Viewing 6 reply threads
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    • #29942
      Colleen Steele
      Keymaster

      We have at least one forum member facing a colostomy in the near future. She experience fecal incontinence caused by Sclaraderma which also caused her PAH.

      Is needing a colostomy a concern of yours or have you had one? If so, share your experience and feelings about this.

    • #29963
      Jen Cueva
      Keymaster

      Thanks for sharing this, @colleensteele. I know that @cdvol3gmail-com will appreciate any bits of information from others who may have faced this concern.

      Carol, we are all here beside you while working towards this procedure of having the colostomy larger this summer. I hope and pray that once you recover, you will enjoy some freedom. I can only imagine how fecal incontinence impacts your everyday life.

    • #29973
      Gayle Ward
      Participant

      Having a colostomy is something that you can manage. I supported a good friend that just went through this. At first she needed a lot of support. Home health nurses are so good at helping you figure out what works for you. Once you get a system down you can continue to enjoy your life as usual. You are in my prayers.
      Gayle

    • #29974
      Carol Volckmann
      Participant

      Thank you Gayle for your reassurances. I just have to keep telling myself I will have quality back in my life – hiking, bike riding and keep my focus on the positive. Thanks again, Carol

    • #29975
      Carol Volckmann
      Participant

      Thank you Colleen and Jen for your support and prayers. There are worst issues out there.

    • #29989
      Jen Cueva
      Keymaster

      It is my pleasure, @cdvol3gmail-com. Like @gward, I have taken care of people with colostomies. But mine was years ago, so I know there are many newer options available. We will be here for you along the way.

    • #29991
      Gayle Ward
      Participant

      You are in my thoughts. My friend’s life is back to normal and she is doing great. Use the resources available so you are able to manage this while hiking etc. There are nursing that are expert in this care and their help is amazing. Wishing you the best. Gayle

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