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Jeannie
12th June 2011, 14:27
For people considering having a PEG fitted
Definition

A surgical procedure to place a tube inside of the stomach. This procedure is a less invasive alternative to an open abdominal operation (laparotomy).

Parts of the Body Involved
Stomach, skin, parts of the abdominal wall

Reasons for Procedure
A gastrostomy tube is used to:

Feed a person who has difficulty sucking or swallowing for up to 14 days or longer
Drain the stomach of accumulated acid and fluids in a person with a blockage between the stomach and the small intestine


Risk Factors for Complications During the Procedure
Stress
Obesity
Smoking
Excess consumption of alcohol
Use of narcotics or other mind-altering drugs
Use of certain prescription medications, including muscle relaxants and sedatives, anti-hypertensives, insulin, beta-adrenergic blockers, cortisone
Prior surgeries that involved or may have made positioning the abdomen difficult (such as a gastrectomy)
What to Expect
Prior to Procedure

Your doctor will likely do the following:

Physical exam
Medical history
Review of medications
Blood test
Urine test
X-rays of gastrointestinal tract
Endoscopic examination of stomach - an endoscope is a fiberoptic tube attached to a viewing device


In the days leading up to your procedure:

Do not take aspirin, aspirin-containing products, or anti-inflammatory drugs for one week before the procedure after discussing this with your
Do not eat or drink for at least eight hours before the procedure
Arrange for a ride to and from the procedure


Just before the procedure:

You'll remove eyeglasses and dentures
You'll remove your clothes and put on a hospital gown


During Procedure:

IV medications
Sedative
Anesthesia
An endoscope will be inserted into your stomach through your mouth


Anesthesia - Local, usually a lidocaine spray; IV pain reliever and a sedative

Description of the Procedure - This procedure is usually done by a surgeon and a gastroenterologist working together. An endoscope (a long, thin fiberoptic tube with a tiny video camera on its end) is inserted through the mouth and down the esophagus into the stomach. The endoscopic camera is used to produce pictures of the inside of the stomach on a video monitor so that the proper spot for insertion of the PEG feeding tube can be located.

The surgeon inserts a needle into the stomach at the spot where the PEG tube will be located. Using the endoscope, the gastroenterologist locates the end of the needle inside the body, and encircles it with a wire snare. A thin wire is then passed from the outside of the body, through this needle and into the abdomen. This wire is then grasped with the snare and pulled out through the mouth. Now, there is a thin wire entering the front of the abdomen into the stomach and continuing upward and out the mouth. The PEG feeding tube is attached to this wire outside of the mouth. The surgeon then pulls the wire back out from the abdomen, which pulls the PEG down into the body through the mouth and esophagus. The tube is pulled until the tip of the PEG comes out of the incision in the stomach. There is a soft, round "bumper" attached to the portion of the PEG that remains inside the body, this bumper secures the tube on the inside of the body. The outer portion of the tube is secured with a bumper as well. Sterile gauze is placed around the incision site.



Percutaneous Endoscopic Gastrostomy Procedure

http://i44.tinypic.com/k83u0.jpg



Copyright 2005 Nucleus Communications, Inc. All rights reserved. http://www.nucleusinc.com/



After Procedure - The PEG tube is secured to your abdomen with tape

How Long Will It Take?

30-45 minutes

Will It Hurt?

Anesthesia prevents pain during the procedure, although you may feel some discomfort. For a couple of days after the procedure, you may have minor pain and soreness at the incision site, which often feels like a pulled muscle. Your doctor can prescribe pain medications to relieve this discomfort.

