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    Colostomy or continue manual assisted elimination?

    The title of the post may sound somewhat ghastly, but I intend to get even more detailed here in order to try to hopefully get some advice from someone whoís gone through before what Iím going though now. If you canít stand the disgusting details, please donít read the rest of this post. I donít mean to offend anyone.
    Itís been 29 years since I was diagnosed and Iíve been secondary progressive for a number of years. I suffered from severe constipation for a number of years, starting as early as 2005. I managed to cope with laxatives, Metamucil, etc., getting stronger over time. A little over a year ago the spasticity in my right leg increased tremendously, including my glutes and eventually winding its way into my rectum and I suspect my colon (I just had a colonoscopy and my gastro guys comment was ďevery thingís ok, though itís long and twistyĒ.

    Somewhere around the time that the spasticity increased, my muscle strength in my pelvic muscles had gotten so weak that I was no longer able to defecate. I began to need to manually extract feces from my anus (not a pretty picture) in order to have a bowel movement. I saw a gastroenterologist about this and after many months (6 or more) and a series of tests (ever heard of MRI Defecography? Ė yup, an MRI of you pooping a gel they put in you) he came to the conclusion that my pelvic muscles were weak and sent me to a PPT (Pelvic Physical Therapist). The PT sessions did strengthen the muscles but unfortunately, didnít do enough to make a difference.

    Hopefully thatís enough background information for the question thatís the reason for my post. Iím contemplating a Colostomy to get out of this current situation which for all intents and purposes is kind of the same, but takes 45 minutes to complete and is probably messier. Is there anyone out there who has been in the same situation and has done this? If so, are you glad or do you regret it and why. Iíd greatly appreciate your input.
    On a side note, Iím also pursuing a Baclofen Pump, which possibly might reduce or eliminate the spasticity in the rectum and colon. That may be wishful thinking however.

    #2
    Hi Rich ~

    I'm sorry that you have to deal with this difficult situation, concerning your bowel function.

    Originally posted by Rich Marcell View Post
    On a side note, Iím also pursuing a Baclofen Pump, which possibly might reduce or eliminate the spasticity in the rectum and colon. That may be wishful thinking however.
    Could you talk with the Baclofen Pump rep about whether improvement in rectum and colon function might be a possibility?

    That would be terrific if the pump is indeed capable of helping your bowel issues.

    Try to remain hopeful, Rich.

    Take Care
    PPMS for 22 years (dx 1998)
    ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

    Comment


      #3
      Is it pelvic muscle weakness, loss of nerve signal to the defecation muscles or a combo? Iīd be willing to try yoga and pranayama (yogic breathing exercises) before taking a huge leap to the colostomy. Yoga twist poses get things moving off the pot, the squatty potty makes a huge difference with your knees higher and twisting to the right and then to the left while on the pot helps move it along the highway to heaven. Massaging your own belly in a clockwise direction as you look towards your own belly button helps. You can try massaging your ileocecal valve:

      How to Locate and Massage the Valve?

      In order to massage the valve, you can follow these steps. Keep in mind that placement may vary from person to person.

      Place your right thumb on your hip bone and your left thumb on your navel.
      The valve is located about halfway between the hip bone and belly button so imagine a line connecting these two points and find the middle.
      Take all of your fingers and place them about 3 inches below that middle point. You should be close to the ileocecal valve.
      Press in slowly but deeply and firmly. Search for the little tender hardened area and this is your valve. Some people find it easier while laying down.
      After you find it, begin to massage it in a circular motion with medium pressure for 10-15 seconds.
      Then come about 3-4 inches to the left of the IC valve and make a fist and gently push from left to right to move contents through the small intestine and into the large intestine.
      After the massage, form your hand into a fist and stimulate the reflex are located in the right front upper arm (close to your armpit) for 10 seconds. View the chart below for location visuals (4).

      Silke Granier at Holos University wrote a doctorate thesis on abdominal massage and constipation- google that to find the pdf. The thesis includes information on people with neurological diagnoses.

      Comment


        #4
        Thanks for the response

        Originally posted by Temagami View Post
        Is it pelvic muscle weakness, loss of nerve signal to the defecation muscles or a combo? Iīd be willing to try yoga and pranayama (yogic breathing exercises) before taking a huge leap to the colostomy. Yoga twist poses get things moving off the pot, the squatty potty makes a huge difference with your knees higher and twisting to the right and then to the left while on the pot helps move it along the highway to heaven. Massaging your own belly in a clockwise direction as you look towards your own belly button helps. You can try massaging your ileocecal valve:

        How to Locate and Massage the Valve?

