what about this one.....my daughters(11yrold) J part of her button is pouring out bile every time we open it. and at night when she tries to feed.....plus around her tube just stays yellow from where it is leaking. she is growing more and more nauseas......i've called the DR. everyday this week about something.....so thought i'd ask you all first...
thanks for being there
tricia
Maddie's G-J tube does this too. We have asked the drs. and they tell us to increase the balloon volume, but when we do that she starts bleeding around it, so we let it leak rather than bleed. Because of our continuous complaints to the GI dr. they have set us up to see the surgery people next week. I hope they have an answer. The leaking causes her to itch like crazy at night and she can't sleep. We are constantly changing the gauze pad around it to keep it as dry as possible. Is your daughter on urso? Let me know what your drs say.....
what is urso? she puts on triamcinolone acetonide
just filled the balloon 2 more ml. maybe that was it!
thanks tricia
Madelyn is on a drug called ursodiol to help her liver. It is more commonly used in patients with gallstones that don't want to have (or can't have) surgery. It is a bile salt that comes from the gallbladder of a bear. Anyway, I have noticed that after we give it to Maddie in her J-tube she seems to produce more bile and has more bile looking stuff vent out of her gastrostomy.
In the UK we have a product called Pelican Protect Wipes which are a bit like babywipes but in single use sachets. If you wipe them around the PEG/PEJ site they form an invisible barrier which prevents whatever is leaking from irritating the skin.
I have also used Gaviscon applied around the site as it neutralises stomach acid and again protects the skin.
I hope this helps in the short term while you find out what is causing the leaking.
thanks i haven't heard of that but i'll check
tricia
I have trouble with my j-tube draining bile when not hooked up to feeds(I'm hooked up 21 hours a day). My doctor gave me a small plug to stick in when I wasn't hooked up. It's made by ROSS and is actually used to help people be able to hook the tube feeds up to their tube, but the cap on it helps more then the one on my tube. I also go through times where it will leak more at my tube site and I also have to add a little more to my balloon then too, but when it isn't a lot I just make sure I keep dry gauze around it. I have to have the granulation tissue that grows up around it taken off with silver nitrate sticks often. When that tissue gets to big the site will bleed a lot and can be painfull. Sometimes the tissue isn't always visuable, when I get a lot of it, some of it will slip back into the site and you can't see as much of it.
I hope you can find a way to keep the draining down, it can be so frustrating when you can't stop the drainige, because it gets on everything. I also have to tape the end of the feeds tubing into my j-tube, because the pressure in my intestines will push it back out and leak all over the place.
Sorry I couldn't really be of any help. I know we have tried sticking many things in the end of the tube to stop it and it was just trial and error till we found something that worked.
Char
what do you think about the fact that it doesn't seem to being going down and being absorbed? She'll put in med's at 8am and go to do it again at 12:00...open it up(without j-feeds, they are hurting too much right now) and out pour the med's ...we know it's them because often they are colored...
any thoughts?
thank gang
tricia
We put all of our meds via the J port...are you using the G for meds or J?..It took calling too many pharmacists at several ped hospitals and almost an act of congress..but we found meds do best going in to the J port.
Hugs,
Lee3
yep we put them allin the J port and that's what is backing up. Crazy bile was pouring out in the middle of the night last night.
could this be CPIO?
thanks tricia
I had an awful time with discharge and bleeding aroung the J-tube site. The more the bile (yellow stuff) came up, the more irritated the site became until it became infected with the MRSA virus and it was removed. The doctors tried to adjust the tube ion me also but it did not seem, to help much. Good Luck,
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