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Question for quadriplegics with colostomy bag

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    Question for quadriplegics with colostomy bag

    I’m a 52-year-old male C5/6 quadriplegic 17 years post injury. I’ve always been pretty physically active but in the last year I’ve really slow down with the pandemic. I’ve also had very slow moving bowels for the last several years. I often have a lot of gas and bloating both during the bowel program and after usually accompanied with abdominal pain

    Often my routine takes 2 hours plus. Usually I drink one dose of MiraLAX and take 2 senna before my program recently had also tried lactulose and have done magnesium citrate on multiple occasions when I really need to get cleaned out. I’ve also tried Peristeen for a while but I have had limited success

    So my doctor is strongly suggesting that I get a colostomy which I am warming up to. I’d like to ask other quadriplegics that have a colostomy fo 5 years or less to answer these questions but I have:

    1. Did you have a problem with gas, bloating and abdominal pain before the surgery? If so did the surgery resolve your symptoms?

    2. How many times a day do you need to empty the bag? Can you do it yourself or need assistance?

    3. How do you release any gas buildup?

    4 What is sex and intimacy like with a colostomy?

    5. What issues or concerns do you have with your colostomy?

    6. Do you feel that the colostomy has overall improved quality of life?

    7. Did you have any body image or self-esteem issues with getting the colostomy? If so how did you deal with them?

    Thanks I look forward to hearing from you all!

    #2
    Gas bloating caused cramping for me pre colostomy. Now I usually just pass the gas spontaneously instead of my sphincter holding it in. I change bags myself using the convatec esteem adhesive 2 piece system. Usually takes me about five or 10 minutes. Best choice I ever made so far. How can I have any body image issues when I’ve got this quad gut and I’m stuck in a chair. My arms are the size of a 13 year olds 😂. I would have to say there is physically nothing appealing to being a quadriplegic.
    there’s only one thing I do the same pre-and post colostomy. I take milk of magnesia. Pre-colostomy I would drink a couple tablespoons every night before bed. Now I take one Phillips magnesium tablet every morning with my coffee.

    Comment


      #3
      Originally posted by Rebiggs View Post
      1. Did you have a problem with gas, bloating and abdominal pain before the surgery? If so did the surgery resolve your symptoms?
      It may or may not help. A lot depends on where the colostomy is done and if that is before or after your poorly motile section of bowel.

      Originally posted by Rebiggs View Post
      2. How many times a day do you need to empty the bag? Can you do it yourself or need assistance?
      Again, this may vary from person to person and the location of your colostomy. The closer it is to the cecum, the more liquid will be the stool, and generally the more often it will pass into the appliance bag. When we did colostomies for our tetraplegic clients, we had the ostomy nurse and occupational therapist work together to see about finding the right brand/model of appliance that was the easiest for the client to empty/change themselves.

      Originally posted by Rebiggs View Post
      3. How do you release any gas buildup?
      Best to get an appliance system that has vented charcoal filter bags. Your ostomy nurse can help you with this.

      Originally posted by Rebiggs View Post
      4 What is sex and intimacy like with a colostomy?
      Ideally, empty your bag prior to genital sexual activity. You can also get fabric appliance bag covers so the stool in the bag is not seen.

      Originally posted by Rebiggs View Post
      6. Do you feel that the colostomy has overall improved quality of life?
      Several research studies done on this with people with SCI indicate that the vast majority felt their quality of life was vastly improved. You can search older posts on this forum to find testimonials to this.

      (KLD)
      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.

      Comment


        #4
        1. Did you have a problem with gas, bloating and abdominal pain before the surgery? If so did the surgery resolve your symptoms?
        Before my colostomy I was miserable with gas, bloating and abdominal pain. After my colostomy I no longer have those issues.

        2. How many times a day do you need to empty the bag? Can you do it yourself or need assistance?
        It could be once or twice a day or I can go days without anything.

        3. How do you release any gas buildup?
        My bag has a charcoal filter.

        4 What is sex and intimacy like with a colostomy?
        Same as before my colostomy.

        5. What issues or concerns do you have with your colostomy?
        None.

        6. Do you feel that the colostomy has overall improved quality of life?
        Most definitely has.

        7. Did you have any body image or self-esteem issues with getting the colostomy? If so how did you deal with them?
        Nope.

        Comment


          #5
          i know this was aimed at quads but ive been finding my peristeen is no longer working like it used to and im spending mlonger and longer on the toilet and was thinking about a colostomy but not sure how i would get on with it, i think in ways it would make my life easier, i suffer from bloating and build up alot of gas, i know it wouldnt be a problem looking after it being a para, but i play basketball and im active so not sure how it would fit in with my life, im curious do these bags smell? also can these get in fections? thanks.

          Comment


          • SCI-Nurse
            SCI-Nurse commented
            Editing a comment
            You may be surprised at the number of both AB and wheelchair athletes who have colostomies and urostomies, and manage them while engaged in event contact sports. You should be able to get appliances (bags and faceplates) that fit you (with consultation with an ostomy nurse) and which have both gas relief valves and valves with charcoal filters so there is little or no odor. A colostomy rarely can get an "infection" unless it is post-operative incisional infections (rare) or of course a bowel infect just as an AB person can get with bacteria such as C. diff. or food poisoning. (KLD)

          #6
          i got mine in 2005 i think sci 2001 best thing i ever did easier for to get retain caregiver no more accidents c6c7 i have no problem changing 1 minute done. when i get diarrea i put a big plastic bag that covers me and chair so no mess . you learn what works for you. again best thing i could have done

          Comment


            #7
            One question for folks who got the colostomy done as quads: How long does it usually take for you to get back to "normal" life from the day of surgery? By normal life I mean, normal routine, going out, eating normal diet, not having to care too much about the wound area, etc?
            Keep pushing!

            Comment


            • SCI-Nurse
              SCI-Nurse commented
              Editing a comment
              A lot depends upon the type of surgery you have. A much longer recover and restriction from activities if you have a traditional open abdominal surgery for this...a lot less if it is done as a laparoscopic procedure. Not everyone is a candidate for the latter, especially if you have had previous abdominal surgery or trauma (due to adhesions). (KLD)
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