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
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.
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.
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.
It doesn't occur very often and is often different in different people so it is an area where not much research has been done. Surgery is an option but not very successful in many instances and is not done in NZ. It also depends on the skin integrity around the peg site, this is very fragile because of the constant burning by bile. It is really quite a distressing situation, but one does ones best and soldiers on so to speak
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.
I have a rig fitted and find cleaning the skin around the tube with a slight solution of warm salty water then applying Flaminal Hydro, hope this is of some use.
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.
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
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.
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.
My sister has a similar problem. She is a pediatric nurse and has heard of surgical intervention to create a “diversion” or “small pouch” to create more space around the balloon of the tube to allow for full balloon inflation and diversion of the bile down instead of out. Would love to know if anyone has any luck speaking to doctors about this. We have not been able to find any literature on it!
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.
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
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
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)
I'm going through the exact same thing right now. I thought the burning was because of the granulation tissue - never even considered that it could be bile leaking out. I do have a lot of drainage - but never put the two together. I'm definitely going to let my wound nurse that. It's so bad that Tylenol did nothing for the pain so I took a oxycodone and it's not touching the pain either. Breathing even makes it worse. I hope we both find a solution - because I don't know how long I can take this.
Peace, Love and positive healing energy to you.
2 years + down the track and things have not changed, it seems that there is nothing that can be done to stop the bile leakage. Sometimes it stops for an indefinite period then starts up seemingly out of the blue, there appears to be no trigger for it. I am on liquid feed solely and this doesn't leak out, but then that is directed to the jejunum. The bile seems to track uphill by capilliary action.
All that can be done now is to pad the site with very absorbent dressings and coat the wound with vaseline, and change as regularly as required, some days it is hourly others 2 or 3 times a day. The use of lignicaine gel with crushed morphine (Severadol) tablets gives short term pain relief at the site but can only be used intermittently because of issues with the gel and long term use, otherwise on Morphine liquid and methadone which has limitations as the body becomes used to it and is less effective over time, so am having to just get on with it as best I can. The pain from burning of the alkaline bile can be intolerable at times and the skin is very red and sometimes weeping. The medics here have run out of options, there are no more.
It is hard to see the light at the end of the tunnel sometimes, but then I think of my family and 2 nephews and want to be around to see them grow up, so my moods are like swings and round-a-bouts, some days are great, others, not so good, but at the end of the day, I survived a severe trauma against all odds, so I guess there is a purpose to it all - whatever that may be.
I hope things settle down for you and that you can take something from my experience to help you on your journey, pity we can't get together and 'chew the fat' so to speak. I am in New Zealand and I will never be able to travel out of the country now, so just wait in the hope that technology will come up with an answer someday
I work with a patient who has the same problem. We utilize a cream called Calmoseptine, which is very good and affordable. Its a skin barrier cream and helps with possible irritation due to gastric stomach acid. Thank You
Hello i am 33 and have gastroparises i am fed via tube and into the jud have you guys had any luck for 5 years now been suffering with leaking and its unbarable at times
Me to, My wife has a J tube and it leaks day and night with no relief and no one has an answer. Has anyone ever gone to the Mayo clinic with this problem?
I've had my j-tube for 7 years due to gastroparesis, and the bile leakage has increased tremendously. None of the doctors (surgeon, gastroenterologist, interventional radiologist) have any suggestions other than surgery to change the site, which I'm not anxious to do. However, I finally found something that helps with the agonizing skin breakdown and burning. It's called Ilex and it's the only thing that helps (vasiline, triple paste, cavilon, calmoseptine, etc. all don't adhere to the skin at all due to constant leakage). The Ilex dries into a protective wax-like layer that completely shields the skin for 1-3 days. As soon as I feel the burning again I just reapply. I still have the same leakage and am constantly changing absorbent gauze pads but THE PAIN IS GONE! I hope this can help someone else. I don't think it's available in pharmacies but I ordered online. Good luck everyone.
I am having same problem, this bile is no joke!!!! it's amazing how it's in our bodies. Have you evered figured out a solution to this? I tried different amount's of water in the balloon, trying anywhere from 4ml to 12. It say's 7-10ml, on it but the larger the balloon the more it leaks it seems. I noticed when the balloon is out of the intestine & just below the skin the leakage lightens up. First you deflate the balloon then pull the tube slowly out till you see the balloon then insert it back in until the balloon can't be seen, then put the desired amount of water back in balloon say 5ml. need help!!
sorry, there appears to be no surgical process available at present that can prevent it. It only happens in a small number of people and the doctors are unable to say why it happens. There is a procedure known as bile duct bypass but may not be suitable in this case, another we looked at was ducting the bile to an external bag which would require frequent emptying as about 750 mils of bile is secreted daily, and for this reason it was decided against for me because of the high risk of infection. I guess you need to 'google' this and find clinics specializing in gastric problems and contact them with your problem.
I know its a late reply but maybe someone will see it. When i get the severe burn from the leaking, i use stoma powder. It absorbs the moisture and i do put a drsssing on it but i dont tape it which allows it to air out. The moisture can cause it to become yeasty and raw. When the burn is mild i use 3 things that have helped. First applied Lidocaine cream. Then Silver Sulfadine. And then a little of the stoma powder. Then cover it normally with split gauze, tape or even the dressing that has an antibiotic in the gauze itself for bacterial/yeast infections..
I realize my reply is late with regards to the original post but I wish to share in hopes that it helps you or anyone else who comes across this thread. A little background: I am a nurse in the U.S. that specializes in GT and JT cares and am certified in tracheostomy and ventilator nursing. I wish to share a different perspective on the bile leak conundrum. Kudos to those who shared those fantastic suggestions regarding barrier creams and pain management.
Through my patients, I have noted that the bile exit at the JT stoma (most commonly accessed with a Mic-Key button from my experience and region), comes in "waves", preceded by pressure. The sensation has been described to me as akin to the pressure buildup we feel prior to gas exiting our bodies. I cannot confirm, but I suspect gas in our gut inadvertently helps to move the bile towards the easiest and closest exit, which happens to be a stoma.
I suggested a patient try a gas removal (or more accurately, gas collecting) med, such as Gas-X, which is basically simethicone, to positive results. The tablet form can be crushed and drawn up with 5cc water. Baby sections of stores carry the liquid version too. Granted, it will not eliminate the bile completely, but it can significantly lower the amount and frequency of the leakage.
Another tidbit that has helped my patients is another over the counter med, called Preparation H (ideally in gel form). Yes, it is for hemorrhoids. But it's basic action is to "tighten" skin. Basically it's simply witch hazel solution with some other nifty things thrown in. The idea there is to tackle the looseness of the stoma in relation to the tube or the 'neck' of the Mic-Key. Unfortunately, due to the delicate quality of the ulcerated skin of the stoma, it may initially sting a little. But it will tighten the stoma around the tube for a more snug fit, which discourages the free bile flow around the tube.
Granted, both meds and their applications needs to be done on a regular occurrence to keep the bile leak in check. Using thick absorbent material under the button helps to secure the "neck" of the button too, which allows the balloon inside to more snugly fit into the most superficial position inside.
I have another idea, in theory only, for a longer interval of relief but it needs more research prior to sharing. I've shared the above in hopes that it might help just one person achieve some relief. God bless! hugs!!
my reply is late sorry my english is not good hi we have same problem for 3 years my father is bedridden and he has a jejunostomy tube direct to small intestine we are using colostomy bag bile drainage to the bag may be your doctor could insert tube direct to the jejunom instead of stomach
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