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Ileostomy stenosis at skin level

Anyone had successful treatment of stenosis at skin level of ileostomy?
I have had dilation under sedation 3 times and am now currently self-dilating twice a day with small dilators supplied by ostomy nurse.
This is a painful and slow process. From what I’ve read, dilation of stoma stenosis at skin level is only a temporary solution, and may in fact make the stenosis worse.
Interested in hearing others experience

  1. sorry, I don't have any personal experience.
    A friend of mine is doing the dilation at home three times ever day too. Last time I spoke to her she said they were thinking of doing a stoma revision! Can your stoma nurse shed any light?

    ~ Sahara (Team member)

    1. Thanks for your response . I’d like a surgical revision as I’m over dealing with this. Surgeon is concerned I have already had a lot of surgery and can’t afford to loose any more bowel, he’s @also concerned that I might end up worse off.
      It sounds to me like I’m going to have to continue to do the dilation forever?
      Does your friend have ileostomy or colostomy? Louisa

      1. that is defo not the ideal is it?! Even for your skin, having to remove your bag twice a day is not ideal. My friend said it had started irritating hers, changing so often. She has an ileo.
        I'm so sorry I can't be of more use. But, if you want a second opinion, definitely ask for one! It's YOUR quality of life at the end of the day.
        ~ Sahara (Team member)

    2. Thanks for you message Sahara,
      Saw surgeon yesterday, and he said he would refashion stoma but there is no guarantee it won’t be made worse.
      I asked him did he think it ok that I have to have a mainly liquid diet, and his answer was that it is preferable to operating and something going wrong.
      Decision is up to me 🤷🏼‍♀️
      I don’t know what to do.
      I’ve emailed him to ask him what he thinks the long term consequences of not surgically removing the stenosis.
      The self dilation really hurts, can’t imagine having to do that for the rest of my life. Will I even be able to manage it when I’m elderly?
      Stoma nurse gave me a couple more options to try - as well as stenosis or perhaps because of it, my stoma retracts and I have trouble keeping an appliance on.
      Wish I had a crystal ball
      Is your friend who has stenosis on this forum?
      Many thanks for your support

      1. oh no! Such big decisions for you! I wish I could advise you, but I am sure you will come to the right decision for you after a little thinking time. But yeah, a crystal ball would be super useful right about now.
        No, she is only active on Instagram I'm afraid.
        Sahara (team member)

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