New here/ feeding tube question

My mother has not had sufficient oral intake for a few months and is recovering from a urine infection. She failed to pass swallow assessments a year ago but we decided to go on with oral intake. Things have been ok until the last months where her intake has dropped and swallowing is worse and now I am feeling she needs a g tube.

I have many questions about this. I am uneasy about relying on her oral intake and also uneasy about having a g tube placed.

Is the surgery generally simple? Does the sedation used during the surgery have a negative effect on the brain?

What happens if she were to pull out the tube soon after it is installed? Would stomach acid then leak into the abdomen? I've heard two accounts of this happening where the person died from this.

Does anyone know if placing the tube radiologically vs endoscopically effects outcomes?

What level of strength does a person need to undergo this operation? She is weak right now and sleeps all day but the Dr more or less okayed the procedure yet I think she should be stronger first.

Am I overthinking a simple procedure I don't need to think about so much?

Clara

18 Replies

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  • My husband lived for 10 months with a PEG. His health improved a lot once it was fitted, now more sores, no constipation, skin became smooth and soft, he gained weight. It was also better for me as although I still gave him yoghurts, mealtimes were so much quicker. As well as the stand for holding the pump and bottle indoors, he also had a back pack so I could continue to take him out regularly until 2 two weeks before he decided he didn't want to be fed anymore.

    The operation/procedure took about 20 minutes, he was out of my sight for 30. It was done under light sedation and he just dozed while it was done and awake by the time he was wheeled back to me. I was worried about him pulling it out but I don't see how he could have as the hole on the outside of his stomach was tiny but the 'washer' on the inside was large. The surgeon showed me PEG before he procedure. He used his hand as the stomach wall and passed the tube through his fingers. He then tugged the tube to show me how it couldn't come out. He was a fiddler but I made sure the tube was under his clothes.

    You will receive instruction on how to feed your mum and after you have done it a couple of times, it will just be another thing to do. The two Crossroads carers my husband had, both came to the training session and fed him when I was out. I never had any problem apart from a couple of times at the beginning I forgot to close the tap after disconnecting the feeding tube and stomach contents leaked out. It was a bit scary the first time as I didn't know where the moisture was coming from but it wasn't serious, it just meant I had to change his clothes.

    Try not to worry about it. For my husband it was a simple procedure that gave him a new lease of life for a few months.

    X

  • Thanks, NannaB . That is reassuring. My husband had a peg fitted over a week ago. I am sure that he has gained weight already. At present, I only feed by syringe. Its a bit of a pain, having to sit holding it up in the air, but for now, we are managing. Also, he still eats as well. As I said to a friend, I can now add PEG feeding to my CV! Hope you are keeping well in body and spirit. God bless. Rx

  • Hi Robbo, What do you mean holding it up in the air. When I fed with a syringe they told me to hold it no lower than C's hip so I'd sit beside him and either rest my arm on the arm of the chair, or on a cushion on his bed. It is much easier with a pump. C never had night feeds but I could rig the pump up and just kept my eye on it but could get on and do something else, even just sit by the side of him with a cuppa or eat my meal in peace. I did go in the other room for that though as it didn't seem fair me eating and him not. I kept a camera on him to make sure it was OK and it always was.

    XxxX

  • Thanks, NannaB . B has Fortisip Compact Protein 3 times a day, which is very thick and takes ages to go down the tube. Like you, I rest my elbow on something nearby. I have just been told today that I can add water to it, which makes the process much quicker. The fortisip juice is much thinner, but he will just have one now and again. I might enquire about the pump.

    I am saving on washing as meals are less messy, but emptying the leg bag almost every hour. Still, B looks more hydrated and he is not as poorly as he was.

    It is so useful to have your experience to fall back on. Hope you don't mind.

    Big hug. X

  • Of course I don't. Keep up the good work.....you have to don't you?

    Lots of love

    X

  • Hi Grow

    Gosh, you are confronted with a very distressing decision here.

    I don't want to comment on the clinical side. Others here have full experience of that and could speak to it first hand, which I cannot.

    Generally clinicians are very good with their advice re. trauma caused by the operation and what you might expect.

    However I would ask you what your mother might want? That is a big decider. You are in the dreadful position of having to make her decisions for her. Your guide stone must always be what she might want. ( I am following the guidance of the Mental Capacity Act (UK) here, something I have used professionally many tines, but most Western Countries have a similar thing and it is very well thought through).

    Things to consider: Does her swallow allow liquid feeding? Or, would that cause her distress?

    I'm sorry I cannot be more helpful here.

    Warmly

    Kevin

  • Hello Clara.welcome. my hubby Gerry had radiologically inserted peg tube in February via light anaesthetic because of not only swallowing difficulty but because his mouth had nearly closed by then. It was fine. They kept him for 8 days because I wouldn't take him home before all necessary food and equipment was at home and I was trained properly in usage. I can nearly do it with my eyes closed now it's so simple. He's had his first change of tube, 3 mths in, and they did that at home but with hosp nurse.

    The pump is easy to use and as they keep stressing it's there for your convenience so I just do maths and put it on for however many hours I want at night. Usually 9.30om to 8.30am. 11 hours overnight, but you do whatever suits you and carers. I don't have any.

    Gerry hasn't pulled it out, not even when I'm changing balloon water each week.

    The doctors will advise what procedure would best suit your mum. Good luck. Marie. Sorry for the short book.

  • PEG feeding. 'surgery' is simple. Usually a 'local' procedure. Absolutely, no effect on brain .

    If Dr suggest PEG feeding, go ahead, patient may be weak from poor food intake. PEG feeding will put this right. I have no experience of pulling tube out. Contact the PEG unit at your hospital. ( your GP sound wooly).Pose question to them. Hospital will not insert PEG if patient not fit enough. They carry out this procedure every day It's their job and they have have tons of experience.

    Worry is natural. Pose all questions to PEG Unit. Experience a big big relief when all is over.

    Best of luck

  • Do not worry about the peg procedure, it has been a blessing for my wife. We only use syringes to give fluid, meds and fortisip supplement. Her eating and weight both improved . This also brought some of her skills back. You have to try to keep oral intake going as this is important for keeping normality and routine . This seems to keep brain function and recognition functioning. We have a good backup from the Nutricia nurse and diatician. If you have carers make sure they are trained and understand hygine.

  • Hi

    This is never a benign decision - it can lead to an improvement in the patient or make their existence a misery - please consider all options before taking this decision - my dad had a PEG tube towards the end of his life and I wish we hadn't taken that decision since he could not communicate properly or watch TV or read or enjoy any aspect of life at all

    Here is a guideline I received from someone on another forum:

    (I'm not a doctor but I am a speech therapist who currently works with swallowing disorders in people with neurological conditions)

    The best guidance I know of on this is the Royal College of Physicians (UK) report on Oral feeding Difficulties and Dilemmas: rcplondon.ac.uk/projects/ou...

    I don't think it's a humane or not humane thing to do. I think that for some people it's the best thing ever and for some people the benefits are outweighed by the burdens.

    In the UK we are moving away from the assumption that everyone will have a PEG tube. In fact, in the light of this report, I would say that the majority of people with dementia won't have a PEG tube.

    However, there are people where their swallowing is impaired out of proportion to their overall condition. They might have a reasonable quality of life except for their very poor swallow, and they might be able to walk, do a lot of things independently but just not be able to manage to eat enough to maintain weight. Or maybe mealtimes have turned into an exhausting, stressful situation for everyone concerned, but the person still shows signs of enjoying other parts of their life. In those cases, a PEG is probably humane.

    However, if the swallow is impaired in the context of advanced dementia and especially if the person is showing signs of significant distress, then I don't think it's humane. We are increasingly seeing this as a way of prolonging dying rather than prolonging life. And in fact the evidence suggests it isn't very good at prolonging life or preventing aspiration anyway.

    If you want an American perspective, our NHS Trust have also adopted these guidelines from the American Geriatrics Society: ncbi.nlm.nih.gov/pmc/articl...

    Good luck. It's a very difficult decision.

  • Thanks, Sammy, for your input. I was reading all the positives and feeling a sudden panic that I had made the wrong choice in not having the PEG, although everyone here discouraged me from that path; my guy had so little quality of life outside of eating. I shouldn't second guess myself. It's too late anyway. I'm glad you are still with us. I often think of your vision of the carers together. Another comfort. Thanks, Ec

  • thank you very much for the kind words easterCedar - Grow please check with your doctor - from what I saw with my dad and other caregivers' comments, if the patient is mostly sleeping, then they are near the end of life anyway... putting in a PEG tube may prolong their end... at the very late stages, lots of complications can occur, such as untreatable bed sores, cuts in the mouths that won't heal, phlegm getting stuck in the throat, which needs suctioning, which for some patients can be traumatic - PEG-tube feeding can also cause aspiration (fluids going into lungs) - all these things happened with my dad so I would recommend you do read up more on the internet, check with other carers, talk to speech therapists and dementia-care nurses specially (since the doctors I came across had more of an academic interest, rather than caring about the patient's quality of life)

    Please note that I don't mean disrespect towards anyone else's decision to use the PEG tube for their own loved ones - at the end of the day, the patient's own decision comes first, if they are incapable of this, one should consider what they would have wanted, had they been able to decide - for myself, I would put quality of life over longevity

  • That fits my own feelings. Chris enjoys food but little else. He is adamant he won't have a peg and I agree.

    In my mind it should be up to the patient. If they are incapable of deciding, then it is quality of life.

    If anyone is having a good life apart from swallowing then it is a different story.

  • I have just gone through having to make the decision to put in a PEG for my husband.Like yours,eating was one of the few pleasures left in his life,and I am wondering if I did the right thing.They are trying to introduce food but his swallowing reflex is scary.

  • Whatever you do, don't doubt yourself. (Easier said than done, I know.) I bet there are still some pleasures - cuddling? Music? a joke? I wish I had my guy here again...one more hug, one more smile.

  • It let me have my precious wife for another 23 months. So it was the best thing for our situation. Very simple procedure. Very easy to feed her versus the slow mouth feedings at the dinner table. Used to worry she would try to pull the tube out, but I'm sure it would hurt, so she never did. She was losing weight rapidly before the PEG, but once inserted her weight stabilized and she even gained some weight back. She was a "poster child" for the support group that I lead here in Kentucky and since then a couple others have gotten PEGs. With a PEG, you still have a choice to eat orally if you want, but it's nice to have this as backup, especially for administering medications. And if you wait too far in the disease, doctors will refuse to insert one if the patient is too weak. Also in the USA, if you go into hospice care, they will not cover the insertion of a PEG. But if you already have one before entering their program, they do cover the feed and supplies.

    Best wishes,

    Ketchupman

  • Thanks for all the responses. After the infection she was just sleeping and weak. The last few days she has been awake all day ,however, and is beginning to be stronger. I'm not sure at what point a person would be deemed' to weak' for the tube procedure.

    I had been wondering if an infection has such an effect on her where she just sleeps almost 24 hours a day, then how will her brain cope with sedation? From what people have said above though it sounds like it may not be a big deal.

    Her posture is very hunched over. The pictures of peg tubes I have seen online show them at a level above the belly button. With her kyphosis (posture) it looks like this spot would be inaccessible or would put pressure on the part that secures the tube on the outside. Does anyone have any thoughts on this?

    I will see if there is a peg unit at the hospital. I do not think there is though.

    Clara

  • The tube was scheduled to go in today. Then the radiologist had an emergency and the appt was cancelled.

    I felt very relieved because I am uneasy about the tube and and dread the whole thing. Still wavering from thinking yes she needs it and then back to lets try longer without it. I'm not sure why I am still so concerned about the sedation and her pulling the tube out. I guess I've read reports of sedation/anesthesia causing permanent brain damage in neuro patients.

    JantheNana how did the procedure go for your husband and how long did it take for the sedation the wear off?

    Clara

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