Bile leaking from PEG-J site causing severe burning to exterior skin around the site

Does anyone else have this issue? I had the PEG-J put in earlier this year and am feed solely through this with Nutrison concentrate. My stomach is severely damaged and the feed by-passes it to go directly into the jejunum. The site is oozing bile all day and night causing severe burning to the stoma and the skin for about 3 or 4 cm's around the site. I use cavilon cream to help protect the area but this has little effect. My skin often bleeds because of this and the pain is intolerable. The Doctors have little idea as to what to do as my situation is not at all common and they haven't come across this situation ( in New Zealand). I have tried fitting a tube to the stomach part of the PEG to help drain it which only helps minimally as the amount of bile produced is, to my mind, excessive.

Any input will be gratefully received. Many thanks

26 Replies

  • This may be of no use to you whatsoever but in your situation I suppose anything is worth trying. I started taking a probiotic in an attempt to reduce bile reflux and since taking it, it has reduced both in incidence and severity. I have no idea if this will help you by reducing the amount of bile being produced but it isn't going to do you any harm if you try it. I'm taking Acidolphilus with pectin, I buy it from a health food shop, but you can get it from Amazon as well. I do hope this is some help to you.

  • Thank you. Will start probiotics soon once antibiotic course has finished. I believe good gut health will be beneficial even if bile continues

  • When I'm on antibiotics I always have natural yoghurt, my doc recommended it years ago, saying that it helped to put back some of the good bacteria that the antibiotics knocked out. You could ask your doc if you can take Acidophilus while still on antibio's - they do seem to make stomach and digestive problems worse.

  • Thanks.

    Can't have yoghurt down my tube, too thick, but can put "Yakkult' down which is quite watery. On antibiotics just now so will give it a go once over the course of antibiotics. Good gut health is crucial to well-being and worth trying.

  • Sorry, wasn't thinking - of course it's too thick 😫, yakkult's far more suitable for you.

  • Thank you, will check this out tomorrow, anything to seewhat is available

  • Hi. I feel your pain Sheryn, I too used to be fed this way and I had constant leakage. My surgeon said it's because of it being in small bowel that this happens and really not much can be done. In normal cases it would be in stomach but because we no longer have that part there the small bowel is where it is. When mine got real bad I would wear a Stoma bag and that protected the skin and all contents would go into bag. I eventually took mine out as I was getting constant infections. The healing process was just as bad and after a long time I was taken into hospital for small operation to close site as it wasn't healing. I now have to try maintain my weight otherwise it will go back in. It seems like you still need yours. I also got a good antibiotic cream which did a fab job. I also used to use kendal foam dressings and cut it to shape to fit around my tube, they too are good. I hope u find something to ease the pain of it as it is very painful. Good luck x

  • Many thanks for your feedback, currently using similar dressing which is good but doesn't stop bile burning skin around the site. No mention of stoma bags here but will make enquiries at the hospital next visit.

  • Sometimes placing petrolatum, such as Vaseline, around the stoma site can protect the skin and keep the bile from contacting the skin. This is temporary, but can help protect the skin from the leakage. \wc

  • We have tried this and zinc and castor oil cream but as the site is wet and raw this just 'floats' on the surface and hasn't helped as it won't adhere to the skin around the site. We have also tried cavilon cream which is thinner and acts as a barrier for the overall area and it does work as long as dressings are changed as soon as they get saturated, which, at times is, within 1/2 hour. Really want to stop the bile oozing out and spasms which often accompany a faster rate of flow.

    Thanks for your input.

  • I have been suffering bile reflux. I worked it out that the bile was there because I was not eating any fat to make use of the bile, causing it to build up. 2 weeks ago I started to have cream in my coffee to add fat. Then put butter in my pasta. This seems to have done the trick as I haven't woken up choking on bile for 8 days now. I hope this will be of some use to you. I am getting through a pot of cream a day.

  • Thanks, but I am solely tube feed and unable to swallow. I am not allowed to put anything apart from the liquid feed, Nutrison, and liquid medications through the tube as it is very narrow and blocks very easily

  • I am told on good authority that this is a common problem when a long term plastic tube is placed in the bowel. The only definitive solution is to remove the tube to see if the hole closes, and then place a feeding jejunostomy with open surgery

  • Thanks for your input.

  • There has got to be a better answer! My poor 88 yr old mother is suffering with burned skin and acid reflux. Where are the specialists??

  • if you are at home and cannot get advice, I suggest you ring the ward where your mother was an in patient for the surgery as the ward staff nurse may be able to help.

  • Hi Jannyca,

    It has been an on-going issue, the Specialists here (in New Zealand) are scratching their heads. I have an idea they have consulted overseas specialists but it is not a common issue so not an easy quick fix.

    Going into hospital shortly for yet another trial of drugs of some sort to try and alleviate the problem.

    I do feel for your Mum, her skin is already compromised with her older age, she must feel so miserable.

  • I am a little confused as to the layout of your J-tube. Mine (which I had for two months, with nothing allowed orally for six weeks) was placed during my esophagectomy, and came out through the skin in my left abdomen.

    I am trying to visualize what you are referring to as "fitting a tube to the stomach part of the PEG".

