UOAA Discussion Board

This is off topic but I'm hoping that someone might have some insight. I have a colostomy which works just fine but my problem is pain in my rectal area. The colostomy was done 4 years ago and was intended to be temporary but due to the effects from radiation for anal cancer, I realized I would be better off keeping it to avoid incontinence.

Over some period of time - perhaps the last year to 18 months, I noticed no mucus coming from the rectum. And the reason that it seemed odd was that sometimes when I irrigate, the cone slips into the wrong passage ( I have a loop colostomy) and when that happens I would normally expel that fluid rectally. But now I have no passage through the rectum/anus because the anus has completely closed up.

I saw the surgeon that placed the colostomy and he confirmed my finding. An MRI was done which did not mention any findings in the rectum so that was a waste of time and the surgeon did not have any thoughts about it. Instead, he essentially said I would need to take my case to a colorectal surgeon to see if opening and keeping the anus/rectum dilated would alleviate the pain. I would of course like to get rid of the pain but am concerned about the process of opening and keeping the backside dilated. I have other radiation changes to my female parts and worry I could cause more problems in the process of trying to solve one. I had a rectovaginal fistula from the cancer and my female parts are also fragile from age (66). So if anyone has had similar problems, I would love to know how you resolved them.

Sounds like your surgeon doesn't want to get in over his/her head; talking to a C/R surgeon would be a good idea.

If your anus is constricted by scar tissue, dilation might help it drain. For me, that was an outpatient procedure kind of like a colonoscopy.

They might be able to aspirate the fluid (also outpatient; I found it painful), but it would probably build up again.

They may suggest a proctectomy (is that the right term?), complete removal of your digestive tract south of the ostomy, including rectum and anus. That's also known as Barbie (or Ken) Butt.

I had rectal dilation in 2007. That caused a tear (fissure/fistula/hole/sinus; every doctor called it something different) in tissue weakened by radiation, which led to a buildup of fluid, pain, frequent infections, colostomy, and eventually a proctectomy and cleanout of the area in 2018. Your mileage may vary, good luck!

Hi Ornery , I have a loop colostomy too .Mine was done by a colo-rectal surgeon , but he has retired .I've met other colo-r surgeons before , and they've never seen a mucus fistula and have no idea about anything .
I sought out help when the smelly output from the m,f, was driving me nuts .Long story short - my anus had stenosed and there were no new options to offer me because of that ( I had it for incontinence and was hoping a new procedure might be be tried ) .I am fortunate that the stenosed anus can still open enough - just - to let mucus out , but one day I may be in your situation .My original surgeon instilled in me this - if anyone ever offers to "close " the fistula up at the abdomen level , don't let them do it .Also , think very long and hard if the fistula becomes a problem before agreeing to have it removed .He said in his opinion , it was as big an op as the having the colostomy done .
I am your age too and F , I would hate to have more surgery now .My first question to a colo s would be - is there an option to leave it ? That's what I plan to do if I get worse .I don't want more scar tissue .I get quite a bit of pain now as it is so narrowed , but I'd rather have that than have them start messing about with me again at our age .
I don't know if this has helped .You can p/m me if you like as it's a bit yukky - I know what you men about your F parts .
best wishes
Lola .

Thank you Lee and Lola for your replies. It helps to have your perspectives and experiences for thinking this through. I'm getting set up with a CR surgeon that I did see a few years ago when he did an rectal exam under anesthesia. He was easy to talk to so I feel he will give me good input. I would like to PM you Lola so thanks for that offer. Will do that soon.