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What are your thoughts about feeding tubes?
Many pALS rely on a feeding tube for their nutrition. Some decide to forgo them entirely. Opinions abound.
Do you, or your pALS rely on a feeding tube, and would you recommend it to other patients? If you’ve decided not to have one, tell us what influenced your decision.
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11 Replies
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Unfortunately, I had a horrible experience with the gastrointestinal doctor. He placed a PEG tube under general anesthesia. We didn’t get care instructions or how too information, before leaving the surgery center. Unsuccessful at 5 tries, I made an appointment with the physician. He said it must not be working based on my previous gastrointestinal surgery. He then pulled the PEG tube in the office and patched it with a 4×4.
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Oh my! What an awful experience.
What do you do now for nutrition?
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Three years in and I still eat normally. I had a feeding tube put in about a year ago. We put in a high caloric formula in most nights after dinner. So, well use to it at this point. When we put water through it for cleaning purposes, its like a chill in my stomach. Whew! At any rate, we feel prepared for the future when the feeding tube might be my only way to have nutrition.
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Thank you for sharing your experiences, John. Please keep us updated if you discover any tips or have any (hopefully not!) … changes.
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I got my tube several years ago before I needed it.
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Any tips you can share re: living with a feeding tube prior to needing to use it?
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I found that meticulous attention to changing the dressing every day kept the site healthy. You should flush the tube with distilled water daily and have the tube changed every 3-5 months depending on what your healthcare team recommends. We use a Drawtex pad instead of gauze around the tube as it is more absorbent and less abrasive to the skin. We have an excellent wound care NP who has helped us a great deal.
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I had my first tube put in just before Covid hit. It was placed to help with taking pills. I was still able to eat. As ALS progressed (my diagnosis was January 2017), my ability to eat worsened. At my annual check, it was decided that I should begin taking supplements via the tube. That was May 2024. Since then I had the original tube replaced as it was really long. The replacement tube fell out about 6 months later. It was replaced and that one too fell out. I knew it was getting ready to so I called the GI’s office to get a new one placed. Before I could get to that appointment it fell out. I was told to go to the ER. The PA couldn’t get one in and told me to come back the next day to have the radiology department put one in. Finally—success! I’ve learned 2 things:
1 – If the tube falls out, get to the doctor or ER quickly. It’s more difficult putting one in the longer you wait.
2 – Tubes are recommended to be replaced every 6 months or so if used for meds and supplements.
My husband and I don’t remember anyone advising us of those two things.
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Our pALS gets all of her medicines, liquids, and nutrition via feeding tube.
Once you get used to it, its not difficult to use. Get training on how to use everything involved. Switch to a low profile g-tube as soon as possible. They last a LOT longer, and the feeding tube can be changed by the caregiver. Google search avanos 8140-18-3.5 to see the kit including the part that goes into the body (which is OTC – no doctor note needed). We also use mic-key bolus feed extension set (with enfit connector) and Dale ACE Connector with ENFit connection. The Dale Ace allows you to connect to the extension set once per feeding (allowing you to connect and disconnect the gravity bag and the syringes used to input liquids and ground pills). United Healthcare Advantage covers the cost of our bags, syringes, extension set, ACE connector and formula! -
I had a feeding tube put in about six weeks ago. The surgery went well, but it took a week before I felt well enough to start feedings regularly. I was given little instruction on caring for the feeding tube and had to make adjustments along the way to make this whole endeavor worthwhile.
I only use gravity feedings and picked up a device called a free arm that holds the syringe in place. I also purchased an elastic band that I can use to hold the tubing in place so I don’t have to tape the tube to my body after each feeding.
My feeding are easy and there are no complications. Overall it takes a total of 39 minutes to complete 2 8 ounces of Jevity (by Abbott). I will do two feedings a day and eat by mouth for dinner.
I’m happy a had the surgery before it was medically necessary as it has arrested my weight loss and given me more energy throughout the day
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My husband can still eat, with difficulty, but is in pretty late stage of this, only has the use of his right hand now. My question is, could an anesthesiologist come on here and talk about the point at which they will even do the surgery? My husband is now using the b-Papp breathing assistance at night, speech is difficult but still doable. The last visit we had with the Pulmonologist, that Dr said it’s too late now, no anesthesiologist would be willing to put him under. He said it’s a big operation, depending where it’s placed. By the way he’s had this disease since 2018, although I would put it at 2014 or so.
Thanks all,
Dianne
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