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KarenaB
27th October 2014, 11:58
Going into hospital this afternoon to have my PEG op tomorrow, a bit apprehensive but getting very tired of all the chocking and coughing trying to eat and drink. So I'm looking forward to having some of the pressure removed and hopefully gain some weight back. Will keep you posted of how it goes. 💉 😷

mik
27th October 2014, 12:22
hi,
your bound to worry and i doubt anything anyone says will change that. But it is a simple procedure, i had mine fitted 2 years ago without any trouble and have had no problems since and have not heard of anyone else having to many problems either.
i am sure there will be no problems for you.
keep well.
mik

pete
27th October 2014, 12:34
Just wanted to say I hope all goes well tomorrow, I will keep my fingers crossed for you.

Pete

ccinjersey
27th October 2014, 13:18
All the best to you Karen, and I know all will go well for you. As they say, it’s all a routine procedure until you’re the patient. I’m sure your in good hands :)



Mik - how are you doing with your Trach ? Are you feeling the benefits from it ?

CC xxoo

Barry52
27th October 2014, 14:40
Best wishes for tomorrow Karen. I'm sure it will go well and afterwards relieve you of the choking. I know from experience this is not pleasant.

Barry

Trevorhb
27th October 2014, 16:54
Good luck Karen, I am due to have one fitted on the 24 November. You can warm the surgeons hands in preparation for my op.:)

KarenaB
27th October 2014, 18:32
We'll I've settled in. On the plus side I have a bed with a view. On the down side there's no wifi so having to struggle with my phone & 3G.
Someone came to test me for MRSA, they haven't returned to eject me so must be ok ;-)
Had one young doc put a canular in my hand, very uncomfortable & then he couldn't get any blood out.
So trying again in the morning.
Another dishy doc came to explain everything & get me to sign the consent form.
Another plus is the hysterical screaming banshee has been discharged.
So I think us ladies will be having a party tonight in celebration.
I only had 2 hours of her and I was looking for an escape route so I pity the others.

Going down at 11am tomorrow so not long a wait and I'll be a new hydrated woman ;-)

Jan
27th October 2014, 19:01
Best of luck tomorrow, hope you get a good restful nights sleep xxx

Davec
27th October 2014, 21:50
Best wishes Karen fingers crossed! Sleep well xxx

willsandco
27th October 2014, 22:22
yes, Karen, I echo all the above. Let us know as soon as you are able how you are. xx Joycie xx

KarenaB
26th November 2014, 19:50
4 weeks on and I'm now on 100% PEG feed & hydration. Boy has it taken the pressure off and made life easier. Had my MND Coordinator here today, she was amazed at how well the site had healed. It really is nice and tidy and I had no issues with it healing. I told her I had ditched the recommendations for cleaning and gone down my own route with colloidal silver. She was impressed and made note of it in her "bible" to tell others. Experience 1 - NHS 0

Karen xx

Terry
26th November 2014, 19:55
Hi Karen;

Pleased to hear it's working out for you. I tried Silver dressings on my RIG hole when I had infections and granulation. I'm not sure it made any difference but I have heard silver tipped catheters reduce the risk of infections.

I'm still melting down my dressing getting ready for Christmas.

Terry

willsandco
26th November 2014, 19:57
that's good news, Karen. It doesn't seem five minutes since you were writing to say that you were being admitted the next day! Mine is being booked for January. Hugs Joycie xx

Springtime
26th November 2014, 20:02
Hi Karen,
Good to hear all is going well with your Peg. I agree with Joycie that last 4 weeks have flown. Take Care xx

KarenaB
26th November 2014, 20:41
Hi Karen;

Pleased to hear it's working out for you. I tried Silver dressings on my RIG hole when I had infections and granulation. I'm not sure it made any difference but I have heard silver tipped catheters reduce the risk of infections.

I'm still melting down my dressing getting ready for Christmas.

