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Tips for adjusting to living with a PEG (feeding tube)
According to an article in ALS News Today, “Around 85 percent of people with amyotrophic lateral sclerosis (ALS) — experience dysphagia, or difficulties in swallowing. These problems usually occur in the later stages of the disease… If swallowing becomes too difficult, tube feeding may be considered. Patients can still eat normally, but tube feeding offers an additional option.”
If you, or your pALS has a feeding tube, what suggestions or tips can you pass along to those who are in the early adjustment stages? Has having a feeding tube been a good decision for you? What considerations do you suggest others should ponder before undergoing this procedure?
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26 Replies
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Here is a video from our ALS patient columns writer, Kristen Neva: https://youtu.be/BHf0N0Bup1Q
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I have bulbar onset ALS and my first symptom was dysphagia, followed by speech problems. I needed a PEG tube early in my course and now use it for all of my nutrition, eating and drinking minimal amounts. Having the tube placed is done under anesthesia, but doesn’t involve any incisions. I wanted to swim during the summer and put off having the tube placed until my pool closed for the year. Once it has been in for a couple of months it can be changed to a Mic-Key tube and then swimming is allowed and it has a low profile which isn’t seen through your clothes.
For me it has been a blessing since I was choking so often, I am sure I would have had pneumonia by now without it.
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My breathing has gone down below 50 and the ALS Doctor wants my to get the PEG. I have a appointment with the Doctor to do the surgery next Friday. So if anyone have any tips on this feeding tube. Thanks to everyone
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My feeding tube was installed by a General surgeon 2 months ago after a failed attempt by interventional radiology due to my abdominal anatomy. In the prep for the ÌR procedure they instructed to drink a bottle of contrast, which I couldn’t do because of my bulbar als. On the day of the procedure they pumped me full of contrast. This lead to severe constipation. In short, I wish I had gone directly to the surgeon. Being 2 months out, all nutrition is via tube. The only complications I have had is making sure I get enough calories and right now I am battling thrush in my mouth which I read is due to the lack of oral intake. Best of luck in your decision making!! Lois
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Well I had a meeting with a Doctor for the PEG. He gave 3 choices. One was a tube going down my nose. After that I couldn’t hear anything else. We left and I was crying. I told my husband that if they can’t just do the PEG then I am not getting anything. I want quality of life. Doctors just don’t understand what we have been through already.
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I understand the fear of a peg tube. In my opinion, G-tube inserted into stomach is preferable and the doctor should have lead with that. Second choice would be the J tube and lastly the nasal tube. You can research the differences. Not easy choices.
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Get a peg sooner rather than later, even if you can still swallow. And as suggested above, after a couple of months get a mic-key. Our recommended supplement is Kate Farms Peptide 1.5. a non-soy-based supplement with excellent vitamins and minerals and each carton is 500 calories. And for hydration, my wife consumes a combination of gatorade and pomegranate juice. And all meds are mixed with water and given through the peg.
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My wife was diagnosed with ALS in 2017. Early on, she lost her voice and the muscles surrounding her mouth, and she could not swallow, so we needed to go to a PEG feeding tube. All her meds are crushed and we use a syringe into the feeding tube. Her formula is IsoSource 1.5, (250 mL per carton) fed by gravity feed bags connecting to the feeding tube. She has had to change her PEG feeding tubes twice due to issues with connecting to the gravity feed bags. Unlike syringes, which go quickly in and out of the feeding tube, a slow drip from the gravity feed bag is required with her formula to prevent stomach issues and therefore a tight connection is necessary. So it took a while to find the right connection between her PEG feeding tube and the gravity feed bags.
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Is there any point at which the surgery for a feeding tube can no longer be done, like if your breathing goes below a certain number, or can it be done at any time?
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Kathy – doctors are cautious to do PEG surgery when the patient’s lung capacity falls below 50%. That’s because having a low lung capacity is a high risk when under anesthesia. So, it is a big decision whether or not to get the PEG early – – even though no swallowing issues exist or, wait until the last minute when swallowing is impossible (and surgery is rushed).
This is a conversation that each pALS should discuss with their physician.
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Kathy, my wife had a feeding tube placed in her stomach 2 months ago. They did it just using a local. It was scary for her when they said they wouldn’t put her under but she did not feel anything.
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Thanks Dagmar. I want to try to avoid getting a feeding tube if possible. I suppose this is up to each patient and that they cannot be forced to get one. Thanks for your post.
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I got a GJ-tube in December 2020. The formula I was sent home with was not right for me. Once I started with Kate Farms Peptide 1.5 formula, I started feeling stronger, my reason for getting a feeding tube. I was going downhill, and every time I had a meal that I could swallow, I felt stronger the next day.
I can still talk, chew, and swallow. And I can walk with assistance, and climb stairs slowly.
I got the feeding tube as my entire day was spent trying to eat food that would not choke me, swallowing water to clear my throat until I felt overloaded with water. I got a GJ-tube as my stomach is slow, and I have reflux. I use the jejunum tube for all feedings.
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Hello my mother has bulbar ALS and 6 months ago she had peg tube connected to her stomach. At the beginning the formula was disturbing her stomach, causing pain and diarrhea. We change the formula to jevity . All the medication has to be crushed. If you reach the point of chocking your food , it is critical and having PEG feeing is the correct decision.
She adapted well now and her weight is stable .
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I had a PEG feeding tube put in a month ago even though I can still swallow at this point. I had a breathing test done and I was at 67%. My doctor here (Canada) said I need to get it done before it drops below 60% or they won’t do it. I don’t use it right now except for flushing it out daily but at least I know it is there when I need it instead of constantly worrying about my breathing status. My wife built me a holder that I wear around my neck and it holds the tube in place in front of me instead of just hanging down.
