Rectal stump removal: Experiences and after-effects?

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Tiggy
Feb 06, 2014 1:41 am

Greetings all!

I used to have a rather active account on this website, but over the years I stopped coming as often because my real life got rather busy. In any event, it's awesome to be back and I look forward to reconnecting with some old and hopefully new friends here as well!

To make a long story short, my beautiful and very much loved husband, Tyler, has had his ileostomy since he was about 25 years old. He is now nearly 31 and is still doing great all things considered. However, just recently he started having sigmoidoscopes (he still has his rectal stump, but none of his large intestine) in order to screen for cancer as a precaution. The doctors have found that he does have inflammation in his rectal stump, and our specialist gave surgery to remove the stump as one of our options.
Tyler and I are both very worried though because we know that there's a chance he may be rendered impotent by the procedure. Naturally, if he were diagnosed with cancer, there would be no question at all! But for the time being, no cancerous polyps were found. Still, our specialist was honest enough to admit that there's always a chance cancer can be missed when they do biopsies of the rectal stump, which was a very frightening thing to consider.

So now, Tyler is left considering whether or not rectal stump removal might be worth it.

Can anyone who has had their rectum removed please let me know what the after-effects were like? I really need to hear from you brave people now!

Thank you.

scotiaman
Feb 06, 2014 1:08 pm

Hi.. Just over four years ago, I had made the decision not to bother with a reversal, so my surgeon advised based on the fact that I was then 58 and had been bothered by colitis off and on since I was 22. That I should seriously consider removal of the rectum and anus. The logic was quite simple, really. I had a recent history of polyps, colitis was affecting the stump and making life unpleasant. But most importantly, there is a high convergence of blood vessels in that area. And as the surgeon put it, if cancer cells occur in that area, they can be rerouted through the bloodstream to other areas of the body long before a definite diagnosis is made. So a decision on rectum/anal removal depends on the time exposed to bowel disease, presence of any pre-cancerous cells, family history, etc. As far as erectile dysfunction, there was no change, all works well. There is scar tissue that makes things a bit uncomfortable, but that dissipates over time. I don't know if the surgery affects sperm count (too old to care at this stage in life LOL!!!). Maybe contact the Mayo Clinic or John Hopkins for some opinion on that.... The important thing is to get a well-seasoned specialist surgeon to lead the surgery. There are a lot of critical nerve threads in this area, so in my view, don't go with a general surgeon. One issue I did run into was that I developed a small sinus during the healing process, i.e. a small cavity just inside the anus which became uncomfortable and left me feeling like I had a swamp in my pants... There wasn't a specific leak, but it was damp and would get sore... I was assessed with an MRI and rectified by a plastic surgeon in an hour of outpatient surgery. All the best!

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Tiggy
Feb 06, 2014 1:47 pm

Thank you very much for your response!

We have already agreed that if Tyler has his rectum removed, then he will definitely go to a colorectal surgeon and not a generalist.

Hope you continue feeling great.

robbin
Feb 14, 2014 3:39 am

I've had my rectum stump for 14 years. My GI Dr. tells me all the time that I should have it removed. My answer remains the same...NO! If your husband is not having any problems with the rectum stump, then why remove it? If it ain't broke, don't fix it! I understand we are at a higher risk for rectal cancer, but I've chosen to leave well enough alone. Take care.

afriendindeed
Feb 14, 2014 10:05 pm

I'm scheduled for rectum and anus removal next month. My colon was removed during my last surgery. I'm wondering how the recovery will be relative to the colectomy.

 
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Kstark414
Feb 23, 2014 10:03 pm

I have had an ileostomy since 1971 and until 1994 I had a total colectomy and a rectal stump. The stump was subject to cramping and minor bleeding but was tolerable because I used belladonna and opium suppositories. They were a great drug, but in 1994 there was a worldwide shortage of opium and they became unavailable. My surgeon at the Cleveland Clinic had been on me for years to have the rectal stump removed, and I did so at that time.



Today, I experience occasional phantom pain (i.e. pain where the rectum used to be) and a very light occasional discharge. The major issue is erectile dysfunction. At first, there was no problem but over the years, as nerves died, the feelings that lead to an erection faded and today there is virtually no ability to have an erection. Viagra really doesn't help, so I am basically impotent.



While this sounds terrible, I avoided some of the worst potential issues such as heavy, malodorous discharge and a wound that never heals. If you can avoid this surgery, I would do so. Good luck.

gso1949
May 23, 2015 6:28 pm

Hi, I'm new to this site. My husband has had a lot of problems with very bad leaking from his bottom. He has been told that it might help if he has his rectal stump and anus removed. Any information would be very helpful. Is it a long recovery and is it worth it? First operations went wrong, he was very ill and ended up with C. diff infection, so we are very worried about him having another operation.