Hi --

Barry started his 6th week of treatment with a little excitement -- we were just purging his PEG (which he hasn't used yet) when it just -- came out! The little balloon at the end had gotten deflated. Oops! Now what? I called the triage nurse and she called our nurse, who called back and said she'd look when we got in for treatment. Apparently several g-tubes (and one j-tube) had failed in last couple of days -- 3 today! -- and Hopkins is sending the whole batch (of unused ones) back to the manufacturer. Nice. Luckily he's not dependent on it for hydration or food.

While we were driving up to Baltimore, the medical and radiation nurses and the nutritionist all conferred and concluded Barry should just leave it out. The rationale being he has a week left, he's not using it, maintaining weight pretty well and it would involve another procedure with 8 hour's fasting and sedation which left him sick for a few days the first time (and he lost 4 pounds) plus he'd miss a day's treatment. He agreed, saying he wouldn't go through that again! So now we just have to watch for any infection and make absolutely sure he drinks and eats enough. Just go to next level of pain-killers if necessary, I guess.

Has anyone else had this happen to them?

Gail and Barry

Hi
No I've not been there but my understanding is that a PEG needs to be put back with in a short time scale, so if he has got this far without one, go with the flow. BUT remember this is not written in stone and can be changed at anytime in the furture if needed.
Good Luck
Sunshine...love and hugs
Helen

Yes, they said within 24 hours if using same incision -- the other two of today's "failures" were schduled for re-insertion tomorrow as both patients are to some extent tube-dependent -- they couldn't do it today because both had eaten and drunk and they have to have empty stomachs.

Gail

Gail,

I remember back in October 2000 we were scheduled to go on a trip, perhaps my mother's last one in her life as she was living way beyond all the medical expert's expectations. The night before we were to catch a plane to Miami and then Freeport, her tube came out. It was a GJ tube that had a long extension that went past the jejunum as she had to have special liquid that was in a partially-digested state, to no get to technical.

Anyway, at 8 pm the night before it came out and this was the 3rd one that had come out. The doctor told me to just re-insert it and it would work it's way back down, tape it up and bring her in after we got back. Otherwise, they would have to admit her and cancel the trip. He felt the trip under the circumstances might very well be her last amd she would enjoy it.

On our last night there, she pulled it out in the middle of the night. We still managed to re-insert it, tape it and begin the 14 hour journey home. She did get a fungal infection but otherwise we had a great time.

If Barry is eating well I guess I would trust the medical folks. I didn't use mine a lot anyway since when I was nauseas it didn't matter if it went down the throat or in the tube...the after effect was exacty the same.

Ed

Odd, the gastroenterologist told my father to expect this to happen. The MD explained that the balloon would deflate and to just put it back in and tape it in place. We are expecting it to come out? I would go straight to the surgeon who placed it.

eek. It doesn't sound so bad in Barry's case but it would be a nightmare for someone else dependent on it (which I still am--unfortuantely) to get most of their food and nutrition. Plus I would HATE having to go through that surgery again. Yikes.

There was obviously a difference of opinion even at Hopkins as to how to proceed -- the new RO resident said "they will just stick one back in the same opening, won't need sedation or fasting" (but it would have had to have been a new peg, the old one was defective). The nutritionist agreed, but neither of our two nurses (medical and radiation) did, saying "they will want to re-do whole thing and with no food or water in stomach." Anyway, our radiation nurse called the surgery area to make sure and they said -- "8 hours' fasting, sedation, new stitches etc." and she and Barry said to them, "oh, forget it..."

Barry was extra careful yesterday (firm lectures from RO and nutritionist to EAT and DRINK!) and his weight today was same as yesterday's. However he has his Friday afternoon queasies again and probably will eat lightly today -- but has a weekend to make it up!

TGIF!

Gail

I don't like OUR (non-professional) suggestion that these tubes can be re-inserted by the patient! If anyone else reading this has a problem with a tube that comes out PLEASE CONTACT YOUR DOCTOR!!

I re-read all of these responses and I don't think that any reply suggested what they should do? No one even merely implied: "Hey, just stick it back in Gail..." ?
Isn't it generally known in this forum that stories and experiences are exchanged?
Yeah Gail, my dad has a "Flakey" stomach. You guys have got to be finishing soon?

Speaking as not only the caregiver of my MIL with a feeding tube these last 3 yrs, but also my son who has had one for 7+ yrs, tubes do fall out. They have both had it fall out more than once (sometimes my son's gets pulled out even with the balloon inflated!). We changed both of them to gastrostomy buttons, much easier for feeds, and with the balloon style it is extremely easy to replace and in fact we have been told to replace them every 3 months. Now... it is suggested not to do this until the stoma is at least 6 weeks old and healed.

