

xy123, yes, my rectal stump and anus were also diseased with Crohn's. In fact, my problems started in my rectum years earlier and Crohn's wasn't diagnosed until the disease spread upwards into my colon. The fusion of my stump and vaginal wall was most likely due to some healing that occurred while on Humira. My rectum was increasingly narrowed from strictures to the point that I could no longer pass solid stool and the GI doctor couldn't examine me even with a pediatric scope. The infection from all of the disease caused colon abscesses that hospitalized me a few times until it finally caused me to become so infected that I had to be scheduled for urgent surgery. I had 2 abscesses the size of oranges and a perforation at that point. If I'd had the surgery, same as the one you describe, before I developed such serious complications, it would have been much easier and less dangerous. I didn't go when it was advised because of fear and ended up having open surgery instead of a laperoscopy. I am fine now and living with a colostomy but am thankful to be alive. My advise is to listen to your doctors and do what they suggest.

I too have a colostomy connection at my ascending and a little bit of my transverse colon. An ileostomy was planned but at my request because it's easier to deal with, my surgeon went with the colostomy because the rest was clear. However, I was instructed to get on maintenance medication and have regular colonoscopies. I am on Remicade infusions now, after the first colonoscopy showed a return of the disease because I delayed the medication out of fear of side effects. I am doing okay on the Remicade and am taking it one day at a time. There are no guarantees on anything in this life. Good luck. 😊

Hey, I saw my name mentioned here so I am adding my two cents. Hia Pat! LOL! Anyhoo, I was diagnosed with ulcerative proctitis in 1998, doctored for it for twelve looong years...and, BTW...you said something about taking 6MP? I took that crap for seven years and it did absolutely NOTHING....oh yes, it gave me increased bilirubin and pancreatic enzyme levels which were off the charts. Long story short, I had my surgery in 2010. My doctor took the colon and rectum but left only about 2cm of anus. In 2014 (exactly one year after my surgeon retired) the disease found its way to my anus. Since then, I have been seeing a new surgeon who is very reluctant to remove the anus. He said it would be a BIG operation for me. I am now 70 yrs old, but in otherwise, good health. However, the surgeon agrees with me that since I have vaginal issues, mucus coming out the vagina, that there must be a rectovaginal fistula. I was NEVER diagnosed with Crohns.
The explanation I received from my original surgeon about WHY he left that itty bitty part of anus is that there are more complications when they remove the anus. The surgeon I am now seeing, agrees, so go figure. My husband and daughter said that the surgeon contacted them from the operating room and said he bumped up against a bleeding problem with me during surgery. So, maybe that is why he didn't want to prolong the surgery. He never said I may have problems in the future with inflammation inside that anus. I have had problems off and on, at the moment, no problems but a week ago....yes, it was bothering me. I am wondering if soaking my butt in that dirty ocean at the Jersey shore healed anything. Okey doke, with that all being said, I wish you the best! Oh...I am getting yearly biopsies in that anus...I asked the doctor about my chances of developing cancer inside the anus and he said 0 to 4%, good enough for me! Even though my paternal grandmother died from rectal cancer at 65. Cancer can develop anywhere. One of my dear friend's is terminal with cancer of the gall bladder and living out his last days....here was a guy who ate healthy, ran marathons, etc, so go figure. When your time is up, it's up.