Managing J-G Tube Feedings

By stekcsf
Posted March 12, 2008 at 8:10 pm

hello
this is our cycle:
My 11 yr old daughter is also on J-feeds only. she can only tolerate 45 ml/hr. 24/7 which she should really have a little more, but she's doing the best she can at this time. Often she gets this pain and has to turn off her feeds, most days they go back on in an hour or so. I don't think we have issues with it flushing, although it does sometimes back up if she doesn't use the extender to flush. But about every 3-4 weeks she is in so much pain she just says she can't do it. Then she ends up in the hospital for IV's. The Dr.also checks for tube placement and tell us it's fine. She is on Elivil for this pain. But if i try to sneak and turn up her feeds, she ends up vomiting and turning off because of the pain. I don't try that anymore. In the past she could do 75 ml. but not anymore.

i think this can be just part of it. The GI said it's worse like this in the winter for his kids.
But she also has this hyper senstivity in intestines (don't know ofical name)

hope this helps
tricia

By Char
Posted March 14, 2008 at 12:44 pm

When I first got sick I was put on J-tube feeds, but around 6 months later was put on TPN. I couldn't keep a j-tube in place, and then really couldn't tolerate the feeds even when it was in place. I spent about 3 years on TPN. I got my pacer during those years, but it takes a while to see results so I stayed on the TPN for a while. We then started feeds and keep me on TPN until I was getting more feeds in. I've been on just j-tube feeds again for a couple of years now. I've always had a problem tolerating high rates. We add water into my feeds to help prevent dehydration and it also decreasses the thickness of the feeds, which helps. My feeds run at 80cc/hr for 21 hours a day. I get pain from my feeds, but with them at 80cc/hr I get to take 3 breaks a day, a hour each break. I LOVE my breaks. Just being able to let my intestines rest a little helps. Another thing is constipation can make a huge difference. You can't expect to be able to keep pumping stuff in if nothing is coming out. I have to do enemas to go, but it is worth it to decrease how much is in my intestines. I have spells every so often (sometimes every month, the longest I've gone is about 4 months one time) where I can't tolerate feeds at all and everything gets worse, so I end up off feeds and in the hospital on IV fluids (we got rid of my central line when I went off TPN and got my meds. switched from IV to my tube, because of problems I have had with serious infections). We stop feeds for a while and then start them back much slower and slowly increase them over many days. I'm usually in the hospital for 2-3 weeks. This last time I was in for a month and just got out 3 days ago.
I've had doctors say that they feeds are going at such a slow rate that I shouldn't be having any problem tolerating them, but you really can't understand the pain unless you have experienced it. They really can hurt, even at a really slow rate.
I hope things improve for your son.
Char

By stekcsf
Posted March 15, 2008 at 8:05 pm

Char
I appreciate knowing that the feeds hurt you at a low rate too. My daughter is always being told to turn them up(or to try) and she keeps saying they hurt. I have followed you and your story, your info is always so helpful to me as a mother of a GP'er.

thanks for all your input

tricia

By Kozush
Posted March 18, 2008 at 5:48 am

I've also had a lot of problems tolerating tube feeds and it is due to a slow small bowel motility as well. I also have problems taking medications through my tube, because it causes more nausea and pain and you can literally see my belly distend as I push medication or even just water flushes though. I was getting hydration and nausea medication through a PICC line until a very unwise doctor pulled it. 10 days later I ended up hospitalized for dehydration, nausea/vomiting and severe abdominal pain. Needless to say, a new doctor I've started seeing really thinks I should be restarted on all my IV treatments, so I'm getting a new PICC line on Wednesday. It also looks like I might need TPN.

As far as pain goes, I have a lot of problems with it and at one point was on IV pain medication at home. I had tried Fentanyl patches, which work well for some people, but for me it was a bust, even at a significantly high dose (200 mcg/hr) I had no effect at all on anything. I started seeing a pain specialist and today he placed me on Methadone, which is a long acting, very potent narcotic that can still be crushed and pushed through the tube. For breakthrough medication I'm taking morphine concentrated solution 20 mg/ml (brand name is Roxanol). I know that obviously both medications are available IV, so I brought up the possibility of taking the methadone IV, but he scoffed at the idea. A week ago he wanted me to take Kadian (24 hour morphine, it's in a capsule that can be opened up and there are beads in there, MUCH too big for my poor 10 french J tube) by MOUTH with a little applesauce, needless to say it failed miserably because I kept vomiting up the medication, long before it'd even get a chance to work. He really didn't quite comprehend how slow my stomach is and how much I vomit. The thinking last week was that he'd try me on the Fentanyl patch again if that didn't work, then I'd go back to the IV DIlaudid. Well like I said, this week I switched to the Methadone, and still on the Roxanol, both which go through my tube which still causes issues.

I'm going to the University of Michigan's gastrointestinal motility clinic to see an intestinal specialist who's had experience with Ehlers-Danlos Syndrome to see what he says and to run a bunch of tests/studies to see what exactly my small bowel is doing (or not doing). If it comes back that I definitely should be on TPN because my small bowel is pretty bad off, then I'm going to talk to all of my doctors and try to get as many medications as possible IV to minimize the stress on my small intestine. If it really is that bad, and I have a note from the GI there, I'm hoping that my pain doctor will be willing to hav my on the IV pain meds, as it is my strong believe that we are stressing out an already stressed out GI system by trying to get everything through my tube.

Unlike Char, I've had absolutely no luck with the pacer, and it really isn't that uncommon from what I hear. It has more of an effect on diabetics, but there are a lot of idiopathic cases that get some relief as well. However, my GP is caused by a genetic connective tissue disorder so maybe that impacts it, or maybe not, since there are enough people with idiopathic or other types of GP that don't get any or much benefit from the pacer. There's just so little known about GP and the mechanisms of the pacer, how exactly it relieves some people's symptoms. So as more knowledge is gained, perhaps they'll come up with a better version and will help many more people. I've also heard that they're working on a possible pacer extension down into the small and even the large bowel.

Hope I was able to help, feel free to message me anytime if you have questions.

Oh one more thing I've forgotten to mention, we believe that I've had gastroparesis since I was 6-7 years old, but wasn't diagnosed until I was about 19ish. Similar thing happened with my EDS, genetic so I've had it all my life, but wasn't diagnosed until I was 16. Many are never diagnosed or not until they're even in their 40's or so. Doctors can be so clueless sometimes.

Sarah

By stekcsf
Posted March 19, 2008 at 10:04 am

Sarah
I hadn't even thought the the med's through the J-tube could cause more pain. It's a no win situation.
we counted yesterday she threw up 20 times. Do you not do anything by mouth? do you find that if you stop everything by mouth you feel better? she is only taking popsycles for extra hydration, but as you see they make her vomit more. I'm going to ask about one of those patches.

thanks tricia

By JenD
Posted March 29, 2008 at 8:32 am

Hi B,

I have to ditto what everyone has said here. I too have problems with j-tube feeds. Probably due to small bowel dysmotility. Right now I can not tolerate more than about 30 ml/hr. If I turn it up I get very bloated, abdominal pain and often vomiting. Sometimes I just have to stop running it for several hours because I can't take it anymore. I was on TPN but recently had to go off because my insurance stopped covering it. I may have to be hospitalized again soon for TPN and hydration. I am appealing the insurance company's decision and I will be getting on Medicare soon but it is going to be hard for me for a while.

Anyway, it sounds like this is pretty common for those of us with GP. My doctor says that often the nerve near the intestine gets irritated by feeds and sends abnormal signals to the stomach causing the vomiting. I also have chronic abdominal pain and have to take Lortab in order to tolerate the pain regardless of feedings.

You may need to look into getting your son on TPN again for a while if it gets bad.

Good luck,
Jen

By Char
Posted April 1, 2008 at 8:49 am

Don't feel bad about not thinking about that the meds. could be adding to the discomfort. So many people, doctors included, don't think the meds. should bother us. I hate it when my nausea meds. just simply make the nausea worse, because it means I have to put something through my tube. By the time I get to where I can't tolerate the tube meds. at all is when I end up in the hospital, in a crash. Otherwise I can tolerate it most of the time, but it still causes discomfert. Hope this helps.

