Announcement

Collapse
No announcement yet.

Neurogenic Bowel/Colon- Thanks Spinal Lesion!

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    Neurogenic Bowel/Colon- Thanks Spinal Lesion!

    I am 30 years old and was Diagnosed in 2009, I have had Bowel troubles ever since.
    Mainly severe constipation. SEVERE!
    In the beginning it was manageble with laxatives, teas, prunes, fibers, greens- anything that would help you go.

    Then it just came to a point of the land that time forgot.
    There would be no movement for months. I would swell- but all the while loosing weight, that was the real mystery.

    Months of seeing specialist after specialist and being turned away as a lost cause or spending my life savings on tests that were inconclusive of anything wrong.
    Being told that it must be "all the pain medicine, that I take", or "I'm too over medicated, it has shut your bowels down". I was just done.

    After all of the research that one can do, I found the Interstim II Bowel Neuro Stimulator. (It is also used highly for Bladder control. )
    It is a small device that is implanted into your buttock that is attached to 2 wire leads that are also implanted into your sacral nerves.


    You go through a week long trial with a external unit that you are able to control the electronic pulses, then after the week trial you and your Dr. will decide if this is something you would like to try. If so, a very quick surgery - under anesthesia is preformed and you go home with a remote control butt, that will provide jokes for all ( at least mine does)

    I have not had any bowel Movements because technically my colon and rectum do not work since having this new battery pack I have definitely had the urge and I have not felt that in years so that is promising.
    I will give this thing 6 months and then I think I will have it removed if there is no hope.

    My other option is quite upsetting and scary, for someone my age.

    Just wanted to share.

    HaHa4484 :cool

    #2
    Have you tried Miralax? I've had great luck with it.

    Comment


      #3
      If you end up with the 'other' option, it's not the end of the world. My sis-in-law has had it since she had bowel cancer at the unbelievable age of 12. Life just goes on with it.

      Best wishes

      Poppy

      Comment


        #4
        It is so upsetting to read your story because I can relate. I also have neurogenic bowel, and I'm pretty sure I know the "upsetting and scary" option you were offered because that's what I'm being pressured to do, and I refuse.

        I have heard of the sacral nerve stimulator and hope you can continue enjoying relief from it. Unfortunately it's not an option for me.

        I noticed you are also treated in Atlanta; which neurologist do you see? Have you tried the Shepherd Center? That's supposed to be my next step, but I doubt they'll have any fix because I've already tried and failed the bowel programs available.

        Continued good luck with the SNS.

        Comment


          #5
          I don't have an MS diagnosis (yet), but I was diagnosed with neurogenic bowel last week. I've already been offered InterStim for neurogenic bladder, but I wasn't interested. I don't have incontinence, and I'd rather deal with catheters than with surgeries and InterStim side effects (I have enough weird tingling and shooting pains already, thank you very much!) but now I'm reconsidering.

          I really, really want to put InterStim off as long as I can--but after Miralax failed totally, and just made me more uncomfortable, I was recently put on Linzess, which worked. For two days. Today I'm right back where a I was with Miralax. Seems like laxatives make pull water in there. Where it sloshes around and makes me generally miserable and uncomfortable, but that's about it. I guess the next step is to add stimulant laxatives...but I don't see GI doc again for a couple weeks. And after months of going a little, a couple times a week--yes, I was in pain, but as least I wasn't my whole day in the bathroom every day.

          Just rather frustrated with the whole situation. Sorry if this doesn't quite fit here, just...yeah...this is weird.

          I'm 36. This is uncool.

          Comment


            #6
            @Snowdrift,

            One thought might be enemas until your gastro appt. My primary doc has me use those every once in a while.

            I had complete gastroparesis for a month. Now improved to slow transit time, intermittent constipation. I find it's better if I stay hydrated and do mild exercise. (hip rotations, crunches, walking, anything to use other muscles to move things around)

            Comment


              #7
              That has been the best solution so far, Pipes123.

              I feel really self-conscious and weird bringing it up with my doctor, and I don't know if I'll get over that enough to ask about it, but it's the only thing that even kind of just works, and doesn't make me feel bloated and sick and in pain all day.

              Apparently there's something called Peristeen that is similar to enemas, but a lot easier to use, and designed for regular use, for people with spinal cord injuries, spina bifida, and MS-related spinal lesions.

              I want to try that. It sounds kind of horrible--but not as horrible as constant severe constipation and pain, or as bad as "fixing" the constipation with meds that add so much bulk and water sloshing around all day, making one feel worse.

              At least with enemas and the like, one can set aside a time, just do it and get it done with. Taking pills and such, more and more, feeling worse and worse, waiting for something to maybe work...that's horrible.

              Comment


                #8
                Snowdrift and Pipes123, have you had success with enemas? How were you able to improve GI transit and pelvic outlet problems? I have tried and failed every bowel program available, so my next option is something I think I'd rather die than consider. I retained everything I swallowed or inserted from water to suppositories to OTC drugs to RX drugs until the floodgates opened. I have been so backed up that my bladder became displaced, so I couldn't void either. I managed this until I developed rectal prolapse from 6 years of this, and then everything went well and truly pear-shaped. Was supposed to be referred to a SCI institute, but now my doctors aren't sure it'll be helpful because of everything I've tried and failed and the fact that the rehab for neurogenic bowel is more limited than for other SCI sequelae.

                Basically I alternate between absent or even reverse peristalsis and uncontrollable diarrhea due to herpes colitis and SCI sequelae. What type of SCI did you suffer? Is it progressive, or did it plateau or stabilize?

                It took 6 YEARS for me to be properly diagnosed and even now, 7 1/2 years after TM, my case is still classified "idiopathic" even though the cause was/is very clear. Anyway, even when TM was diagnosed, no one considered that my bowel and bladder problems were related. More like direct consequences! It wasn't until I saw doctors 6 hours away with (at the time) new-onset rectal prolapse that they all agreed neurogenic bowel and bladder. I was treated as an IBS patient at best (and often labeled patient with a "psychogenic" disorder) before then.

                I would love to communicate with others with neurogenic bowel if the PM function can be activated. I tried to use it, but it doesn't work for me. Can someone help? Thanks.

                Comment


                  #9
                  Originally posted by tweezer View Post
                  I would love to communicate with others with neurogenic bowel if the PM function can be activated. I tried to use it, but it doesn't work for me. Can someone help? Thanks.
                  Hi tweezer,

                  Sorry, but PM is not an activated feature on this site.

                  You may add your e-mail to your profile, which may be viewed by all registered, logged in members. This is not a requirement and is only done at your own risk. You may also edit and remove it from your profile at any time.

                  To do so, look up toward the top of this screen, below the MSWorld logo. There you'll see a black bar that runs across the page. On the left, click on the blue word "forum," and a drop down menu will appear. Click on the word "forum," and another menu will appear. Then, click on the words "edit profile."
                  Kimba

                  “When you change the way you look at things, the things you look at change.” ― Max Planck

                  Comment


                    #10
                    Originally posted by haha4484 View Post
                    .......snip

                    I have not had any bowel Movements because technically my colon and rectum do not work since having this new battery pack I have definitely had the urge and I have not felt that in years so that is promising.
                    I will give this thing 6 months and then I think I will have it removed if there is no hope.

                    My other option is quite upsetting and scary, for someone my age.

                    Just wanted to share.

                    Wow, sounds kind of hi-tech. You never updated your progress with the "push butt" on device, though.
                    Can you tell us what your results have been? Any progress or?
                    Jim S.

                    Comment

                    Working...
                    X