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My wife had the PEG inserted in April after she couldn’t take in enough food and was losing weight. It was an emotional experience but we adjusted. She started with Jevity 1.5 with a gravity bag but it was taking 90-120 minutes per meal. After a few months we switched to Kate Farms 1.0 and adjusted the amount to provide the same calorie count as the Jevity. It might be too much for some people. Now it only takes 20-30 minutes for each meal.
We also are adding 1 tablespoon of Avacado oil once a day. It is 330 calories and has helped my wife even add a pound or two.
Lastly, we crush all her medications into a fine powder using a pill crusher with a container and spin screw down top. Then I dissolve them in a syringe worth of warm water to prevent clogging.
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I recently got my feeding tube. My supine vital lung capacity was in the 60s, and I wasn’t able to get adequate hydration, because I choke easily on liquids. I decided to move forward with the feeding tube even though I can eat real food without choking.
The surgery was not a big deal, and the tube is not as annoying as I thought it would be. They sent me the IsoSource, which I didn’t like. I requested Kate Farms formula, which is much better. Both formulas made me feel so full that I couldn’t eat solid food, so at this time I only use the tube for fluids. I am taking 30 grams/day of L-serine through the tube. I dissolve it in warm water and have had no trouble with the tube plugging up. When I was taking the formula, it got plugged a few times. I flushed with club soda, and it took care of the problem. I am happy that I got the tube now, so I don’t have to worry as much about my FVC score making the surgery a risk.
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First, I am thankful to have this ability to communicate with one another as a resource and support.
I just got my PEG tube six weeks ago with conscious sedation (not really a local). Prior to that I had continued to lose weight fairly rapidly, exceeding a loss of 10% of my weight about six months prior to the surgery. I was never a heavy person, but I was within about 10 pounds from an “underweight” BMI. I had to come to the realization that I needed to undergo the surgery while my lung capacity was still okay (that too has been diminishing), even though I had only begun to have some difficulty swallowing. I just had no appetite. I am able to tolerate Jevity and I am still able to get nourishment orally. I plan on trying to eat for pleasure as long as I can, although swallowing is becoming more of a challenge. That is the “beauty” of the PEG tube (if there can be such a thing when talking about my new appendage).
The reason to have it early on is that surgery should be performed while you are still in good shape to have it done. To be blunt, insertion of the PEG tube before it is too late because of significant weight loss or other loss of function (like diminished vital lung capacity due to a weakening diaphragm, which I am also experiencing) is so important. There are things we cannot predict with this disease, but there are certain losses we are all going to experience and if you can help yourself ease through those losses, then it is worth considering.
I want you to know had also avoided having it done, until I realized that my ALS team (we are fortunate to have an ALS Center where I live) knew better than I how this disease progresses, and that it would not have been strongly urged for my consideration if I did not need it or at the least would benefit from it. Because of my career as a medical malpractice attorney, I also feared the morbidities (like peritonitis, infection around the site, etc.) which can be associated with any surgery involving the stomach and abdomen. After speaking to friends who are in the nursing field, I put my concerns aside, again knowing that my team was not recommending it without reason and realizing that the morbidities are likely not going to occur.
So I encourage you to consider it; the management of the tube is not as dire as I feared. It is my birthday today, and I intend to give myself the fighting chance to have many more. I do wish you all the best in making your decision, because in the end, it is your decision to make.
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Daniel,
Thank you for your post. I will consider it. Happy Birthday and best wishes to you.
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My feeding tube was placed in October 2019, due to weight loss,complete lack of appetite, and fatigue from trying to eat. At the time I was already almost totally dependent on a Trilogy ventilator, so my gastro doctor declined to attempt the placement. Instead, my neurologist arranged for an interventional radiologist to perform the procedure. I was able to wear my breathing mask the entire time. Since then, I have had it replaced twice, due to it just “falling out”. My health care provider does not offer the mic-key, so I currently use a baby’s pacifier holder to keep it from hanging. I have regained almost 10 lbs in the last 15 months. I still eat small amounts of soft foods to supplement the 1300 cal (4 x 325) daily diet of Kate Farms. I have had periods of gastric distress, but overall am very happy with my decision. It relieved the daily stress of trying to take in enough calories to maintain a healthy weight.
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As posted elsewhere, has anyone had experience with a barium swallow test? Is so, was it difficult and also did it help with treatment? My ENT with my ALS recommends one and possible esophageal dilation to help with swallowing as time marches on. Currently I can still drink fluids and eat ( slowly, small bites, etc. ). Have some mouth/ tongue problems currently minimally or moderately affecting eating, speaking.
Thanks to all! -
The swallow test did provide useful information. My speech therapist requested the rest for me and she could see where the food was getting stuck and offer some suggestions about how to clear the blockage.
The process is easy and painless.
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Has anyone had their feeding tube replaced. I am very concerned because 6 months is up in March. They replace it at 6 months. I was not put under when they did the tube because my breathing was below 40. It was very painful not being under awake through it all. So how painful will the replacement be. Take care everyone. Let me know if anyone has it replaced.
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I have some questions about getting the feeding tube. How long past your procedure time did you have to wait? Did you have anesthesia or not? Were you kept in the hospital until the next day or did you go home the same day? Were you sent home with formula or not? Do you feel you received adequate instructions about how to use and care for the tube? Were there any conflicts about who was supposed to provide your care? Thanks so much!
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Thank you everyone for sharing your experiences and opinions.
Here’s another good resource for anyone considering having a PEG (feeding tube): https://www.youralsguide.com/feeding-tubes.html
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