Possible Complications:

PEG complications are relatively rare. Complications include:

Wound infection
PEG tube dislodgment or malfunction
Aspiration - accidental sucking into the airways of fluid, food, or any foreign material
Bowel perforation - a hole in the wall of the intestine
Gastrocolic fistula - an abnormal opening connecting the stomach and the colon
Peritonitis - inflammation of the lining of the abdomen
Septicemia - an infection affecting the entire body, caused by the spread of microorganisms and their toxins through the circulating blood
Leakage at the tube insertion site
Abdominal bloating
Nausea
Diarrhea
Irritation or infection of skin around the tube


Average Hospital Stay: 0-1 day

Postoperative Care:

When resting in bed, keep legs elevated and moving to avoid deep vein blood clots
Change the sterile gauze pads around the incision site regularly
Learn to feed yourself properly through the PEG feeding tube:
You'll receive fluids through an IV for a day or two, then you'll be advanced to clear liquids through the gastrostomy tube, and then to a formula
A dietitian will teach you how to use your PEG tube and how to choose an appropriate tube-feeding formula
Remain upright for 30-60 minutes after eating
Do not smoke
Learn the proper care of your PEG tube
Wash PEG tube and skin around tube regularly to avoid infection
Learn how to empty the stomach through the tube
Learn how to recognize and handle such problems as a blocked tube or a tube that falls out of place
Tape tube site when not in use to help prevent dislodging
Do not take prescription pain medication for more than seven days. After this point, take non-prescription pain relievers (such as ibuprofen) as necessary, but avoid taking aspirin or aspirin-containing products
To promote healing, resume normal activities as quickly as possible


Outcome
This procedure results in the placement of a workable alternative feeding site.

Call Your Doctor If Any of the Following Occurs
Signs of infection, including fever and chills
Redness, swelling, increasing pain, excessive bleeding, or discharge from the incision site
Headaches, muscle aches, dizziness, fever, or general ill feeling
Nausea, constipation, or abdominal swelling
Vomiting
http://www.aurorahealthcare.org/yourhealth/healthgate/getcontent.asp?URLhealthgate=%2214852.html%22

jadedjohn
12th June 2011, 15:32
Thanks for posting this - i was put off having one before seeing this - i definatly not now!

john

Jeannie
1st November 2011, 11:18
Bump

computatec
1st November 2011, 13:39
I'm with you on this John. The more I learn about it the more I shun the idea. What Jeannie has shown us is only half of the story because there is a lot of hassle getting the feeding right so you don't screw up your bowel function.

Clive

john
1st November 2011, 16:17
Clive,
I am a care giver to my wife Irene who until June this year was really struggling with food. Meals took 2 hours to consume, drinks were an increasing difficulty and she was losing weight fast. She had a peg fitted 22nd June and had a couple of days in hospital to make sure everything worked as it should and she could tolerate the food. Since then she has not had a problem other than the bowels which you mentioned and movements have gradually become less frequent. The dietician has varied the feed to one containing some fibre( the original had none!!) and we await the outcome. She has regained her former weight and she is a lot happier without the 2hour meals but that could be down to my cooking.

John

Crazy girl
1st November 2011, 22:14
My husband is now due to have one fitted and now I'm worried! I though that the op was routine and not horrendous?! Any positive stories?

I thought it was better to have one fitted earlier rather than later?

Tracy

john
1st November 2011, 22:44
Hi Tracy,

Irene's op was a piece of cake -- easy for me to say. She was in and out in half an hour or so and conscious throughout with just a liitle anaesthesia for her throat to relax. Came out smiling with no blood or pain. Healed pretty quickly and has certainly taken the anxiety of eating and drinking and choking out of her life. I've not her any complaints from her about it at all. I'm sure he won't regret it for a moment.

John

Crazy girl
1st November 2011, 23:18
Thanks John, feel bit better now!

carolmike25
1st November 2011, 23:54
Hi - the one mistake we made with Carol's progression was not getting the PEG fitted early enough. We delayed a couple of possible appointments because Carol wasn't sure until eventually feeding was almost impossible and it was done in a rush.
The op was simple and Carol had no problems adapting to the feeding regime - it's time consuming (a 1 litre bag takes 10 hours) and we've played around with types of feed / supplements / times etc in the 12 months since it's been fitted.
Feeding through the night was our early choice but it eventually affected Carol's sleep so we switched to days.
For Carol the PEG also gives much better control of fluid and medication intake - in the end it was a necessity but it's the solution we needed to counter the loss of Carol's ability to swallow any types of food or drink.
All the best

