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    hi John
    its nice to hear from you but think the circumstances could be better . i would really like to hear how you get on with the feeding tube as my husband is due to have one. if anyone else can add to this information it would be great to hear from you. my husbands treatment has been held up due to the virus but i am hoping it will all be back on track soon. xxx
    when i can think of something profound i will update this.


      Hi Denise. I use mine for meds only at present because a. they don.t taste nice and b. one is very sticky so sticks in my throat. I am still eating blended foods like big soups and weetabix with hot milk for breakfast. I also on two medical milk shakes a day.... The tube insertion went very well took 20 mins under local. stayed in overnight. Has liquid paracetamol for pain relief which worked. I pulled my stitches getting out of bed so i had one night in pain before the stitches came out. Everything fine now thanks.


        Hello John, I have Bulbar onset and I had my PEG fitted a couple of weeks ago while I was still fit enough for the simple operation. I have had no pain and no painkillers since the op and I sleep like a baby. I can still swallow but eating is painful and stressful so I'm sticking to the PEG which I syringe. The hardest part is getting used to it but that passes quickly. Living on my own means I am very jealous of you but I will try and deal with it along with everything else. Stay Strong x
        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx