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David R RIG Fitting

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    #16
    I like David R was diagnosed with Progressive Bulbar Palsy. I had noticed that my speech was deteriorating some 4 or 5 years ago, but it was not until I moved house to Kegworth and signed up to the local Dr Surgery that I followed up the problem. I was diagnosed in Jan 2018 and since then my speech has deteriorated so that my wife cannot understand me. I use a boogey board as I find that easier than fiddling with the iPad. A number of correspondents have mentioned various computer programmes and I have tried ClaroCom but was not impressed.
    I can still swallow, but now it takes me twice as long to eat. I had a RIG fitted on 12 August 2019 in anticipation of when I could no longer swallow. It had been drilled into me that the RIG should not be left too long. I am lucky in as much I have not lost weight.
    I have had problems with discharge around the tube since day one and still am. I do not use it for feeding other than a 50 ml flush every morning. At one stage the RIG popped out and I had to rush to QMC, Nottingham for it to be reinserted. I have had the RIG tube replaced with a low-profile button about 4 months ago but I continue to have seepage. My wife has to clean around the tube every day and insert a pad between the button and my skin.
    This has been going on daily since August when the RIG was first installed.
    I don't know what to do! I have written this only so that others appreciate that a feeding tube is not right for everyone.
    Last edited by Stonehengeman; 30 April 2020, 19:39.

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      #17
      Hi Stonehengeman and a warm welcome to the Forum - sorry you've had to join us though...

      I've had a low profile button since 2008 (well, not the same one obvs )

      I'm sorry you're having issues with your feeding tube - a few Qs if I may!!

      - Do you think it's the right size for you - not too loose, not too tight and, if it has a balloon retainer, it has the right amount of water in it?
      - Is it stomach contents leaking or 'ooze'?
      - Is your skin red, sore, hypergranulated (overgrown out of site)?
      - Is it sore or just unsightly & annoying?
      - Were the nurses/doctors ever concerned about the leakage?

      Really once the incision site has healed initially, the area should be left uncovered to let the air circulate around it and keep the skin healthy - bacteria and fungus love warm, humid spots, so hopefully you can find a way to stop the leaking.

      Take care.

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

      Comment


        #18
        Hi everyone

        I too resisted the RIG for too long. I thought that I was doing fine although I knew that I was losing weight. It wasn't until I had a conversation with a close friend who is a nurse and doesn't mince her words that I realised that I was putting myself at unnecessary risk and I was in fact severely underweight. I phoned and had it fitted two weeks later.
        I did have some initial over granulated skin that kept reoccurring for no obvious reason and the community nurse kept an eye on it and I had cream a few times but now I have no bother with it x
        I have over night feeding and all my medication through it.
        Don't be afraid of it x embrace it because it will improve your health and quality of life

        take care
        Sarah xx

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          #19
          Hi Stoehengeman,
          I’m currently having similar issues with my tube and over granulated skin with daily discharge, I tried the steroid cram the nutrition nurse suggested, no result, GP gave me antibiotics which didn’t solve it so I’ve been in touch with the hospital specialists who sent me a swap test which I’m waiting the results on and they gave me a cream called Flaminal which I’m now trying. My tube should have been changed 4 weeks ago but has been put off because of Covid19 incase it went wrong and I had to go to hospital. The nurse from the hospital said it could possibly be bacteria on the tube which is why the swab was taken in which case the tube will have to be changed. I was going to have the button next time but I’m not sure now because at least with the normal RIG tube you can realise it a bit to clean around it.
          Hopefully this will be solved soon.
          David
          The site has always discharged a bit since day one.

          Comment


            #20
            David, if it helps your decision in getting a low profile button; they easily turn around 360deg, have a few mm between it and the skin, so they don't sit against your tummy and are easy to clean.

            Sorry yours has leakage too, that shouldn't be the case really.

            Hope that cream works on the hypergranulation tissue responds quickly to the cream.

            Take care.

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

            Comment


              #21
              Hello..I am hoping my husband will read this thread. He can still manage a soft normal diet and despite me trying to encourage him to have a PEG he flatly refuses. The man is as stubborn as a mule. It's been some months now since I started pulling up a chair and feeding him myself because he was bent almost double to the plate trying to get the food in his mouth due to his extremely weak arms. I said 'enough is enough' because our girls were getting upset seeing him struggle like that. So this positive post from you David I hope will help him.
              Thank you!
              Boiler x

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                #22
                Thanks David, and Ellie thank you that mask looks great. Mam is using the mask that came with the NIV albeit with double tape on her nose which is helping. I rang MND team today and Pegs have started up again at our hospital but only for emergencies but they are going to contact the peg team. fingers crossed, I’m so worried.
                Lesley

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                  #23
                  Thank you Ellie. I can see that you are a regular contributor to the Forum. To answer some of the points you mention.
                  1. I do wonder whether the tube is too loose. It swivells round quite a lot. It has a balloon retainer and I am confident that has the right amount of water. My wife started training as a nurse but due to dermatitis she had to give up but has some knowledge.
                  2. stoma leakage, I am not sure, As I said earlier my wife puts a pad between the button and my skin. Every morning we change the pad. It has been discoloured brownish sometimes red presumably blood.
                  3. some granulation and some redness of the skin.
                  4. sometimes a little sore. I am 80 but a very active 80 year old and that might be part of the problem. It is not particularly unsightly but very annoying in as much as it has to be dealt with every morning. I am a keen sun worshiper and with the weather last week I spent several hours each day in the garden. I remove the pad and the fresh air seems to help by reducing the amount of discharge. Let's hope for more good sunbathing weather.
                  5. Concern from Dr/nurses. I seem to have so manyhelpers/advisers. There is the neurologist and two Nurses in QMC, my local Dr practice, and a firm called Nutricia who appear to be an outside consultant. They supply the equipment monthly, syringes for flushing and the sterile water.The Nutricia Nurse is due on 18th May to replace the tube so perhaps I can get more advice/info from her

                  Comment


                    #24
                    I have tried twice to respond to you (Ellie) but could not get the reply to go. I was entering a short message and saying that I do not like the MNDA website as i do not find it user friendly and one of my replies appeared from somewhere, which I have now managed to send!

                    Comment


                      #25
                      Thanks David, I have only just caught up with your thoughts. I will write more later. Stonehengeman.

                      Comment


                        #26
                        At a sprightly 80 years young, you’re less of a Stongehenge Man and more of an Iron Age Man


                        Nutricia has great customer service (well they do in Ireland, I’m sure it’s the same in the UK) so you’re in good hands. The nurse can measure you for the correct internal length tube and check the ooze with PH strips to see where it’s coming from - it’s unlikely to be blood at this stage unless the blood-rich granulation tissue is bleeding – and the Nutricia Nurse will answer any queries you may have, they look after feeding tubes day after day.

                        It doesn’t surprise me that the stoma site likes the fresh air I don’t know if you’d try leaving the dressing off for a few days to see if it improves the discharge but it might be a Catch-22 if it’s staining your clothes… Next week is due to warm up again

                        Sorry you're being frustrated by the website. If you have Word, it may be better to type your posts in it, then copy and paste into the Forum.

                        Take care.

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

                        Comment


                          #27
                          Thank you for taking the trouble to reply. Having now read your details my sympathy goes out to you. In some ways my MND problem is nothing as compared to you. I have had 75 years without Pr. Bulbar palsy, And even now I can still eat, somewhat slowly. I havelost my speech . My problem is nothing to what you are having to cope with. Please look after yourself.
                          I will await the Nutricia nurse visit in mid May. Stonehengeman. ( I lived for 25 years close to Stonehenge before I moved to Kegworth, close to East Midlands Airport).

                          Comment


                            #28
                            Thanks for your kinds words Stonehengeman but it's not a nice diagnosis for anybody, at any age, no matter their situation.

                            Stay safe.

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

                            Comment


                              #29
                              Thanks. As it has turned out I had my RIG inserted earlier than necessary. But I had been warned not to leave it too late. Nothing is clear about MND. Every person is different. I have had anti-biotics, betnovate cream which I am still using (not everyday). I have had "lollipop sticks" for smearing round the stoma. I have had several swabs taken but nothing found so far, although I am waiting for the results of a blood test taken last Thursday. I have not heard of "Flaminal". I had a Botox injection in the cheeks/under chin to try and help to reduce saliva which worked well but needs redoing but it cannot be done while covid-19 is a problem.
                              I asked to have the button inserted rather than remaining with the RIG tube dangling down as I am a sun worshipper and the button is far less obvious. I am due a tube change on 18 May.

                              Comment


                                #30
                                Hi Boiler, Yes, I really hope my information will help him, just a curious question, Boiler 68? does that mean he was a plumber/ boiler installer? Big coincidence if he was because I was a Gas safe engineer and builder and started work in 1968 and I love Elvis.

                                Regards

                                David

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