My PEG tube which I told 5 doctors was just "not right" and they kept saying, "It's fine" ended up a disaster. I went to the emergency room and the did a cat scan and found it wasn't even in my stomach any more. It was in my abdominal wall. No wonder it hurt!!

Now they say they need to put a J-tube in. I am in my 5th week of radiation and still swallowing fine. I don't even want another tube put in!! Does anyone know anything about a J-Tube that goes in your intestine? I've read it can have problems too that I don't need.

Bloop,

I don't know anything about the J-tube, but why can't the docs put in another PEG if they think you need a tube? My first PEG also had to be removed, for the same reason as yours(!), and I had a second one put in.

- Margaret

I have been on this site reading the trials and tribulations of these PEG tubes for over 3 years now and it ain't pretty from where I sit. I certainly don't want to start another war on the PEG vs no PEG but I had a nasal tube inserted (totally painless) in my 1st week post Tx and I kept it for 2 weeks and pulled it out myself (totally painless). It did it's job; it was easy to use; I could put anything into it including VHC; Feedings took minutes because I could jam that stuff down the tube as fast as I wanted; I never had any bleeding or wound problems because there aren't any and I never had any feeding problems, no acid reflux, no nausea, no bloating, no nothing. I could also take showers because all I had to do was to replace the taping at my nose if it got wet.

Now I read all the time that the N tube is meant for temporary solutions but in the scheme of things isn't our Tx really temporary? The more I see and read what you guys go through I just can't believe they don't start out with a N tube before they potentially put you guys through all this crap.

JM2C's

Bloop,
As much of a proponent for the PEG as I am, I think that at week 5 and needing a replacement, I would request the NG tube (and only if you begin to be unable to swallow) instead of dealing with another insertion into the belly. Your body is so stressed and depleted at this point, I would be leary of another procedure that required healing to the degree that a PEG requires.

JMHO, Deb

Bloop

JUST SAY NO. You can get through this TX without one. It is not easy but it can be done. While DavidCPA must be more circumspect as an administrator, I openly advocate declining the elective procedure of a PEG.
As far as I can tell, I am the one and only poster here who has done it both ways (a full ten weeks of radiation and chemo without a PEG, then had a recurrence which required surgery which made it impossible for me to swallow so PEG put in hospital or else they would not discharge me).
While your doctors and most everyone will pressure you into getting some kind of feeding tube, just remember it can be done without one. Whether you want to do it the hard way is a personal decision. What is most troublesome is that if your PEG gets any problem, Interventional Radiology does no followup since the assumption is that it's no big deal. Yours is not the only post of PEG problems and pains.
That said, mine is very distinctly a minority view on OCF and to avoid the usual flood of accusatory replies, let me concede that Brian has convinced me that the majority of OCF posters simply could not have done what I, David, and others did. I'm glad they had their life preserver, but I preferred to swim.
charm

Bloop,

I had a PEG and had it placed on the advice of my Dr. Looking back I think I could have gone through everything but the surgery without it.

It was a painful process and even more painful when in the hospital recovering from surgery the nurses pulled my PEG out on accident and had to have it surgically replaced...without pain medications or even a sedative.

On a fun note with a PEG you can still consume alcohol...with the added benefit of "cleaning" the tube If you have to have it there's no reason you can't make it fun, just don't mix with pain meds.

My husband had what is called a G-J tube. It was inserted surgically into the stomach and fed down into the jejunum, the part of the intestine just past the stomach. It is supposed to be better tolerated with less reflux. The first one came partially out on its own,after several months, the second one kinked and migrated back into the stomach. Both times it was replaced in radiology and he did not complain of any discomfort following these replacements or while the tube was in place. It certainly came in handy when he was unable to swollow medication and I was able to put them through the tube.

At this point in time, if you are still swallowing, I would not go for another peg. I made it through radiation without one even when swallowing became difficult. And as David says, there is always the NG tube. I had one after the laryngectomy for about 8 days and they are simple to use. It's certainly a much better solution if you are only going to need it short term. Not pretty to look at but definately painless.

Take care,
Eileen

I find all of these posts interesting. I wasn't much of a candidate for the tube without going thru malor surgery to lower my stomache back into it's cavity after having 1/3 of it unwrapped from my Esophagus. This discussion interests me highly because now they want to do the surgery to put things back in place so they can remove all of my tongue and all of my jaw and and then insert the tube and trach along with a few other procedures.

Bloop, I wish I had read this earlier. The same exact thing happened to me. While in the hospital my peg tube became dislodged and was in the abdomin wall. Same here with nobody believing I was in so much pain.

My tube was replaced with the same thing you are describing. If you are unable to sustain yourself with 3000 calories and 48oz of water per day then you need the tube. Its very similar to the peg tube with one handy exception. If you feel any nasuea, there is a bag that you can hook up to rid your stomach of whats bothering it. I actually like this better that the peg tube. I do have a tiny pinprick sized hole currently in mine so if you get this, request the most durable tubing otu there.

Please let us know what you decided.