Kate
11th February 2013, 16:31
Hi All
I have read this information with great interest because my mum is going to have a peg fitted in March. What worries me is that her swallowing is extremelly poor and we have had numerous coughing and choking episodes so how did you and yours tollerate the endoscope?Otherwise i am glad she is having the peg fitted as I think it will improve her quality of life greatly. Any info would be great thanks.
Kate xx

Andrew
11th February 2013, 16:42
Hi Kate,

Just a quick suggestion to look at our information sheet on PEG and alternative feeding. You can find the link here:

http://www.mndassociation.org/Resources/MNDA/Life%20with%20MND/Information%20Sheet%2011%20-%20PEG%20and%20alternative%20feeding%20-%20making%20the%20decision.pdf

I'm also sure lots forum users will be able to give you useful information on what your Mum can expect etc.

Best wishes,

Andrew

Lolly
11th February 2013, 16:50
My mum was one of those who died from the procedure on 21st December 2012, two and a half days after the operation. The peg leaked into her diaphragm and her pain was immense for twenty four hours, until they got it under control with diamorphine, she then faded during the next two days, drugged up to stop the pain with my dad and myself at her bedside, not knowing what the heck was going on. The post mortem indicated that she died of peritonitis which led to blood poisoning, organ failure and shock. There was no inquest as this was "a known complication of a peg procedure".

She was thirteen months post diagnosis and still enjoying life.

The information on the mnda website does not tell you about this complication as it happened to my family. To this end I have provided them with evaluative feedback:

"A gastrostomy is a common and relatively safe procedure. As with any treatment there are always some risks, such as the possibility of infection, bleeding from the wound and/or a painful abdomen.
The risks involved with tube placement vary depending on the state of health of the person having the procedure (see later heading When should I have a PEG, RIG or PIG fitted?). However, most issues can be resolved and major complications with PEG, PIG or RIG procedures are very unlikely." (Mnda publication)


Guess we were just unlucky, then. Sorry to sound bitter, but I am and I will never be able to reconcile the fact that as she was dying I was telling her that a painful abdomen after peg surgery was to be expected.


I would strongly suggest that anybody having this procedure INSIST contrast dye be put through the peg and then an X-ray to check for leakage BEFORE any water, medication or food is put through the peg. This, in order to prevent a leak into the diaphragm and peritonitis which is fatal.

Rory
11th February 2013, 17:01
I had one fitted - they called it a RIG - radiological inserted. A different operation but they had to put a tube down my throat to put air into the stomach to bring the stomach wall up to the surface of the inside of the skin.
Once the thin tube was put down , it was fine, and nothing to worry about. The thought of having anything inserted whilst you are having trouble swallowing is worse than having it fitted. Once it is there, ie before the op , you don't really feel it.
The tube for a PEG may be larger, but others can comment on this for you.

Hope all goes well, and your mum will feel the benefit

Rory
X

Andrew
11th February 2013, 17:09
Hi Lolly,

Thanks for sharing your story.

A quick note about your feedback; I've passed it on to our care team who are going to review the information sheet.

Best wishes,

Andrew

Lolly
11th February 2013, 17:23
No need Andrew as I have already followed protocol. Feedback has been provided about the quality of the information sheets via the evaluative procedure online, which the mnda suggest should be followed. Thanks, though.

berdbrain
11th February 2013, 21:54
My sister had a peg fitted in august and her husband stayed with her overnight at John Radcliffe Hospital. She was very sore for several days at the site of the tube insertion, but she followed instructions and got moving and is vigilant about keeping it clean and flushing it and everything and she can put in her own feeds very easily.....the only thing is that the feed makes her feel sick and so she has the fruity ones rather than the mikly ones. She has also just agreed to using a pump for overnight feeding which takes the pressure off trying to get feed in during the day, she says it is better so your mum may consider this sooner rather than later, and rory recommends pump feeding as well.
It is very important because, loosing weight is so serious, so I hope that your mum has the peg fitted and recovers quickly.
sending best wishes and a prayer
BB XX

Lolly
12th February 2013, 02:38
One other point, btw, which I have repeatedly seen in most publications.

If the patient takes Warfarin, this should be stopped three days prior to peg surgery. Warfarin thins the blood and may prevent healing around the peg site, leading to leakage.

Chrissy
12th February 2013, 14:20
Hi Lolly

My hubby has absolutely refused this op. partly due to our SALT she told him of the complications and as he seems to be in advanced state of MND he and others including our GP have said that it wouldn't benifit him, luckily he can still eat, although it is extremely hard feeding him, holding his head up with one hand and spooning the food in with the other, then release his head half way slowly otherwise he chokes, but he is still enjoying his food which is of course the most important thing.

I have to say I was glad that he doesn't want it after reading about what happened to your Mum (bless her)

Chrissy

Lolly
12th February 2013, 15:19
Good on him Chrissy.

Some studies I have read indicate a one to four percent chance of complications, some as high as ten percent but mainly due to respiratory risks, not leakage.

Mum had just started on a bipap for part of the night. She had fair upper body strength and good head and trunk stability. She was able to pull herself up using a riser chair onto a transfer turner to get into the wheelchair. She was able to manage food such as omelette and weetabix, but really wasnt drinking enough liquid, hence the operation, which was thought to be a good thing. Her mnd was not advanced enough to have postulated such a result from this operation .... The night before the operation she was sitting up in bed playing gin rummie with me, while helping my dad with a crossword.

Chrissy
12th February 2013, 16:27
Good on him Chrissy.

Some studies I have read indicate a one to four percent chance of complications, some as high as ten percent but mainly due to respiratory risks, not leakage.

Mum had just started on a bipap for part of the night. She had fair upper body strength and good head and trunk stability. She was able to pull herself up using a riser chair onto a transfer turner to get into the wheelchair. She was able to manage food such as omelette and weetabix, but really wasnt drinking enough liquid, hence the operation, which was thought to be a good thing. Her mnd was not advanced enough to have postulated such a result from this operation .... The night before the operation she was sitting up in bed playing gin rummie with me, while helping my dad with a crossword.

Hi Lolly

I am shocked, she really was taken well before her time then, I can understand how you would feel angry about this.
I consider that we have been lucky with our SALT I think she could see that we have major problems without adding to them . Her main concern was Bobs breathing as he still has the ability to chew, but he is struggling with liquids recently, I understand we can get a thickener if this becomes a bigger problem than it is already.
So sorry again for your loss, you were robbed.

Chrissy

Kate
12th February 2013, 16:30
Hi Lolly
Thanks to you and everyone for your posts. We have the assessment at Aintree Hospital on 6th March so I will keep all your points in mind for the relevant questions to ask. I was so sorry to read about your mum and how you feel, as if MND isnt bad enough. Thank you for enlightening me. Love to you all and I will let you know how we go on
Lots of love
Kate xxx

Lolly
12th February 2013, 16:44
Hi Lolly
Thanks to you and everyone for your posts. We have the assessment at Aintree Hospital on 6th March so I will keep all your points in mind for the relevant questions to ask. I was so sorry to read about your mum and how you feel, as if MND isnt bad enough. Thank you for enlightening me. Love to you all and I will let you know how we go on
Lots of love
Kate xxx

Please please please make sure you ask for contrast dye first and then an X-ray before anything goes through the peg xxx

Irene
12th February 2013, 20:33
mY husband John had his peg fitted in July 2010 and had no problems at al he has swallowing problems but was fine with the sedation and the endoscopy tube wasnt a problem.He said he cant remember anything about it and even asked the nurse when he was having it done.......He was already back in bed and it was over without him realising.He can still manage a very soft diet with the odd cough,choke and splutter but the extra nutrients he gets through the peg have made a big difference to his life xIrene x

Kate
13th February 2013, 16:02
Ok Lolly I will ask thank you so much for that advice. Thank you Irene I am glad Johns proceedure went well and that he has benefitted. I am happy that I put this out to the forum as its only people who have had or are closely connected to someone who has had the proceedure that can comment 1st hand and there are obviously pitfalls to consider as with Lolly's Mum. I will let you know how the appointment goes.
Thank you all again
Kate x

Funghie
23rd April 2014, 11:17
I was diagnosed with progressive bulbar palsy in feb 2014 and was advised to consider having a PEG fitted although I was coping with eating and drinking with difficulty, functions I soon lost but I took the advice and had my PEG fitted. Now getting nutrition is a piece of cake. I have stopped losing weight and looking forward to putting some on. My advice is have the minor op done early rather than when absolutely necessary

Terry
23rd April 2014, 13:40
Glad to hear that it is working so well for you Funghie;

Like your piece of cake quote.

Best wishes Terry

rusalex
2nd May 2014, 11:59
Thank you for posting, info just really blow my mind

roy
2nd May 2014, 12:35
Wow Jeannie ,
Just read your detailed post,wish I'd seen it before procedure ,
I can still eat and drink but use for extra hydration .when I was
First diagnosed i was determined not have the op through fear
I can honestly say I have had no difficulties in the 5 months and
still have a choice to use it or not.

Roy.

Terry
2nd May 2014, 17:15
Good to hear from you Roy;

I am due to have the procedure early in June as I find drinking a bit hard when out. I eat well and most things but drinking was very hard when I was ill after Christmas. Nice that you have not had any problems from it, hoping it's the same for me and everyone else.

Regards Terry

gerald
2nd May 2014, 21:48
Hi all like most of you chritine been using peg just over the year now been fine hydration good weight maintained although she would throw the fortisip or to quote her stick somewhere unmentionable. Today we took christine to the hospital where it was changed apparently they manufacturers will only guarantee the device for two years, didnt realise the only way to remove it was for nurse to pull it out short sharp pain but she did well bit of advice if anyone is having this done in the future dont do a feedbefore hand goes all over the place, which again pleased mrs. Everything fine now just a shorter tube. Regards gerald

magic
3rd May 2014, 08:57
You did not have a good day yesterday Gerald!
Magic

Jackie
3rd May 2014, 14:35
Hi all my Mum had a Rig fitted because we waited to long for her to have a peg fitted !! She was very weak , had lost two stone in weight when she had her op . It was a really tough time and very scary.
That was just over a year ago , if she hadn't had it done she wouldn't be with us now !!
For a lot of people this horrible disease can come on fast and symptons change quickly , so my advice would be if you are having trouble eating and drinking at all have it done . You will need it done in the end. So have the op before you are really struggling , loose to much wait and become weak !
Hope this helps someone if they are unsure on having a peg fitted and when to have it done.
take care all Jackie

Hazelnut
3rd May 2014, 19:56
Hi,

My advice would be , if you want a PEG get it done as soon as possible. I was diagnosed in June last year and decided in March this year to have the PEG while I was still fit and well.

In between deciding and when I had it fitted my breathing had deteriorated so much that I had to have a RIG. I had this fitted on Monday last week and assuming, because of my breathing, they would not sedate me and it was quite painful.

I spent 3 days in hospital, but now I am out I am feeling better each day so I am pleased that I have had it done even though I don't actually need it for food at the moment, but it helps to increase the fluid intake.

Regards


Geraldine
Geraldine

Seriouslypinkchick
3rd May 2014, 21:27
My dad is due to have his PEG fitted on 20th May and I have mixed feelings on the PEG I know there is the risk like with all operations, but seeing my dad choke on simple foods and drinks also is not nice to see and worries me greatly, he lost alot of weight and is so thin I always remember my dad being a big guy 10years ago he was 23 stone but lost 7-8 stone by dieting but since being ill over last last 18 Months lost a further 4 stone and now weighs 11.8 and is 6 ft so just looks so thin :( so I think now is the best time where he can still eat soft foods but has the PEG there if he really needd it i find the more tired he is the more he struggles to eat and seems to choke more than normal just think if he can just gain another stone or 2 he look so much better as he looks frail

Jennie x

Jackie
4th May 2014, 10:12
Hi Jennie , my Mum was 13 stone , went down to 10 stone . mum had a rig fitted because of her throat instead of a peg .
She has put on a stone and would have put on more if she had kept on the feed they had her on . But she was happy at 11 stone and has been the same weight for months.
I know how scared you are , we were the same. Mum is still with us a year later . So we are all so glad she had it done.

