Getting bowels under control after ces

Brain and nerves
1

I had surgery mid July 2018 for ces. As far as i can tell, it went well. Ive got the numbness in my legs and i think things are getting better there. But like many with ces, i dont have control of my bladder and bowels.

bladder I can deal with a lot easier. But my bowels are the problem. I am having a constant sensation of needing to poop. But when i actually have a seat on the toilet, nothing comes out. I often times go 3-4 days without having a bowel movement. Despite eating full meals throughout this time.

when i do finally go, its due to a combination of a couple things...

i usually go after i convince a friend to give me an enema. And then, i still only go if i sit on the toilet and gag myself as if I’m trying to make myself vomit. I guess the pressure of vomiting pushes things along as well. Keep in mind that I’m not actually vomiting. Just going through the gagging motions. I usually do this on an empty stomach. It ain’t pretty. And I ain’t proud of this. But a man’s gotta do what a man’s gotta do...

i take Lactulose every once in a while. But that only helps me poop a very little tiny bit. And not an actual full bowel movement. 

Every time i have a bowel movement, i think it’s solid, and possibly hard. When i was in the hospital and rehab center, my stool was pasty and runny. I was eating pretty bad at the hospital. But  because my stool was runny and pasty, it would always come out whenever i would stand up and exert myself as in stairs or standing/sitting repeatedly.

as a result of this, i am considering switching to a liquid diet altogether. This would be a big undertaking for me. And i wanted to know if anyone had any other suggestions on how to get bowels under control before i pull the trigger on a liquid diet.

evryone Around me seems to think they’re an expert on how to get me to poop. Drink this. Eat more of this. What these people seem to forget is that, these hoodoo voodoo tricks they have are for people with functioning bowels. 

I dont want to end up pooping From my side in to a bag.

2

Hi joe, 

Sorry to hear about your issues. I have recovered from Ces, my issues were mainly bladder and legs, and I’m blessed to say I have made a full recovery. 

Have you tried alpine tea? It’s a strong natural laxative, in nz you can buy it at the supermarket. 

Before I was  initially diagnosed with ced, I struggled with bowl issues and would go days with out having to go, I used alpine tea to help me... it’s not delicious but does work, when things were really bad, I’d make really strong brews.

Back then I too resorted to home enemas, So I feel ya! 

I hope you start seeing improvements soon! 

Sarah 

3

Hi Joe,

Ask your doctors or nurses at the hospital about the Peristeen system. 

I think this is a much better option rather using an enema and once you set in to a routine it’s becomes much quicker. Also use senna and bycicodal to manage your stools. You become to know which foods agree with you more than others. 

Also drink plenty of water, this will help considerably.

4

my update to this:

i still cant poop as normal person does. and i still wear a diaper 24/7 as the poop does not always come while on the toilet. but ive made progress in to figuring out how to achieve results…

so first thing, i can not poop unless i take a laxative. i have been taking MiraLax daily for several weeks now. it is tasteless which is a huge plus. since lactulose was seriously making me gag every time i took it.

i take miralax once a day on normal days. but if for whatever reason, i do not take it one day, then i get backed up for two days. so i usually end up taking it twice throughout the next couple of days to get caught up. normally if i go on a trip or a drive that takes a while, or if i go somewhere important like a doctor’s office then i wont take miralax. i dont want to risk having an accident while im there. as cleanup can be quite messy.

before i continue, i must point out that Hemorrhoids are big thing for me now. i spend a lot of time on the toilet and theres quite a lot of pushing and straining that occurs. i believe that most trips to the toilet are a result of discomfort from the Hemorrhoids.

so i got to the bathroom and sit on the toilet a ridiculous amount of times throughout the day. the majority of the time, no bowel movement. but if i have taken my miralax dose for the day and im on track with it, i will poop several times throughout the day. most times it will be med-small bowel movements. i think the key is to poop as much as i ate the day before.

a lot of times ill poop from walking around or just moving around. which sucks because i have to wear a diaper all day because of this.

there is one last thing i need to do in order to actually have a bowel movement. simply sitting on the toilet and pushing still does not do it for me. what i actually do is i sit on the toilet and i lift myself from the seat maybe 6 inches off the seat while still pushing. when the poop is ready to actually come out, this motion usually helps push it out. otherwise, its rare that anything comes out.

this hovering over the toilet seat, and the miralax are the breakthroughs i had to having enough bowel movements throughout the day so that i dont get backed up. its a horrible experience. i really hope things go back to normal.

on a side note, i went to a doctor and i explained my process. i asked him if there were any negative side effects with taking a laxative long term. he said we needed to try and get me off the laxative. he told me my intestines could get lazy and form a dependancy on the laxative.

he prescribed colace. now i had tried colace while i was in the hospital. never really had a chance to give it a proper try. so i took three colace capsules a day for three days and did not take the miralax. this did not work for me. i gave it three days to work. while im sure the colace did what its supposed to do to soften my stool, it did not actually help me poop. looks like soft/hard stool is not the issue for me. so i went back to miralax.

dont know if this will be helpful to anyone, but i think the trick for me is miralax daily, and hovering over my toilet seat to get results.

5

Hi Joe, thought I’d add my experience and solution. My docs went with the train your bowels with digital stimulation. This mean that besides taking mirallex every eve and 2 tablets of senna twice a day, the nurse would use glove, lubricant and massage the inner walls of the rectum as high as can be reached for 30 sec x3 once or twice a day. After waiting for 10 to 15 min, any stool that moved down was removed digitally as well. This was excruciatingly painful as I also have internal and external hemorrhoids. After insisting on using dibucaine as well as lubricant, I volunteered to do my own digital stimulation. This actually worked to an extent. The response to the stimulation could take up to 12 hrs, but after a few days, results happened after 4 hrs. I was discharged 1/17/19 home. At home I stopped taking mirallax, as it seemed to make my bowels very loose. I then eventually stopped taking the senna tablets. My morning schedule includes using a disposable glove with lubricant and dibucaine and checking for any stool, which I remove manually, I can usually tell when I have something in my rectum and will use glove, etc. to remove it when using the bathroom. I have had 3 or 4 totally natural bowel movements, in the last month, so I’m hoping I can eventually get to a more normal life, Until then, I always carry some gloves and lube in my purse, if needed. I’ve been very fortunate in some ways, because I’ve always been a bit constipated with an extended schedule. According to research I’ve done, there are two separate nerve bundles involved in bowel movements, the higher bundle in the rectum is the one neurologists check as soon as they suspect cauda equina. That bundle is part of the red flag that if missing means, you’re on the 24 to 48 hr clock to get into surgery and relieve the spinal nerve compression. Hope this helps, as your message helped me.

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hi Joe, im sorry im coming very late to the party but just read this i also use a glove and ky jelly to empty my bowels i take movicol which softens the bowels and then spend a good 20/30 mins trying to clear myself out i was then put on the peristeen system, its like a mini irrigation system and works quite well. i am having a lot of issues lately though and have been pooping on myself during sex which is so embarassing my partner is very understanding but as you can imagine its soul destroying. I also take 3 senna tabs every night. I hope you are now doing better xx