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Feeding tubes

martaelisa's picture
martaelisa
Posts: 5
Joined: Oct 2013

Hello,

My mother has a feeding tube since last week, so far no weight gain.  What are the experiences regarding this topic from this group? Thanks!

paul61's picture
paul61
Posts: 1106
Joined: Apr 2010

I had a feeding tube after my Ivor Lewis surgery. I had what was called a jejunostomy tube or “j-tube”. This is a feeding tube bypasses the stomach and connects to the small intestine to provide nutrition and hydration for people who have difficulty getting appropriate nutrition and hydration by mouth.

My experience with a j-tube was that it helped me maintain my weight until I could get enough nutrition by mouth after my surgery. It took me a while to find the right “speed” setting for the pump to avoid nausea. I found that if the speed were set too fast I would wake up very nauseated in the morning. My initial feedings lasted about 10 hours during my sleep.

It took me about a month to recover to the point that I no longer needed the support of my j-tube. Some people have their feeding tube longer, particularly if they are undergoing chemotherapy.

Things we learned about the “j-tube” while I had it:

  1. Flushing the tube several times a day is important to keep it from clogging
  2. Medication can be crushed and dissolved in water and taken through the tube
  3. Avoid putting things that are “sticky” through the feeding tube
  4. If the tube is clogged try flushing with water first, if that does not work then diet coke sometimes works
  5. Be careful not to crimp the tubing during sleep (I always made sure the tube was on top of me and I did not have too much extra tubing
  6. Most people have some discharge around the tube entry site
  7. The area around where the tube enters the abdomen needs to be cleaned regularly to avoid irritating the skin

 I would not expect to gain too much weight with tube feeding, it is really designed to provide maintenance nutrition during recovery.

I hated the idea of the feeding tube when I found I had one after surgery, but it did give me valuable support during my recovery, and was easy to maintain once we understood how to manage it.

 If you post specific questions here you will find a wealth of experience on this topic.

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

 

martaelisa's picture
martaelisa
Posts: 5
Joined: Oct 2013

Thanks for the information and tips to manage the tube.  My mother had surgery in April to what appeared to be a bening neck tumor.  After surgery the doctor informed us that it was cancer.  She had 8 weeks radiation, her ability to swallow has decreased since radiation was completed.  She weights 100 as of yesterday.  The g tube was introduced last week, she is tolerating only 4 feedings daily (4 cans of Glucerna).  My father is the main caregiver, they live in Guatemala city.  She has wonderful doctors, however the level of technology specifically por testing procedures is not there. For example, she can not have a pet scan done.  The contrast is ordered from Miami, it has to be used whithin 4 hours of shippment in order to be active.  Her surgeon told me that by the time it gets to the airport the 4 hours limit is ready to expire.  She has a wonderful surgeon that she is able to call at 6 am on a Sat. Morning! 

 

Thanks for your message.  My mom's name is Nivea, she is a wonderful lady.  Has a great attitude about life and keeps fighting this horrible disease daily.   I am very proud of her.

Marta Ketter

JKGulliver
Posts: 82
Joined: Apr 2013

Marta,

     My husband had a three step treatment for esophagael cancer - chemo, chemo/radiation and surgery.  He is more than a month past surgery and he still has the tube.  It took about three weeks to work up to the full rate/hour of feeding.  The discharge and the resulting skin irritation were the main problems.  The tube feeding did not prevent my husband from losing weight during chemo/radiation.  In total, he lost about 25 pounds  However, it helped him to regain weight in the five weeks prior to surgery.  Post surgery, it is helping him to maintain his weight.  But, it is a tricky thing.  We found the best way for us was to count the calories.  Is your Glucerna 1.5 or 1.0?  We are using Jevity 1.5.  Four cans is 1000 ml, or 1,500 calories.  So, the goal for my husband, at four cans, is 500 calories by mouth.  As he reduces the number of cans, he tries to increase his oral calorie intake.  At four cans of Jevity, my husband had very little appetite.  So, it was tougher than one would believe to keep up 2,000 calories/day.  

      My husband is still 5 pounds lighter than prior to his diagnosis.  

      To protect the skin, you might go to see an ostomy nurse.  There are stoma wafers that can be cut to size that protects the skin directly under the J-tube wheel.  Liquid bandage also works for the skin near the entry site but not under the wheel.  Ask about Flex-Trak, which we still use.  It will hold the tube steady.  This reduces discharge and also irritation of the wound where the tube enters the body.  This wound can actually enlarge if the tube rubs too much against the skin.  The balloon can go right through the wound when it is not suppose to, if this happens.  Over time, the tube from the Glucern set that is inserted into the J-tube end can start to work itself out overnight.  There is a valve that you can get, which attaches to the end of the J-tube.  This holds the tube from the set very tightly.  We stopped having problems with the tube working itself out after we got a valve.  This valve is reusable.  You can wash it in the dishwasher.  So, we got two and rotated them each day.

      The issue we found with these J-tube items is that they are considered "wound" supplies, not J-tube supplies.  We had a hard time getting insurance to cover them.  None are hughly expensive.  But taken all together, over the seven months my husbands had the J-tube, it has added up to a noticable expenditure.

      Buenos suerte y buenos deseos para usted y todo su familia en Guatemala.

martaelisa's picture
martaelisa
Posts: 5
Joined: Oct 2013

Thanks for sharing your experiece with me. I am greatful for all the insight and recommendations. I will try to find the Flex trak you recommeded, that was an issue from the start. They do not have Jevity in Guatemala. The choices were Ensure or Glucerna.  Thye will complete another barium swallow in 4 weeks to see if her swallow has changed.  For now she cannot have food by mouth.  Thanks for your good wishes too.  Muchísimas gracias.

Marta

JKGulliver
Posts: 82
Joined: Apr 2013

Marta,

      I don't know if this will help you or not, but you can purchase Jevity on Amazon.com.  The problem might be the shipping.  I know Amazon ships to some foreign countries, but I do not know about Guatemala.  

      I also remember when my husband could not eat anything by mouth.  However, we found that he could take things that melted in his mouth.  Ice cream and peanut butter worked.  So did hard candy, like lemon drops.  Hard candy does not provide many calories and they are all sucrose.  But, there are times when every little bit helps.

     Su familia, especialmente su madre, están en los oraciones de nuestros.

martaelisa's picture
martaelisa
Posts: 5
Joined: Oct 2013

I found the Jevity in Amazon, but the shipment is another problem.  I have to order more pro stat which is another suplement high in protein.  I am hoping to take these items to her.  She had bad news this week.  We are copyng with the news, she is a fighther and she told me yesterday that she will not allow this illness to rob her of more happiness.  They found a mass on her vocal chords.  Thanks for your oraciones, las necesitamos mucho.

Marta

JKGulliver
Posts: 82
Joined: Apr 2013

All our best to Nivea.  

I did not know Glucerna was sold in a powder.  It must be awkward to use.  Yes, 2,000 calories a day should maintain Nivea's weight.  But if she wants to gain a pound a week, you should add 500 calories a day.  The accumulation of 3,000 about maintenance levels will results in a gain of one pound.  My husband is struggling to regain weight.  

Oraciones y buenos deseos.

martaelisa's picture
martaelisa
Posts: 5
Joined: Oct 2013

It has been a difficult time.  Had to go home since she had a tracheostomy performed.  Now gaining weight is even harder.  We rented a pump since continuos feeding seems better for her than bolus feeding.  She is now communicating by writing messages. Thanks for your message.

2013 Esophageal Survivor's picture
2013 Esophageal...
Posts: 5
Joined: Dec 2013

I came home with a feeding tube after 2 mos with one while I was in the hospital.  I did not gain an ounce, but I maintained.  When I was diagnosed, I weighed 195 or so (6'1").  My low was 125.  I have been off the tubes now for a few months, but gaining weight continues to be a problem.  I am currently at 140 on a good day.  I used to weigh myself every day, but have since thrown the scale  away.  I look very skinny, but I don't look "sick" any longer.  I have found that one can regain their strength, regardless of the weight.  I feel good, I have stamina, I'm happy.  It took eight rounds of chemo, 31 days of radiation, and three months in the hospital after surgery (Feb - May 2013, diagnosed July 2012), but as of yesterday, I am once again employed and ready to "rule the world"!  Have faith!  Good luck!

 

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