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What next?? J-Tube came out...

JanBred
Posts: 42
Joined: Jul 2012

After telling my Dr. specifically that my J-Tube sutures are loose, she just shrugged it off telling me that they are fine. Well today while showering the entire tube fell out!! I called my Dr., and she told me to put it back in myself, but don't wait too long...can you believe this? Well, I tried to no avail, it started to bleed...so, I went to see her and she couldn't get it back in either, and sent me to surgeon who also couldn't. Now, I was told that I have to start eating more, well, I am having a hard time with food a month past my surgery..mucus comes up almost immediately after eating. I guess they think that all EC patients should be on full meal a month after surgery--not happening for me. I was told that all her EC patients lose 70#'s, and which I replied I cannot afford to do that. So, she said I have two choices..1. to have tube put in nose for feeding or 2. drink ensure or boost along with my food...well, I tried it to no avail. I'm just getting over pneumonia, and need some advice because I couldn't believe what she told me to do...Jan

bingbing2009
Posts: 179
Joined: Feb 2011

My feeding tube also fell out in the shower, but I was 3 months post-op. No way did my surgeon tell me to put it back in. He set it up with the hospital for me to go in the very next day and have another tube put in place under light anesthesia. I am totally intrigued at your doctor's response.
Sorry I can't help you other than to empathize with the tube falling out.

Melinda
DX October 2009: T3N1M0
November and December 2009: chemo (Cisplatin and 5 FU) and radiation
February 2010: Ivor Lewis surgery

JanBred
Posts: 42
Joined: Jul 2012

I'm only 33 days out of surgery and I need that nourishment. Mayo PA said I should not need the J-tube but full diet. Some people are on the J-tube for months, and they pull mine bacause it fell out. I'm not ready for full diet...I was weaned down to 3 cans of Jevity per day, and maintaining my weight...just because it fell out no one wants to deal with it...sucks!!

lenlee65
Posts: 47
Joined: Aug 2012

Hi JanBred. Sorry to hear you are having these J-tube problems. I had a few myself but mine were pre-surgery. Twice my J-tube came out before my surgery. The first time scared the you know what out of me but I went to a local emergency room and the ER doc replaced it with a Foley catheter of all things. Well the thing leaked like a seive so I complained long and hard and finally was told to go into the VA Medical center to get a new tube put in. The problem with these tubes is that when they come out (and they will), if another tube is not put in within a couple of hours, your small intestine starts to heal and the opening closes up. So anyway I go to the VA to get a new tube. And they tried to put a larger Foley Catheter in for me to use, I just looked at the Dr and said if you put this in and it leaks I am going to come back here and go Postal on somebody all because you are trying to save a couple of dollars. Well she left and another Dr came in talked to me just to make sure I wasn't going to do anything crazy and then sent for and put a J-tube, one designed for feeding in and I had it in until 2 days before my surgery and then it came out. This time when they put a Foley in I did not say a word because I wasn't using the tube much by then.

If you can tolerate the dairy and sugar, try mixing 2 scoops of ice cream, a pack of Carnation instant breakfast, a cup of milk and a teaspoon of instant coffee in a blender, blend well and drink in the morning. It is high in calories, vitamins, etc and will help with your weight a little bit. The coffee is optional of course and I always dissovled it in a very small amount of hot water before putting it into the blender. Hope this helps.

tmcjay's picture
tmcjay
Posts: 40
Joined: Jun 2012

The same thing happened to me . My tube fell out on the bedroom floor and I kind of freaked because I thought oh no, now what? I live in Canada where home nursing is free twice a week so I called my nurse and she said if I wanted it put back in to go to hospital immediately, if not , to not do anything. I was post op by months but was still receiving chemo and radiation. My radiation doc was most upset that I did not have the tube replaced but I managed fine. Trick is to eat very small meals high in calories, mashed potatoes, smoothies, soft pasta with cheese. I hated ensure but the carnation breakfasts are not bad. Puddings etc. The mucous seems to be part of it . It scared me as well but I learned to just cough it up into a kleenex and move on. The nutritionist I saw said not to worry about vegetable content at this point, the main concern is calories, so that's what I concentrated on. Small portions that are fattening. I did not lose more than a few pounds. This is just my experience, 13 months out from surgery and doing well. SFSG.
Hope this helps a little bit.

JanBred
Posts: 42
Joined: Jul 2012

Thanks!! The funny thing is this...I can munch on peanuts, cashews, almonds, but pasta and potatoes get stuck. Go figure?? I am not sure this PA I am seeing is qualified to deal with an EC patient.

NGC1514's picture
NGC1514
Posts: 44
Joined: Dec 2008

My J-tube fell out a couple of days after surgery and while I was still in the ICU. The surgeon decided not to reinstall and set me up for TPN - feeding via IV. When it was time to go home a few days later, the TPN was pulled and I was told I had to eat. My first meal at the hospital, the day of release, was no fun at all. Choked down a few bites, but that was it.

At home, my first meal was a single fried egg and I barely got half of it down. Ended up losing 16 pounds in the first 2 weeks at home, but I kept putting down calories every way possible and the weight stabilized. It took more than 5 months before I actually added a pound to my weight. I'm now at 168 lbs from the low of 146 and have been trying to reach 170 for years.

After watching people deal with tube feedings for months after surgery I feel myself fortunate in not having to go through the hassles. Not saying it's a bad thing, but I think my own recovery was accelerated by the need to eat. The advantage of a tube is the ability to pump in lots of calories.

I did the same thing by eating full fat ice cream several times a day.

Eric in Atlanta
DX 10/6/2000
Surgery 04/09/2001
Still hanging in.

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