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    Peg

    It's nearly a month since I had my PEG inserted and it still hasn't healed. It weeps a little (not pus) and occasionally bleeds. I was led to believe it would all be OK within 10 days. Has anyone else experienced this?
    Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

    #2
    If it bleeds I think you must contact your nurse

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      #3
      Aalistoun I think I should. As soon as the holidays permit.
      Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

      Comment


        #4
        Originally posted by Rosemary6NT View Post
        It's nearly a month since I had my PEG inserted and it still hasn't healed. It weeps a little (not pus) and occasionally bleeds.
        When you say it "hasn't healed", is is that it weeps and bleeds, the stoma itself isn't healing or the stitch scars unhealed?

        Some seepage is normal for many people, it's usually brownish in colour, odourless and doesn't hurt the skin (i.e. not acidic) but it should not bleed - is it fresh red blood?

        Have you pain or redness around the incision site?



        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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          #5
          Originally posted by Ellie View Post
          When you say it "hasn't healed", is is that it weeps and bleeds, the stoma itself isn't healing or the stitch scars unhealed?

          Some seepage is normal for many people, it's usually brownish in colour, odourless and doesn't hurt the skin (i.e. not acidic) but it should not bleed - is it fresh red blood?

          Have you pain or redness around the incision site?


          there are no stiches so it is the stoma site. There is a bit of redness and mild itch around the site. The seepage is a pale brownish pink. The bleeding occurred a couple of days ago when I tried lying on my right side instead of my back to have a sleep. I wasn't aware of it at the time, only discovered it after I got up (it was fresh blood). My stomach seems to have got so big and the muscles so weak that it "hangs" when I'm on my side. I guess that created stress on the wound.
          Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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            #6
            I agree that it should be checked out, sooner rather than later, even just for peace of mind.

            Yes, it wouldn't take much stress/trauma on the stoma to make it bleed as the feeding tube is not yet sitting in a fully formed tract, so you need to be careful not to jump in with lotions and potions before having it looked at.

            The redness and itch could be indicitative of a low grade infection. xx
            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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              #7
              Rosemary6NT good luck with getting a qualified district nurse to come out to investigate as infections can develop quickly. So ring someone today. They must have out of hours and/or emergency staff xx
              ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

              I'm staying positive and taking each day as it comes.

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                #8
                Rosemary6NT …I had my RIG fitted last June.I did get an infection soon after.Currently I have a rash around stoma site and the district nurses have been in today to check its healing and checking /advising what treatment is needed.
                They work long shifts and I am sure if you rang them they would advise until they can come to assess.
                best wishes
                Mary

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                  #9
                  Ellie Lynne K Mary C thanks for the information
                  Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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                    #10
                    I use Aloe Vera gel on my site. Brilliant stuff 👌🙅‍♂️💓🤗xx
                    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                      #11
                      I've had 2 infections since mine was fitted in August. Basically I was told that the triangular plastic clip must be close to the skin with no more than the depth of a pound coin gap between skin and clip. This stops it sliding in and out which can cause issues. Are you turning it every few days? I was giving hydrocortisone cream and told to put it on the stoma site if had problems.

                      I have like brown sugar crystal form but I think this is normal.
                      Diagnosed May 2021 bulbar onset als.

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                        #12
                        Originally posted by shelly21 View Post
                        I have like brown sugar crystal form but I think this is normal.
                        Is it constantly oozing Shelly - after it's been cleaned, does it ooze and crust again soon after? xx
                        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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                          #13
                          No its not constant. I notice it every few days. Its not a lot and no blood. I don't use it regularly yet. But I do flush it daily x
                          Diagnosed May 2021 bulbar onset als.

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                            #14
                            I’m struggling now to chew and swallow but got my meal down me with difficulty tonight. Between my dodgy hands and now my mouth and throat I really need that PEG (and suprapubic catheter) but my appointment to discuss these is about 10 days away. I hope that they prioritise me.

                            I’m watching this thread for tips Xx
                            ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                            I'm staying positive and taking each day as it comes.

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                              #15
                              Lynne K hoping they sort it quickly. But in the mean time can you get any nutrional drinks prescribed? Fortisip is what I have prescribed. But I know there are other types. At least then you get your calories in. X
                              Diagnosed May 2021 bulbar onset als.

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