Inability to Digest - How Common?

monica_sss

Hello,

My Mom just finished her 5 weeks of rads and weekly chemo this past Tuesday. She is really "feeling it" now. She is absolutely unable to keep down anything. She can swallow o.k., but I guess once the food hits the esophagus/stomach junction it just sort of builds and then has to come up. This morning she tried to eat 1/2 of a wafer cookie, and within 5 minutes it was back up. She can swallow water, but nutritional drinks are no longer working.

She has asked about getting a feeding tube and the Doctors seems determined to avoid that if at all possible. She hasn't eaten anything of substance for nearly 7 days. For those of you with tubes, how long did you go before it was determined that you needed a tube? She goes to the hospital 4 times a week for hydration.

She was throwing up before she started the chemo/rads (I guess because of the tumor at the junction) but now her stomach rejects everything, even in the smallest quantities. We tell the Doctors this but because her weight loss has been gradual they don't seem overly concerned.

Thanks for reading.

TerryV

I don't recall if....
Your mom is a surgery candidate or not, Monica. My husband, diagnosed as a Stage 3, had a Jtube placed Prior to starting Rads & Chemo. His surgeon felt this would be important because of the effects of both rads & chemo on the ability to eat. He kept the Jtube until 3 or 4 weeks after surgery. We didn't like to use it - it was the one visible hated thing, the only thing we "saw" that screamed cancer. BUT it is a life-saving option. Push hard for your mom to get a Jtube. She needs her nutrition.

A Jtube is placed in the jejunum or 2nd intestine. It's below the stomach (Gtube placement) so even if the person regurgatates, the nutrition is maintained. Gtubes would lose there. The down side to a Jtube is the feeding time is quite slow compared to a Gtube. The jejunum isn't used to being the 1st point to receive nutrition and so has a harder (slower) absorbtion period.

monica_sss

TerryV said:

I don't recall if....
Your mom is a surgery candidate or not, Monica. My husband, diagnosed as a Stage 3, had a Jtube placed Prior to starting Rads & Chemo. His surgeon felt this would be important because of the effects of both rads & chemo on the ability to eat. He kept the Jtube until 3 or 4 weeks after surgery. We didn't like to use it - it was the one visible hated thing, the only thing we "saw" that screamed cancer. BUT it is a life-saving option. Push hard for your mom to get a Jtube. She needs her nutrition.

A Jtube is placed in the jejunum or 2nd intestine. It's below the stomach (Gtube placement) so even if the person regurgatates, the nutrition is maintained. Gtubes would lose there. The down side to a Jtube is the feeding time is quite slow compared to a Gtube. The jejunum isn't used to being the 1st point to receive nutrition and so has a harder (slower) absorbtion period.

Thank you...
for the reply. She is supposed to have surgery in 5 weeks (although she has not had her post chemo/rads scans yet). We're hoping that the 5 weeks of chemo did what they were supposed to do.

She sees her oncologist on Tuesday and I will mention the tube again. Tonight I bought her Pedialyte and yogurt melts (I used them for my children as babies when they were sick). Hopefully she won't throw those up. Thanks again.

dwhite0002

INSIST on a j-tube. They are
INSIST on a j-tube. They are easily inserted and will make things so much easier. She will feel better immediately with the nutrition through the tube.

monica_sss

dwhite0002 said:

INSIST on a j-tube. They are
INSIST on a j-tube. They are easily inserted and will make things so much easier. She will feel better immediately with the nutrition through the tube.

Too late for tube...
This has been such a frustrating day for us. Mom finished the 25 rads and 5 chemos last Tuesday. This morning I drove her to the ER because she could not swallow her own saliva. She was continuously vomitting and had severe burning/chest pain. She seems so malnourished to me - down 20 lbs. in 5 weeks. They insist that she's past the point of getting a tube (since treatment is done) and that a tube presents its own set of problems. They want to train her to eat again, but nothing stays down. She's is inpatient tonight and probably again tomorrow. I just pray that she can swallow something without heaving minutes afterwards. Thank you so much for your reply, I just want to understand what others go through with EC.

TerryV

monica_sss said:

Too late for tube...
This has been such a frustrating day for us. Mom finished the 25 rads and 5 chemos last Tuesday. This morning I drove her to the ER because she could not swallow her own saliva. She was continuously vomitting and had severe burning/chest pain. She seems so malnourished to me - down 20 lbs. in 5 weeks. They insist that she's past the point of getting a tube (since treatment is done) and that a tube presents its own set of problems. They want to train her to eat again, but nothing stays down. She's is inpatient tonight and probably again tomorrow. I just pray that she can swallow something without heaving minutes afterwards. Thank you so much for your reply, I just want to understand what others go through with EC.

