Having PEG tube on Monday

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Hi Everyone

I'm having a PEG fitted on Monday, one week before I start chemo and radiotherapy.  I'm very worried about this procedure and would love to hear the opinions of others who have a PEG.

I know I will be sedated but will I feel and be aware of what is happening to me? How uncomfortable is it afterwards? Do I have to sleep on my back to avoid problems? Will it easily conceal under clothes?

Any advice from this wonderful community would be most welcome. I'm just trying to get a grip of the facts and what to Expect.

Thank you in advance

  • Hi Rich999, I had a RIG which is similar to a PEG, however I think the fitting procedure may be slightly different. You don't feel anything really due to being sedated, it can be a bit painful with cramping for a few days, you will be given painkillers for that, it takes a few days for it to settle down. Sleeping on your back is a good idea until it all settles. Unless you wear anything tight it will be concealed under your clothes, it's a good idea to tape it down so it doesn't move about, some people get a belt which holds it in place. You will be shown how to flush it and how to use it, which you will quickly get used to doing. It's a good thing to have, I was 100% reliant on mine from week 3 of my treatment. It will take the worry of not eating away, if it becomes difficult for you to eat, during your treatment.

    Ray

  • Old Biker - thank you so much

  • Ray is spot on

    I didn't have a PEG but a nasogastric tube which is completely different but I can add that when eating becomes difficult please don't hesitate to use it. Like Ray I was completely reliant on my feeding tube for a good few weeks. ALL my food and meds went down it.

    Bolus feeding with bottles of food replacement is not only tedious but hugely time consuming; time when you could be trying to retain your humanity in the face of medical onslaught; time to be with family /dog/good boxset. So I fed overnight slowly by pump. It was a godsend. It might be something to ask about . Good luck

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

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  • Hi Rich

    I had a PEG tube  for 5 months.

    Insertion procedure? I was sedated, fell asleep,  insertion was not too painful, spent a night in hospital afterwards for observation, moderate abdominal muscle pain kicked a couple of days afterwards lasted 4-5 days ....well managed by pain meds.

    To keep PEG from dangling I made up a cord and plastic alligator clip gizmo to attach PEG to clothes...worked well.

    No problems with sleeping until I started overnight pump feeding....

    Peter

  • No problems with sleeping until I started overnight pump feeding.

    Was that the feeding or feeling carp due to treatment. 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    Community Champion badge
  • TBH, it differs for everyone.. I had a rather difficult time, and was held back for extra pain relief, but I know of others that had no major problems.. overnight feeding was never really a problem.. it's just a matter of getting in a comfortable position and not interfering with the tube.. I slept on my side with the tube laid out in front of me..

    Keep it clean!! you'll be shown what to do... 

    swallowing it wasn't a problem, so don't fret about that.. sounds worse than it is..

    I would suggest not to use a pouch thingy to keep it tidy, as it could end up being a warm moist environment which will be a breeding ground for bacteria.. you don't want an infection on top of everything else.. just tape it to yourself, it'll be fine..

    all the best.. 

    Loz (61)

    Oropharyngeal right tongue base T2N2bM0 squamous cell carcinoma p16 positive.. 

  • Feeding....pump had a habit of cutting out when I turned during sleep ....alarm sounded....pump running made enough noise to waken me during lighter sleep periods....3-4 am...feed normally finished I had to be up to flush PEG...then stow it away...

  • It never bothered me even with an NG tube. I wasn’t going to flush the tube in the night. Just did it in the morning when I got up. I’m not sure my pump had an alarm. Maybe it did. 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    Community Champion badge
  • Flushing?...I was advised not to let any Jevity sit in the feeding line by Abbott nurse....possible blockage......just following their advice.

  • Yes you’re quite right. I took too many liberties when I was in treatment but seemed to have got away with it. 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    Community Champion badge