Terry

Hi Terry

My site was left open, never dressed. I sprayed the colloidal silver on and cleaned it off with cotton buds, making sure it was dry after. Started that while I was in hospital as it never got any attention from the nursing staff so started as I meant to go on. Worked very well and no granulation, just looks like a neat piercing :-)

Karen

Terry
26th November 2014, 20:54
Hi Karen;

I've never heard of the stuff but it sounds like it's worth a try, I still have trouble with granulation, I use hydroquartzone cream for two weeks and it goes away and a week later it starts again.

A bit frustrating, Terry

Trevorhb
30th November 2014, 15:16
Hi Terry

My site was left open, never dressed. I sprayed the colloidal silver on and cleaned it off with cotton buds, making sure it was dry after. Started that while I was in hospital as it never got any attention from the nursing staff so started as I meant to go on. Worked very well and no granulation, just looks like a neat piercing :-)

Karen

My wound has a iodine dressing on it which has to be checked every day and replaced every other day, or more often if needed. There is then a gauze dressing placed over that to stop the iodine getting on my clothes. No sign of any problems so far and all the dressings will all come off in 10 days time and the tube turned for the first time.

lilkat86
30th November 2014, 17:08
Hi

Really good to hear your success four weeks after PEG. My dad had his ten days ago and is getting slowly better. So there is light at the end of the feeding tunnel at least :)

xx

Nettie B
30th November 2014, 17:14
Its encouraging that you have taken so well to the peg Karen. Did you take to the feed straight away Karen?
Trevor is 5 days post surgery and he finds it makes him feel nauseous. He is having a very small normal breakfast, later, pain relief and the equivalent of a small coffee (about 60 mls water), 150 mls soup at lunchtime ( though not hungry today), followed, a couple of hours later by the only peg feed of the day. After that occasional water and pain reief. He has a small normal meal at around 5 or 6 and more fluid and pain relief during the evening. He is no way up to optimum hydration so I can't understand why he feels so full and nauseous after the peg feed. Did you have anything like this in the early days? (Pain relief is usually Calpol in 50 mls water with 100 mls flush).
Love Nettie.

KarenaB
30th November 2014, 17:35
Hi Nettie

I was on so little food and liquid in lead up to the PEG that at first I did feel very bloated, I guess my stomach must have shrunk. It took a while to build up to 5 Fortisp Compact's 125ml each and I was struggling to have a soup at lunchtime on top. To take the pressure off the dietician upped it to 6 tube feeds and I dropped the soup and I'm fine on that now. I usually measure out 250ml of water, flush with 60ml of it, add a little to the Fortisp in a cup to make it easier for me to push through and flush with the rest of the water. I'm now getting over 2 litres of fluid in me a day and feel so much better. I've got myself a little routine of 2 feeds in the morning, 2 in the afternoon and 2 in the evening, works out well for me and the stress I was having trying to eat and drink has been lifted which is such a relief. It will take time for Trevor, it is early days so I wouldn't stress about it. Take time with it and things will settle down. If I can help with anything else give me a shout Nettie.

Karen xx

Nettie B
30th November 2014, 19:23
Thank you Karen. I think you may have a point about a possibly slightly shrunken stomach. The feeds that Trevor has are Fresubin 2 Kcal and are 200 ml each plus a minimum 60 ml flush (30 before and 30 after). It's a meal in itself. He's only having one a day but I guess it's a lot to start with. Trevor had lost some weight so the aim is to get it back up. Maybe "slow but sure" is the best approach. I'll let his appetite be a better guide than sticking too rigidly to the instructions and build up more gradually. Thanks so much for your input Karen.
Love from Nettie.

KarenaB
30th November 2014, 19:47
Good point Nettie, when I was still in hospital they have me a 200ml normal bottle of Fortisp. Felt like my stomach was going to explode! May be worth asking if they have a compact form of Frubesin or if not ask if you can move over to Fortisp Compact 125ml, they also have it in Fibre form and I have 2 of those a day and 4 normal.

Karen xx

Terry
30th November 2014, 20:15
Hi Neetie and Karen;

Do you need a 30 ml flush before hand, I could see the point of maybe 5 ml. I'm no expert!

Terry

KarenaB
30th November 2014, 20:22
Hi Neetie and Karen;

Do you need a 30 ml flush before hand, I could see the point of maybe 5 ml. I'm no expert!

Terry

I think that each health authority has its own guidelines Terry. I was told to flush with 60ml before and after whereas looks like Trevor's been told 30ml before and after. Suits me now to flush with more, I'm very keen to make sure I get a good amount of water in my body after being "parched" for so long.

Karen xx

KarenaB
2nd December 2014, 11:08
Hers a pic of my PeG site 5 weeks on for anyone interested.

Karen xx

324

Trevorhb
2nd December 2014, 11:47
I have a triangular fastening over the hole, you do not seem to have that? How do you get on with the loose bit of tube, I find it a nuisance.

Steve
2nd December 2014, 11:56
I think that each health authority has its own guidelines Terry. I was told to flush with 60ml before and after whereas looks like Trevor's been told 30ml before and after. Suits me now to flush with more, I'm very keen to make sure I get a good amount of water in my body after being "parched" for so long.

Karen xx

I was told 50ml :-)

Does anyone else find the fibre makes you feel sick? I am fine with 2 x 125ml protein but one fibre really makes my guts suffer.

Trevorhb
2nd December 2014, 13:28
I have been told our stomachs will have shrunk through lack of food and drink. If we put too much too soon through the PEG we suffer. We have split up feeds into smaller amounts and now get less problems.

KarenaB
2nd December 2014, 14:25
Hi Trevor

I prefer to make sure the end of the tube is secure so that it does not get tugged on. During the day I tuck it into the waistband of what I'm wearing towards the side or if jeans with pockets I pop it in there and it works well for me that way. As our bedroom gets very warm I wear a pair of undies in bed and tuck it into them and it doesn't interfere with my sleep or the position I end up in during the night.

Karen xx

KarenaB
2nd December 2014, 14:31
I was told 50ml :-)

Does anyone else find the fibre makes you feel sick? I am fine with 2 x 125ml protein but one fibre really makes my guts suffer.

Hi Steve

I'm on more than yourself, 6 a day. I take 1 x 125ml fibre first thing in the morning, have 4 x 125ml normal bottles spaced put through the day then last bottle is again a 125ml fibre. So I space them out. Do you really need to have the fibre? If your only on 2 a day I guess you are able to get some nutrition down orally? I was only given the fibre as I was getting constipated, it doesn't upset my system. Can you stick to the standard bottles and get fibre in orally instead, may be kinder on your system?

Karen xx

I

Steve
2nd December 2014, 14:43
Hi Karen

I am on 3 small meals a day and as you say 3 x 125ml a day. I was taking the fibre one for the same reason and it does seem to be working. It just upsets my stomach a little and i wondered if anyone else found the same.

Overall I am very happy with the PEG, I lost a lot of weight before having it but none since.

KarenaB
2nd December 2014, 15:04
Hi Karen

I am on 3 small meals a day and as you say 3 x 125ml a day. I was taking the fibre one for the same reason and it does seem to be working. It just upsets my stomach a little and i wondered if anyone else found the same.

Overall I am very happy with the PEG, I lost a lot of weight before having it but none since.

I had the same problem as you Steve, before having the PEG I had lost 35lb since March this year. So pleased that over the last 3 weeks I've manage to maintain my weight and not lose any more. Thankfully I'm still just within the healthy weight range so caught it just in time. Feel so much better in myself since having the PEG fitted, fabulous to get some water in me and now managing to get over the recommended fluid allowance in without trauma.

