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J Tube Removed and I'm now Tube Free

Rickyr1219's picture
Rickyr1219
Posts: 54
Joined: Jul 2012

I've been able to maintain my weight without using the J TUbe so I went in yesterday and had it removed.  Very quick and simple and it was longer than I expected it to be when it came out.  There was like 6 inches of it that was actually in my intestine.  There was no pain with it coming out whatsoever and I just have to keep a bandage over the spot it was for a couple of days.  I'm posting this the night after removal and the hole has already closed up.

It feels good to finally be tube free with the J Tube being the last one to finally come out.

I have 2 or 3 cases of formula the pole that I hung the bags from,  a Backpack that was for the Enteral system I was being fed by and a few bags.  Does anyone know of a place where you can donate the extra stuff like this.  I guess I could drink the Isopur Formula since it is vanilla flavored but I'm enjoying real food too much right now.

paul61's picture
paul61
Posts: 1163
Joined: Apr 2010

Rick,

You will find once the carton has been opened that many medical facilities cannot take the formula but I have heard of people donating supplies like that to a local hospice organization. Glad to hear you are a free man. I hated that tube it seemed to always get caught in my clothes at the worst possible time. Glad you are enjoying regular food now.

Best Regards,

Paul Adams

McCormick, South Carolina

DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009 - Post Surgery Chemotherapy 2/2009 – 6/2009

Cisplatin, Epirubicin, 5 FU - Three Year Survivor 

Rickyr1219's picture
Rickyr1219
Posts: 54
Joined: Jul 2012

I have 3 boxes that the carton (boxes) have not been opened. There may still be some issue with a facility or someplace taking them though.  Just hate that they would go to waste if someone could use them.  I will check around in my area.

Hockey Wife
Posts: 15
Joined: Jan 2013

Hi Paul,

My name is Janet and although I have been visiting this site for sometime my first post was today. I have been following you closely because you were staged the same as my husband and went thru chemo post esophogectomy. We have also opted to do 6 months post chemo to hopefully give us lots of years left to raise our boys. Problem is the chemo has really done a number on my husband, so bad, he just doesn't know if he can continue. He has completed 7/12, not treated last week (#8) because he was so out of it. My question to you, should we continue? Dr. said there is no evidence that it is even helping, but no evidence that its not! Is it worth 2 more months of hell? Please let me know your opinion! Thank you! Janet

paul61's picture
paul61
Posts: 1163
Joined: Apr 2010

Janet,

I know continuing with chemotherapy when there is no clear evidence that it is helping is difficult. I did complete my recommended protocol with some minor modifications but I certainly had some doubts along the way.

I found some modifications and additional medications to deal with side effects helped me along the way. I struggled with dehydration, nausea, and diarrhea. I found that if I increased my nausea medications and took them BEFORE I felt nausea, got IV hydration two days after each infusion of cisplatin and epirubicin, and took lomotil every day BEFORE I got diarrhea it seemed to help.

Perhaps if you discussed your husband’s side effects with your oncologist he could recommend an approach to mitigate some of the issues. I know chemo is difficult with a compromised digestive system. It seems like six months is a long duration but not understanding his medications, dosages, and frequency of infusions it is difficult to compare time duration between survivors.

I am going to send a private message to your CSN mail with my contact information. I would be happy to talk to you or your husband about my experiences.

Best Regards,

Paul Adams

McCormick, South Carolina

DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009 - Post Surgery Chemotherapy 2/2009 – 6/2009

Cisplatin, Epirubicin, 5 FU - Three Year Survivor

 

birdiequeen's picture
birdiequeen
Posts: 329
Joined: Mar 2011

Sweet freedom!

 

So glad you are maintaining your weight and enjoying real food again.  Progress is good, but sometimes slow.

Lee Christensen
Posts: 41
Joined: Nov 2010

Good to hear that things are working well for you. Keep up the good spirit and things will fall into place as you go along.

joymitch
Posts: 16
Joined: Dec 2012

Congratulations on having the J tube removed!  I am wondering how long it was in.  My husband, Paul, will have surgery on February 19 and has been told the J tube may stay in 3-4 months.  Any advice you have would be appreciated.  Joymitch

South Side Steve's picture
South Side Steve
Posts: 26
Joined: Nov 2011

I know everyone’s experience in this area is different. My J-tube was removed 5 weeks after I came home from my Ivor Lewis surgery. I never used the tube after I was discharged from the hospital, but the doctor wanted to keep it in place for a while in case I did need it. Other than the time I didn’t have the tube’s cap on tight after a flushing, I didn’t have any major problems with it. The loose cap incident taught me the tube isn’t a one-way device. And yes, cleaning the contents of your intestine out of your shirt and sweats is as pleasant as it sounds. I double and triple-checked the cap after that experience.

The thought of needing a feeding tube along with all the other “lifestyle changes” the doctors warned me about had me a nervous wreck before my surgery. My surgery was in March of 2012 and I went back to work at my desk job 2 months later. Other than having to sleep elevated and avoiding spicy and acidic foods, my life is just like it was before surgery. My adjustments have been minor. It does take a little trial and error after surgery to determine what your new plumbing will tolerate, but I’m just thankful I had the opportunity to have the surgery. Good luck with the upcoming surgery and keep us posted on your progress.

Steve

T2N1M0 Stage IIB, DX 11/2011, Chemo/Radiation 12/2011 – 1/2012, Ivor Lewis surgery 3/2012

Rickyr1219's picture
Rickyr1219
Posts: 54
Joined: Jul 2012

My J tube was in for about 9 weeks and I should have been able to have it pulled after 8 weeks if I could have maintained my weight.  I had to use it solely for the first week I was home.  Hospital stay was 8 days then home feedings for a week or so until I could get the leak test completed and ok to eat again.  I was taking 7 cans/boxes of formula a day from IV bag into the J Tube and weahed myself off after I was allowed to eat again.  I mainly used it to stay hydrated because I was finding I could eat or drink but not both so I decided to eat and use the J Tube for flushes for hydration.  I also preferred to take my meds through the J tube as I felt they worked quicker/better.I also had Steve's problem and ruined more than 1 shirt with the cap coming off and soaking my shirt with intestinal fluid.  I ended up keeping a piece of tape over the end of it to make sure the cap didn't come off.  Other than that I really had no problems with the tube.  It didn't cause any pain and outside of just being a little more careful doing things that might pull on it I was not bothered at all by it. 

I sleep elevated and avoid the spict foods too.  I have been having some back pains like muscle spasms and wonder if it is because of sleeping on the wedge.  I can also sleep on my side elvated and my right side seems to be better than my left as far as not apsirating at night.

joymitch
Posts: 16
Joined: Dec 2012

Rick and Steve,  Thanks for the information on the J tube - especially the tip about keeping the tape over the cap!  It is encouraging to know that Paul may not need to tube for the 3-4 months we've been told.   Surgery will be at Fox Chase Cancer Center in PA on February 19.  So glad the two of you seem to be doing so well.  May God continue to bless you on your EC journey.  Joyce

Rickyr1219's picture
Rickyr1219
Posts: 54
Joined: Jul 2012

With my Ivor Lewis Surgery they have not told me to do post op chemobut my wife who has ovarian cancer is doing post operative chemo.  She started getting some numbness in her toes and a little in her fingers and it is still up for debate on wht=ether post op chemo is the right thing to do for her.  So fatr she has agreed to continue them but they will be decreasing the dosage to help with the neuropathy.

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