    I would very much like to help you if at all possible. I am a pharmacist with training and experience in clinical nutrition, in addition to having first-hand experience. I must admit that I am at a loss with picturing your particular J-tube layout.

    Bile is indeed a nasty substance, and has no business outside the jejunum and ileum.

  • Thanks.

    I have a hole from the outside into my stomach, a MIC-Key has been placed here with a tube about 2.5 cm long going into the stomach and another tube about 30 cm long through the pyloric sphincter down into the jejunum. I put nothing into the stomach tube unless directed by the Doctor, all my feed goes directly into the jejunum. For some unknown reason, the bile is coming up into my stomach and out through the stoma and at times, through the tube. When it is really bad I have horrible griping and wrenching agonizing pains in my stomach and the amount of bile is a constant flow which lasts for several days.

  • I am unfamiliar with the MIC-Key product, but have tried to learn a bit about it. My J-tube was simply a foley catheter. Easy, but still problems over the two months of continuous feeds.

    The MIC-Key tube should be a one-way valve, so leakage through the tube may signal some defect in the device. If there is leakage around the MIC-Key device (stoma), then checking to make sure the balloon is fully filled with liquid may help. This is just after a bit of boning up on the MIC-Key, but I do have another question.

    Are you taking any prokinetic agents (erythromycin or metoclopramide or similar)? These keep the bowels moving, and may decrease the amount of fluid pressure building up in the jejunum. Drugs like ranitidine (Zantac) can decrease the volume of acid and other digestive fluids, perhaps lessening the amount to back up and leak out of the stoma. My other concern would be the volume of the tube feedings, and maybe the volume and rate of feedings are too large for you to properly handle.

    These are just a few things off the top of my head. Why did the docs choose to put a tube into your stomach as well as into the jejunum? I hope you can find the cause, and can locate something to help your situation. I wish I could be of more help. \wc

  • Hi,

    Thanks for that. The balloon has 5 mL in which is what is recommended by manufacturer. It seems that when the griping/wrenching starts there is a great deal more pressure, stomach feels like it has blown up, it is hard and distended. My stomach is badly ulcerated and only about 1/3 its original capacity ( due to a moment of gross stupidity on my part) and the oesophagus is full of scar tissue and closed.

    I use Metaclopramide which seems to help under normal circumstances but not when it is griping. I occasionally use Acidex directly into the stomach but really the HCl isn't a bother. I was using Ranitidine but the Dr told me to discontinue this. The griping issue comes and goes, but generally strikes with a vengeance when it does, it comes on suddenly and not necessarily when feed is going through.

    I can put water through at a much faster rate, like 250 - 400 mL per hour, but the liquid feed I can only tolerate about 60 mL /ph and build up to about 90. I seem to have an intolerance to the feed and get hot and cold sweats, and the shakes. I just have to persist as there is no alternative available here in NZ.

    The original tube only went into the stomach but because of various issues the Drs decided to go to the jejunum, which has been far better ( bile leaked when it was just in my stomach as well. ) The Drs are looking at surgery to get things working again so want my stomach functioning. They are doing a bit of research as this type of surgery is not something they have done on a regular basis - if at all. It is all supposition at present.

    I am on regular pain killers as the pain can be very severe, these do take the edge off.

    I do appreciate your in put, it is great to have the views of someone who has experience of the use of a feeding tube and with medical knowledge

  • I sympathize greatly with your plight. It does seem that you aren't tolerating the current feeding product well, but don't have any reasonable alternatives. Some of your symptoms (distended belly, severe pain) may signal a blockage of the intestines, or perhaps the intestines twisting on themselves. And the sweats and bile accumulation may be a sign of a feeding rate that is too rapid for you to tolerate well.

    Do you do 24 hour feedings or nighttime feeds? If intermittent, then maybe a lower rate round-the-clock would be better.

    My best advise is to find the best and most experienced surgeon that you can find, even if it means travelling out of your country. I don't know how health insurance works in NZ, and whether travelling for treatment is even an option.

    Good luck, and I can help at all please let me know. \wc

  • I do not have any experience of a PEG, but-

    1) Have you considered a silicone cream for skin protection? This would certainly spread/adhere to wet tissues and not get diluted off. Also it is compatible with all rubbers/plastics.

    2) Having had a cholysystectomy at the same time as my Ivor Lewis I suffer from a continuous excess flow of unconcentrated bile.This creates many unpleasant side effects but can be dealt with quite effectively by taking a sequestration agent such as Questran.

    This is an ionic resin which binds to and passivates the corrosive elements in the bile.

    Normally it is taken orally and so is available to meet bile as it emerges from the bile duct into the duodenum -- that is quite a way upstream from your PEG site.

    I wonder if your medics could envisage adding a small component of pre-hydrated Questran to your Nutrison without it coagulating in the tube?

    3)Your "shock" symptoms are due to the K/L cells in the ileum over reacting to the sugars in your feed stock. This is a manifestation akin to 'late' dumping. It might be controlled by adjusting the carbohydrate contents (if feasible) and/or flow rate.

  • Thank you. I will certainly speak to my doctor about the information you have provided, most helpful.I have had a good few days but yesterday it started up again and now oozing a creamy substance -which is a new issue- as well as bile but nowhere as severe as it has been (yet) :-)

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