i had my first peg almost three years ago and now I have had a new one inserted. It is the balloon type which has to be filled with water unlike the first one. My problem is that it seems to be sucking into the stomach and I have to pull it out. It also hurts when that happens. Another thing which I didnt have before is that without the stopper at the end it would leak out the whole stomach. My doctor has suggested some kind of imaging tests and is reluctant to just reinsert it. It has been some weeks and doesnt seem to consider it urgent although I have pain and have to resort to pain killers. I also have had to use silver nitrate to stop the growth round the tube.
I'm so sorry to read your post this evening.
I had a Rig tube which sounds similar to your Peg. I only had mine for a short time though. Mine also used a balloon inflated with water.
I had similar issues to you, mine moved in and out a lot and sometimes hurt when it pulled inwards. I used tape to hold it in place when I wasn’t using it and this helped to make it more comfortable and stable. Unfortunately mine took about 6-7 weeks to settle and heal properly and I had to have a clip fitted to stop it from leaking.
I hope you manage to get seen by a Peg expert. I found the Abbott nurse who supplied my Ensure drinks was the most knowledgeable person to talk things through with. There was only one nurse in the hospital I had mine fitted who seemed to be an expert in Rig tubes. Don’t give up
i wish I could advise you more and I hope you don’t have to wait long to speak to someone who can help.
Thank you very much for your very prompt reply. I should mention that I also have the problem that my hospital uses abbot and my council use fresenius products. I think the abbot is better. So my products nurse has no contact with the hospital. She has told me to go to another hospital where she does have contact but I am not sure if I can do that. She had never seen the action of the peg being pulled in and took a film of it. Your idea of taping it would make it hurt more since if it wants to be pulled in, stopping it would hurt. I am not sure what kind of a clip you needed since it has a stopper at the end. I meant leaking when the stopper is taken off. I always understood that pegs are one way. I have only had it about four weeks and maybe my doctor is thinking on your lines that if I wait long enough it will heal by itself. I will be sending him by email your comments and to all the dieticians and nurses involved and anyone else who answers this post. It seems that this was your first peg and you are lucky that you dont need it for life. I dont have that luxury since the radiation ruined my mouth (if you read my blog)and I cannot eat solid food. Thanks again for your prompt reply.
My Rig also had a stopper however when I opened it sometimes liquid came out, I used a clip about half way down the tube and when I used it I had to hold the tube vertically upwards to stop it leaking.
It sounds like you need some sound advice about why it’s pulling inwards though. Mine used to a little bit. Not nice and very uncomfortable
I’m sure our wonderful Community Champion Chris will reply later. He also uses a Peg long term like you.
I wish you all the very best
Background: There is a conspicuous absence of guidelines from the various manufacturers regarding the recommended time for replacement of a PEG (Percutaneous Endoscopic Gastrostomy). Currently, the methodology that influences a decision for PEG replacement is unknown and empiric.
Methods: 100 patients from chronic care hospitals or nursing homes with PEG tubes in place for more than six months were examined using a checklist of relevant data. Parameters considered included time since placement, quality of skin around PEG and quality of tube components.
Results: Skin breakdown became common, as was decayed PEG tube and stopcock, all beginning about eight months after PEG insertion (p<0.01). Over half of patients had abnormal skin condition around the PEG consisting of either inflammation, infection, or signs of obvious discharge. Most patients had PEG tubes with varying degrees of occlusion.
Conclusion: PEG tubes should be replaced after approximately eight months in order to prevent skin infection around the PEG and fungal growth. We recommend replacement of PEG tubes by a skilled physician in the hospital at regular eight-month intervals.
I should mention that my peg still has skin infection around the PEG and fungal growth. Why my hospital who regular checked it never thought about changing it till it sprung a leak I will never know. And even then the first time it was faulty which was also long after eight months they somehow repaired it.
Good evening seeker , i now have the ballon one and to tell you the truth they are not as good as the permanant ones , my one moves in and out but i just leave it because if its to tight against the inner lining of the stomach it can cause discomfort . Some people are a bit o.t.t with the cleaning of the area i just wipe it with a baby wipe a couple of times a week . If i get any discomfort i use hydrocortisone cream around the area and within an hour it feels a lot better . You definately should not be in pain with your p.e.g and in my opinion it needs looking at a.s.a.p so i would contact your consultant or dietitican so they can see whats causing the pain , i have had mine in since 2009 and never had to take pain killers for this . Im not sure what you mean by reinserting it , is it that you want it replaced with like the original one . I also asled my dietitcan for a clamp as i had a couple of mishaps with the stopper coming out and going all over my clothes and bedding . I have an appointment with my dietitcan next month and im going to ask for a bigger diameter tube as this ballon one is so slow when syringing also asking for the old style one put back in . Another thing that bugs me is the screw type syringes ( enterlock ) as i prefered the long push in ones Funny enough i have an Abbott nurse coming around on Wednesday to change my tube . Hope you manage to contact someone to get the peg site examined ,take care .
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Thanks again. As I wrote this is not my first peg see my further reply. My first peg didnt cause this problem so I suppose it doesnt occur to everyone. My peg at the moment just doesnt shed a small amount of liquid but fills up the whole connecting tube to the pump if I let it. Having read your profile it seems your peg is not the same as mine although we have similar problems. Mine is called a peg and yours a rig. I also think it enters the stomach at a different place.
Thanks.I suppose my pain and discomfort is also because of being tight on the inner lining. But what do you do, if it already has sucked in almost the whole tube. I use hydrocortisone and maxitrol on the fungus but silver nitrate is the only thing that helps. I dont know how these ointments can help on the stomach lining. My first peg was also not a balloon type and I had no trouble with it. You say as soon as possible, my doctor is already letting me wait three weeks. He has suggested a tubogram and pegogram which seems to take months whereas I suggested he should reinsert the tube maybe that would help and only takes five minutes but he is reluctant to do so.
Yes it does sound as if it is tight on the inner lining , the only thing i can think of is that the disc on the outside is not holding the tube in place as i have trouble moving this disc as its very tight over the feeding tube to stop it going in . As i say i have not had any srious issues with mine and i agree that the creams cannot really do any good in healing the stomach lining . Is this your G.P who is saying this or your specialist ? I know when i ever had my old style tube renewed i had to be asleep when they done it and takes up surgery time this is why they fit these balloon ones as its cheap but they seem to forget about patient needs .
My disc is not tight and I have to move it right to the end of the peg to stop the pain and hope the stomach wont 'swallow' it that far. If I press the tube it seems to stop the pain somewhat. It is not my GP but a hospital specialist and a special peg nurse.
All i can suggest is you ask a nurse to come out and change the tube as you should not need to wait for that , i normally wait 3 to 5 days for a tube change , this might solve the disc issue plus if the nurse sees you she might make you case more urgent . Sorry i cannot offer better advice ,i was against this new tube from day one as they are not very good for long term patients and my dietitican has said i can get it changed back ,i even put in a complaint in as i should have been consulted about the change over from the more permanant one to the balloon type . Good luck .
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