PEG Tube feed duration

Hello - Has anyone been on PEG feed continuously since their stroke?

My Mum was fitted with an NLG when admitted to hospital and after a month, this was replaced by a PEG. We had hoped that this would be a short-term solution, but Mum has remained fitted with the PEG (over 3 years since the stroke) and is still Nil-by-Mouth.

I have seen that there is no time limit to how long a patient remains on PEG feed but wonder if over 3 years is rather a long time.

Also, the PEG comes with its own problems such as granulation and infections.

The PEG requires routine advance and rotate (which I have been told to do every day - it was once a week when initially fitted, but the advice was changed to once a day about a year ago) and the PEG site often becomes stressed and weeps and bleeds.

I have tried to get some advice from the professionals but they seem reluctant to do anything - even when the tube cracked (wear and tear) they just cut it (shortened it) instead of replacing it saying it might be too traumatic to replace.

The shortened tube makes it harder to use, but we have gotten used to it.

The thing we can’t get used to is the granulation and weeping/bleeding.

Thanks for reading.

ManjiB.

@ManjiB I’m sorry your mum is going through being fed like this. I don’t have any experience so no advice to give sorry. I hope someone can help you in the forum. Good luck and best wishes. :blush:

Hi ManjiB,

My husband had a PEG for about 3 years (different reason), which he HATED, so I am very familiar with all the trials and tribulations that go with it and you have my sympathies.
You don’t say whether your Mum’s eating/swallowing has improved since her stroke, because if it hasn’t, there could be a real danger of choking if she stopped using it. My husband had a nurse who visited regularly to check the PEG connection etc, which helped with any problems.
Maybe you could speak to her GP to find out whether she can be referred to a specialist?

Hi @Loshy and @MinnieB

Thank you for your comments.

Mum had a severe stroke and at the time, the consultants were not very positive about her chances of recovery and after their initial tests and assessments, to put it bluntly Mum was discharged our (family’s) care and we had minimal support. Covid lock-downs did not help as it meant even less “hands-on” support.

Our GP has not been very supportive and we are always having to go them with “solutions” after doing our research - this forum has helped us, but even with this the GP typically makes referrals which tend to lead to not very much. It’s hugely frustrating.

Wrt to the feeding, Mum has aphasia and poor cogintive skills etc. which gives the impression she is “beyond help” to the “professionals”. On the last visit the GP made, she said “Mum condition is deterioriting or will deteriorate”. This was a shocking comment as we see the opposite i.e. Mum’s condition is improving. The reason why GP and other consultants say things like that is they do not have full visibility of Mum’s conditon and the day-to-day improvements she makes. Because they cannot answer our questions e.g. when I asked about “tingling” in fingers and hands they didn’t know and wanted to put her on pain killers!

Sometimes we have even been asked to “prove” Mum will benefit from something before they will support our request which is most bizarre if you think about it. E.g. when we asked for physiotherapy, we were told to get “private” PT and prove Mum will benefit from it before they will give ongoing rehab support.

Anyway, back to the PEG - due to lack of genuine interest and hiding behind the Covid screen Mum has not been tested to demonstrate her ability to safely swallow food. We see everyday, she is swallowing her spittle and juices that form in her mouth but that is not what is required to get a sign-off. I have asked for a swallow test, but as with most other requests these have not been granted.

We are patiently working towards our goals, but it is taking a long time as everything takes an absloute age to achieve.

So along with the tingling, physio, PEG, drop in sodium levels, UTI’s etc. we just have to come up with solutions. Thankfully, despite the huge barriers in front of her and despite her age (90’s) Mum is determined to move forwards. That is what keeps us going - seeing Mum’s determination not to be beaten into submission.

Thanks for reading and for your responses.

Best wishes to all.

ManjiB.

@ManjiB Hi I’m disgusted at your GPs but then again we have some very conceited not willing to listen Doctors just in the profession for the big money! Your mum is a fighter or she wouldn’t have got to 90. I personally feel they are labelling her as in ageism. You shouldn’t have to prove anything to get treatment she’s had a stroke. Can you change doctors or practices? Could the hand tingling be carpel tunnel I only ask as I’m diagnosed with it and it’s very uncomfortable. It’s in the first four fingers and go numb too. It doesn’t effect the little finger you could test it out on her hands when she is having a flare up. Advise for hands is to swing them down as if you rub them when her hand is level it could increase the tingling or numbness. Just a thought. She can be checked quite quickly by a nice normal doctor if there is any! It’s the medium nerve in the wrist. I hope you get some answers and help. Thinking of you and sending strength and a hug too for you and your mum :hugs::blush: keep going Loraine x

@ManjiB really sorry to hear of the difficulties you are having trying to get some answers for your mum. Seem to be hearing more often about people not getting support they want / need. I think I agree with Loraine @Loshy re ageism. I think that plays a part in treatment decisions sadly. Hope you manage to get some answers soon.
Hugs to you and your mum.
Ann xx

Hello. I read your post with interest as we are going through something very similar. My husband is only 62 and has recently had 3 strokes. He was discharged ftom hospital with a care package of 4 visits a day. He is also nil by mouth and peg fed. He cannot speak, cognition very poor and his we are living downstairs with hoists etc. I know what you are going through battling to get any help. He has been home 8 weeks and our GP has not been out to see him. The stroke team physio has been none existent. They trained me and my daughter to use the hoist to get him into an armchair and thats where the physio ended. They are so negative to how much thet think he can improve. I know he is improving. His focus is better and he has tried to speak. I do the excercises on his arms and legs. I have booked a private physio and it has helped. I also have learnt that you have to fight for everything. I was never off the phone to wheelchsir services to get a wherlchair which i got last week. It had made a huge difference getting him out in the fresh air. The district nurse comes once a week to change the waterr in the balloon of his peg but i also have a peg nurse who i can ring and will come out if needed. She is part of the nutricia group who provide the food. Hope you get the help you need x

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Hello @CB115 ,

Thank you for your message.

I am sorry you are experiencing similar problems to us, though you have managed to get some equipment and made good progress with private physiotherapy.

It is hard but if you persevere you will see results and it is very rewarding to see improvements. Your husband is relatively young and so hopefully he will experience a good recovery or improvement in his condition. With your and your daughter’s help things should improve.

It is so sad the state the care sector is in – I saw a report on the news, which you may also have seen where a man is looking after his wife who has Alzheimer or dementia and incredibly the two carers they used to get have been withdrawn because the care agency hasn’t got carers with the skills needed to look after the lady.

All we can do is keep going and keep fighting for things.

Right now, I am again trying to get more PT/OT help for Mum, but have hit the same wall where no one wants to take ownership. The GP (NHS) says it is not within their remit and the social services say they cannot help! This after a private PT has written to the GP with some suggestions in what might help Mum.

Please keep on pushing your GP - they have to come out. It’s ridiculous for them to behave in this way. I actually lodged a complaint and even though their response was they had done everything they could, it seems that since the complaint, they have been a little bit more responsive - it’s a small step but I guess it’s a start.

I wish you, your husband and daughter all the best and I look forward to seeing some update posts from you with progress :slight_smile: