Concerns about Constant Need to Go with Sigmoid Colostomy

I have a neuromuscular disorder that causes me to go to the bathroom 15-25 times a day. The sacral nerves in my rectum don't stimulate the muscles to hold back waste properly, so I actually have the rare problem that I really need to go 100% of the time. I have this constant horrible pressure and even though I'm very clean and fit, I always smell bad. In a month, I'm getting a sigmoid colostomy which will leave the rectum/sphincter intact. So I will still need to pass mucus. Since I don't hold back waste normally, I'm extremely worried that I will still have the constant need to go and still be isolated/always on the toilet. I discussed this with the surgeon and he said that it sounds like a strong possibility. He said that the average person may still pass mucus 1-2 times a day. The problem is that's how often the average person passes waste, while I go 10-20 times as often and have pressure/smell 100% of the time. So I'm worried about being in the same position due to mucus.

The surgeon still wants to leave the rectum intact to make the ostomy reversible and make the surgery much less invasive. I agree that this should be plan A, but I'm really worried that after all this insanity I'll still be crippled with sickness. And he doesn't want to consider the rectum removal as plan B. He's an excellent surgeon, so I don't want to go elsewhere, but I'm going out of my mind over this.

Does anyone with a colostomy/sphincter still have problems with mucus? How often do you excrete? Would a twice-daily enema make it feasible? Is there a bad smell? Would you rather just lose your rectum? Alternatively, would anyone with no sphincter like to comment on this issue?

Sorry to be so explicit, and very sorry if I sound negative about all this. I really do respect the people who get ostomies. It's just that I'm going out of my mind. 5 years of intense illness, pointless testing, daily health food/exercise, a useless neurostimulator, now major surgery, and I may still smell like waste/have pressure 100% of the time. I'm barely hanging on anymore.

Hi J,
Wow, you sure have a lot to think about. I read where you say you don't want to go anywhere else because he is a good surgeon, but I can't help but wonder....would it hurt to get another opinion? It might help you look at things differently or confirm what you already know.
I have a permanent colostomy from colon rectal cancer where a grapefruit-sized tumor was growing and attached itself where the surgeon had no choice but to create a stoma. Most of the time, I don't even know when my body is "working" and it does it anywhere from 3-4 times a day depending on what I have been eating. Sometimes, but rarely, I can feel pressure and then know things are working. I feel this comment doesn't help you much but nonetheless, I felt the need to comment.
Best wishes on your decision!

Oh man, I'm so sorry about your condition, been there done that. Before I had to have my rectum
removed due to cancer, I was given a colostomy due to colon cancer. I passed a stinking fish-smelling mucus that came out bloody or pink-looking. It might vary from person to person, but it could not be controlled with the sphincter muscle at all because it came out like liquid oil. There is really nothing I could do about it, very embarrassing. Sometimes, even though I wore 2 pairs of underwear, I would find a wet spot on my dress pants. I started wearing camo patterns to hide the spot. They do make some ultra-thin diapers that are hard to notice, and you could put a few drops of peppermint oil or spearmint oil, eucalyptus or body spray on the diaper, but you will always smell different. This is in my case, but you might be different. There are little plugs available at med supply stores that you can insert and take out to relieve yourself, but I found them uncomfortable to sit on. You could also buy a good quality paper towel to roll up and stick between your cheeks. This mucus is a natural byproduct of the body so that stool can easily pass through the rectum. Look on the bright side, you will have a reversal in the future and all will be well again.
You will be surprised at what the human can get used to. You might want to put throw rugs down
on the floor in your bedroom and bathroom so you can protect your carpet if that's what you have. Keep in touch and we can get through this because we are glad to help you in this very foreign predicament. No question is too small or stupid, and remember that many of us have been there and you will find that life goes on. You will carry on and learn as you go, and you will accept it. Keep in touch and God bless. DO NOT BE AFRAID, BEAT THIS.

Hey J, I'm sure Mrs A and Monty helped you.  I'll just offer my little bit.  Once you get the ostomy there won't be any stool in the rectum meaning there should not be any stool-like odor. You'll probably have mucous discharge a couple times a day but it won't necessarily be a lot and I don't think it should smell badly unless there's an infection.  You'll get more info from more experienced folks here but don't ignore Mrs A's suggestion about a second opinion.

Wish you the best,

Mike

Hello jpeters,  I have a similar problem to yourself in that my sphincter muscles do not work properly so I leak most of the time.  Prior to my ostomy I did try the electrical sphincter stimultation technique but it didn't work for me.  I tlaked to my ostomynurse about this and she advised that the surgeons don't like to remove the anus partly because of the possiblility of reversal but largely because that is a much more complex operation than creating an ostomy. (Major surgery was how they described it.) I was not and am still not prepared to subject myself to more surgery so I have persisted with the anal incontinence.

For many months the mucus was horrific and coming out in all sorts of colours texture and smells. I then created an irrigation tool made out of the end piece of a Coloplast /Peristeen anal irrigation system which I used to use prior to the ostomy. I fixed this to the shower hose in the bath and flushed out all the grot every morning. This was useful in getting rid of all the nasty stuff but it did not stop the clear mucus leaking all day.  However, the clear mucus does not smell in the same way obnoxious way as the other stuff so it does not pose quite the same problems.  There is a problem with anal mucus in that it is not like a normal liquid but is almost like a liquified gel, so it  does not immediately soak into an incontinence pad. I have found that if I fold up a facial tissue ( toilet roll is too tin and not suitable) and place this between the anus and the pad it soaks up the out put for long enough to allow the inco-pad to do its work. After about 18 months I decided to  try to stop anal irrigation to see what would happen. To my surprise the grotty stuff did not return and I am now only left with the clear substance to deal with.

In the UK the problems of incontinence are dealt with by a separate department to that dealing with ostomies. They are each very good in their own ways and are helpful in helping to decide on the best methods and equipment to deal with different facets of incontinence and faecal management. Whilst it is somewhat disappointing that the ostomy did not resolve all the previous difficulties with anal incontinence, I have decided to stay with managing the incontinence of the mucus by using incontinence pads. This has not stopped me working or doing most of the other things that I want to in life so I figure that it is a relatively small price to pay.   As with all these types of decisions we are advised to look at all the options and weigh up what is likely to be in our best interests at any one particular time.  We can always make different decisions in the future if we so wish.

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Best wishes  Bill

Words of Encouragement from Ostomy Advocates I Hollister

I  ommitted to say that I have experimented with other possible solutions to the problem of anal mucus incontinence. I tried anal plugs (left over from pre-ostomy days) these are a brilliant design in that they open up like an inverted umbrella to catch the faeces. However, they don't work for mucus because it leaks around the device. Also the thing is made of relatively non-porous material so it doesn't in itself soak anything up. I tried women's tampons which were much better at soaking up the mucus but (because of their bullet-shape) had a tendency to slide out as soon as they were 'full' thus making that method a bit self-defeating.  In the end I decided that the tissues and inco-pads were the best available solution.  If anyone has found anything better (apart from surgery) I would be pleased to give it a try.

Best wishes  Bill