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Musings from a neurogenic bowel

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  • Musings from a neurogenic bowel

    Musings from a neurogenic bowel

    Saw a gastroenterologist a couple years ago. He got me taking miralax 3 times a day. It worked but I felt like a cake icing funnel bag that leaked. I started using panty liners inside my titie whities. My poo came out about 1/4 inch thick streams. It was also messy. He said my problem was that I was an addict. How could he not know about neurogenic bowel. He never mentioned it. I continued taking miralax 3x/day till about 6 months ago and started having problems with not pooping even though I would take miralax at least once a day, using a laxative. I was 'making' on my own (with miralax) for maybe a week, I would take some oral senna (5 capsules senna) so I?m going back on the 3 miralax a day.

    I cant seem to sufficiently do the stimulation of the sphincter. I tried real hard today. I could feel the part that was constricted but I was unable to stimulate it. I tried sticking a tube up there. It didn't work and had a little blood on it. Wont try that again. Ordered a Maddak Bathroom Anus Stimulator. Also along with the finger/tube I used 2 generic bisacodyl and didn't make. I?m broken harted. Also ordered some official magic bullets. Give them a try.

    I?m afraid to eat. Have eaten 3 strawberries and one piece of millet bread.

    My enema bag back flowed the other day. Guess I?ll get a new one. Got poo in it. I used to do enemas, Did a 1.5 qt, enema a couple weeks ago and almost nothing came out.

    So I don?t just have opioid-induced constipation (OIC) . I also got a neurogenic bowel?

    I'm hungry and sick and tired of taking laxatives.

    Getting a cortisone shot on my neck in 3 days for nerve pain in my arms. Maybe this will help relax me .


    https://www.bladderandbowel.org/wp-c...t-Jan-2016.pdf
    Last edited by da lurker; 04-28-2019, 04:58 PM. Reason: gas
    tom


    Welcome to The Flat Earth Society

  • #2
    do you have a spinal cord injury?

    If so it's confusing to me why your gastroenterologist wouldn't know this. Obviously opioids will make things ten times worse. Which doctor is managing the constipation? It sounds like you're falling through the cracks.

    In a generally healthy person the doctor who is prescribing the opioids would ideally also be treating the constipation they cause. It's pretty irresponsible to not start stool softeners or laxatives or something on a patient if you're starting opioids, because opioids are an absolute 100% guarantee of constipation. But if you have SCI maybe that scared off the pain doc from managing the bowel. My guess is the GI doc isn't prescribing the opioids, and it sounds like he's doing a piss poor job of treating it. Remind him that it's kind of his job to make sure you poop at least consistently enough that you're not afraid to eat.

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    • #3
      Once you start using Enemas and laxatives it is hard to go back to trying Suppositories or Enemeez. However you should empty the lower part of your colon and use something orally. How much Senna? You may need to use Enemeez- try website to see if they will send you free samples. www.enemeez.com. can use up to 3 if needed. And continue Miralax and slowly wean off if possible. Enemas (bag)should be saved as "rescue" if you use all the time the bowel will be dependent on it.

      CWO

      CWO
      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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      • #4
        Enemeez worked for meez! You can also try "black magic". Equal parts of bran, applesauce, prune juice. I think equal oarts. May be more prune juice

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        • #5
          I requested the free samples of Enemeez. Thanks
          tom


          Welcome to The Flat Earth Society

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          • #6
            thanks all

            I,m a C5,6,7 incomplete walker

            Before I knew about neurogenic bowels, in the hopes of pooping I quit taking fentanyl, 6 months ago. Just use the omnipresent norco 10/325. Im not consistent with any bowel plan. I eat very well.. luv bokchoy, potatoes, green onions, quinoa, squash, chicken soup with lots of broth. Untill 6 months ago I used Miralax 2/3 times a day. I would take 5 senna tabs whenever I stopped up, every week or two, but I would have bowel movements on my own. What a weird, exciting feeling to be watching tv and get the urge to go, and then actually go.

            But something happened and this last couple months it seems that my sphincter closed up. It was always small. My miralaxed turds were ? inch in diameter, sometimes. But they were there. I did slack off from the miralax. The pain in my neck/arms has increased, had to up my neurontin

            I have spent (most) of my life being a health food nut. Never ate white bread.

            I bought a digital stimulator (Maddak Bathroom Anus Stimulator) as I am unable to do it with my finger... I tried countless times. Now I need to figure out how to use it.

            Last couple months generic bisocodo suppositories wouldn't work. Got some official magic bullets to try tomorrow. Going to keep up with 3x miralax.

            I very, very much didn?t/don?t want to become dependent on stimulant laxatives.

            This has been one long crazy ride

            Gives new meaning to the goodbye cruel world emoticon, which i can't find.
            tom


            Welcome to The Flat Earth Society

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            • #7
              Sounds like you may have burned out the rectum with too many laxatives and Miralax.

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              • #8
                no .. it's Neurogenic Bowel

                https://www.google.com/search?client...rogenic+bowel+
                tom


                Welcome to The Flat Earth Society

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                • #9
                  Don't alot of people use bisacodyl suppositorys daily?
                  tom


                  Welcome to The Flat Earth Society

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                  • #10
                    Yeah, many of us do use the suppositories daily but don't add all the Senna and Miralx you've taken along with them. Many of us went thru what you are now. All the laxatives, stool softeners etc. takes it toll with many of us eventually needing to go the colostomy route. Your using Miralax and Senna in the quantities you did plus the pain meds sounds like what I described.

                    you may not have wanted to be dependent on the need but taking Miralax etc. three times a day is doing exactly that. When was the last time you saw a Gastro Internist with knowledge of N. Bowel?
                    Last edited by Patrick Madsen; 05-03-2019, 06:34 PM.

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                    • #11
                      I want to thank everyone who commented. This is very depressing. Getting tired of it. The constant pain, the medications making me constipated, physically and mentally. Person has to poop.
                      tom


                      Welcome to The Flat Earth Society

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                      • #12
                        I'm curious, whats the problem with miralax? I thought it was rather benign. The GI i was seeing thought it was good.
                        tom


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                        • #13
                          Originally posted by da lurker View Post
                          I'm curious, whats the problem with miralax? I thought it was rather benign. The GI i was seeing thought it was good.
                          There is nothing wrong with taking Miralax. The problem I think Patrick Madsen was referring to was the amount of both Miralax and Senna you were taking daily. The package directions on Miralax suggest taking 17 grams in a glass of water once per day. Like wise the Senna instruction indicate taking it once a day. Taking both is doubling up on laxatives. Taking both multiple times a day, is just too harsh on you gastro tract. Yours I think was a case of if a little is good, more is better, which when it come to laxative medication isn't necessarily the case.

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                          • #14
                            Originally posted by Patrick Madsen View Post
                            Sounds like you may have burned out the rectum with too many laxatives and Miralax.
                            That don,t sound good
                            tom


                            Welcome to The Flat Earth Society

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                            • #15
                              My bowel program needs work.

                              I understand what y'all are saying. I never thought of miralax as a laxative but a stool softener. GI doctor told me to take it 3xday over a year ago. Every time I would slack off miralax I would get stopped up. I need to do a controlled tapering down.

                              I recently bought some real magic bullets.(not generic) No more senna.

                              This is hard talking about. Must be my potty training.

                              I,ve been sci 21 years. Always had hard dry stools but they came out. Only last 2 or 3 years had I needed laxatives. Increased my pain meds because of more injuries. I've recently cut back on pain meds to pre constipation days, but have added nurontin to the mix, and now I find out it causes constipation.
                              tom


                              Welcome to The Flat Earth Society

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