        In order to massage the valve, you can follow these steps. Keep in mind that placement may vary from person to person.

        Place your right thumb on your hip bone and your left thumb on your navel.
        The valve is located about halfway between the hip bone and belly button so imagine a line connecting these two points and find the middle.
        Take all of your fingers and place them about 3 inches below that middle point. You should be close to the ileocecal valve.
        Press in slowly but deeply and firmly. Search for the little tender hardened area and this is your valve. Some people find it easier while laying down.
        After you find it, begin to massage it in a circular motion with medium pressure for 10-15 seconds.
        Then come about 3-4 inches to the left of the IC valve and make a fist and gently push from left to right to move contents through the small intestine and into the large intestine.
        After the massage, form your hand into a fist and stimulate the reflex are located in the right front upper arm (close to your armpit) for 10 seconds. View the chart below for location visuals (4).

        Silke Granier at Holos University wrote a doctorate thesis on abdominal massage and constipation- google that to find the pdf. The thesis includes information on people with neurological diagnoses.
        Definitely weak pelvic muscles, I'm not sure about the nerve signal. I tried a squatty potty and didn't find that it helped me any. I have tried colon massage, but not for the 15 minutes a day that was used in the Greiner study (Greiner was the actual spelling of thesis author, not Granier, that I discovered when trying to google). But thank you for that reference. I found the table of contents interesting enough I think I'm actually going to read the paper (or at least skim through its 200+ pages).
        The only yoga I can do is chair yoga. I'm fairly mobility limited. Use a walker for short distances. Power wheelchair or scooter for anything over a few hundred feet.

        Comment


          #5
          Apologies for typo- just part of the MS package.
          You can do quite a bit of twisting with chair yoga and the chair even helps get into a deeper twist.
          I wonder if itīs a chicken and the egg scenario and that the added sitting time weakened the muscles.
          The breathing exercises will tone the core muscles and some of the exercises incorporate the legs and arms- seated or not.

          Comment


            #6
            Baclofen Pump & Colostomy

            I have had both for a number of years now. In my Baclofen pump I have switched to Prialt which I have been on for about 3 years now. Not only is it for pain but it also works for the spasms that I get causing urgency. What helps getting my bowel working is Sorbitol, one tablespoon seems to work for me. Less and nothing works and too much causes diarrhea. You will need to find out what works for you.
            Rich

            Comment


              #7
              Prialt

              Rich,
              I have been on Prialt for about 5 years now. I was able to remove Baclofen completely from my pump. I go to the Stanford Pain Clinic for my Prialt treatment. All of my other medications are handled by the VA. I was in quite a bit of pain so at first I was on Morphine in the Baclofen pump. I have broken tailbone and what do I do all day long is sit in my chair. I had a major exacerbation in 2000 which put me in my power hair full time. I also take Sorbitol every other day to get my bowel moving.
              Rich

              Originally posted by richjh101 View Post
              I have had both for a number of years now. In my Baclofen pump I have switched to Prialt which I have been on for about 3 years now. Not only is it for pain but it also works for the spasms that I get causing urgency. What helps getting my bowel working is Sorbitol, one tablespoon seems to work for me. Less and nothing works and too much causes diarrhea. You will need to find out what works for you.
              Rich

              Comment


                #8
                Originally posted by Rich Marcell View Post
                The title of the post may sound somewhat ghastly, but I intend to get even more detailed here in order to try to hopefully get some advice from someone whoís gone through before what Iím going though now. If you canít stand the disgusting details, please donít read the rest of this post. I donít mean to offend anyone.
                Itís been 29 years since I was diagnosed and Iíve been secondary progressive for a number of years. I suffered from severe constipation for a number of years, starting as early as 2005. I managed to cope with laxatives, Metamucil, etc., getting stronger over time. A little over a year ago the spasticity in my right leg increased tremendously, including my glutes and eventually winding its way into my rectum and I suspect my colon (I just had a colonoscopy and my gastro guys comment was ďevery thingís ok, though itís long and twistyĒ.

                Somewhere around the time that the spasticity increased, my muscle strength in my pelvic muscles had gotten so weak that I was no longer able to defecate. I began to need to manually extract feces from my anus (not a pretty picture) in order to have a bowel movement. I saw a gastroenterologist about this and after many months (6 or more) and a series of tests (ever heard of MRI Defecography? Ė yup, an MRI of you pooping a gel they put in you) he came to the conclusion that my pelvic muscles were weak and sent me to a PPT (Pelvic Physical Therapist). The PT sessions did strengthen the muscles but unfortunately, didnít do enough to make a difference.

