J-Tube Question

Is it normal for the area around the j-tube to hurt or does this mean the area is infected? My dad has been in pain since they inserted the tube about a month ago. He goes in tomorrow AM to get it checked out but I was wondering if anyone else experienced this pain. 

Hi Jasmine,  I think I may have already responded in part to this, but here goes again.  I did experience discomfort around the J-tube site.  Immediately following insertion, it was "stitched" into the surrounding skin.  The stitch itched and was very sore.  I also experienced bouts of constipation from the liquid nutrition.  The radiation made my tube deteriorate and eventually I had difficulty getting anything to pass through the tube so the doctor had to remove it and insert a new one.  When she put in the new one, they gave me a box of "patches" which hold the J-Tube in place.  The patches itch and are uncomfortable. I cleaned the site regularly with Q-tip or cotton ball and hydrogen peroxide. 

Remember, these things are all temporary.  That is what will get you and your Dad through the treatments.  Once the treatments and/or surgery (whatever he has) is over and they have the cancer arrested, he will feel better, they will take the feeding tube out, and he will be on the mend.  Just don't get discouraged.  God bless you!

thx for your response here as well as on my other post. your story gives me so much hope for my dad. may i ask what stage you were and how long your total treated lasted?

we still have a long journey ahead of us since my dad is currently doing pre-operative chemo now. once they feel the chemo is working enough to operate, they will do the gastrectomy, then more post-op chemo. 

Hi,  I'll be glad to offer any help/encouragement I can.  I was diagnosed in January of 2004 with EC Stage 2A T-2 (t-2 means they were pretty sure it had not gone through the wall of the esophagus).  On 2/25/04 I had a "small surgery" to insert the J-tube and chemo port.  I began chemo/radiation sumultaneously for 6-8 weeks the beginning of March 2004.  On May 25, 2004 I went in for the Big Surgery to remove 2/3 of my esophagus and 1/5 of my stomach.  I was in the hospital for 15 days.  For the next 3 weeks I felt pretty miserable, but I was on a lot of drugs so I don't remember a lot.  I began to really feel better in July, but didn't get feeling real good until the middle of October.  By Thanksgiving I was entertaining guests for Thanksgiving dinner, which I cooked myself.  The J-tube came out in October (I think) and they removed the port in December.  No discomfort to have either of them removed.  Recovery for me was slow but progressive.  I did not progress as fast as the surgeon's other patients for some reason.   My surgeon is now doing the minimally invasive surgery which was just a new procedure back then.  They are making a lot of advances.  Expect the whole thing from beginning to "feeling good again" to take 6 to 8 months.  From then on it is a progression of feeling better and better.

My quality of life is very good and a year after my surgery we took a 7 week trip through 22 states and home.  I swim, painted the second story of our house, wall papered our bedroom.  I rest a lot and need to sleep at a 30 degree upright position.  He will need a wedge for his bed, but might be most comfortable in a recliner at first.  See some of my other posts.  All in all, I am so grateful that this is no longer a death sentence.  There is always hope.  God bless you.  Let me know if I can give you any other tips.

I just stumbled upon a website about a Cancer Survivor that I thought was quite good.  He was treated at Sloan-Kettering in NYS. You need high speed computer though.

http://www.youtube.com/watch?v=mJ3V7f7RlqA 

Dear Doingfine,

Thank you for the link to the story about the gastroesophageal cancer survivor.  It was very inspiring.  My husband was diagnosed with stage IV in January 2005 and passed away on February 22, 2008 from this horrible disease.  He had the same symptoms that Mr. Frazzita had but I guess it was too late in my husband's case.  Makes me wonder if I did all I could to help Mike.  He was treated at a Veteran's Hospital with very good care.  He had the surgery first and then chemo, chemo with radiation and then chemo again.  I hope you continue with your great progress.  You are right, it is not a death sentence and thankfully Mr. Frazzita had the kindness to inform other cancer patients that they can survive this. 

Take care and God bless you,

Diane, Mike's wife

I am so sorry to hear of your loss.  It is a sad commentary to hear when someone is lost to EC.  Last year I wrote a personal letter to Ann Richardson, Former Gov of Texas in an attempt to give her some support and hope.  She lost the battle to EC also.  I lost my Dad to Bone Cancer (Multiple Myeloma) back in 1981.  He fought very hard for several years, but lost the battle just before his 80th birthday. 

My heart aches for the children that are in this war with cancer also.
Each and every survivor's story encourages someone else, but we also know that not every one will ultimately survive. 

I hope that you are doing well yourself.  I am sure you did do everything you could for your husband.  Each caregiver does so with much love and compassion and the doctors and nurses do all they can.  The rest is in God's hands and for some unknown reason sometimes he calls his children home, and sometimes it is prematurely.  God bless you.

 

On 7/4/2008 doingfine wrote:

Hi,  I'll be glad to offer any help/encouragement I can.  I was diagnosed in January of 2004 with EC Stage 2A T-2 (t-2 means they were pretty sure it had not gone through the wall of the esophagus).  On 2/25/04 I had a "small surgery" to insert the J-tube and chemo port.  I began chemo/radiation sumultaneously for 6-8 weeks the beginning of March 2004.  On May 25, 2004 I went in for the Big Surgery to remove 2/3 of my esophagus and 1/5 of my stomach.  I was in the hospital for 15 days.  For the next 3 weeks I felt pretty miserable, but I was on a lot of drugs so I don't remember a lot.  I began to really feel better in July, but didn't get feeling real good until the middle of October.  By Thanksgiving I was entertaining guests for Thanksgiving dinner, which I cooked myself.  The J-tube came out in October (I think) and they removed the port in December.  No discomfort to have either of them removed.  Recovery for me was slow but progressive.  I did not progress as fast as the surgeon's other patients for some reason.   My surgeon is now doing the minimally invasive surgery which was just a new procedure back then.  They are making a lot of advances.  Expect the whole thing from beginning to "feeling good again" to take 6 to 8 months.  From then on it is a progression of feeling better and better.

My quality of life is very good and a year after my surgery we took a 7 week trip through 22 states and home.  I swim, painted the second story of our house, wall papered our bedroom.  I rest a lot and need to sleep at a 30 degree upright position.  He will need a wedge for his bed, but might be most comfortable in a recliner at first.  See some of my other posts.  All in all, I am so grateful that this is no longer a death sentence.  There is always hope.  God bless you.  Let me know if I can give you any other tips.

I just stumbled upon a website about a Cancer Survivor that I thought was quite good.  He was treated at Sloan-Kettering in NYS. You need high speed computer though.

http://www.youtube.com/watch?v=mJ3V7f7RlqA 

i just had similar surgery its only been 3 months and i was getting pretty discouraged that i am not eating too much and no appetite yet. thanks for the encouragement that this will take more time than some people. i had my neck cut to remove the esphogus and then i had a fistula on my neck so its taking so long to heal, i had my throat stretched twice still can't eat meat or bread too good, on j tube still, and i can't drink boost or ensure it goes right through me.so i can't gain any weight. well thanks for the encouragement. lyn