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Thread: Loosing hope for my bowels

  1. #1

    Loosing hope for my bowels

    I know i'm not the first, and won't be the last regarding the frustration over neurogenic bowel, but i was hoping to get a suggestion or two. Ive been trying to find a solution for about a year now.

    Im an incomplete, reflexic bowel. I have about 50% sensation in my rectum as a guess. I eat a healthy diet, take 100-200g of colace a day, senna every other day, 1/4 of a cap of miralax ever other day (helps keep things formed a bit), and exercise. I have adjusted these here and there, and keep a daily log.

    My problem is that I can't have a complete bowel movement . I'll empty out say 80% after my morning coffee. Which is great in a way, as I dont have any accidents anymore. But after that its like the bowels shut down, and I have stool that gets stuck up high in the rectum (the area where a person kind of contracts to void the bowel).This could happen to a normal person who is constipated, but is worse for me because of nerve pain in that area. This stool that gets stuck usually doesn't go back up like it should after my bowel program is over so it stays there all day and feels like a tennis ball is stuck up my butt all day. It also causes a lot ofgas to the point of me needing gas ex regularly. That part of my rectum seems very sensitive due to nerve damage. I guess central pain.

    It has gotten so bad the past few months that I can't even sit on a donut cushion for very long. I have had to lay on my side for most of the day. Nothing seems to want to coax that last bit of stool out. If I use an enema or enemeez, or MB, I push and push and maybe get a few small pieces out, but it often just makes the problem worse. Enemas are also hard to get past the jammed stool, so they leek out easy. Not to mention they are extremely uncomfortable, and seem to cause AD. I have the same problem with half of an MB. However, when I use either, I also get this extreme urge to go but cant seem to relieve it. I push (valsalva) and when nothing comes out its a horrible feeling like holding back loose stool. Digistim does nothing but flare up my hemoroids (as do enemas and MB) and just adds to the misery. I feel like I could only solve this problem with multiple enemas, slowly chipping away at that last 20%, but I don't think thats an option.

    So, i've pretty much lived this year without using any kind of the invasive tools that everyone uses. They dont seem to help, and just cause more pain. Back when I had little feeling I had no problem using 2 fleet enemas in a row minus the hemroids. The only thing I havnt tried is a numbing agent or enemeez plus, but since the problem is high in the rectum im not sure if this will help. I don't know. I feel like i'm out of options. Its unfortunate that the first part of my bowel movement is so easy and the last part is impossible. I posted something about this in the pain section, but I believe that my Bm's have a lot to due with the discomfort.

    Sorry for the long post,
    Jason
    Last edited by seawalker; 01-07-2011 at 11:33 PM.
    C3/4 Incomplete. Ependymoma tumor, syrinx from C to T.

  2. #2
    i think i know what you mean.
    i had this feeling of non evacuation of stool for over 9 years, the last 2 or 3 it turnedme into a hermit, mt narc increased which made the problem much, much worse. if you have good insurance you may try and find a plce that uses a PIE machine. That should be able to break it up. i was goingcrazy, i actually bought a millawakee optic scope, the kind you look inside walls with. it looked like the same thing they look up your butt with, and it was waterproof. I was sure there was a rock up there. Luckily all the condoms i had around gve too blurry of a picture, or i would have gone a looking for gold.
    i reallly was losing it.
    it took a bunch of pie visits at 1x a week to make my belly lie flat.
    i also started going as gluten free as p[ossible, and no more wheat. all the docs all these years , saying eat more fiber , that was the worse mistake for me.i was already eating more than 2 x the daily dose. vegetables are fine. i stay away from milk and dairy, no cheese, cheese will bind me up like a glue ball .
    Alos learn how to massage your colon, it can make a huge difference, start clockwise at the appendix, the beginning and follow your colon up across and down, i do this when lieing on your left side and have also used this sitting on toilet and the output can be amazing. i massage this one spot , i guess where the traverse changes to the descending colon, and stuff just explodes. When doing the PIE to me, the Technion would massage my abdomen and she would see 3 foot pieces coming out. just squeezing along my intestines and it was like a water ballon, squeeze here, water out here, except it was poop. , You are able to break up a lot of the hard stuff. hopefully the device from coloplast will be approved in the usa soon. it is on their Internationale site ,periannal or something like that.
    it is like a PIE but with a small bag of water on the floor, as opposed-to 5 gallons of water and computerized stuff.
    you can call jim at pie and see if any one offers the treatment in your area, i was paying 275 a hour visit. luckily my insurance will reimburse me. there is also anotherr person on here that can help you fabricate a pie like device, i tried it, but i was still stuck on the fiber and wheat mindset. one time i did get some great results. didn't check your level of injury, but if you cant massage your self, try and find help to do it
    but you would still need to go the gluten free and dairry free/no soy either.
    coconut or almond milk, the gluten is a part of wheat that make the nice brerad stick together, it also makes your stool stick too much together and cause rocks in your colon. it also causes the stool to stick to colon walls, so you will never evacuate.
    there are a lot of gluten free foods and dairy free foods and ice cream /dessert. no fibercon, it will work like cheese.
    cauda equina