By Lee3
Posted April 3, 2008 at 9:34 am

When my daughter was younger, a toddler and preschool she was diagnosed with severe silent GERD(reflux). At 2 1/2 she had an aspiration in her sleep and collapsed half her right lung on refluxed vomit. She also developed increasing problems with swallowing and would flap her arms up and down to get food down and often turn red and choke. As it was she had failure to thrive from 6 months old which no one understood . Because of her older brother's diagnosis of multiple life threatening food allergies her GI's were sure she had a form of allergic gut disorder, eosinophilic enteritis. She had a GJ tube put in and was put on J feeds. She did NOT tolerate the rates of feeding that the GI expected and continued to vomit even J feeds until I found a lower rate that she could handle. She did well finally for about a year and actually gained weight and grew with a few new problems along the way; three bone fractures with little trauma, found to be osteoporotic and have joing hypermobility a long work up for her and her siblings for Osteogenisis imperfect and Ehlers Danlos syndrome with no answers. At 4 1/2 she developed a total intolerance to J feeds with constant vomiting and repeatd small bowel overgrowth infections,etc and spent most of 2002 on TPN. She earned a new label of Chronic intestinal pseudo obstruction. Reading the descriptions here of kids who supposed have gastric issues only but are unable to process or tolerate jejunal feeds makes me wonder if there is not more to their diagnosis that has yet to be idenitified? Have your children had intestinal motility testing (motility testing is NOT a perfect science but can help in some cases to recognize CIPO), when they are having these episodes of pain, vomiting etc; have your kids had abdominal x-rays that revealed "ileus", intestine shut down with what is called air fluid levels noted on the x-rays and no bowel sounds or peristalisis for no apparent reason, acting like they have a bowel obstruction vomiting bile, distention, pain, lack of BM but there is NO mechanical obstruction when investigated.
In my daughter's case at 10 1/2 now her CIPO has been pregressive over years. She tolerated Jejunal feeds off and on for most of 2003 through early 2007 but had increasing problems with infections in her small bowel and has developed severe autoimmune disease. We now also know she has immune deficiency/dysfunction, her colon which appeared normal on studies in late 2002 is now very abnormal, dilated and redundant and much of it has no peristalisis or movement at all now. She has been on TPN now since last summer and is on multiple medications to treat her issues. We are seeking a third surgical consult in hopes we can find a surgeon who may bypass her colon or perform an ileostomy to help reduce the small bowel infections, aid her small intestine motility though it may not be ideal it is better then her large intestine and hopefully allow her to eat some again. I have found over the last 10 years a great deal of ignorance, arrogance, secrecy, and avoidance by many physicians to be candid and forth coming about what they knew, did not know and were unable to explain or really understand. We've been blessed the last two years to find an incredible supportive and very knowledgable research immunologist and GI to help her, but it has been a long and difficult process. My heart goes out to all of you struggling with the trial and error of trying to find what can and will help your child and understanding of what is wrong! I just wanted to share with you our story . Hang tough and if I can help in any way please feel free to email me.
Lee3

By Peggypeg
Posted April 4, 2008 at 3:54 am

Hi!

So sorry you are having these problems.

Is there any association between tolerating the feed going through and the actual position you/your child is lying on one side or the other or how they are sitting etc?

I have had contact with somebody who has said that this makes a huge difference!

I know I have to be upright when my PEG feed is going through but that is for different reasons eg severe reflux and risks of inhalation amongst others.

No idea if this makes any sense whatsoever ..some how I doubt it will but as I say I am just sharing a comment somebody else made to me a fair while ago and its worth sharing just in case!

Chris
www.mypeggypeg.blogpsot.com

By song2hymn
Posted April 7, 2008 at 6:25 pm

I am currently having trouble with my J tube feedings. I used to be able to run the rate at 75 so I could feed at night only. Now I have to run the rate at 40 so I am on enteral feedings 24 hours a day.

My GI doctor is thinking maybe the balloon is causing the problem. So he is ordering a mic-key button to replace my J tube with.

I have to unhook for a couple of hours sometimes because the formula gets stuck and i have to allow it time to move through.

By DK9497
Posted April 13, 2008 at 2:59 pm

Jen,

I am really glad to hear that other people are having such difficulty with their j-tubes. My doctor's are all up in arms because I can not get my feedings higher than a rate of 30. Additionally, I am unable to tolerate the canned formulas, so I have had to make homemade tube feeds. I have a PICC line as well and have to be on TPN for 12 hrs at night to supplement my j-tube feedings.

I recently had exploratory surgery to see why I wasn't able to tolerate the feedings and the surgeon did not find much. He removed the original tube and replaced it with my current tube, which seems to work much better.

Best of luck to you!

By stekcsf
Posted June 4, 2008 at 5:18 pm

O'k let's talk J tube feeds again..(please) my daughter had the 2nd monametry study, Dr. said no contractions in stomach, but normal ones in intestines. Daughter got j-tube placed 3 weeks ago. Dr says she should be moving the rate up to 60 or 80 ....but we are still on 20! i TRY to get her to move it up but she says it makes her more sick and more pain.
what's a mom to do?
we see Dr. tomorrow

thanks tricia

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