Keep talking to doctors
I don't understand "past the point of getting a tube". She not "past the point" of needing nutrition. I'm sure there is a downside to a Jtube, but in the situation your mom is in - the benefits are numerous.

Stay on the docs, don't take no for an answer. Insist they give you good reasons for their no's and then find another doctor and start the discussion again, and again, and again.

You can be your mother's best advocate. So sorry that this falls to you! Wish there were more we could do from here.

With much support and big hugs!

Terry

monica_sss

TerryV said:

Keep talking to doctors
I don't understand "past the point of getting a tube". She not "past the point" of needing nutrition. I'm sure there is a downside to a Jtube, but in the situation your mom is in - the benefits are numerous.

Stay on the docs, don't take no for an answer. Insist they give you good reasons for their no's and then find another doctor and start the discussion again, and again, and again.

You can be your mother's best advocate. So sorry that this falls to you! Wish there were more we could do from here.

With much support and big hugs!

Terry

thank you
Thank you Terry. I will keep asking about the tube. They are looking into giving her a port (she was using a by-day IV for her 5 weeks of chemo) for nourishment. Evidently you can give nutrition IV via a port but not through a daily IV? I don't fully understand this. I've asked several times about a feeding tube (and this is documented via email) but they keep wanting to hold off due to risk of infection and complications. We'll see what tomorrow brings. I'll try to rest tonight knowing that she has 24 hour care as an inpatient. I just feel like this is such a severe cancer, I'm so sorry for everyone having to go through this. Thank you for this "outlet" for me to vent.

dwhite0002

monica_sss said:

Too late for tube...
This has been such a frustrating day for us. Mom finished the 25 rads and 5 chemos last Tuesday. This morning I drove her to the ER because she could not swallow her own saliva. She was continuously vomitting and had severe burning/chest pain. She seems so malnourished to me - down 20 lbs. in 5 weeks. They insist that she's past the point of getting a tube (since treatment is done) and that a tube presents its own set of problems. They want to train her to eat again, but nothing stays down. She's is inpatient tonight and probably again tomorrow. I just pray that she can swallow something without heaving minutes afterwards. Thank you so much for your reply, I just want to understand what others go through with EC.

It is NOT too late for a
It is NOT too late for a j-tube. I do not understand this thought. It is not a G tube...very different. The j-tube can be inserted in no time at all...this is not about training to eat. This about surviving. You can still work on eating while the tube is in place. You need another opinion. I have been through this and in fact, still have a j-tube for weight management. Please insisit on this. She will be more comfortable if she has some nutrition. My latest tube placement is over a year old with no issues.

David
Hillsboro OH
37 yrs old
EC Stage 3 2006

monica_sss

dwhite0002 said:

It is NOT too late for a
It is NOT too late for a j-tube. I do not understand this thought. It is not a G tube...very different. The j-tube can be inserted in no time at all...this is not about training to eat. This about surviving. You can still work on eating while the tube is in place. You need another opinion. I have been through this and in fact, still have a j-tube for weight management. Please insisit on this. She will be more comfortable if she has some nutrition. My latest tube placement is over a year old with no issues.

David
Hillsboro OH
37 yrs old
EC Stage 3 2006

Update
They gave her a PICC and she will have to wear a 24 hour backpack for nutrition via IV. They really pushed back on the j-tube -- claiming infection again. They wanted to go the least invasive route given that she's supposed to have the surgery in about 4 weeks. Thank you again for your feedback and thoughts.

Luvs24

monica_sss said:

Update
They gave her a PICC and she will have to wear a 24 hour backpack for nutrition via IV. They really pushed back on the j-tube -- claiming infection again. They wanted to go the least invasive route given that she's supposed to have the surgery in about 4 weeks. Thank you again for your feedback and thoughts.

low immunity?
Maybe they are worried about the infection because after all the chemo her immune system is weakened. the PICC is probably the best option at this point. I know seeing her lose the weight is very scary, but if she can get her fluids and nutrition through an iv, she will get stronger.
We learned that you do have to ask questions and push for the answers until you understand it. At some point they will stay something that makes sense why they are not doing the j-tube. Keep asking though. You are her advocate. Write things down, from when she tried to eat, her reaction to it, does she have a fever, etc. This will help note any patterns.
The days start to run together so keeping a daily log, helps to see patterns.
Good luck,
Beth
Daughter of Roy
DX 6/2011 T3N1M0
Ivor Lewis 10/7/2012
NED and doing WELL - riding his Harley, had mcdonalds and is back to work as a husband for hire in his gated community!

