PEG or no PEG

Hi Koolsilver.

Thank you for sharing your experience with us. My husband is having his RIG fitted on Thursday and we are both getting really anxious. I worry about the procedure - he can't communicate very well and I worry he won't be able to tell the doctors if he is in pain or can't breath/swallow too well-. How was your experience? were you allowed to have a relative or carer with you?

thank you for your reply!

Thanks for the input Ellie, I love Dublin been there many times, I need some further help, before I had the PEG, I wasn't getting very much fluids at all barely two mugs of drink a day, now I am told I need 2.5 litres a day, so I started to pump the required amount inside me, and I am three times during the night to get relief, is that due my bladder shrinking and now I have to wait for it to expand again, or is there another explanation.

[Ellie]

Hi Mike,
Glad that it went well for you. Be sure to finish with a decent flush with water each time the PEG is used, to avoid any blockages.
I have 200mls of warm water after each lot of (crushed) meds, which gives me 800mls per day, in addition to what I take by mouth.
Ellie.

It has now been 10 days since I had the PEG inserted, all the pain has gone I am not taking any pain killers the hole where the pipe goes into the stomach has healed nicely, I had pain in the first few days after the OP, not agonising pain just niggling pain but the hospital gave enough Paracetamol to kill even that.
If you are worried about having a foreign object, inserted into your body, by the time you get to having the OP, you are probably not getting enough fluids into your body, you need fluid, if you do not have the correct amount , you will start to sleep a lot, do not put it off until it is too late!

I now pump my medication through the line and water, I can still eat, so I will continue until that becomes impossible, then that will have to go down the line too.
I do hope my experience helps you if you are procrastinating, you are given all the syringes and medication, as the hospital cannot use open packets of your personal medication.

I have read a lot about PEG and I am seriously considering not having it done, I can still eat although about half the speed of my partner.
Does anyone know of any one who has refused the PEG, and how they faired afterwards, will MND stop you swallowing eventually or does the swallowing mechanism keep operating, my MND visitor really wants me to have the PEG, but I do not want my body interfered with, I really need some input.
Thanks

Well I was very against the Rig I had but now I a, so glad I had it as I would be dead now and I am going in holiday next week . I can't take fluids as my swallow reflex is poor so I would be dehydrated . I can also take my medicines through the rig . It's a traumatic decision and I was very adamant I was nt going to have it but I am mangling now .. I have a blog which describes my experiences with bulbar onset NorthernStar 1. Woodpress.com

Best of luck with whatever you decide

I'm so glad it was successful for you xxx

No Complications, just the usual pain, but not agony, with the paracetamol the pain is almost nil, the nursing staff were wonderful, I would say this government is trying to save too much money in the NHS, the day nurses were run off their feat, but still done a great job.

Hi Mike

Hope you get the rest you need, and a fast, speedy recovery.

Good luck
CCxx

[Terry]

That's great Mike. Did you have any complications or pain.
Regards Terry

Thanks to you all, yes I had the peg fitted last Wednesday, its a bit of job sleeping, but I did mange a few hours after I had it done, but it is real benefit as it used to take me a whole morning to drink a mug of Ovaltine.
Now I can have a drink in seconds.
Thanks to all those who gave me advice, and encouragement.

Mike

Hello the Kool guy,
Wasn't able to post yesterday on what was hopefully 'P' day for you, but thinking of you and wishing you good healing and progress.
freda

Thinking of you. Hope there was a bed and that the procedure went well.

[Terry]

Hi Kool;
I think it's wise and takes any worry of feeding etc. away. It will probably take a couple of weeks to settle down but then be fine. Keep us updated and tell us what the nurses are like.
Love Terry

I have decided to have the PEG feeding tube fitted.I was Diagnosed in April 2013.
It will be fitted if they have a bed, next week, I really did not want this I do not like people messing with my body it has done really well up to now, but hey this disease does not leave much room for options.
I am just not getting enough fluids into my body at the moment, due to swallowing and choking, eating food I am slow but I do not choke, I do not know what happens to your Epiglottis but mine leaks just when you least expect it causing a traumatic choking fit, I cope with quite well now, but if there is anyone around it is quite shocking for them.

Hi Koolsilver

Pleased to see that you are getting the PEG fitted.

It was the best thing my mum ever did and she had it done when she was as well as can be with MND and only fluids and her meds were going through it at first.
Her swallowing has become worse she coughs with every fluid and food now so she is now on peg feeds only.
I am so pleased they did it when she was well as it has been a massive advantage, they won't fit the PEG if you are not well enough.
My mum is getting her breathing checked as she is struggling more now than ever, back in february her breathing capacity 98% but I don't think that will be the case this time.

Well Good Luck with the PEG I'm sure it will go well for you and you feel a benefit from having it done.

My mum always says that she wouldn't be without the PEG now.

Sending lots of love and best wishes
God Bless
Jo x

P.S. When were you diagnosed?