With the button, you attach an extension whenever you do a feed and detach it when finished. The button itself looks kinda like where you blow air into a beach ball. Nice to have a flat belly and no tube hanging down all the time.

When my son AND my MIL received their gastrostomies we were given a small foley style tube that we had for emergencies should the tube fall out on its own, and instructed how to use it so that the stoma did not close up. In some patients it has been known to close up within a couple of hours, or less.

I am really surprised that your surgeons/GI's are not informing their patients of this possibility and preparing them so they can take care of it themselves should it happen. But, maybe that is the difference between temporary vs permanent? Interesting! Or maybe it is the difference between the pediatric world and the adult world... I have found our ped docs are much more forthcoming and accepting of tube feeds than adult docs for my MIL are.

Anyway... just thought I would share our experiences...

Heidi

Hi Heidi --

You know, I wondered why they did not use some kind of implant to which you simply attached the tube while feeding and which would be much less vulnerable to being pulled out. Seems a better solution, especially since several of the patients we see every day are obviously going to be on their tubes for a while. Nice to know they are available, now why not used more? Will ask nurses.

In any case, Barry is peg-less and will be so he has to EAT -- so far OK, he's not even on the strongest pain-killers yet. Will see what the next weeks bring...

Gail

Unfortunately, even the implanted tubes can come out. About 14 years ago, my husband was hospitalized for weeks with a major G-I problem and was restricted to IV/TPN feeding through an implanted tube. Even after he came home, he still had to use it exclusively for awhile, and one night the implant popped out at about 3AM. I immediately got him into the car and drove to the ER in a panic, and they calmly decided that he could get back onto soft foods at that point and left the tube out.

Cathy

Cathy,

I am a little confused... IV nutrition/TPN feeding is through a surgically placed central line (or PICC line) into the blood stream (my son has been getting most of his nutrition that way since he was an infant) and a feeding tube goes through the abdominal skin to the stomach and uses a formula. You would NEVER want to put formula in the central line, nor TPN into the stomach...

Gail,

the gastrostomy buttons I have the most experience with are the AMT mini button and the Mic-Key button, both use a water filled balloon to hold it in place. There is also the BARD button but it requires a physician to place it and change it, and it causes some discomfort. It can however be left in for a year or more. I know there are other brands out there, I am just not as familiar with them.

Heidi (daughter in law to the bravest woman I know... oral cancer 6 yrs ago, esophageal 3 yrs ago, skin earlier this year and rediagnosed with oral this week)

Heidi,

I probably should have clarified a bit -- when he was first in he had a conventional IV hookup, but when it became clear he couldn't have anything by mouth for an extended time, they put in a surgically placed line. It was that line that came out, notwithstanding the fact that it was deeply embedded (or so we thought).

Cathy

Ok, I understand now Cathy! I am used to calling the central lines either lines or CVL, not tubes.

I have seen those lines come out as well, many of the children and young adults on my TPN listserv have had that happen, and we have found that keeping a close eye on the length (measuring the length with each dressing change)of the line so you can see if it is pulling out is a big help. They do make some that are tunneled under the skin, they have a velcro like cuff on them that is "supposed" to keep it from slipping out, but there also some that have to be stitched in to remain where they are supposed to... those tend to be the ones that fall out. I never could figure out why the docs use that kind anyway if it was supposed to be a long term placement.

Thankfully Sean's have never fallen out, though his first baby line broke 9 times during the year he had it! It actually handled that many repairs though, so we were thankful not to have to have him go through surgery again and again.

Heidi

{I don't like OUR (non-professional) suggestion that these tubes can be re-inserted by the patient! If anyone else reading this has a problem with a tube that comes out PLEASE CONTACT YOUR DOCTOR!!}

Shawna, The reason I posted that is because of these three comments:

{"On our last night there, she pulled it out in the middle of the night. We still managed to re-insert it, tape it and begin the 14 hour journey home."}

{"The MD explained that the balloon would deflate and to just put it back in and tape it in place."}

{"RO resident said "they will just stick one back in the same opening, won't need sedation or fasting""}

My comment was not intended to offend the writers. Please remember there are possibly thousands of readers of these forum pages. For some, English may not be their primary language. This page will be here on the forum for many months and might be found by a search. A casual read of the above sentences might have someone believe that these tubes can be put back by the patient in every situation. I do not think it is a good idea to assume that is true. I do believe it is an issue that the individual needs to discuss with their doctor.