  3. #3
    I agree with the diet advice but you might want to try the "Enemeez Plus" once a week or so, It has benzocaine and empties fast.I think this will help keep you regular and help with your pain nd frustration. you can get free samples on the website then if you like get your doctor to prescribe.
    CWO

  4. #4
    Mike Thanks so much for detailed reply. Man that is so funny about you getting buying that scope. Ive seen it at home depot, what a cool gadget. Your not crazy, because I have to admit, I have been just as desperate to see whats in there, although i'm not as brave as you to perform my own "rectumoscopy".

    I will consider trying the gluten free food My reservations about that are the fact that my stool is already soft and somewhat formed. I don't have the hard stools that you get with narcotics, and thats why I avoid them if I can. I try to use xanax instead. Are you saying that Gluten free food will more easily move through the colon more so than soft stool alone? I have tried the messaging a little but not much luck. How long do you do it for?

    CWO, thank you. I have to admit im scared of trying the enemeez plus because of the harsh experience with the standard enemeez. But I got to try I guess, sounds like the most logical idea.
    C3/4 Incomplete. Ependymoma tumor, syrinx from C to T.

  5. #5
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    Seawalker, what kind of "harsh" experience did you have with the Enemeez? My son has had really good luck with them.

  6. #6
    Mombo, Enemeeze enemas seem like a really nice product, although way overpriced, I think its my body thats the problem. The normal discomfort that one gets from an enema is really intensified for me even after I evacuate. I also get Sweats, nausea, shaking, faintness, AD. I wish they did work.
    C3/4 Incomplete. Ependymoma tumor, syrinx from C to T.

  7. #7
    Moderator jody's Avatar
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    I have issues simular to yours. It can take several years for a bowel program to be consistant.
    Im wondering if there is a way to bring your knee's up toward your belly almost like squatting. I have a little step stool to put my feet up on to do this. it straitens out the end of the digestive track and points it strait down, so gravity does its thing. we are meant to squat to shit. and when you raise the knees tward your belly, well I have found it helpfull in getting that stuck chunk that wont come down. also it allows for a little sort of push which is impossible otherwise.

  8. #8
    Moderator jody's Avatar
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    I get Ad with enema's too. not worth it, and I will leak poo goo too. ew.

  9. #9
    Jody, that is great advise, thanks for commenting. I have read about that--thats they way nature has intended it. I don't know why I have never tried, I think just because it feels weird to go like that, but I will tomorrow morning. Enemas suck, all the nasty leaking and stuff. Do you use anything at all?
    C3/4 Incomplete. Ependymoma tumor, syrinx from C to T.

  10. #10
    Senior Member Van Quad's Avatar
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    If you are going to try gluten free, you should also go dairy free. Except for yogurt. I consider my homemade culture rich yogurt as part of my bowel routine. Your gut is like a high speed compost bin. You need lots of good bacteria keep the mixture live and breaking down tissue. Try that Activia yogurt for a couple of weeks and see if that helps.

    Quote Originally Posted by seawalker View Post
    Mike Thanks so much for detailed reply. Man that is so funny about you getting buying that scope. Ive seen it at home depot, what a cool gadget. Your not crazy, because I have to admit, I have been just as desperate to see whats in there, although i'm not as brave as you to perform my own "rectumoscopy".

    I will consider trying the gluten free food My reservations about that are the fact that my stool is already soft and somewhat formed. I don't have the hard stools that you get with narcotics, and thats why I avoid them if I can. I try to use xanax instead. Are you saying that Gluten free food will more easily move through the colon more so than soft stool alone? I have tried the messaging a little but not much luck. How long do you do it for?

    CWO, thank you. I have to admit im scared of trying the enemeez plus because of the harsh experience with the standard enemeez. But I got to try I guess, sounds like the most logical idea.

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