Take care love Jackie x

Seriouslypinkchick
4th May 2014, 12:49
Hi Jackie

Thanks for your reply glad your mum has gained the weight she needed to gain how old is your mum and how long since your mum was diagnosed

Jennie x

Seriouslypinkchick
4th May 2014, 13:25
With my dad due to have PEG fitted soon was just wondering how long it takes to give each feed is it a fairly quick process and do you have it like you would have 3 meals aday this may seem a really silly question but I know very little about it and when we was at hospital last I asked some questions but uou always think of more afterwards

Jennie x

Ellie
4th May 2014, 14:45
The dietitian will assess your dad’s nutritional requirements and prescribe a feed and a feeding regime. Most people use a feeding pump, which you just program and it does all the work. Don’t worry as everything is fully explained and training is given. Some people take the feed overnight, which can be handy.
It can seem daunting, but really it’s straightforward and easy to master!
Ellie.

Seriouslypinkchick
4th May 2014, 15:40
gThsnks ellie prob nothing to worry about but when you are faced with all these new things it gets your brain doing over time x


Jennie x

willsandco
4th May 2014, 15:43
I was diagnosed In mid March with bulbar onset MND I am still eating normally, though I do have to concentrate more on what I eat. I don't have problems swallowing food but sometimes have problems with drink and certainly tablets. The respiratory nurse at my last MND clinic last week said my breathing is still 100%. The registrar spoke to us about PEG and how a decision will eventually have to be made Do I want it? No, I don't think I do! But if it is inevitable, how do you decide when is the best time?

Ellie
4th May 2014, 16:27
Hiya Joycie,
If you decide to have the PEG fitted, it’s best to have it done when you’re relatively fit and healthy; recovery is quicker and easier.
You might not necessarily use it for food initially, but it is so useful for hydration and taking medication.
I still enjoy a small lunch, but I need supplementary tube feeding as I couldn’t get enough calories orally. Having a PEG has definitely maintained my weight and contributed to keeping me in good health.
Ellie.

willsandco
4th May 2014, 18:05
thanks Ellie. I haven't done much research into it all really but I am just concerned about how prominent it is from the outside. I am not at all vain, but I have just got married and am probably more aware of my appearance now!

Ellie
4th May 2014, 19:04
First you get a tube fitted, which is, as far as I remember, about 8 cms long. It doesn’t show unless you’re wearing close fitting closely, but there is no hiding it when you’re undressed!
Once my PEG site was established, the tube was replaced with a low profile button, which sits flush against the skin (it’s about 1cm deep) . Apart from being more aesthetically pleasing, it is less likely to be tugged and pulled accidentally. I wear T-shirts, no problem and it’s not noticeable.
Google Mic-Key button for information. I’ve had two types and this was the best for me.
Ellie x

willsandco
4th May 2014, 19:21
Thanks so much, Ellie. It seems silly to be absorbed with aesthetical issues - but just sometimes things get to you, don't they? Normally, commonsense kicks in with me. I have spent the afternoon laughing with the granddaughters about making laminates to carry around the town to explain that I have MND and cant make myself understood sometimes (and silly laminates for Granddad like "Will you please peg out the washing!" "Will you please do the wiping up!" ) I suppose the worst thing is not knowing how it will manifest itself and how soon- but I am sure so many of us feel like that! Just today the thought of a PEG procedure has been one step too far!

gerald
4th May 2014, 22:09
Hi willsandco. I would think its only natural to still want to be your best, in our house christine wanted those leggings s it to go under her new dress i had to have a laugh and say can you explain how i get my stubborn hands up a gight pair of leggings to get to a catheter valve not easy and think of the lumpy bits, she seemed to accept that but she still complains at the fortisips down the peg puts weight on she does not like that, take care gerald

rusalex
9th May 2014, 14:37
thank you for posting, good to know this

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