                Hopefully thatís enough background information for the question thatís the reason for my post. Iím contemplating a Colostomy to get out of this current situation which for all intents and purposes is kind of the same, but takes 45 minutes to complete and is probably messier. Is there anyone out there who has been in the same situation and has done this? If so, are you glad or do you regret it and why. Iíd greatly appreciate your input.
                On a side note, Iím also pursuing a Baclofen Pump, which possibly might reduce or eliminate the spasticity in the rectum and colon. That may be wishful thinking however.
                Since this thread's been going on awhile, I imagine you've made your decision, but just a few things I've learned if somebody new is still looking for information on the subject.

                I've learned a lot about the pelvic floor, muscles of the pelvic floor, and the nerves that innervate them. So I'll chime in this grandma's info to the already wonderful info you've already mentioned.

                I've been diagnosed about 20 years and about 4 years after I was diagnosed (I would have been 52), my pelvic floor became extremely week, and POP started, literally (pelvic organ prolapse.) Any woman can have this happen, but MS does predispose one to it. I saw a urogynecologist, who was also a prof at the local medical college, and was a great teacher for me, to explain what and why things were happening.

                Basically, just like MS can target any muscle and deny the signals from getting through, same with the pelvic floor. This includes the muscles we use to urinate, and defecate.

                In a woman, the muscle that supports the pelvic floor can lose strength. In the case of a woman, this can cause uterine prolapse, cycstocele...bladder prolapse, rectocele...prolapse in your rectum (men can also have this, but men usually don't have this condition), and there are other prolapses that can occur after they treat the original prolapse. Point being the MS weakens the muscles of the pelvic floor till they're too weak to do their job.

                So move back to the rectum, same problem there, the rectal muscles are just too weak to push the bowel movement out, even though the intestines have managed to get it to the "door", the "door" won't open because it's spastic, and the muscles that would normally open "the door" are too weak to make it open, thus the need for manual removal. Another interesting thing about the anal and rectal sphincters is they seem to spasm and create another reason why things have a hard time coming out of the rectum and anal sphincter. There's no strength, in your muscles to keep the anal sphincter open long enough to complete an entire bowel movement.

                As far as the baclofen pump helping with this condition with the spastic anal and rectal sphincter, it did not help me. Don't get me wrong, I think the baclofen pump was the best thing I've ever done in my MS journey. It gave me my walking back, and I would still have me walking if I hadn't been hit with neuromuscular scoliosis (thanks to our MS "friend"), so because of my sideways bend, it's just too dangerous, and painful to walk too far like that, so I too use a power chair around the house.

                So my baclofen pump completely resolves my spastic legs (they still have to "pump me up" to a higher dose of baclofen because even at this point, they still continue to be more spastic at times, but with none of the tune ups, have I lost the sphincter spasticity (I'm at about 550mcgs) and probably 3 or 4 times a year I'll have it upped about 5%. The deal with my physiatrist is that
                if I ever feel too weak after an adjustment, I can always go back in and have it turned back down...I love that about the pump.

                I've thought of the colostomy alternative before, but I'm too far into the game to change anything
                now. Besides the risk of infections (I've had two bouts of hospital acquired MRSA after pump surgeries), the thought of having to change another routine gives me pause. We MSers have to keep track of so many different body parts and their functioning, or not functioning, I'll live the life I'm trapped in till change causes my new normal... and that's what keeps me away from another surgery and keep using my "plan" I use now. I use a combination of Miralax and Calm Magnesium powder, in differing doses, depending on how things are going or not going. I might give the Sorbitol a go.

                If you've already made your decision, I hope you are happy with your new "system." Well I've spewed all of my knowledge about MS and the nether regions except one thing. The pudendal nerve is what innervates the entire pelvic floor and if you have pain in that area, they can do a pudendal block (just like an epidural shot in another vertebrae) and can help lessen any pain you have in the area. My pain doc gives just local lidocaine shots in the area where we believe the pain is originating...lots of pushing on the muscles near your spinal column, in this case in the muscles associated with the sacrum. Then if that seems to be effective, we schedule the epidural shot and they use fluoroscopy to visualize the epidural space and shoot in cortisone. Hopefully it gets to the inflamed nerve and pain relief is achieved.

                Comment

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