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    PEG replacement

    Hello Folks, this is my first post so please bear with me. I have a question I’d like to ask.
    My partner Elaine has had a PEG since August 2018 but it has now deteriorated to the extent it must be replaced. She is suffering from gastric leakage and the site around the PEG is red, excoriated and extremely sore.
    The 3 options I’ve been made aware of are:

    1) cut the outside feeding tube off and then push in the current PEG. The inside part of the PEG would then be then passed out of the body naturally. A tube would then be pushed through the existing hole and a balloon inflated on the inside
    2) endoscopic replacement under sedation
    3) endoscopic replacement under general anaesthetic

    I really would appreciate anyone’s thoughts on the above. I’m on my own and don’t have anyone to talk to about this.

    Thank you.
    Mike

    #2
    Hi Mike and welcome. I’m just about to go through the same process. My first PEG was replaced after 8 years. Done endoscopically under sedation and removed orally (I only vaguely remember). Now 6 years later decision will be made on the day whether a) to replace using same site, b) not replace and leave a while for skin to recover or c) replace using a different site.

    Comment


      #3
      Mike - if it was me I wouldn't want you cutting anything................does the district Nurse call or the Dr...............what does Elaine think?

      Sooner rather than later, wouldn't want that to turn bad
      Husband Albert diagnosed PMA Feb 21

      Comment


        #4
        Hi Mike

        I'm presuming you are asking because you don't know which medical procedure to go for? I was a bit worried you planned to do it yourself.

        don't worry someone will get back to you soon with some good advice.

        Denise xxx

        Comment


          #5
          A warm welcome to the forum Mike.

          I had the first option - the cut & pass method - and had a low profile, balloon- retained button placed instead. It was quick and easy, and done in the endoscopy suite, and is a common enough replacement method.

          Balloon-retained devices do need to be changed at least every 6 months, which takes less than 2 minutes, and is not painful in the slightest.

          The least favourable option is number 3, because of the general anaesthetic. Even if Elaine's breathing is perfect, GAs are a last option.

          I'm sorry you're left on your own to make the decision, and the forum is here for you to ask questions, have a rant or a laugh! You only need to post a topic in one sub-forum, we see them all.

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

          Comment


            #6
            Thank you for the responses I’ve received so far and your kindness. Just to be clear, I will not be doing any cutting of the PEG or anything at all myself, apologies if I gave that impression. The visible part of the PEG has a 3 inch split of the inner tube, so it really is on its last legs.
            I am asking as I don’t know which procedure to go for. I’m Elaine’s POA and she does not have capacity, so I’m seeking advice in order that I can make the best decision for her, regardless of what I might want.
            I know I will get good advice but there are so many healthcare professionals involved and I feel completely helpless, just waiting. Always waiting.
            Thank you Ellie for sharing your personal story and for making me better understand the cut and pass method. I was concerned this would have to be repeated more often than you describe. The GA option is my least favoured because of all the risks attached to it.
            I really appreciate everyone’s input. As I say I am very isolated and have to make decisions on my own, so I think this Forum is going to be a really good source of information and help.

            Love Mike

            Comment


              #7
              Michael Davies welcome Mike....the wealth of knowledge from people on here is amazing. I'm newish & I've found lots of info just reading back through posts.
              It's good to talk as they say 👍
              Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

              Comment


                #8
                Michael Davies I was thinking about your situation Mike.

                There are pros and cons to balloon retained devices: if Elaine gets agitated with strangers and fuss, that could make changing the tube/button stressful. The balloon water needs regular changing, but you can do that. On the other hand, if Elaine is apt to pull the long tube, a low profile button might be preferable.

                If you decide against a balloon-retained device, then it's an endoscopic procedure, with sedation, and you could request a bumper-retained low profile button if you think it more suitable.

                Take care.

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

                Comment


                  #9
                  Hello Folks

                  I just wanted share the fact that after many weeks of debate between her healthcare professionals and some very difficult days, my partner Elaine successfully underwent her PEG replacement procedure under sedation yesterday. Her advanced condition, coupled with her frontotemporal dementia, meant the procedure was extremely difficult but within an hour she was receiving medication via the new PEG and it is working very well. She should be home within the next day or two..

                  I’ve found this quite a traumatising experience because ultimately I had to give consent and having made that decision on my own I have been anxious and concerned that I had made the right decision. The burden of responsibility has weighed very heavily and I’m even more exhausted than usual.

                  The new PEG should make a huge difference and certainly be more comfortable and pain-free than the old one. I hope I made the right decision for Elaine and that I wasn’t thinking purely of myself? She is such a fighter and this is another massive hurdle she has overcome. I’m so proud of her bravery and I love her even more tonight.

                  Thank you to everyone who offered advice and support.

                  Mike
                  x

                  Comment


                    #10
                    Hi Mike,

                    Being a carer for someone living with MND is impossibly difficult. You have my admiration for making such a hard decision on your own and your lovely words brought a lump to my throat.

                    I hope that Elaine continues to be comfortable following the procedure and you manage to get some rest.
                    Love Debbie x

                    Comment


                      #11
                      Oh Mike, you write with such love and tenderness about your darling Elaine, how could you have made a 'wrong' decision....

                      I am glad the procedure went well and it's behind both you and her now.

                      Thank you ever so much for letting us know the outcome.

                      I hope you can relax somewhat now and sleep well tonight.

                      Look after yourself Mike.

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

                      Comment


                        #12
                        Thank you for the update Mike. I’ve read all of your posts but didn’t feel qualified to post a response. But reading your post just now uplifted me. I too hope that Elaine recovers quickly and that you now get some much needed rest before she comes home again. Take care, love and hugs 🤗 Lynne x
                        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.

                        Comment


                          #13
                          I was really hoping for a replacement PEG but that would have meant a longer stay in hell. I was born lucky me. 👍🤣🤗😄😍xx
                          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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