New Member

Bob906

Just became new CSN member… Awaiting J-tube removal and was wondering if anyone out there has any info on what to expect? Also, like to hear from more experienced about meeting on-going nutritional needs...

BMGky

You will hear from others
I have missed your prior posts so I don't know if you have let other board contributors know you diagnosis, your stage, where you are in your treatment, where you are located, etc. If not, these are important things to provide. There are so many people on here who can be of help.

My husband was diagnosed in December 2009. He was first diagnosed Stage IIB but after surgery Stage IIA with no node involvement. He had the Ivor Lewis procedure in April 2010. He had his two year scan with No Evidence of Disease or NED.

He had several challenges during treatment and post op; however, he is working fulltime and enjoying every minute. We are most humble.

Please continue to post and let everyone know how you are doing and ask questions. Someone will have a response.

BMGky

Guigna

J tube removal
they were all set to remove my husband's J tube but then started him on chemo. he quickly lost all the weight he had gained. So now they're not in any rush to take that J tube out, even though he's eating a lot better than he has since getting out. He continues to increase the amount he can eat ever so slowly. even on chemo..
THey said don't rush that J tube out if you're having weight issues. so we just decided to use it to our advantage.

and about meeting nutritional needs; it about drives us crazy. What used to be effortless is now a big hassle. not enough salt! not enough water! increase your protein! it goes on and on. I make my husband a shake every morning and he eats 4 meals a day plus snacks.

JReed

Guigna said:

J tube removal
they were all set to remove my husband's J tube but then started him on chemo. he quickly lost all the weight he had gained. So now they're not in any rush to take that J tube out, even though he's eating a lot better than he has since getting out. He continues to increase the amount he can eat ever so slowly. even on chemo..
THey said don't rush that J tube out if you're having weight issues. so we just decided to use it to our advantage.

and about meeting nutritional needs; it about drives us crazy. What used to be effortless is now a big hassle. not enough salt! not enough water! increase your protein! it goes on and on. I make my husband a shake every morning and he eats 4 meals a day plus snacks.

Thanks for the info
Thank you for this information. Don is having the THE surgery on March 22 and Doc has said that he intends to put in the tube for Don - I cannot remember what he called the tube. We are expecting some challenges with his new plumbing arrangement and the information we read from others is so helpful.

Captdave called Don tonight and that was so nice. I just love everyone on this site - thank you for being here.

Judy & Don

TerryV

"Welcome" Bob
So sorry that you had to find us, but delighted that you did. You can't find a more knowledgable group of people, caring, compassionate and informed. So much of the Internet information is outdated or just plain too scary to bother with.

My husband, Nick, had a Jtube placed prior to rads & chemo and kept it until approximately 21 days after surgery. He was diagnosed T3N1M0 on May 19, 2011 and had a THE on 09/08/11. The Jtube was our "visual" of the hated cancer, so we transferred our dislike to it. Yes, it was a Godsend, yes, it provided needed nutrition, but it was a leash and a constant reminder. Off my soapbox - you're asking about life after the tube.....

Have you been eating while you've had the tube? Have you had any problems with that? If you haven't experienced problems with eating while on the tube, you shouldn't have many after. Yes, there are changes, but changes are minor compared to what is asked of some. Initial meals for Nick were coffee cup sized. It didn't take much to fill him. He stayed with pretty bland foods for the first month. Oatmeal has been a staple, so was ice cream initially. He did avoid spicy foods at first. Several daily small meals or what you would have considered large snacks before surgery were his meals.

We are coming up on 6 months post surgery now. Eating is finding a bit of a norm. He has sadly become a bit lactose intolerate - no milk, no ice cream, but cheese, cottage cheese, and gravies are fine. He's also found that sweets on an empty stomach are a bad idea. All of the above will lead to severe stomach pain and ocassional diarrhea - dumping in other words. Seconds are a thing of the past, but Nick is able to able to eat most of a plateful.

The new stomach is finicky. Nick has expressed frustration because he can't tell sometimes if he's getting sick or if he's hungry. The stomach isn't really clear when expressing itself these days. But gas is still there. So Gas-X is a must. Nick keeps a Gas-X melting strip in his wallet for those times when the stomach is a bit more vocal than normal.

Bowel movements are different as well. Do not ignore or delay when you get an indication "to get there". Some days there is time, some days there isn't..... There's no rhyme nor reason to which day will be which. Not sure if this happens to anyone else or not, but Nick gets dry heaves sometimes when he's having a bowel movement. Not every time, but sometimes.

Life does change, but the new normal isn't so bad either. And the best part is - the word "cancer" isn't part of our daily life any longer. Do I still ask him every day how he feels? Absolutely. But I hope I did that before the cancer too

Ask away Bob. We'll answer as best we can. You can be sure that someone here has walked the same path as you. We are all a statistic of one, but the road is getting a fair bit of traffic so there will be similarities. Make sure that we know your story as well. When and where was your surgery? Do we know what stage you were? Who are your doctors? Truly, we aren't nosy people by nature, but information helps.

With hugs of support to you and your family!

Terry
wife to Nick, age 48
dx 05/19/11 T3N1M0
28 rads / 2 weeks inpatient Cisplatin & 5FU
THE 09/08/11
Clean Path 09/13/11

paul61

Bob,

I was very surprised when I had my j-tube removed, it was done in my surgeon's office, and there was really not much to it. He just clipped a couple stitches that were holding it in and pulled it out. It put a small gauze bandage over it and said it would heal in a couple of days and he was right. I felt no pain when it was removed, just sort of a "pulling" sensation when he removed it.

Like most people I was happy to see it gone.

Best Regards,

Paul Adams
McCormick, South Carolina

DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
Two year survivor

Life may not be the party we hoped for, but while we are here we might as well dance!

Luvs24

paul61 said:

Bob,

I was very surprised when I had my j-tube removed, it was done in my surgeon's office, and there was really not much to it. He just clipped a couple stitches that were holding it in and pulled it out. It put a small gauze bandage over it and said it would heal in a couple of days and he was right. I felt no pain when it was removed, just sort of a "pulling" sensation when he removed it.

Like most people I was happy to see it gone.

Best Regards,

Paul Adams
McCormick, South Carolina

DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
Two year survivor

Life may not be the party we hoped for, but while we are here we might as well dance!

Nutrition
My 64 year old dad had his feeding tube taken out at the hospital, ten or 14 days after the Ivor Lewis Surgery. The biggest frustration he has to deal now is eating, finding the right combination of nutrition. It is not consistent. An amount that he can eat one night is not the same as the next night or time.
He had a problem with his pyloric valve that wouldn't relax enough to let enough food pass so he got full up to his throat. He had to have a liquid diet. So tough, how do you get enough calories and nutrition in when you can't have more than 1 cup at a time. And he couldn't do the nutritional drinks. They messed with his system awful!
Lots of great links here though to help with ideas.
Good luck and God bless,
Beth
Daughter of Roy T3N1M0
Ivor Lewis 10/7/12
NED and loving life!