Karen xx

Jock
2nd December 2014, 16:41
Keep going Karen. :) Although I'm not 100% in my own mind yet about PEGs I'm happy to read of good experiences for others.

willsandco
2nd December 2014, 17:15
Jock et al. I had Alison, the respiratory nurse over from Sheffield today to bring humidifier for my BIPAP machine. She is booking me into Sheffield for a PIG in January or early in year. She says it is wise to have it now while I am fit and well. We have been debating the issue for ages and, in truth, I was OK about it until I read about Trevor's problems but we are going for it now! No going back. Decision made. Love Joycie

Springtime
2nd December 2014, 17:19
I agree with Jock Karen, for anyone who is contemplating having a peg the advice you are giving is invaluable. I showed Jim the pic you put on today and he was surprised how small the hole was. Still adamant he will not have it done but I am reading all the posts to him good and bad and then he is more informed. This way is far more informative to Jim than a 15 minute appointment with the Doc. Also Trevor keep posting. Hugs Spring x

KarenaB
2nd December 2014, 18:37
I agree with Jock Karen, for anyone who is contemplating having a peg the advice you are giving is invaluable. I showed Jim the pic you put on today and he was surprised how small the hole was. Still adamant he will not have it done but I am reading all the posts to him good and bad and then he is more informed. This way is far more informative to Jim than a 15 minute appointment with the Doc. Also Trevor keep posting. Hugs Spring x

Spring, in lead up to having my PEG I obviously looked around at what I could find on the net. I was shocked at some of the images that came up of PEG sites in horrendous conditions. Enough to put anyone off! That was why I was keen to post a picture of how mine looks which is nothing like what I was seeing prior to the PEG.

Mine was not dressed following the op so was open to the air and stayed dry & I have cleaned it two, sometimes three times a day with a cotton bud soaked in colloidal silver and dried off after with a dry cotton bud. I am still doing that now and will probably continue to do so. I just want people to know that it can be straightforward and not be put off from having it done.

Karen xx

KarenaB
5th December 2014, 13:28
Just had a visit from the District Nurse, setting up the suction machine delivered this week. She had a look at my PEG site and told me my MND Coordinator had said to her she'd never seen such a clean and neat PEG site. She also said that the coordinator was trying to get the advisory paperwork updated to include colloidal silver.

Karen xx

Springtime
5th December 2014, 13:50
Thats good to read Karen, theres obviously a lot to be said for letting the air get to the wound and this colloidal silver (which I had never heard of until you mentioned it)to keep clean and help the healing process. Hugs Spring x

Ellie
5th December 2014, 14:26
Hi,
There is really no need to use anything to keep a PEG site healthy; showering/washing daily and keeping the area dry, along with good hand hygiene is all it takes.
Long term use of colloidal silver on skin is not recommended.
Ellie (PEG in situ for 6+ years)

KarenaB
5th December 2014, 16:05
Hi,
There is really no need to use anything to keep a PEG site healthy; showering/washing daily and keeping the area dry, along with good hand hygiene is all it takes.
Long term use of colloidal silver on skin is not recommended.
Ellie (PEG in situ for 6+ years)

As with anything common sense prevails, I am not advocating "long term " use of this.
I have been told today by my Enteral nurse that the site can take 6-12 weeks to completely heal.
Following that there would be no need to continue using it, mine is healing so well I can see that I will have no need for it in a few days so that will be about 6 weeks for me.

Karen xx

Nettie B
5th December 2014, 17:10
Joycie, don't be put off by Trevor's complications. From Sunday to Wednesday we were changing the dressings twice a day then "hey presto!" on Thursday morning when the peg nurse came to check him out again the dressing was almost clean. Since then, fingers crossed, the site looks fine. He's had a really neat job done .... looks Iike a tiny extra belly button. Feeding through the tube has never been a problem. He is gaining weight, his hydration is going well .... and the grocery bill is going down ... I can buy more sherry lol.
Trevor's main trouble now is the saliva issue which means he's still sleeping sitting up in bed. We hope that will be aided by trying other medication from tomorrow. This should help his sleeping too. Onwards and upwards now hopefully.

KarenaB
6th December 2014, 10:34
Great news for me! Weighed myself this morning and I've managed to maintain my weight for the last 4 weeks. This is a big positive for me when I was having the pounds drop off week after week. So pleased that I caught it while I was still within a health weight range. :)

Karen xx

Springtime
6th December 2014, 10:55
Karen, that excellent news, you oviously made the right choice having the peg. Take care and enjoy your day. xx Spring

KarenaB
6th December 2014, 11:46
Thanks Spring, you too xx

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