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Loosing hope for my bowels

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    #16
    Originally posted by stephen212 View Post
    Mike,
    You got your very own PIE? Did your insurance cover this and all the supplies?
    hi steven

    yes , pie and supplies , i was goung to spring street 1x a week for treatment, $275 a pop. i really needed2x at least. but going 1x a week from march till about 4 weeks ago made a huge difference, plus i learned about glutens and massage of intestines to break up the hard stuff.
    i have workers comp.
    i was supposed to go to a wc hearing this am for a mace approval, but buses arent running, so let them reshedule. i wnt the mace , but the approval will be good to have if i need it 6 months from now.
    i spoke to the PIE rep and 3x a week is the recommended schedule..
    it is pretty hard to set up and do even for someone who is basically AB function
    i need to just get in a routine and figure certain things out.
    i found a bed in a bag , plastic side up ,is a good thing to put on your bed.
    still need to get mirrors or web cam in right position since you need to be on left, but need to montor the output , and water suplly which is on right side.
    and you need to be relaxed . at the spring strret place they wereunning 10 to 15 gallons through me, and i was still pooping within 24hours,sometimes 12 hours, , and that was after 30 times plus.
    but i am a lot better.
    cauda equina

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      #17
      Welp, as it turns out, I have an impaction. I'm I'm the hospital waitong to see GI on monday for a clean out. My rectal pain got so bad I went to the ER. They said that since I have been going everday regularly, they thought the pain must be neuropathic. So they did a full spine mri to look for changes. Nothing. Did an abdomen xray and found above average amount of stool in the decending colon. I have been doing enemas and laxitive for days with no results. I must say, I m shocked. I don't lnow how I could get an impaction like this while still having a daily bm. I have no idea how I'm going to prevent this from happenong again.
      C3/4 Incomplete. Ependymoma tumor, syrinx from C to T.

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        #18
        Colostomy

        I’ve had a similar type of issue. Not getting rid of the final 10%. Some days are fine others are not. Have you considered a colostomy? I’m just starting to think about it. Reading about it here, it looks list most people think it a big plus in life.
        Brought to you by: atrophied&twitch

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          #19
          Jason,
          I can relate to your issue. I'm currently using the Peristeen irrigation system with I call my enema on steroids. As it uses pressure, you will fill your desending colon with water, then when the rectal catheter is then removed, you pass the water and stool, which leaves me stool free for ~3-4 days.
          God's blessings to you,

          Steve

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            #20
            Here's my recipe- no gluten or dairy. (Except whey isolate) Lots of fruit, rice, vegetables, probiotics, Green Vibrance, Digest Gold. No stool softener of any kind. Magic bullet only in the morning along with a cup of coffee made with almond milk or green tea. I also take 25 mg of 4ap each morning because I swear it helps me "push.' Also it is important to make sure your feet are high enough in shower chair or feet are firmly planted on something to bear down. Good luck. PS, I do a bowel program every day.
            And the truth shall set you free.

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              #21
              Originally posted by NoDecafPlz View Post
              Here's my recipe- no gluten or dairy. (Except whey isolate) Lots of fruit, rice, vegetables, probiotics, Green Vibrance, Digest Gold. No stool softener of any kind. Magic bullet only in the morning along with a cup of coffee made with almond milk or green tea. I also take 25 mg of 4ap each morning because I swear it helps me "push.' Also it is important to make sure your feet are high enough in shower chair or feet are firmly planted on something to bear down. Good luck. PS, I do a bowel program every day.

              I once did an everyday program. Takes a lot of time.
              stephen@bike-on.com

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                #22
                Just an update. The home made irrigations system worked fine after a learning curve. We ordered the peristeen and he is figuring it out. Having trouble with the balloon. They say to inflate it too much. The balloon bursts. So much less air used. He has gone from 3 to 5 bowel accidents a week to 1 a month for the last 3 months. Very excited!!!!!

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                  #23
                  I recently bought some enema supplies to use in place of the Peristeen. I like the Peristeen, but the components are not particularly well made. I've had 2 water reservoir bags: the first started leaking (slightly) almost right away and the second developed a "blister" and ruptured. The catheters are very expensive; they can be re-used but only so many times before the balloon bursts. The connectors don't connect very sercurely; the threading strips quickly.

                  I bought a 2-quart, closed top enema bag (constructed like a garden variety urinary leg bag), a rubber "Higginson" pump, and tubing which connects to a 30" long silicone colon tube (obviously you don't need to insert the entire length of the tubing). For me, this accomplishes pretty much the same thing as the Peristeen but for much less money and with components that will last a very long time.

                  The goal for me is to get water into my colon without it all leaking out before it triggers a peristaltic response. The colon tube is 32 fr. which is wide enough to keep most of the water in, especially when inserted about 20" or so. I fill my bowel with the entire 2 quarts, wait a minute or two and then do digital stim to dilate my bowel. The enema kit is not as sophisticated as the Peristeen but it accomplishes the identical result. Same concept, slightly different delivery system. Water enters the bowel and the body (and you) takes over from there.
                  stephen@bike-on.com

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                    #24
                    Originally posted by stephen212 View Post
                    I bought a 2-quart, closed top enema bag (constructed like a garden variety urinary leg bag), a rubber "Higginson" pump, and tubing which connects to a 30" long silicone colon tube (obviously you don't need to insert the entire length of the tubing). For me, this accomplishes pretty much the same thing as the Peristeen but for much less money and with components that will last a very long time.
                    Wow, googling " rubber Higginson pump" yielded some.. interesting results. Man there are some weird people out there. On the other hand its good to know that I can get enema supplies and that Latex Twin Hoods with Integrated Breathing Tunnel I have been looking for.

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                      #25
                      Jason
                      Our SCI injuries are not the same (T12 for me) but I sometimes have the same problem of incomplete BM. It seems most comes out in 5 minutes and the little left takes 55 minutes.

                      I use KY Jelly as lubricant BUT when nothing else seems to be happening and I know it should be happening, I switch to Preparation H ointment as a lubricant. It seems to help encourage the rest to come out. It is medicine that is supposed to shrink hemmoroids; maybe it shrinks other things and relaxes the anal passages or something. It is not magic but it does seem to help me.
                      TM 2004 T12 incomplete

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                        #26
                        thats interesting. I wonder if it would help with the sandpaper up the butt feeling?

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                          #27
                          Preparation H does have a n anesthetic in it, so it might help with that feeling. So might lidocaine jelly. It would anesthetize the area.
                          CKF
                          The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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