My words "non professional" are not to be confused with un-professional. In addition, I know that some of you folks really are in the "profession", just a reminder that people should not rely on the the information here as professional advice. (even if it is better than their own professional gives)

Hi all --
I was a little leery of "just sticking it back in" as well -- OK, obviously through the abdominal stoma is easy but how can you be sure that it is back into the stomach? The stomach wall was being held against the inner abdominal wall by the peg -- once out, there is no easy way to be sure the two holes are still aligned. I wouldn't be very happy about pouring 8 ounces of Nutren into someone's abdominal cavity! That's why Hopkins insisted on re-doing it with empty stomach, so they could be sure to get the peg back into the right spot using endoscope.

In any case, Barry's doing OK -- he ate over 2000 calories yesterday (lot easier to do on non-treatment days) and is into his 6th week so we are keeping our fingers crossed...

Gail

Gail,

my understanding is that as the stoma (the area that the tube goes through from the surface of the abdomen to the stomach) heals the two begin to grow together. once it has been in 6 weeks or so they have healed enough that as long as you get a new tube in fairly soon (like within a few minutes) there should be no real problem.

No matter what however, you should always follow doctor advice. Whenever my son or MIL get a new "appendage" or appliance I make sure to ask the docs what I should do if it fall out, has a complication I do not understand or know already how to deal with, etc. Thankfully we have never had a problem that wasn't fairly easy to fix.

Heidi

Barry's tube had only been in about 5 weeks, and there was a lot of range of motion so it looked as if the stomach and internal abdominal wall were not healed together -- in fact this may have contributed to the failure, who knows?

Anyway, so far so good re his eating -- and only 7 more days! (Of course we know that it will be a long uphill from that last day of treatment...)

Gail

And to clarify...

My mother had days if not weeks to live and our choice was to cancel the final trip of her life and with the guidance of the Department Head of the OB/GYN Oncology unit of UT Southwestern Medical Center (the next NCCN member) we re-inserted the tube and had our next door neighbor (family physician at a medical system that uses UT Southwestern physicians exclusively) come and review the process and examine her prior to the trip.

In my case, my stoma healed within minutes after removing my Mic Key. I called the doctor after I got my car from the parking garage and asked when it would be okay to eat and he said now so I stopped the next block and had lunch...fried chicken!

Ed

My Moms 1st g-tube/peg tube came out within 2=3 weeks of getting it. Due to her getting 100% of food via tube, it was immediatly replaced even tho she had liquid earlier that day.

They didn't use the same site, made another incision right beside it. (which terrified me due to risk of infection).

I was also told it wasn't a balloon on the inside, instead the doc said it was a round ring. The booklet we were given had said balloon!? I'm sooo protective of it now that I'm probably ridiculous.

Dee

After my mother's came out the third time we received a call from a social worker asking if there was anything going on at home or if we needed a referral to a psychiatrist.

Ed

Hi all,
I have been on peg feed for well over four years now and am totally dependent on it as I do not have a food passage ( it closed due to non usage because of a problem that occured due to an overdose of radiation). The biggest problem the people in India face is that all peg tubes have to be imported into the country and they dont come cheap. An ordinary person going through this trauma will never be able to afford one. The place I live in - New Delhi, the capital - we have just one company that imports and stocks the peg tubes and just imagine what would happen should the peg "pop" out and the size one is using is not available.

The peg tube in my case has popped out twice in the last four years plus and both because the baloon inside deflated for unknown reasons. Each time I was far away from the hospital where I was being treated and then the problem of getting the tube. I was lucky that in both instances the tubes were available but each time I had to wait almost seven to eight hours for its delivery! I recall the last time it happened - about two month ago - I was at work and suddenly I felt my vest all wet. I thought the peg must have opened out and the feed had leaked out - but when I picked up my shirt and vest and saw the entire vest red in colour and the peg just there - out and deflated. Blood was freely flowing out and I did not have too many options but to call the importer and then call my doctor who too was not available for a good five hours as he was in an emergency. I grabbed the end of the peg and as there was nothing I could do - just removed it and held on to my wound with a towel. I then called my wife - who rushed to pick up the tube rather then wait for its delivery and I drove back home - one hand on the steering and the other alternating between holding the wound an changing gears!!
I reached the hospital in about five hours of the peg having popped out and the doctor walked in and put in the new one with the minimum of fuss. I really do not know how to explain my feelings on that day or the earlier incident - but to be very honest - I was not scared or worried for even a moment - though everyone around me thought the world was coming to an end. I know it sounds unbelievable - but honest to God it is the truth.

Wow - that took some writing!!!
_______________________________________________
Ananth - 47 years old - VP of a German multinational, diagnosed with cancer of the larynx in its final ( 4th ) stage April 2000. Refused surgery and opted for radiation and chemo and kept the surgery option as a second line of defence. I am today cancer free - January 2004- and still have my voice with my larynx both that were totally fixed now moving in unison. The only side effect that remains is the peg and a temprory trachostomy and both are expected to be removed over the next two months.