CES: Stuff we don’t talk about in normal conversation

CES Stuff we don’t talk about in normal conversation

Bowels:
Could be incontinent, constipation, or loose stool. Everything that is your worse thoughts about it can happen. I know I usually write about pain and depression but I also get a few people that have Cauda Equina Syndrome looking for information/. So I decoded tp talk about the bowels because it is the most horrifying, indignant, humiliating business that someone with CES goes through.

Because we no longer have normal nerve function of the bowel, our pooping system is a mess. We need to keep track of what we eat, what gives us the runs. Also need to keep track of when we go. Forgetting when we last went can give us huge consequences such as impaction to an all out marathon of spending the day on the can.

Most CESers are on a variety of medications that cause constipation. It sometimes can take what seems like a stick of dynamite to get things going and then when they do, all hell breaks lose. Other times we push and strain just to get a rabbit pellet out. This kills me when it happens because it feels like I am pushing a softball out of my anus and instead it’s nothing more than a tiny golf ball. Then because the stool is most likely hard, you get hit with nerve pain so bad you want to pass out or blow your brains out. Nerve pain in the rectal area is so painful you wish you never have another movement again. Sometimes this pain goes away, other times it doesn’t and you are stuck with proctalgia for days. This type of pain is different than the ball in the butt feeling. The ball in the butt is a constant sort of pain that is always there. This nerve pain is like a red hot poker going right through you, causing you to feel pain so internally like you never had before. Luckily I don’t have this pain every day or I would commit suicide. It only happens when I pass hard stools.

I do suffer from incontinence at times with loose stool. I’ve found that I cannot tolerate cottage cheese like I did. It causes the runs and I am on the toilet for the day.

Most CES sufferers try to have a bowel regimen. It involves either the use of laxatives, enemas, stool softeners, or fiber. In some cases, manual evacuation of the bowel is required because the bowel is so weak you can’t push it out. Occassionally or maybe more than not there is the danger of impaction. That usually requires a hospital visit and it can be humiliating.

Getting used to the anxiety of going is not something to take lightly. There are days I don’t leave the house because of fear of an accident. There also are times where even at home I dread going to the bathroom because I don’t know if it will be good or bad. Sometimes even while on a regimen there will be days of miscues and accidents. Finding one that actually works for a good length of time is like finding a secret formula. One day this will work, another day something else will. Everything you have taken for granted before this happened to you is lost. And there is no greater loss than crapping your pants.

Some people have found it helpful to have a poop day. It is a day that is set aside just for that reason, though you can’t always rely on that one day to go. Luckily my condition is not that severe that I require it, but it something to keep in mind to have some measure of dignity and control that we have lost.

Living with CES is hard. You need to keep track of so many thing, fluid intake, bowel output, bladder output, where your feet are at all times so you don’t trip over them. It’s crazy. It’s been a difficult twelve years living with this condition. I’ve lost my dignity more times than I can count. It’s such a shameful condition. Some people can brush it off after the hurt and even laugh about it afterwards but some people are like me, can’t, It hurts not being able to control bodily functions like you used to. It makes you want to throw caution to the wind. Mobility is another issue. If you can’t walk fast enough to the bathroom, that is the worst. Most find that they need a commode near their bedrooms for this reason.