mark krabbe

feeding tube
I had stage 3 esophagus cancer and went through chemo (including clinical trial),radiation, and surgery. I had my surgery about 6 months ago and I am doing fine now. At the end of my chemo and radiation I had about 3 weeks that I couldn't eat and couldn't get but just a few drips of anything to go down. I lost about 30lbs going from 180lbs to 150 and was in the hospital 2 times to get fluids. I was also told that they didn't want to do a feeding tube at that time and for me to keep trying to get down what I could and to try differant things and just sip them. I found that I kept a bad and sickening tast in my mouth most of the time and anything I tryed to drink made me sick and it came back up. At best I could sip on something but had to go real slow because only a few drips would go down at a time. If I drank to fast or took to big of a sip it came back up and I was thirsty so it was hard to go slow enough for it to stay down. I tried every drink I knew of and found some were better than others and seemed to have a strong enough taste to offset the bad taste in my mouth. Cold stuff did better as well. Orange flavored drinks seemed to work best for me. My wife froze orange cool aid in cubes making orange flavored ice cubes,put them in a blender so they were just orange crushed ice and this worked great! The flavor made my mouth tast better and it was easy to let disolve in my mouth and drink slow. I spent every waking moment sipping on this and it made a big differance for me. This lasted a few weeks and slowly I started to get more and more down until a week or so before surgery I was able to drink and even eat some again. They told me the problem was caused from radiation swelling the area and as the swelling went down it got better. I hope this works for you as well as it did for me.

dwhite0002

monica_sss said:

Update
They gave her a PICC and she will have to wear a 24 hour backpack for nutrition via IV. They really pushed back on the j-tube -- claiming infection again. They wanted to go the least invasive route given that she's supposed to have the surgery in about 4 weeks. Thank you again for your feedback and thoughts.

?
I don't see how a PICC is less likely to harbor infection...it is a direct line into the blood, as opposed to a j-tube which goes intot he small bowel.

IV nutrition works, but it is not as likely to gain weight as a j-tube.

I wish you well,

DW

Ginny_B

G-Tube is good!
My mom wouldn't be here if not for the G-Tube. The docs worked with foresight and put in the G-tube before she needed it. She needs it now! She did get a skin infection around the point of entry into the stomach. Treating with Antibiotics ever 6 hours (liquid), and triple-acting bacterial ointment that I apply every time I change her dressing (3x/day). Mom also has a PICC that was inserted before her first chemo. Hasn't used the PICC since 1/6/12 (last day of chemo).

I hope you get her some nutrition - the best way possible.

Tina Blondek

Your Mom
Hi Monica
I was a caregiver for my dad. He passed from EC in March 2010. He just celebrated his 2nd Anniversary in Heaven! I agree with the others, you must put your foot down and insist on the feeding tube. And, why 5 weeks for surgery? Shouldnt the surgery be sooner? Sounds to me like the tumor is what is causing the blockage still. This is exactly where my dad's was. He was not a candidate for surgery, you are lucky there. Plus, my dad's EC went to his liver. Keep up the good work and the research, learn all you can. Sometimes I felt like I knew more than the doctors! In fact, one time my dad's onc. asked if I was in the medical field because I was so knowledgable. Just did my homework! Keep in touch.
Tina in Va

JReed

Tina Blondek said:

Your Mom
Hi Monica
I was a caregiver for my dad. He passed from EC in March 2010. He just celebrated his 2nd Anniversary in Heaven! I agree with the others, you must put your foot down and insist on the feeding tube. And, why 5 weeks for surgery? Shouldnt the surgery be sooner? Sounds to me like the tumor is what is causing the blockage still. This is exactly where my dad's was. He was not a candidate for surgery, you are lucky there. Plus, my dad's EC went to his liver. Keep up the good work and the research, learn all you can. Sometimes I felt like I knew more than the doctors! In fact, one time my dad's onc. asked if I was in the medical field because I was so knowledgable. Just did my homework! Keep in touch.
Tina in Va

Tina - reason for 5 weeks for surgery after treatment
Our surgeon told us they want to get past the peak of radiation with is at about three weeks after rad is complete. Chemo continues work as well. They prefer to do the surgery at the 4-6-8 week mark because even though they can do it after - scar tissue begins to form making surgery more difficult - but want chemo and rads to have begin leaving the body. That made sense for us so Don' surgery will be about 5 weeks after treatment has been completed.

Judy