Awful acid reflux with PEG tube

PrimaVera

New member
Joined
Apr 23, 2020
Messages
7
Reason
PALS
Diagnosis
03/2020
Country
US
State
CT
City
Shelton
I have severe bulbar onset ALS that seems to be rapidly progressing. Dx’d 3/2020 and arms/shoulders and legs very weak.

I have had a PEG tube since 10/2020. Using Kate Farms 1.4 or 1.0. Last several weeks have had severe acid reflux. Tried Prevacid 10 mg twice a day; no impact. Now using 30 mg twice a day, but only lasts a few hours, especially if I try to lie down. Even 60 mg before bed only lasts 4 hrs.

Dietician said to pump feed at 120 ml/hr vs bolus, but that takes the whole day and night to eat enough, and stomach never gets a rest.

Bowels also seem much slower. Given Senna, but that only produces diarrhea. Was trying TUDCA for a few weeks, but escalated acid reflux. Off it about 8 days, but still no relief.

Any suggestions would be welcomed! Not taking anything by mouth due to swallowing issues.
 

Cony

New member
Joined
Aug 9, 2020
Messages
6
Reason
CALS
Diagnosis
09/2018
Country
US
State
CA
City
CALEXICO
My husband has had a peg tube for more than a year. I recommend blending. Eat fruits and lots of veggies, no artificial stuff, no gluten. Supplement with probiotics. He is fed with 60ml seringe. 3 meals 2 snacks.
 

Scotiaspirit

Distinguished member
Joined
Nov 21, 2015
Messages
208
Reason
PALS
Diagnosis
11/2015
Country
CA
State
Nova Scotia
City
Dartmouth
I get reflux with PEG Tube and take Pruclipride, Prevacid and Domperidone. I have gastroparesis aggravated by diabetis and ALS. TO help to empty my GI system, take Restoralax 17g, and Lactulose 30mls (bedtime). Prune Juice helps to ease bowel emptying as well. I have had several years of problems with gastric emptying with problems such as a paralytic ileus causing pseudo blockages in my bowel as well as pancreatitis. If the heartburn gets really bad, I purge (aspirate) the PEG TUBE. Sometimes it helps ease the pressure pushing up into the chest. When the diaphragm weakens, the stomach pushes up into the chest cavity more. It can be a very aggravating problem, and hope you can find something that will help ease the heartburn. Last year, I was on antibiotics 5x for stoma infections due to stomach acid trying to push out around the peg tube. Now I deal with a lot of fluid in my mid abdomen which is very uncomfortable.
 

Scotiaspirit

Distinguished member
Joined
Nov 21, 2015
Messages
208
Reason
PALS
Diagnosis
11/2015
Country
CA
State
Nova Scotia
City
Dartmouth
I get reflux with PEG Tube and take Pruclipride, Prevacid and Domperidone. I have gastroparesis aggravated by diabetis and ALS. TO help to empty my GI system, take Restoralax 17g, and Lactulose 30mls (bedtime). Prune Juice helps to ease bowel emptying as well. I have had several years of problems with gastric emptying with problems such as a paralytic ileus causing pseudo blockages in my bowel as well as pancreatitis. If the heartburn gets really bad, I purge (aspirate) the PEG TUBE. Sometimes it helps ease the pressure pushing up into the chest. When the diaphragm weakens, the stomach pushes up into the chest cavity more. It can be a very aggravating problem, and hope you can find something that will help ease the heartburn. Last year, I was on antibiotics 5x for stoma infections due to stomach acid trying to push out around the peg tube. Now I deal with a lot of fluid in my mid abdomen which is very uncomfortable.
 

nona

Senior member
Forum Supporter
Joined
Oct 1, 2018
Messages
500
Reason
PALS
Diagnosis
02/2015
Country
US
State
NH
City
New London
I have reflux also. I've slowed my meals (Kate Farms or Liquid Hope). I've tried PPIs with little effecr. My bowels are on a once a week schedule right now, even with senna. It's definitely better when they're empty. Do you sleep with your upper body raised? I'm at a fairly high angle and that helps at night. Also being upright while eating and for a couple hours after.

Edited to add that I have also reduced my meal size. I can't do a whole carton of Kate Farms and still manage to add recommended water. I split one carton between breakfast and lunch and have Liquid Hope for dinner over two hours and minimal water.i am small, and I'm also nearing the end of this journey so I don't feel compelled to force in more food than my digestive system can handle.
 
Last edited:

Kim Ordile

Member
Joined
Jul 5, 2020
Messages
12
Reason
PALS
Diagnosis
04/2015
Country
US
State
SC
City
Lexington
I had a hard time getting used to Kate Farms too. I added prune juice to my pills and warm water first thing in the morning. And switched to VANILLA, that made a big difference. There is so much fiber in each shake that it took time for my body to adjust. I have been able to stay healthy and regular after a rough start. Oh, one more thing, when my my family hooks up the tube and syringe , before they feed me, they let me Belly Burp lol. Releasing gas this way helps a lot. It is not very lady like, but helpful lol. I am praying for you.
 
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